______________________________________________________

Multiple System Atrophy News - November 2003
______________________________________________________

Table of Contents

1. SUPPORT GROUP NEWS
a. REMINDER: Book Now to Attend the San Diego MSA Support Conference
December 5-6, 2003

2. MULTIPLE SYSTEM ATROPHY RESEARCH NEWS
a. FXTAS and the Multiple System Atrophy Connection
- Read the in-depth article which explains this newly discovered
genetic connection between MSA and grandparents of children with
Fragile X Syndrome.

b. FXTAS May Account for Some Case of  MSA
- Four studies explore the newly described Fragile X-Associated
Tremor/Ataxia Syndrome (FXTAS) and its possible association with some
cases of MSA

c. Fragile X-associated Tremor/Ataxia Syndrome (FXTAS)
- Read all about this newly defined disorder

3. CLINICAL TRIALS ACCEPTING MSA PATIENTS
a. Droxidopa in Treating Patients With Neurogenic Hypotension

4. ODDS AND ENDS
a. Shults is recognized for Coenzyme Q10 Studies

______________________________________________________


1. SUPPORT GROUP NEWS

a. REMINDER: Book Now to Attend the San Diego MSA Support Conference
December 5-6, 2003

I have my flights booked and I am looking forward to meeting many of
you who I've been emailing and chatting with for many years.  This
will be my first ever MSA National Support Conference.  Unfortunately
for many of us who had planned to attend the Boston conference in
September 2001 the events of 911 cast a shadow over our plans causing
that event to be postponed until May 2002.  Unfortunately I was
unable to attend then but did manage to meet many from the Boston and
New York city areas at their local support group meetings in October
2002 .   I hope to see many of you in San Diego this year.

California here I come!

Hugs,
Pam
MSA-News Editor

-----------

MULTIPLE SYSTEM ATROPHY/SHY-DRAGER SYNDROME SUPPORT CONFERENCE

DEC 5-6, 2003 SAN DIEGO, CALIFORNIA

SHORT NOTICE!    MAKE RESERVATIONS NOW!

FEATURED SPEAKERS:

DR. CLIFFORD SHULTS - University of California San Diego, North
American MSA Study Group
DR. PHILIP LOW - Mayo Clinic, Rochester, MN, North American MSA Study
Group
DR. ROBERT FEALEY - Mayo Clinic, Rochester, MN, MSA Physician

LOCATION:  Holiday Inn Mission Bay/Sea World Area I-5 and Rosecrans,
3737 Sports Arena Blvd., San Diego, CA
http://www.himb.com

A very limited number of Handicap rooms are available.  All room
reservations must be made no later then November 15th.  For
Room Reservations call:  Mr. Jeff Heimbach, Reservations
manager 619-881-6112. Tell him you are with the SDS/MSA Support Group.

Head count for meals is a must!  E-mail Don Summers
Don.Summers@...
with the number of people for each food event; Friday evening's
registration/social hour, Saturday breakfast, snacks and lunch.

Complete agenda available at
http://www.shy-drager.org/Calendar_of_Events.htm
There is no charge to attend this event, donations appreciated.

The SDS/MSA Support Group Inc.
Don Summers, President
Email: Don.Summers@...
2004 Howard Lane
Austin TX
USA 78728
Phone: 866-737-4999 (toll free)
http://www.shy-drager.org

______________________________________________________


2. MULTIPLE SYSTEM ATROPHY RESEARCH NEWS

a. FXTAS and the Multiple System Atrophy Connection

TREMOR, ATAXIA, AND DEMENTIA-THE EXPANDING ROLE OF FMR1 IN NEUROLOGIC
DISEASE
by Richard Robinson

Read the full article at:
http://www.neurologyreviews.com/jul03/nr_jul03_tremor.html


b. FXTAS May Account for Some Cases of MSA

Tremor-Ataxia Syndrome From Fragile X Premutation

Four studies explore the newly described Fragile X-Associated
Tremor/Ataxia Syndrome (FXTAS) and its possible association with some
cases of MSA. FXTAS occurs in individuals with moderately expanded
forms of the gene FMR1, which, when fully expanded, is responsible
for fragile X mental retardation syndrome. The normal allele contains
a CGG repeat of less than 40 units. The intermediate or "gray zone"
length is 41-55 repeats. The premutation length is 50-200 repeats;
carriers typically have children with highly expanded alleles (> 200)
who develop fragile X syndrome. Approximately 20% of male
premutation carriers develop FXTAS in late adulthood, marked by
intention tremor, ataxia, dementia, parkinsonism, and autonomic
dysfunction.

---

Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS): A Common
Heritable Neuronal Inclusion Disorder

Hagerman PJ, Iwahashi C, Babineau B, et al
P06.078, A469-A470

Brains from 8 males (mean age 74 years) with FXTAS (approximately 70-
100 repeats) were examined. Intranuclear inclusions were seen in
neurons and glia in cortex, cerebellum, and hippocampus. Inclusions
were positive for ubiquitin and proteasome subunits. Normal levels of
FMR1 protein, but elevated levels of FMR1 mRNA, were found in
patients (approximate average threefold increase over normal).
According to investigators, "The only known biochemical abnormality
associated with the premutation is the presence of elevated mRNA
levels, suggesting that inclusion formation, as well as FXTAS,
may be caused by a gain of function toxicity due to the excess FMR1
mRNA."

---

Molecular Phenotype and Neuropathology in a Male With the Fragile X
Premutation

Tassone F, Greco CM, Khandjian EW, et al
P06.079, A470
Allele size was consistent among 13 brain regions and peripheral
blood in a male with 135 repeats. FMR1 mRNA levels varied widely
throughout the brain, and were also elevated in blood. Reduced FMR1
protein levels were found in both brain and blood. Inclusions were
seen in both neurons and astrocytes, and the cerebellum was atrophied.

---

Two Female Cases of the Fragile X Premutation Tremor/Ataxia Syndrome:
Cognitive, Molecular and Radiological Studies

Hagerman RJ, Zhang L, Brundberg J, et al
S39.005, A331-A332

Two sisters (ages 67 and 62 years) developed tremor beginning at ages
32 and 52. The disorder progressed to include ataxia, lower-extremity
areflexia, and decreased vibration sense. CGG repeat length was 90 in
both, and elevated FMR1 mRNA was seen in both. No cognitive decline
was noted in either, unlike their brother, who developed FXTAS with
rapidly progressing dementia beginning at age 61.

---

A Subtype of Multiple System Atrophy With Cerebellar Ataxia (MSA-C):
The Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS)

Zhang L, Leehey M, Wheelock V, et al
P06.080, A470

FXTAS may account for some cases of MSA, according to this study.
Nineteen patients diagnosed with MSA-C (n=6) or MSA-P (n=13) were
genotyped for FMR1 repeat length. Nine patients had alleles in
the "gray zone" of 41-60 repeats, including both MSA-P and MSA-C
patients. MRI revealed increased signal intensity of the cerebellar
white matter, in keeping with imaging results in FXTAS patients.
The researchers conclude that "Given the prevalence of 0.2% (males)
and 0.5-1% (females) for FMR1 alleles with 40 or more CGG repeats,
the finding of 4/10 (males) and 5/9 (females) with gray-zone alleles
would be extremely rare in the absence of an association between the
expanded alleles and the MSA phenotype."


c.  Fragile X-associated Tremor/Ataxia Syndrome (FXTAS)

Special thanks to John Cummings for passing along this important
research news.

----- Original Message -----
From: John Cummings
To: Pam Bower
Sent: Tuesday, October 28, 2003 9:09 PM
Subject: FXTAS


Pam

I recently received an email from someone here in Melbourne whose
father has FXTAS.  This is new to me and is interesting.  I note many
people who have FXTAS are often originally diagnosed with MSA!  I
felt obliged to pass this on.


http://www.fragilex.org/FXTAS.pdf

Regards
John
wombat@...
www.wwwombat.com

______________________________________________________


3. CLINICAL TRIALS ACCEPTING MSA PATIENTS

a. Droxidopa in Treating Patients With Neurogenic Hypotension

http://clinicaltrials.gov/show/NCT00004478

RATIONALE: Neurogenic hypotension is a fall in blood pressure that
occurs when one moves from a lying down to a standing position or
after eating a meal. It causes one to feel dizzy, light headed, and
weak. Neurogenic hypotension is caused by a problem in the part of
the nervous system that controls such functions as heart rate and
blood pressure. Droxidopa, a drug that may increase blood pressure,
may be an effective treatment for neurogenic hypotension.

PURPOSE: Clinical trial to study the effectiveness of droxidopa in
treating patients who have neurogenic hypotension.

PROTOCOL OUTLINE: Patients receive escalating doses of droxidopa or
placebo for 7-14 days. Patients undergo blood pressure measurements
hourly in both supine and standing positions.

For more details contact:
Horacio Kaufmann
Mount Sinai School of Medicine,
New York,  NY  10029
Phone: 212-241-7315

______________________________________________________


4. ODDS & ENDS

a. Shults is Recognized for Coenzyme Q10 Studies

http://health.ucsd.edu/news/Newsletters/03AprNews.pdf

Clifford Shults, M.D., Professor of Neurosciences, has received the
second annual MIRAPEX Victories Award Research Grant for his research
in Parkinson's disease.  Designed to encourage scientists who are
committed to neurological research in Parkinson's disease, the award,
a $10,000 grant, was presented to Shults during the Parkinson's Unity
Walk April 26 in New York City's Central Park by event sponsors
Pharmacia Corporation and Boehringer Ingelheim Pharmaceuticals, Inc.,
makers of MIRAPEX (pramipexole dihydrochloride tablets).

Shults was recognized for his studies of coenzyme Q10, a naturally
occurring substance found within the area of the cell responsible for
energy production.

______________________________________________________


To subscribe to the MSA Online Support Group
Please visit http://groups.yahoo.com/group/shydrager

To view past issues of Multiple System Atrophy News please go to:
http://groups.yahoo.com/group/msa-news
Click on "Messages"

MSA support groups are forming in the US and around the world.
To view a list of MSA support groups please see:
http://www.shy-drager.org

Did you know? Much of the research news about MSA comes from
leads from you, our readers.  If you know of any research news you'd
like to share please contact the MSA News editor at
pbower@...

______________________________________________________

______________________________________________________

Multiple System Atrophy News - December 2003
______________________________________________________

Table of Contents

1. MULTIPLE SYSTEM ATROPHY RESEARCH NEWS

SPECIAL REPORTS FROM SAN DIEGO

The next several issues of MSA News will include research highlights
and patient and caregiver impressions of the MSA conference held in
San Diego on Dec 5 - 6, 2003.  I'm still looking for conference
attendees who would be willing to share their thoughts and
impressions with our readers.  Please contact me at
pbower@... if you'd like to help those who
couldn't attend share in the experiences of this event.

     a.  Major New MSA Research Study Announced
     b.  Media Coverage of the MSA Research Study
     c.  Questions about the MSA Research Study
     d.  DRUG RESEARCH: Pyridostigmine - New Help for Blood Pressure
         Regulation
     e.  Questions about Pyridostigmine
     f.  Blood Pressure Regulating Mechanisms

2.  NEWS FROM EUROPE

     a. News from the Sarah Matheson Trust for Multiple System Atrophy
(UK)

3. SUPPORT GROUP NEWS

     a. UPCOMING SUPPORT GROUP EVENT:  National Ataxia Foundation
Annual Conference  - San Diego, CA - February 27-29, 2004

______________________________________________________


1. MULTIPLE SYSTEM ATROPHY RESEARCH NEWS


SPECIAL REPORTS FROM SAN DIEGO


a.  Major New MSA Research Study Announced

At the MSA Conference in San Diego, Dr. Cliff Shults announced a
major new MSA research study currently recruiting study subjects at
centers around the U.S.A.  This is a crucial research study aimed at
determining the underlying cause of MSA. Any patients that can
possibly participate are needed.  The formal announcement of this
study is below and includes a list of research centers and contact
numbers.  News of this study has also reached the media resulting
in several published articles, don't miss the links to these below.


Protocol 030964 - Pathogenesis and Diagnosis of Multiple System
Atrophy (MSA)

The North American Multiple System Atrophy Study Group is enrolling
patients with multiple system atrophy (MSA) in a study to attempt
to identify possible environmental and genetic causes of the disease.
The study is supported by the National Institutes of Health (NIH).
Patients with MSA will be evaluated twice each year at one of the
research centers. They also will be contacted by telephone by other
researchers in the North American Multiple System Atrophy Study
Group to answer a series of questions about toxin exposure, behavioral
and dietary habits, medical history including head trauma and
medication use, family history and residential and occupational
history. The MSA patients will be asked to give a blood sample for
genetic studies.

The patients will be asked to help identify gender and age-matched
(within 5 years of the MSA patient's age) non-related family
members (in-laws) who might be willing to participate in the study as
control subjects. The control subjects will be asked to come into one
of the research centers for a single visit. They also will be
contacted by telephone by other researchers in the North American
Multiple System Atrophy Study Group to answer a series of questions
about toxin exposure, behavioral and dietary habits, medical history
including head trauma and medication use, family history and
residential and occupational history. The control subjects will be
asked to give a blood sample for genetic studies.

If you would like to learn more about the study, listed below
are the research centers for the North American Multiple System
Atrophy Study Group.

CALIFORNIA - San Diego (University of California, San Diego)
Enrolling Investigator - Cliff Shults, M.D.
For more information or to schedule an appointment, please contact
Deborah Fontaine, R.N. - 858-622-5800

CALIFORNIA - San Francisco area (Parkinson's Institute, Sunnyvale)
Enrolling Investigator - Caroline Tanner, M.D., Ph.D.
For more information or to schedule an appointment, please contact
Kathleen Comyns - 408-542-5620

MARYLAND - Baltimore (University of Maryland)
Enrolling Investigator - Stephen Reich, M.D.
For more information or to schedule an appointment, please contact
Kate Pabst - 410-328-2170

MASSACHUSETTS - Boston (Boston University)
Enrolling Investigator - Peter Novak, M.D., Ph.D.
For more information or to schedule an appointment, please contact
Megan Grey - 617-638-7747

MICHIGAN - Ann Arbor (University of Michigan)
Enrolling Investigator - Sid Gilman, M.D., F.R.C.P.
For more information or to schedule an appointment, please contact
Mary Heumann - 734-764-8445.

MINNESOTA - Rochester (Mayo Clinic)
Enrolling Investigator - Phillip Low, M.D.
For more information or to schedule an appointment, please contact
Tonette Gehrking - 507-284-0336

NEW YORK - Rochester (University of Rochester)
Enrolling Investigator - Fred Marshall, M.D.
For more information or to schedule an appointment, please contact
Debra Berry, N.P. - 585-341-7514

OHIO - Cleveland (University Hospitals of Cleveland)
Enrolling Investigator - Thomas Chelimsky, M.D.
For more information or to schedule an appointment, please contact
Anne Fisher, C.N.P. - 216-844-4770

PENNSYLVANIA - Philadelphia (University of Pennsylvania)
Enrolling Investigator - Matt Stern, M.D.
For more information or to schedule an appointment, please contact
Mary Lloyd, R.N. - 215-829-6500

TEXAS - Houston (Baylor College of Medicine)
Enrolling Investigator - Joseph Jankovic, M.D.
For more information or to schedule an appointment, please contact
Christine Hunter, R.N. - 713-798-3951

VIRGINIA, Charlottesville (University of Virginia)
Enrolling Investigator - Fred Wooten, M.D.
For more information or to schedule an appointment, please contact
Margaret Keller - 434-243-5457

__________________________

b.  Media Coverage of the MSA Research Study

http://health.ucsd.edu/news/2003/12_05_Shults.html

December 5, 2003

National Study Seeks Cause of Baffling, Fatal Disorder Called
Multiple System Atrophy

A better understanding of a baffling, frequently misdiagnosed disease
called Multiple Systems Atrophy (MSA) will be sought by researchers
at 12 sites in the U.S. as part of a five-year, $7 million grant from
the National Institutes of Health (NIH). A devastating disease with
multiple symptoms, no cure and no effective treatment, MSA strikes
people in middle age. Most patients die within seven to 10 years.

Coordinated by the University of California, San Diego (UCSD)
School of Medicine, the national research project will enroll 175
individuals with MSA and 350 control subjects who don't have the
fatal disorder, in an attempt to identify possible environmental and
genetic causes.

"Although there are estimates that MSA affects approximately 50,000
Americans, the true number is unknown," said the study's principal
investigator, Clifford Shults, M.D., UCSD professor of neurosciences.
"With its variety of symptoms, this disease is often misdiagnosed."

He added that it's unrealistic to think that one drug can treat all
the symptoms. "What we need is to find the cause or causes, and stop
MSA before the degeneration progresses."

Read the full article at:

http://ucsdnews.ucsd.edu/newsrel/health/12_05_Shults.asp

Other internet sites which carried news of this study:

http://www.charitywire.com/charity284/04917.html
http://www.eurekalert.org/pub_releases/2003-12/uoc--nss120503.php
http://www.med.umich.edu/opm/newspage/2003/msastudy.htm
http://www.newswise.com/articles/view/502310
http://www.ascribe.org/cgi-bin/spew4th.pl?
ascribeid=20031205.133923&time=14%2003%20PST&year=2003&public=1

__________________________


c.  Questions about the MSA Research Study

Q.  I'm wondering if anyone has any preliminary information about the
study design.  In particular, wondering if we know if Dr. Schults
will be taking histories on items such as exposure to mercury in
dental fillings, and/or other possible causes/catalysts some have
speculated about previously on the online MSA/shydrager support list?

A.  Epidemiologist, Dr. Caroline Tanner will be heading up one of the
projects under the MSA Study entitled "Risk Factors for MSA".  As
part of that study she and her assistants will be conducting
telephone interviews to ask questions of all study subjects, both
those that have MSA symptoms and those who are controls. Some of the
areas touched on in her questions will be:

- Toxin exposure
- Behavioural and Dietary habits
- Medical History including head trauma and medication use
- Family History
- Residential History
- Occupational History


Q.  Will those who filled out Dr. Shults questionnaire last year
still need to register to participate in this study?

A.  The purpose of the questionnaire last year was to locate enough
potential study subjects to convince the National Institutes of
Health to fund this study.  All the data from the answered
questionnaires has been retained by Dr. Shults. His research
assistants will try to contact everyone who responded to the
questionnaire BUT to ensure you don't get missed he would prefer that
you go ahead and call the clinical center nearest you to be sure you
are signed up to participate.  Control subjects are also needed so
please ask your non-affected friends and in-laws if they would be
willing to sign up to participate as well.

__________________________


d.  Drug Research: Pyridostigmine - New Help for Blood Pressure
Regulation

Dr. Phillip Low reported on a study he's done with MSA patients
taking a drug called Pyridostigmine (Mestinon).  This drug is already
available now and is used in the disorder Myathenis Gravis.  This
drug has also already been shown to help with constipation in MSA.
The purpose of this recent study was to see if Pyridostigmine could
improve standing blood pressure without increasing blood pressure
when lying down.  This is a problem many MSA patients have when they
take Florinef and Midodrine (also known as Proamatine or Gutron) to
help their orthostatic hypotension.

The results of his study suggested that it did raise standing blood
pressure without significantly raising lying blood pressure.  Dr. Low
referred to this as a "smart drug".

*** Dr. Low suggested that patients may want to ask their doctors
about possibly trying Pyridostigmine now, either alone or in
combination with Midodrine if they have the problem of high blood
pressure when lying down.

Below are some things you can take to your doctor so he/she will have
some background information.  Your doctors should also feel free to
contact Dr. Low to discuss this further.  He provided us with his
email address at the conference: low@...

__________________________

September 23, 2003

Mayo Clinic Researchers Devise New Treatment for People Who Experience
Dizziness Upon Suddenly Rising From a Prone Position

http://www.mayoclinic.org/news2003-rst/1954.html

__________________________

Acetylcholinesterase inhibition: a novel approach in the treatment of
neurogenic orthostatic hypotension.

J Neurol Neurosurg Psychiatry. 2003 Sep;74(9):1294-8.

Comment in:
J Neurol Neurosurg Psychiatry. 2003 Sep;74(9):1187.

Acetylcholinesterase inhibition: a novel approach in the treatment of
neurogenic orthostatic hypotension.

Singer W, Opfer-Gehrking TL, McPhee BR, Hilz MJ, Bharucha AE, Low PA.

Department of Neurology, Mayo Clinic, Rochester, Minnesota 55905, USA.

BACKGROUND: Pharmacological treatment of orthostatic hypotension is
often limited because of troublesome supine hypertension.

OBJECTIVE: To investigate a novel approach to treatment using
acetylcholinesterase inhibition, based on the theory that enhanced
sympathetic ganglion transmission increases systemic resistance in
proportion to orthostatic needs.

DESIGN: Prospective open label single dose trial.

MATERIAL: 15 patients with neurogenic orthostatic hypotension caused
by:  multiple system atrophy (n = 7), Parkinson's disease (n = 3),
diabetic neuropathy (n = 1), amyloid neuropathy (n = 1), and
idiopathic autonomic neuropathy (n = 3).

METHODS: Heart rate, blood pressure, peripheral resistance index
(PRI), cardiac index, stroke index, and end diastolic index were
monitored continuously during supine rest and head up tilt before and
one hour after an oral dose of 60 mg pyridostigmine.

RESULTS: There was only a modest non-significant increase in supine
blood pressure and PRI. In contrast, acetylcholinesterase inhibition
significantly increased orthostatic blood pressure and PRI and reduced
the fall in blood pressure during head up tilt. Orthostatic heart
rate was reduced after the treatment. The improvement in orthostatic
blood pressure was associated with a significant improvement in
orthostatic symptoms.

CONCLUSIONS: Acetylcholinesterase inhibition appears effective in the
treatment of neurogenic orthostatic hypotension. Orthostatic symptoms
and orthostatic blood pressure are improved, with only modest effects
in the supine position. This novel approach may form an alternative
or supplemental tool in the treatment of orthostatic hypotension,
specially for patients with a high supine blood pressure.


PMID: 12933939

__________________________

e.  Questions on Pyridostigmine:

Q.  Is it being recommended that Proamatine(Midodrine) be replaced by
Pyridostigmine(Mestinon)?

A.  Not at this time but this is being studied right now in a double
blind study. Some of the patients are getting pyridostigmine alone,
others are getting pyridostigmine and midodrine in combination,
others are getting placebo. Dr. Low will publish the results as soon
as they become available.

Right now it is the drug Florinef that causes the most problems with
supine hypertension (blood pressure becomes too high when lying down)
so it would be more likely that Pyridostigmine would replace Florinef
as the drug of choice for controlling orthostatic hypotension(low
blood pressure when standing).


Q.  Is Pyridostigmine available now, and if so, what dosage is
recommended?

A.  Any doctor can prescribe Pyridostigmine now.  There is a 60mg pill
available that would be taken several times a day as well as a longer
acting timespan pill that would only be taken once a day.  Ask your
doctor for more details and refer him/her to Dr. Low's research study
results if you are interested in trying this.

__________________________

f.  Blood Pressure Regulating Mechanisms

At the MSA conference, Dr. Phillip Low discussed how our bodies
regulate blood pressure. Two things are very important in maintaining
blood pressure:

1. Hemoglobin levels

* About 20% of MSA patients are anemic.

* Make sure to get your blood levels checked and if anemic, the drug
Erythropoietin  (EPO) can help.


2. Blood plasma volume

* There is a simple test that can be performed to determine plasma
volume. Make sure to ask for a "urinary sodium excretion test".  Here
is some more information on this test:
http://www.nlm.nih.gov/medlineplus/ency/article/003599.htm

* If urinary sodium levels are less than 170 mmol per 24 hours then
the MSA patient is salt depleted. The sodium excretion level needs to
be at least 170 or slightly more for MSA patients.

* You should also be putting out between 1500-2500 ml of urine in 24
hours

* Make sure to drink at least 2 - 3 liters or 2 - 3 quarts of
non-caffeinated fluids daily

__________________________

The below Pubmed article explains the relationship between salt
intake, sodium excretion levels and improvement in standing blood
pressure:
__________________________

Heart. 1996 Feb;75(2):134-40.
Comment in:
Heart. 1996 Feb;75(2):114-5.

Salt supplement increases plasma volume and orthostatic tolerance in
patients with unexplained syncope.

El-Sayed H, Hainsworth R.

Institute for Cardiovascular Research, University of Leeds.

OBJECTIVE: To determine whether in patients presenting with posturally
related syncope administration of salt increases plasma volume and
improves orthostatic tolerance. Patients with poor tolerance of
orthostatic stress tend to have lower than average plasma and blood
volumes.

DESIGN: A double blind placebo controlled study in 20 patients and an
open study in 11 of the effects of giving 120 mmol/day of sodium
chloride.

PATIENTS: 31 patients presenting with episodes of syncope who had no
apparent cardiac or neurological disease. Plasma volume was
determined by Evans blue dye dilution, orthostatic tolerance by time
to presyncope in a test of combined head-up tilt and lower body
suction, and baroreceptor sensitivity by the effect of neck suction
on pulse interval.

RESULTS: 8 weeks after treatment, 15 (70%) of the 21 patients given
salt and three (30%) of the placebo group showed increases in plasma
and blood volumes and in orthostatic tolerance, and decreases in
baroreceptor sensitivity. Improvement was related to initial salt
excretion in that patients who responded to salt had a daily
excretion below 170 mmol. The patients in the placebo group who
improved also showed increases in salt excretion.

CONCLUSIONS: In patients with unexplained syncope who had a relatively
low salt intake administration of salt increased plasma volume and
orthostatic tolerance, and in the absence of contraindications, salt
is suggested as a first line of treatment.

PMID: 8673750

______________________________________________________


2.  NEWS FROM EUROPE

a. News from the Sarah Matheson Trust for Multiple System Atrophy(UK)

The Winter 2003 issue of  SMarT News is now available for browsing at

http://www.msaweb.co.uk/newsletter.htm

or for download in pdf (Adobe Acrobat) format at

http://www.msaweb.co.uk/smart_2003_winter.pdf


Highlights from this issue:

- Managing Constipation
- Research
- Fundraising

______________________________________________________


3. SUPPORT GROUP NEWS

a. UPCOMING SUPPORT GROUP EVENT:  National Ataxia Foundation
Annual Conference - San Diego, CA -  February 27-29, 2004

For those who missed hearing Dr. Cliff Shults speak at the MSA San
Diego Conference in December you'll have another opportunity in
February 2004.

Dr. Shults will be a speaker at the National Ataxia Foundation annual
conference to be held in San Diego on February 27-29th.  Dr. Shults
will speak on MSA and his MSA research study.

The full agenda of the meeting is available now at:
http://www.ataxia.org/pdf/2004NAF_Itinerary.pdf

Watch the National Ataxia Foundation website for more updates
and register online.  See: http://www.ataxia.org

The National Ataxia Foundation recognizes MSA as a form of non-
hereditary ataxia.  I've personally attended two of their conferences
in the past and found them very relevant and informative.  It's
encouraging to hear they are continuing to include at least one
speaker on MSA at their yearly conferences.

Dr. Sid Gilman spoke at their conference in 2001 on the topic of
Sporadic Cerebellar Degeneration, you can read the synopsis of his
talk at:
http://208.42.82.18/generations/2001/2001summer/gilman.html


______________________________________________________

To subscribe to the MSA Online Support Group
Please visit http://groups.yahoo.com/group/shydrager
Register and click on "Join this Group"
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To view past issues of Multiple System Atrophy News please go to:
http://groups.yahoo.com/group/msa-news
Click on "Messages"
To have the monthly newsletter delivered to your inbox send
an email to msa-news-subscribe@yahoogroups.com

MSA support groups are forming in the US and around the world.
To view a list of MSA support groups please see:
http://www.shy-drager.org

Did you know? Much of the research news about MSA comes from
leads from you, our readers. If you know of any research news you'd
like to share please contact the MSA News editor at
pbower@...

______________________________________________________

______________________________________________________

Multiple System Atrophy News - January 2004
______________________________________________________

Table of Contents

1. SUPPORT GROUP NEWS

a. First Annual MSA Meeting - Boston University - February 21, 2004

2. SPECIAL REPORTS FROM SAN DIEGO

We continue in this issue to recap some of the highlights
from the MSA conference held in San Diego on Dec 5 - 6, 2003.

a.  Managing Orthostatic Hypotension in MSA Patients
b.  Genetics and MSA

3. MSA RESEARCH STUDY

There are several individual study grants which are part of the main
5 year, 7 million dollar grant from the NIH devoted to studying
Multiple System Atrophy.  If you haven't heard about it yet please see
http://health.ucsd.edu/news/2003/12_05_Shults.html

Several of these individual study grants will be highlighted in this
and future issues of MSA-News.

a. Project Title: RISK FACTORS FOR MSA
b. Project Title: CORE--NEUROPATHOLOGY
c. Project Title: CORE--DATA FACILITY

4. NEW ARTICLES ON MULTIPLE SYSTEM ATROPHY

a. Orthostatic Hypotension
b. Parkinsonism plus syndrome - A review

______________________________________________________


1. SUPPORT GROUP NEWS

a. First Annual MSA Meeting  -  Boston University - February 21, 2004

Please see:  http://www.autonomic.neurohub.com/

You are cordially invited to attend:

The First Annual

Multiple System Atrophy (MSA) Meeting at Boston

Organized By Boston University

Boston University Medical Center
C-D Conference Room
Boston, MA 02118
Saturday, Feb 21st 2004 at 1pm

Agenda:

1:00-1:15- Refreshments

1:15-1:30 Introduction
Peter Novak M.D., Ph.D.
Cathi Thomas, RN, MS
Meghan E. Gray

1:30-2:15 Multiple System Atrophy:
Current Concepts and Treatment
Pathogenesis and Natural History
National Institute of Health Clinical Trial
Peter Novak M.D., Ph.D.

2:20 Coping With MSA-The Caregivers Perspective
Carol Langer, Support Group Leader

2:40 Question and Answer Discussion Time

Please RSVP to Meghan Gray at (617) 638-7747 or neuromeg@...

______________________________________________________


2. SPECIAL REPORTS FROM SAN DIEGO

We continue in this issue to recap some of the highlights
from the MSA conference held in San Diego on Dec 5 - 6, 2003.

a.  Managing Orthostatic Hypotension in MSA Patients

Dr. Robert Fealey delivered a talk on the more practical aspects
of managing Multiple System Atrophy symptoms, especially the
orthostatic hypotension or low blood pressure symptom.  After the
talk Dr. Fealey handed out notes to everyone in attendance and
encouraged people to share them with their doctors.

These notes are available at our shydrager online support group site
at
http://groups.yahoo.com/group/shydrager
Click on "Handout from Dr. Robert Fealey"

If for any reason you are unable to access this link please write to
me at pbower@... and I will forward you a copy.

_______________________


b.  Genetics and MSA

Dr. David Robertson talked about the state of MSA research and
in particular he focused on clues we may find from our genes.
He put up a slide that listed the various genes that had been looked
at in MSA patients.  Many of them are connected with various
other neurological disorders but so far none of them have been
connected to MSA.

FMR1  ---> this was the fragile X gene mentioned in recent articles
that was suggested might be linked to MSA.
See MSA-News November 2003
http://groups.yahoo.com/group/msa-news/message/21

Dr. Robertson has looked for this gene in 60 of his MSA patients
and did not find it.

alpha-synuclein  -->  there is a gene that is responsible for making
this protein.  In some Parkinson's patients there is a defect in this
gene.  This same defect was not found in MSA patients. However we
do know that the protein itself is found in aggregates in MSA brains
so the problem with this protein may occur at some other point after
it's made in the body.

Other genes looked at but were found to be normal in MSA patients:

DA monoxygenase
NE transporter
alpha 2 - adrenoreceptor
beta 2 - adrenoreceptor
ET 1

A question was asked at the conference about whether finding a
gene linked to MSA would be good news or bad news.
Dr. Robertson assured us that there is no hereditary cause of
MSA, at least none that we know of, and it should have showed
up by now as this disorder has been studied since at least the late
60's.   There may be some strange rare form of MSA that is
hereditary but as of yet this has not been discovered.

What is more likely is that some people have a genetic predisposition
for developing MSA.  If we do find a gene or genes that is defective
in MSA patients it will be good news because it will give us clues
as to the underlying cause which may then give rise to drugs that can
treat it.  As well, a defective gene may be able to be fixed.

______________________________________________________


3. MSA RESEARCH STUDY

There are several individual grants which are part of the main MSA
Research Study we are so excited about.  If you haven't heard about
it yet please see
http://health.ucsd.edu/news/2003/12_05_Shults.html

These individual study grants will be highlighted in this and future
issues of MSA-News.

_______________________


a. Project Title: RISK FACTORS FOR MSA

Source: CRISP Database of Biomedical Research funded by the NIH
http://crisp.cit.nih.gov/

Grant Number: 1P01NS044233-01A10001
PI Name: TANNER, CAROLINE M.
PI Email: ctanne@...
PI Title: DIRECTOR OF CLINICAL RESEARCH

Abstract: Few studies have explored the determinants of MSA.
Apart from age, no risk factor has been definitively identified.
The goal of this proposal will be to take the first step in
identifying factors associated with MSA, using a case-control method.

Our hypotheses will be determined not only by an investigation
of current understandings about MSA, but also by current theories
regarding the determinants and the pathogenesis of other late-life
neurodegenerative diseases, particularly Parkinson's disease (PD),
which, like MSA, has alpha-synuclein-containing inclusions.

In addition, risk factors for neurodegenerative disorders sharing the
more general finding of protein aggregation will be investigated. A
unique advantage of this application is the use of a well-
characterized population with clinically Probable MSA, who will be
followed clinically and for some studied at autopsy. All cases (n =
175) and controls (n = 350) enrolled in Core A will participate in
Project I.

Four specific aims will be addressed:

1: To test the hypothesis that exposure to specific occupational or
a vocational chemical exposure is associated with an increased risk of
MSA;

2: To test the hypothesis that specific dietary factors have a direct
effect on the risk of MSA;

3: To test the hypotheses that certain risk factors associated with
PD or Alzheimer's disease (AD) alter the risk of MSA.  Risk factors
of interest include: use of tobacco, caffeine, alcohol, anti-
inflammatory drugs (lower risk); head trauma, stimulant use (higher
risk);

4:To determine whether there is familial aggregation of MSA or the
symptoms of MSA, or of MSA and other neurodegenerative diseases
(PD, AD, motor neuron disease).

For each hypothesis, exposures believed to be causally associated
with MSA are expected to be more common in persons with
MSA than in controls. Hypothesis testing will use classical methods
for univariate and multivariate analysis of case-control studies.

We stress that these investigations constitute a necessary exploratory
step in attempting to characterize the determinants of MSA.

Institution: UNIVERSITY OF CALIFORNIA SAN DIEGO
9500 GILMAN DR, Dept. 0934
LA JOLLA, CA 92093
Fiscal Year: 2003
Project Start: 30-SEP-2003
Project End: 30-JUN-2008
ICD: NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE

_______________________


b. Project Title: CORE--NEUROPATHOLOGY

Source: CRISP Database of Biomedical Research funded by the NIH
http://crisp.cit.nih.gov/

Grant Number: 1P01NS044233-01A19002
PI Name: TROJANOWSKI, JOHN

Abstract: Multiple system atrophy (MSA), Parkinson's disease (PD) and
a group of seemingly unrelated forms of parkinsonism share similar
filamentous inclusions and it now is known that alpha-synuclein (AS)
is the building block of fibrous glial and neuronal inclusions which
define these disorders as synucleinopathies. Specifically, a number
of advances from research in the past 4 years have shown that:

1) Mutations in the AS gene cause familial PD,

2) AS is the major component of Lewy bodies (LBs) in PD, the LB
variant of Alzheimer's disease (AD) and dementia with LBs (DLB),

3) AS positive LBs occur in >60% of familial AD brains and >50% of
Down's syndrome brains with AD,

4) Glial cytoplasmic inclusions (GCIs) in MSA are formed by AS
filaments,

5) AS forms LB and GCI like filaments in vitro. Moreover, novel
dystrophic processes in the hippocampus of PD and DLB brains are
labeled by antibodies to beta- (BS) and gamma-synucleins (GS)
suggesting that all 3 of these synucleins may be implicated in the
brain degeneration of synucleinopathies.

Further, since AS has been shown to be selectively nitrated in the
hallmark inclusions of MSA and all other synucleinopathies,
nitrative and/or oxidative mechanisms may underlie brain degeneration
in synucleinopathies including MSA.

Finally, MSA is unique among neurodegenerative movement disorders
characterized by prominent synuclein pathology because oligodendroglia
rather than neurons are most affected by the accumulation of
filamentous AS inclusions in MSA.

For these reasons, this new Program Project Grant (PPG) proposes
complementary strategies to elucidate the role synucleins play in the
onset/progression of MSA. Thus, the goal of the Neuropathology Core
is to support the research pursued in this PPG by obtaining,
characterizing and distributing postmortem brains from patients with
MSA, and by providing data from these cases on the neuropathology
phenotype of MSA to Core and Project investigators.

Additionally, this Core will network with other investigators in this
PPG to provide advice and technical support to facilitate studies by
investigators in this PPG.

Institution: UNIVERSITY OF CALIFORNIA SAN DIEGO
9500 GILMAN DR, Dept. 0934
LA JOLLA, CA 92093
Fiscal Year: 2003
Project Start: 30-SEP-2003
Project End: 30-JUN-2008
ICD: NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE

_______________________


c. Project Title: CORE--DATA FACILITY

Source: CRISP Database of Biomedical Research funded by the NIH
http://crisp.cit.nih.gov/

Grant Number: 1P01NS044233-01A19001
PI Name: THOMAS, RONALD G.
PI Email: rthomas@...
PI Title: PROFESSOR

Abstract: The Data Core is responsible for the collection, entry,
management and analysis of the MSA database. Specifically, the
Core will facilitate the collection of data, it assures the quality of
the captured data, it manages the evolving database, including doing
routine backups. It reports to the PI and the other investigators at
on the state of the database, it conducts the statistical analyses of
the data, and archival of the database at the conclusion of the
project.

The Data Core will provide support for data management and assistance
with data analyses to the following projects:

Risk factors for MSA, Dr. Tanner;

Clinical and Laboratory Indices that Differentiate and Predict Outcome
in MSA and Parkinson's Disease with Autonomic Failure, Dr. Low.

In addition. Through it's support of the Neuropathology Core the
Data Core will also support the project Mechanisms of synuclein
pathologies in MSA, which will utilize samples from the Neuropathology
Core and the accompanying clinical data. The data core will also
provide support for the Decentralized Brain Bank.

Institution: UNIVERSITY OF CALIFORNIA SAN DIEGO
9500 GILMAN DR, Dept. 0934
LA JOLLA, CA 92093
Fiscal Year: 2003
Project Start: 30-SEP-2003
Project End: 30-JUN-2008
ICD: NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE

______________________________________________________


4. NEW ARTICLES ON MULTIPLE SYSTEM ATROPHY

a. Orthostatic Hypotension
See:
http://www.aafp.org/afp/20031215/2393.html

b. Parkinsonism plus syndrome - A review
See:
http://tinyurl.com/3en8w

______________________________________________________

To subscribe to the MSA Online Support Group
Please visit http://groups.yahoo.com/group/shydrager
Register and click on "Join this Group"
Over 900 members from 25 countries share coping tips daily.

To view past issues of Multiple System Atrophy News please go to:
http://groups.yahoo.com/group/msa-news
Click on "Messages"
To have the monthly newsletter delivered to your inbox send
an email to msa-news-subscribe@yahoogroups.com

MSA support groups are forming in the US and around the world.
To view a list of MSA support groups please see:
http://www.shy-drager.org

Did you know? Much of the research news about MSA comes from
leads from you, our readers. If you know of any research news you'd
like to share please contact the MSA News editor at
pbower@...

______________________________________________________

______________________________________________________

Multiple System Atrophy News - February 2004
______________________________________________________

Table of Contents

1. MULTIPLE SYSTEM ATROPHY RESEARCH NEWS

a.  Some MSA or Sporadic Ataxia Cases May Actually be  FXTAS
b. Genetic Screening Recommended to Detect New Disorder (FXTAS)
- There has now been some official communication on this new
disorder and recommendations made that genetic screening be done
to detect FXTAS.  Please share this information with your doctors.

2. MSA IN THE MEDIA
a. VIDEO: FXTAS News Conference
- Multiple System Atrophy and Sporadic Ataxia are
mentioned several times in this news conference.
View it online in it's entirety.

3. MSA RESEARCH GRANTS
a. Michael J. Fox Research Fellowship Awarded to MSA Researcher

4. DIAGNOSING MSA & RELATED DISORDERS
a. Non-Genetic Ataxia Presentation by Dr. Susan Perlman
- Dr. Perlman outlines the various disorders that can look like
OPCA or the cerebellar form of MSA.  She notes that some
non-genetic causes of ataxia are treatable and should not be
overlooked by physicians.

b. Differential Diagnosis of Multiple System Atrophy

5. ODDS & ENDS
a. Litvan Neurological Research Foundation

______________________________________________________


1. MULTIPLE SYSTEM ATROPHY RESEARCH NEWS

a. Some MSA or Sporadic Ataxia Cases May Actually be  FXTAS

Some preliminary reports of this connection between MSA and FXTAS
were presented in MSA-News November 2003.
For more background please see that issue at:
http://health.groups.yahoo.com/group/msa-news/message/21

There has now been some official communication on this new disorder
and recommendations made that genetic screening be done to detect
FXTAS.  Please share this information with your doctors.

_______________________

From: Dr. Paul Hagerman
To:  Pam Bower

Dear Ms Bower,

I have been communicating with John Cummings (wombat@...)
with regard to possible overlap between individuals with MSA and
those with a newly-identified form of tremor/ataxia syndrome that
we have designated "fragile X-associated tremor/ataxia syndrome"
(FXTAS). FXTAS is associated with the fragile X mental retardation 1
(FMR1) gene, but does not affect children with fragile X syndrome
(a neurodevelopmental disorder). Rather, FXTAS affects carriers of
smaller mutations of the FMR1 gene, individuals who develop a
late-onset (50's and older) neurodegenerative disorder that includes
intention tremor, gait ataxia, parkinsonism, and autonomic
dysfunction - features that overlap substantially with MSA.
Furthermore, we see radiologic abnormalities in FXTAS patients that
are quite similar to the abnormalities observed in MSA.

FXTAS appears to be one of the more common single-gene causes
of late-onset tremor and ataxia, perhaps approaching 1 in 3,000 males
over 50 yr in the general population. We suspect that some cases of
MSA are actually FXTAS, and that neurologists should be aware of
this possibility.

The best web source of information is at the National Fragile X
Foundation (NFXF) website (http://www.fragilex.org). I have written
a lay description of FXTAS for the NFXF.

Sincerely, Paul

Paul J. Hagerman, M.D., Ph.D.
Professor, Department of Biological Chemistry
4455 Tupper Hall
University of California, Davis, School of Medicine
One Shields Ave
Davis, CA 95616

_______________________


b. Genetic Screening Recommended to Detect New Disorder (FXTAS)

See:
http://www.nwpf.org/articles.asp?id=531
http://www.ucdmc.ucdavis.edu/mindinstitute/html/news/
http://www.ucdmc.ucdavis.edu/mindinstitute/html/news/fxtasconference/p
dfs/fxtas.pdf


Why is the identification of FXTAS important?

"Getting information to practicing neurologists, radiologists,
primary care physicians, and the general public is extremely
important because a significant but currently unknown number of
adults with tremor and balance problems are being told their problems
are associated with normal aging, or are diagnosed with Parkinson's
disease, senile dementia, tremor, MULTIPLE SYSTEM ATROPHY, and
Alzheimer's disease. These common symptoms can be accurately and
easily identified as FXTAS with a standard DNA blood test ordered by
the patient's doctor, potentially leading to more appropriate
treatment and more accurate genetic counseling for families."

Read more Frequently Asked Questions about FXTAS:
http://www.ucdmc.ucdavis.edu/mindinstitute/html/news/fxtasconference/f
aqs.htm

______________________________________________________


2. MSA IN THE MEDIA

a. VIDEO: FXTAS News Conference

Dr. Paul Hagerman & Dr. Randi Hagerman presented their findings on
FXTAS in a news conference on January 27th.  Multiple System Atrophy
and Sporadic Ataxia are mentioned several times in this news
conference at about the halfway mark in the program.

This news conference can be viewed in it's entirety at:

http://www.ucdmc.ucdavis.edu/mindinstitute/html/news/fxtasconference/i
ndex.htm


FXTAS News Conference
Tues., Jan 27, 2004
12:00 (noon) – 1:00 p.m. PST

"A team of researchers, led by physicians at the UC Davis M.I.N.D.
Institute, has discovered a new, progressive disorder that affects 1
in 3000 men over the age of 50. Details of the discovery were
announced Tuesday, Jan. 27, 2004, at a news conference in Sacramento,
live via webcast."

Who:
Randi J. Hagerman, M.D. — developmental and behavioral pediatrician
and medical director, UC Davis M.I.N.D. Institute

Paul Hagerman, M.D., Ph.D. — professor and molecular biologist, UC
Davis School of Medicine

______________________________________________________


3. MSA RESEARCH GRANTS

a. Michael J. Fox Research Fellowship Awarded to MSA Researcher

Kyoko Tsuboi, PhD, has been awarded the first Michael J. Fox
Fellowship in Parkinson's Research at University of California,
San Diego.  Dr. Tsuboi will study the processes leading to neuronal
death in Parkinson's disease and glial cell death in multiple system
atrophy (MSA), which is a progressive, degenerative neurological
disorder characterized by parkinsonism, ataxia, and autonomic
dysfunction. She will use cell culture and transgenic mouse models
of these diseases. Dr. Tsuboi will work under the direction of
Clifford W. Shults, MD. Dr. Tsuboi received a bachelor's degree in
chemistry from Japan Women's University and doctorate in animal
behavior from University of Tokyo.

Read more about the The Michael J. Fox Foundation Research
Fellowship Program at:

http://www.michaeljfox.org/research/fundingopps.php?id=3

______________________________________________________


4. DIAGNOSING MSA & RELATED DISORDERS

a. Non-Genetic Ataxia Presentation by Dr. Susan Perlman

Dr. Perlman outlines the various disorders that can look like OPCA or
the cerebellar form of MSA.  She notes that some non-genetic causes
of ataxia are treatable and should not be overlooked by physicians.

http://internaf.org/ataxia/acarm/drPerlman.pdf

_______________________


b. Differential Diagnosis of Multiple System Atrophy

There are two main types of Multiple System Atrophy (also known as
Shy-Drager Syndrome)

1. MSA-P (the Parkinson form, sometimes called Striatonigral
Degeneration)
2. MSA-C (the Cerebellar form, sometimes called sporadic OPCA)

Often MSA is difficult to distinguish from other similar disorders
such as:

PD - Parkinson's Disease
PSP - Progressive Supranuclear Palsy
CBD - Corticobasal Degeneration
DLB - Dementia with Lewy Bodies
SCA - Hereditary Spinocerebellar Ataxia
Various other causes of Sporadic OPCA

These are a few notes that describe some of the features that
distinguish MSA from these other disorders.

_______________________

Source: http://www.emsa-sg.org/msa/differential.htm

Differential diagnosis

In clinical practice parkinsonian features associated with MSA need
to be distinguished from Parkinson´s disease (PD) as well as other
atypical parkinsonian disorders.

Recognition of typical disease manifestations will facilitate a
correct clinical diagnosis in many instances.

-  In contrast to atypical parkinsonian disorders including MSA-P,
patients with PD usually exhibit a beneficial response to chronic L-
dopa therapy which then usually becomes complicated by motor
fluctuations and dyskinesias.

- Although patients with PD and MSA-P may both develop orthostatic and
urogenital disturbances, these frequently manifest early in MSA-P and
late in PD.

- Early unexplained falls combined with vertical gaze palsy represent
cardinal features of PSP.

- Patients with CBD typically develop an asymmetrical extrapyramidal
syndrome comprising bradykinesia, rigidity, dystonic posturing and
superimposed myoclonus. In addition there is prominent cortical
dysfunction, predominantly ideomotor apraxia.

- Progressive cognitive decline associated with marked fluctuation of
attention and vigilance as well as visual hallucinations characterize
the dementia syndrome of patients with DLB, a substantial proportion
of whom develop additional parkinsonian features.

- The differential diagnosis of MSA-C includes other adult onset
cerebellar ataxias. Principally, molecular genetic testing for
spinocerebellar ataxia type 1 (SCA1) and type 2 (SCA2) should exclude
those hereditary ataxias associated with OPCA-like pathology, and
testing for SCA 6 those with a pure cerebellar syndrome although such
testing is not usually necessary.

- Early presence of autonomic and urogenital dysfunction represent a
helpful red flag indicating MSA-C rather than other causes of
sporadic OPCA.

______________________________________________________


5. ODDS & ENDS

a. Litvan Neurological Research Foundation

"The Litvan Neurological Research Foundation (LNRF) was established
to strive for the discovery of a cure for patients with
neurodegenerative disorders presenting with either atypical
parkinsonian or dementia symptoms. Our vision is to be a national
resource for these disorders not usually funded by the existing
Parkinson's Disease and Alzheimer's Disease associations."

See:
http://www.lnrf.neurohub.net/

______________________________________________________


To subscribe to the MSA Online Support Group
Please visit http://groups.yahoo.com/group/shydrager
Register and click on "Join this Group"
Over 900 members from 25 countries share coping tips daily.

To view past issues of Multiple System Atrophy News please go to:
http://groups.yahoo.com/group/msa-news
Click on "Messages"
To have the monthly newsletter delivered to your inbox send
an email to msa-news-subscribe@yahoogroups.com

MSA support groups are forming in the US and around the world.
To view a list of MSA support groups please see:
http://www.shy-drager.org

Did you know? Much of the research news about MSA comes from
leads from you, our readers. If you know of any research news you'd
like to share please contact the MSA News editor at
pbower@...

______________________________________________________

_________________________________________________________

Multiple System Atrophy News - March 2004
_________________________________________________________

Table of Contents

1. SUPPORT GROUP NEWS
a. News from the SDS/MSA Support Group
b. Announcing the Danish MSA Society

2. MSA RESEARCH STUDY
a. New Ataxia Research Program at MGH
b. Update on 5 Year MSA Research Study

3. NEWS FROM EUROPE
a. Diagnosis & Treatment of Multiple System Atrophy: An Update
     by Dr. Gregor Wenning, European MSA Study Group

b. NNIPPS Project (neuroprotection and natural history in MSA and PSP)

4. ODDS & ENDS
a. Family Caregiver Newsmagazine

_________________________________________________________

1. SUPPORT GROUP NEWS

a. News from the SDS/MSA Support Group

From: Pam Bower <pbower@...>
To: shydrager@yahoogroups.com
Sent: Monday, March 29, 2004 9:44 AM
Subject: [MSA] Re: MSA Conference Video -- Don

Hi Don,
A couple people at the MSA chat yesterday were asking for an
update on the availability of the San Diego MSA conference video.
Let
us know your plans on getting the editing done and if you need any
further assistance from members to accomplish that.
Take care,
Pam

From: Don Summers  <donsums@...>
To: shydrager@yahoogroups.com
Sent: Monday, March 29, 2004 1:27 PM
Subject: Re: [MSA] Re: MSA Conference Video -- Don

Hi Pam,
I have the tapes here in Austin. I plan to view them this week and
chart some time-lines on segments that we will use in the final
production. We have about 12 hours of tape.  (Six hours from each
camera.) Then, Sylvia and I will travel to Washington D.C. the week
of April 12-16 to join my son Dave at an editing studio to put the
final package together.  I have never done this before and have no
idea what is involved.

All I can say is that I am as anxious to make them available as
everyone is to receive them.  I still hope to make the program
available on both VHS and DVD.  Once we have the master completed,
we'll be able to calculate the cost of reproduction.  Rather than
offer the end product for a fixed donation I would rather be able to
just make them available to everyone. Of course, this would require
us to find some people who are willing and able to underwrite the
cost.  If you have any ideas along that line, please let me know.

Thanks for checking in and giving me the chance to bring everyone up
to speed!
Big HUGS!
Don

Don Summers, President
SDS/MSA Support Group

The SDS/MSA Support Group is a Non Profit corporation devoted to
reaching and assisting the Patients, Caregivers, Family Members and
Physicians who are dealing with Shy-Drager Syndrome (Also known as
Multiple System Atrophy).

Our mission is to educate and support these people by establishing a
never-ending circle of information among all involved.
This has become known as the  "Circle of Hope"!
Please visit our website, www.shy-drager.org  I can be reached at the
toll free number 866-737-4999 or via e-mail at Don.Summers@shy-
drager.com The SDSMSA Support Group also sponsors the e-mail list,
shydrager@yahoogroups.com
Your financial assistance is always needed and greatly appreciated!

Contributions may be mailed to:
The SDS/MSA Support Group
2004 Howard Lane
Austin TX 78728
All contributions will be acknowledged and are tax deductible.


_______________________



b. Announcing the Danish MSA Society

From:  "hansjp" <hansjp@...>
To: shydrager@yahoogroups.com
Date:  Sun Mar 28, 2004  9:52 am
Subject:  The Danish MSA Society

We are pleased and proud to announce the official foundation of a
Danish MSA Society.

It is the society's aim to promote understanding and knowledge of
MSA, to financially support scientific research into MSA and to
support patients, their families and carers.

The society has now been registered, and we are working towards
creating a website as well as printed material. Please watch this
space.

If anybody has any suggestions or recommendations please let us know.
Thank you.

Best wishes,
Hans and Birgit in Copenhagen, Denmark
hansjp@...

_________________________________________________________


2. MSA RESEARCH STUDIES

a. New Ataxia Research Program at MGH

--- In shydrager@yahoogroups.com, "Bob Coffey" <bcoffeyusa@...>
wrote:

Hello Everyone,

My name is Bob Coffey.   I am assisting Dr. Schmahmann in getting
candidates invited to his Ataxia Research Project.  Well, the early
response is quite astounding. In fact, Support Group members have
reacted swiftly to this invitation.  It is abundantly clear that
those people, who have Ataxia in its many forms, will send a fast e-
mail when a worthwhile Ataxia specific project comes along.

Now, I would like to show you a copy of Dr. Schmahmann e-mail to me.
Please join me and all the other people with various foams of Ataxia,
and contact Dr. Schmahmann as soon as you can, according to his e-
mail that follows:

Dear Bob,

We are starting a new research program here in the Ataxia Unit at the
MGH, a collaboration between Molecular Biologists, Neurogenetics
Investigators, and the Clinicians to try to understand more about the
genetics and clinical manifestations of people with Ataxia. I have
personal experience of a number of families who have Ataxia, in whom
the known genetic tests are negative, but the disorder clearly runs
in families. We are starting to collect blood samples and clinical
histories from my patients who are so affected, as well as from
people with sporadic Ataxia and Multiple Systems Atrophy, to develop
a Genetic Bank that we can study.  I am excited about this
development, now approved by our Institutional Review Board, as I
believe that it will be an important step in the fight against these
disorders. Please feel free to send this e-mail to other members of
the Support Groups, and if interested, have them drop me an e-mail or
a note so that we can send them an Official Letter inviting them to
participate in this research.

Regards,

Jeremy S.

Jeremy D. Schmahmann, M.D.
Associate Professor of Neurology
Harvard Medical School
Director, Ataxia Unit;
Cognitive/Behavioral Neurology Unit
Massachusetts General Hospital VBK
Massachusetts General Hospital
915 Fruit Street
Boston, MA 02114
Tel: (617) 726-3216
Fax: (617) 726-2353
cerebellum@...

_______________________


b. Update on 5 Year MSA Research Study

This update is from a reader who is involved in the 5 year MSA
Research Study.  If you haven't heard about this important study yet
please see http://health.ucsd.edu/news/2003/12_05_Shults.html

If you'd like to sign up or find out more the study centers are listed
at http://groups.yahoo.com/group/msa-news


--- In shydrager@yahoogroups.com, "Roger Gerard" rgerard@...
wrote:

Today, Ann received a Study Outline for the Initial Evaluation for
CASE/Control Subjects for the MSA research project whose stated
purpose is to learn more about the genetic (hereditary) and
environmental factors that contribute to the development of MSA and
the natural history of the disease.

The Study Outline is as follows:

   a.    Consent subject/HIPAA
   b.    Demographics
   c.    Medical History (source doc)
   d.    Medication Log (source doc)
   e.    Neuro Exam (source doc)
   f.     Mini Mental State Examination
   g.    Minimum Date Set no case
   h.    Unified MSA Rating Scale
           I.  Activities of Daily Living
           II. Motor Examination Scale
           III. Orthostatic Hypotension
           IV. Disability Scale
   a. Composite Autonomic Symptom Scale (COMPASS) no case
   b. Consensus Diagnostic Criteria
   c. Quality of Life Scale, SF36 ( self-administered)
   d. LAB DRAW 20 ML

The second page of the Study Outline is a follow-up evaluation of
most of the above criteria.

We won't have anything to report on this evaluation until Ann
participates on April 26.  I have volunteered to be in the control
group but I don't have an appointment yet.  I was hoping that it
could have been done on the same day.

Roger

_________________________________________________________


3. NEWS FROM EUROPE

a. Diagnosis & Treatment of Multiple System Atrophy: An Update
by Dr. Gregor Wenning, European MSA Study Group

This update published in January 2004 is a comprehensive, easy to
understand article that everyone should read and share with their
doctor.
See:
http://www.acnr.co.uk/pdfs/volume3issue6/v3i6reviewart1.pdf

Note you need Adobe Acrobat Reader installed to view the document at
the above link.  If you don't have Adobe Acrobat Reader you can
download it here:
http://www.adobe.com/products/acrobat/readstep2.html


_______________________


b. NNIPPS Project (neuroprotection and natural history in MSA and PSP)

http://www.iop.kcl.ac.uk/iopweb/departments/home/default.aspx?
locator=542

Natural History, Neuroprotection and Biology of Parkinson's Plus
Syndromes :
The NNIPPS (Neuroprotection and natural history in MSA and PSP)
Project

Principal Investigator : Professor Nigel Leigh
Co-investigators : Professor Gilbert Bensimon (Hôpital Pitié-
Salpętričre, Paris); Professor Albert Ludolph (University of
Ulm); Ms
Caroline Murphy (Clinical Trials Manager and Senior Clinical Research
Associate), Dept Neurology, PO41, Institute of Psychiatry; Ms Hannah
Taylor, Clinical Trials Administrator, NNIPPS Consortium; And the
European NNIPPS Consortium

Research Question:

1. Does the neuroprotective agent Riluzole significantly prolong
survival and maintain quality of life in MSA and PSP?
2. What is the natural history of MSA and PSP?
3. Are genetic factors important in the pathogenesis of these
disorders?

Aims and Objectives:  To determine the efficacy and tolerability of
Riluzole in MSA and PSP, and to understand the clinical, cognitive,
neuroimaging and biological factors that influence disease
progression.

Background: Multiple system atrophy (MSA) and Progressive Supranuclear
Palsy (PSP) each have a prevalence of 45/100,000 and are usually fatal
within 5 - 10 years of onset. Because Riluzole is the first drug
shown to increase survival in any neurodegenerative disease (ie MND)
and because it has generic neuroprotective actions, we designed a
trial to test its efficacy in MSA and PSP using survival as the
primary endpoint.

In addition we sought to understand the natural history, clinical
features, MRI changes, cognitive abnormalities and biology of these
diseases, and to construct prospectively validated assessment
instruments.

Methods: NIPPS is an international (UK, France, Germany) parallel-
group, stratified (PSP, MSA), placebo-controlled, randomised,
multicentre (49 centres) trial of Riluzole (up to 200 mg daily) in
MSA and PSP. Power calculations based on existing (retrospective)
natural history data suggested that we would need 360 patients in
each stratum to detect a 30% decrease in relative risk of death at 36
months with 80% power.

The trial is co-ordinated in London and Paris. Patients have detailed
clinical, cognitive, MRI, health economics and neuropathological
assessment. Biological samples (serum, plasma, DNA) are collected for
all patients.

Analyses include an intent-to-treat efficacy analysis of all patients
randomised to the MSA and PSP strata; evaluation of diagnostic
accuracy using neuropathology, and sequential studies of MRI,
clinical features, cognition changes and healthcare costs.

The final results of the study will be available early in 2006.

Results: 767 patients (363 PSP; 404 MSA) have been recruited.

Conclusions: The NNIPPS study represents the largest prospective
natural history study ever undertaken of MSA and PSP and the largest
clinical trial in these disorders. Projections from the blinded data
suggest that predictions on survival were correct. The study will
provide unique data on diagnosis and the evolution of these diseases.
It will provide a unique biological resource (genetics and
proteomics) for the study of pathogenic factors.

This European collaboration provides a model for large scale
studies into relatively rare but disabling and fatal 'orphan'
neurodegenerative diseases.

Funding Partners: European Union, Assistance Publique des Hôpitaux
de Paris, Aventis

______________________________________________________

4. ODDS & ENDS

a. Family Caregiver Newsmagazine

This will be of particular interest to Canadian residents as it lists
many local resources.  There are also general articles of interest to
caregivers anywhere.

See:
http://thefamilycaregiver.com/publication/

______________________________________________________

To subscribe to the MSA Online Support Group
Please visit http://groups.yahoo.com/group/shydrager
Register and click on "Join this Group"
Over 900 members from 25 countries share coping tips daily.

To view past issues of Multiple System Atrophy News please go to:
http://groups.yahoo.com/group/msa-news
Click on "Messages"
To have the monthly newsletter delivered to your inbox send
an email to msa-news-subscribe@yahoogroups.com

MSA support groups are forming in the US and around the world.
To view a list of MSA support groups please see:
http://www.shy-drager.org

Did you know? Much of the research news about MSA comes from
leads from you, our readers. If you know of any research news you'd
like to share please contact the MSA News editor at
pbower@...

______________________________________________________

Hello everyone and welcome to new subscribers.

I apologize for not getting a newsletter out since March.  I hope to
have one ready within the next few weeks.  I welcome news
submissions from anyone so please forward anything you have directly
to me at pbower@...

Past issues of MSA-NEWS still contain relevant information that you
are free to browse at our website.

Go to:

http://groups.yahoo.com/group/msa-news

Click on "Messages"

Best regards,
Pam

_________________________________________________________

Multiple System Atrophy News - January 2005
_________________________________________________________

Table of Contents

1. SUPPORT GROUP NEWS AND INFORMATION
a. Danish MSA Society Website
b. Free Booklet from NORD: The Physician's Guide to Multiple System
Atrophy.

2. MSA IN THE MEDIA
a. MSA Video Documentary Expected in 2005
 
3. MSA RESEARCH
a. Report: 2nd International Meeting on Multiple System Atrophy
b. Research: Water Helps Low Blood Pressure
c. Research: "Smart Drug" for Low Blood Pressure
d. Research: Riluzole improves motor deficits in rat model of
multiple system atrophy

4. ODDS & ENDS
a. Ask the Doctor: What can be done for repeated urinary infections?

_________________________________________________________

1. SUPPORT GROUP NEWS AND INFORMATION

a. Danish MSA Society Website

From: "Birgit Meister" <birgitmeister@...>

http://www.msa-danmark.dk

Dear Pam,

This is to inform you, that we now have a MSA homepage in Danish.
The address is http://www.msa-danmark.dk
We plan to also have a version in English later.
If you have any suggestions you are more than welcome.

All the best Hans and Birgit in Copenhagen, Denmark


b. Free Booklet from NORD: The Physician's Guide to Multiple System
Atrophy

See:

http://www.rarediseases.org/programs/mult_sys_atrophy_brochure.html

_________________________________________________________

2. MSA IN THE MEDIA

a. MSA Video Documentary Expected in 2005

"Sophie's Search for a Cure", a 1-hour video documentary about
Sophia Dohm, who has MSA, is expected to be completed in 2005.  The
production, announced in this newsletter in 2002, has taken much
longer than anticipated, and the producers thank the MSA/PSP
community for their patience.  Sophie's Search for a Cure will be
distributed on DVD and VHS, and hopefully will receive television
broadcasts and be "streamed" on the internet.  Contact information
will be provided as soon as the video is available.


_________________________________________________________


3. MSA RESEARCH NEWS

a. Report: 2nd International Meeting on Multiple System Atrophy
Rome, Italy
June 17-18 2004

Source: "SMART NEWS" - Summer 2004
http://www.msaweb.co.uk/smart_2004_summer.pdf

This event was held as a satellite meeting of the 8th International
Congress of Parkinson's diseases and Movement Disorders. Tim Young,
Sarah Matheson Trust Clinical Research Fellow, summarizes the key
presentations made during the meeting.

Introduction:

Etiopathogenesis of MSA
by Professor Nick Wood

In this talk Prof Wood summarized the current situation on genetics
and MSA.  Of course, at present, to make a clinical diagnosis of MSA
requires the exclusion of a family history. However, this does not
mean that genetic factors are unimportant in MSA.

A few conditions in medicine follow simple genetic patterns (e.g.
with the condition cystic fibrosis, if both parents are carriers of
the faulty gene, you would expect that, on average, 1 in four of
their children would be likely to develop cystic fibrosis). However,
other conditions are more complex (e.g. "X"- linked disorders where
males are more prone to develop disorders). Most medical conditions
have even more complex genetic components, for example
susceptibility to coronary heart disease may be influenced by many
different genes which influence cholesterol levels, blood pressure
etc.

The protein a-synuclein has been implicated in both Parkinson's
disease and MSA as it is found to build up in the damaged brain
areas in these conditions. That excessive a-synuclein itself is
likely to be important has recently been shown by the discovery of a
family with an inherited form of Parkinson's disease where there are
too many genes coding for a-synuclein, resulting in excess of the
protein.However, inherited forms of Parkinson's only seem to make up
5-10% of all cases of Parkinson's disease, and a-synuclein gene
disorders have not yet been associated with MSA.

There has been recent interest in the newly described condition
FXTAS (Fragile X associated Tremor/Ataxia Syndrome). This condition
is caused by a trinucleotide repeat. It is essentially a problem in
the same part of the DNA which leads to the condition Fragile X
syndrome in children/young adults, but FXTAS has fewer repeats of
the trinucleotide. The syndrome was noticed when it was noted that
the grandfathers of some children with Fragile-X syndrome were noted
to have a tremor and ataxia (FXTAS). It was initially claimed that
FXTAS had many similarities with MSA. However, FXTAS also tends to
produce a peripheral neuropathy (not associated with MSA) and
autonomic failure is not a prominent feature, unlike MSA. Finally
the inclusion bodies are a-synuclein negative in FXTAS, and are
found in the nerve cells themselves rather than in the nerve support
cells (oligodendroglia) seen in MSA.

The FXTAS story does at least show that candidate genetic areas or
genes can emerge which can then be tested for in MSA subjects. The
improvement of existing MSA DNA banks should help the search for
such candidate gene defects as and when they are discovered in the
future.

During subsequent questions it was agreed that 2 areas might help
target the search for candidate genes:

• Possible investigations of the 5% of MSA subjects who develop
symptoms at a young age (40 years or younger); a similar approach
helped in the discoveries of inherited Parkinson's disease.

• In Europe/USA the ratio of MSA-P (Predominantly parkinsonian) to
MSA-C (predominantly cerebellar) is 2:1. In Japan this ratio is 1:2.
Racial differences in genes occur between Caucasian and Japanese
populations and may thus provide clues to possible candidate genes.

_____________________________



Clinical Skills
by Professor Niall Quinn

Prof Quinn discussed some of the findings from the history and
examination, which can point to a possible diagnosis of MSA. In
particular he emphasised a few points which are not always widely
utilised:

• In the history it is important to ask about sleep disturbance-this
may be present but not appreciated by the patient and so asking the
partner about this is important. Specifically, REM Behaviour
Disturbance ("acting out dreams") may be common in MSA, sometimes
predating the diagnosis of MSA • On examination, classical
"pillrolling" tremor in the hands is only seen in 9% of MSA, being
much more common in Parkinson's disease.

• 50% of MSA patients have pyramidal signs on examination (including
brisk reflexes elicited with a tendon hammer). These findings are
also commonly seen in stroke patients, but in MSA these findings are
NOT associated with significant weakness.


_____________________________



Autonomic Testing
by Professor Mathias

Prof Mathias outlined many of the autonomic tests which are
routinely used to help diagnose MSA, which have previously been
discussed in SMarT News.

Single Photon Emission Tomography (SPECT) & Positron Emission
Tomography by Dr Sid Gilman and Dr Angelo Antonini

Angelo & Dr Gilman discussed various aspects of these imaging
techniques, which use short-lived radioactive injections to
highlight certain areas in the brain. The specific areas usually
looked at include the dopamine producing nerves and the receptors
upon which they act. Whilst the dopamine producing nerves are
affected in both MSA and PD, the dopamine receptors are especially
depleted in MSA. SPECT cannot only help differentiate MSA and PD,
but can help monitor progression in both conditions. It therefore
provides a means to monitor progression in MSA when designing
therapeutic trials.

Dr Gilman also discussed MIBG and 11CHED tracers used in SPECT
studies of the heart. Recently there has been a lot of interest in
imaging the heart in PD, as there seems to be selective loss of the
small sympathetic nerves supplying the heart. Whilst the clinical
implications of this are not fully understood, diagnostically this
is useful as this may help differentiate from MSA where these small
nerves are thought to be preserved. These scans are expensive
however, are not widely available, and some MSA subjects may also
show similar changes to those seen in PD (Dr.Gilman is currently
investigating this aspect).

_____________________________


Sphincter EMG
by Dr David Vodusek

David has several decades of experience in the use of sphincter EMG,
which can be used to help distinguish MSA from PD and other
disorders. The rationale behind the test is that Onuff's nucleus, a
small group of nerves near the base of the spine, which innervates
the anal and urethral sphincters, is specifically targeted in MSA.
The resulting damage to the sphincters results in specific changes
in the muscles of both sphincters as assessed with a very small
needle.

Some of the key points made:
• Other disorders including PD and previous haemorrhoid/prostate
surgery can also result in abnormal results
• Even if the test is initially normal, it can become abnormal
within the following 2 years in MSA. Therefore re-testing is
sometimes required after a normal test. If a second test, performed
2 years after their first, is also normal then a diagnosis of MSA
would be unlikely.
• Sphincter EMG testing is now standardised allowing better
correlation between different centres for this highly specialist
test.
• Interestingly an abnormal EMG result does NOT necessarily mean
that the patient will have any symptoms related to the anal or
urethral sphincters

_____________________________


Natural History of MSA: Prospective Studies
The European Multiple System Atrophy Study Group-EMSA-SG
by Professor Gregor Wenning

Gregor described the recent validation of the MSA rating scale. Both
a firm diagnosis and understanding of severity of MSA are clearly
essential to allow interpretation of any studies of treatment of MSA.

It is important to know that one is including true MSA patients and
have a way to decide if the treatment has led to an improvement, or
at least a slowing of, deterioration. For this reason the validation
of the MSA rating scale has provided an important tool to help
assess study results. It is highly likely that any treatment for MSA
would be most effective if started as early as possible.

For this reason improved techniques to confidently improve early MSA
diagnosis are needed. The rate of deterioration in MSA has also been
studied. This is important to know for therapeutic studies so that
it can be seen if the intervention results in a slowing of
deterioration in MSA. An additional element of the European MSA
study group has been the setting up of an MSA DNA bank.

There are currently 4 major ongoing studies of possible therapeutic
intervention in MSA, all of which are nearing completion:

• Neuroprotection and Natural History in Parkinson Plus Syndromes
(NNIPPS).
This study is looking at the effects of riluzole. Riluzole is a drug
which has been recently shown to slightly improve prognosis in Motor
Neuron Disease. It has many actions including blocking the release
of the neurotransmitter glutamate. It has been shown in rat models
of PD to protect against neuronal damage. About 400 patients with
MSA and 400 with PSP (another Parkinsons plus syndrome) have been
recruited and given even riluzole or placebo.

• Growth Hormone Study: Looking at the effects of Growth Hormone
(GH) injections in a smaller number of MSA patients. The scientific
background is not as powerful as for riluzole, but results are still
awaited.

• Minocycline is an antibiotic which also has antioxidant and
neuroprotective effects in animal models. This study is looking at
the effects of minocycline for 48 weeks in MSA, using the Unified
MSA rating scale as an end-point

• GDNF is a nerve growth factor which is being studied in MSA after
having shown improvements in PD. HOWEVER, this treatment requires
the drug to be infused via a small tube directly into the brain. The
trial design is that patients receive GDNF or placebo for 0-6 months
and then all patients receive GDNF for the remaining 6 months. The
above studies are still on going and so results have NOT been
reported yet. Results should start to become available in about a
year. Even if these results do not show an improvement, these
studies represent an important and exciting step forward in
MSAresearch as they provide the framework for future therapeutic
studies to be performed. Future research will not only focus on
developing new agents to try in studies, but also better ways to
differentiate MSA from other related conditions at an earlier stage.

Dr Tim Young, Neurovascular Medicine (Pickering Unit), Imperial
College London, St Mary's Hospital


b. Research: Water Helps Low Blood Pressure

http://news.bbc.co.uk/2/hi/health/4063049.stm
http://www.eurekalert.org/pub_releases/2004-12/icl-dwc120104.php
http://www.foodingredientsfirst.com/newsmaker_article.asp?
idNewsMaker=6970&f
Site=AO545
http://www.eurekalert.org/pub_releases/2004-12/icl-dwc120104.php

c. Research: "Smart Drug" for low Blood Pressure
http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=9666
http://www.innovations-
report.com/html/reports/medicine_health/report-34408.
html

d. Research: Riluzole improves motor deficits in rat model of
multiple system atrophy

Riluzole improves motor deficits and attenuates loss of striatal
neurons in a sequential double lesion rat model of striatonigral
degeneration (parkinson variant of multiple system atrophy).
J Neural Transm. 2004 Dec 7

Scherfler C, Sather T, Diguet E, Stefanova N, Puschban Z, Tison F,
Poewe W, Wenning GK.

Department of Neurology, University Hospital, Innsbruck, Austria.

We investigated neuroprotective effects of riluzole, an anti-
glutamatergic agent that is FDA approved for disease-modifying
therapy in amyotrophic lateral sclerosis (ALS), in an established
double lesion rat model of striatonigral degeneration (SND), the
neuropathological substrate of parkinsonism associated with MSA (MSA-
P). Riluzole was administered prior to and consecutively for ten
days following double lesion placement in the left-sided medial
forebrain bundle and ipsilateral striatum. Assessment of motor
behaviour using a flex field system showed a significant reduction of
motor disturbance in animals with striatonigral lesions treated with
riluzole compared to lesioned but untreated animals (P<0.001). DARPP-
32 immunohistochemistry revealed a significant reduction of absolute
striatal lesion volume in riluzole treated animals compared to
lesioned but untreated animals (P<0.01). No significant difference
in count of nigral dopaminergic neurons was found in treated versus
untreated double-lesioned animals. The results of our study indicate
that riluzole mediates neuroprotective effects in the double lesion
rat model of MSA-P. Whether riluzole also protects autonomic and
cerebellar pathways that are frequently affected in MSA remains to
be determined. Nonetheless, our study is the first to provide an
experimental rationale for exploring possible neuroprotective
effects of riluzole in MSA.

______________________________________________________


4. ODDS & ENDS

a. Ask the Doctor: What can be done for repeated urinary infections?
BY PAUL G. DONOHUE, M.D.
Nov 19, 2004
http://sun.yumasun.com/artman/publish/articles/story_13141.php


______________________________________________________


To subscribe to the MSA Online Support Group
Please visit http://groups.yahoo.com/group/shydrager
Register and click on "Join this Group"
Over 900 members from 25 countries share coping tips daily.

To view past issues of Multiple System Atrophy News please go to:
http://groups.yahoo.com/group/msa-news
Click on "Messages"
To have the monthly newsletter delivered to your inbox send
an email to msa-news-subscribe@yahoogroups.com

MSA support groups are forming in the US and around the world.
To view a list of MSA support groups please see:
http://www.shy-drager.org

Did you know? Much of the research news about MSA comes from
leads from you, our readers. If you know of any research news you'd
like to share please contact the MSA News editor at
pbower@...

_________________________________________________________

Multiple System Atrophy News - April 2005
_________________________________________________________

Table of Contents


1. SUPPORT GROUP NEWS AND INFORMATION
a. SDS/MSA Support Group Research Grant

2. MSA FUNDRAISERS
a. Susan Bourke runs London marathon for MSA charity - UK
b. "Running with a Purpose" marathon for MSA charity - USA

3. MSA IN THE MEDIA
a. WE MOVE launches "Life In Motion" - a nationwide awareness
campaign on movement disorders

4. MSA RESEARCH
a. First mouse model for multiple system atrophy points to new
treatment targets for brain diseases

5. MSA CLINICAL TRIALS
a. Efficacy of Therapeutic Interventions for Orthostatic Hypotension
in Parkinson's Disease and Multiple System Atrophy

6. ODDS & ENDS
a. Handicap lifts given to THS by Morrises

_________________________________________________________

1. SUPPORT GROUP NEWS AND INFORMATION

a. SDS/MSA Support Group Research Grant

For the past two years, The SDS/MSA Support Group has given 10% of
it's annual income to research.  This grant is given to the American
Autonomic Society to be used as a travel award by a researcher or
physician who will be presenting a paper at their conference that
year.  This research must deal with patient related studies.

If you donate to The SDS/MSA Support Group Inc. you can rest assured
that at least 10% of your donation will be directed to research!

Don Summers
President, SDS/MSA Support Group Inc.
http://www.shy-drager.org

_________________________________________________________

2. MSA FUNDRAISERS

a. Susan Bourke runs London marathon for MSA charity

On April 17, 2005 Susan Bourke ran the London marathon and raised
Ł2,000 for the Sarah Matheson Trust for Multiple System Atrophy
(http://www.msaweb.co.uk) in the UK.

A photo of Susan at the finish line is available at our MSA-NEWS
website for
web subscribers to view:

http://photos.groups.yahoo.com/group/msa-news/lst

Congratulations Susan!

Susan has also built an online fundraising page for MSA if you'd
still like
to donate to the cause.

Go to http://www.justgiving.com/susan-is-mad

-----


b. "Running with a Purpose" Marathon for MSA charity - USA - April
30, 2005

Eric and Erin Howe will be running in the marathon in Nashville,
Tennessee on April 30th, 2005 and will use this opportunity to raise
funds for the SDS/MSA Support Group (http://www.shy-drager.org).

To learn more, to donate or to offer words of encouragement go to:

http://www.runningwithpurpose.com

So far over $2000 has been raised.

Good luck Eric and Erin!

_________________________________________________________


3. MSA IN THE MEDIA

a. WeMOVE launches "Life In Motion" - a nationwide awareness
campaign on movement disorders

See the Life In Motion website at http://www.life-in-motion.org


This press release is available online at any of these websites:
http://www.prnewswire.com/cgi-bin/stories.pl?
ACCT=109&STORY=/www/story/04-12-2005/0003386412&EDATE=

http://www.rednova.com/news/display/?id=143132&source=r_health

http://biz.yahoo.com/prnews/050412/nytu010.html?.v=4


Press Release

More Than 40 Million Americans - Nearly One in Seven - Are Affected
by Movement Disorders According to Latest Data Review

Tuesday April 12, 8:30 am ET

- Forty-Five Professional and Patient Groups Join Life in Motion
Campaign to Educate Patients, Enhance Quality of Care for Wide Array
of Chronic Neurological Conditions


NEW YORK, April 12 /PRNewswire/ -- WE MOVE (Worldwide Education and
Awareness of Movement Disorders) announced at the American Academy
of Neurology's 57th Annual Meeting in Miami Beach, Florida, that
more than 40 million Americans -- nearly one in seven people -- are
affected by chronic and often debilitating movement disorders,
including tremor, Parkinson's disease, Tourette's syndrome,
Huntington's disease, dystonia, and spasticity, according to the
most recent review of prevalence data on such conditions. WE MOVE
also reported that a patient with a movement disorder may visit more
than 15 doctors over the course of five years before receiving an
accurate diagnosis.

In response to this public health problem, WE MOVE is spearheading a
coalition of more than 40 professional and patient advocacy groups
to launch Life in Motion -- a campaign to raise awareness about the
more than 30 neurological conditions that may be classified as
movement disorders, and encourage earlier diagnosis and treatment.

"The number of people challenged by movement disorders is more than
twice the number of people with diabetes and more than four times
the number of those surviving cancer," said Susan Bressman, M.D.,
President of WE MOVE and Chairperson of the Department of Neurology
at Beth Israel Medical Center. "Yet many people have little to no
knowledge of such devastating disorders as restless legs syndrome,
spasticity, and dystonia which affect more than 40 million people in
the U.S. and place a significant burden on patients' lives. The Life
in Motion campaign will bring much-needed attention to the broad
spectrum of movement disorders to help stimulate earlier diagnosis
and effective treatment."

Actress Geri Jewell, a star of the HBO drama series "Deadwood," has
joined WE MOVE and its coalition partners in this awareness
campaign. Ms. Jewell, who has cerebral palsy and is challenged with
movement disorders, achieved acclaim early in her career as the
first person with a visible disability to appear in an ongoing role
on a primetime television series, as Cousin Geri in the hit
comedy "Facts of Life."

"The Life in Motion campaign will make a significant difference in
the lives of millions of people and I feel privileged to be a part
of such an important campaign," said Ms. Jewell. "I know from
personal experience how having a movement disorder makes a person
vulnerable to being misunderstood in many ways, large and small, and
to worry that life and its possibilities have been diminished.
Changing this for the millions of people with movement disorders
requires education to empower people to take more control over their
care and their lives, which is what Life in Motion is all about,"
continued Ms. Jewell.

The Life in Motion Resource Center

As part of this nationwide awareness campaign, WE MOVE has
established a Life in Motion Web site, http://www.life-in-
motion.org , that includes downloadable patient education brochures
and information on movement disorders. The Web site also includes
information on the Life in Motion campaign, Life in Motion coalition
members, an online press room, a glossary of terms, as well as links
to the WE MOVE Web site, http://www.wemove.org . WE MOVE is the most
comprehensive resource for movement disorder information and
education, and is the only organization of its kind. In addition,
patients, their families and caregivers, as well as the general
public, may call the Life in Motion Resource Center automated toll-
free number at 1-866-LIM-3136 (1-866-546-3136) to obtain brochures
and other educational material, including treatment information,
free-of-charge. In the coming months, a television public service
announcement, unveiled at the AAN meeting, featuring country singer
Johnny Bush who suffers from spasmodic dysphonia, a form of dystonia
that affects the vocal cords, will premier announcing the Life in
Motion Resource Center and encouraging those who think they may be
challenged by a movement disorder to seek help.

About Movement Disorders

Movement disorders are conditions that originate in areas deep
within the brain. They are caused by changes to specific regions of
the brain and nervous system, the cause of which is mostly unknown.
These special areas, which control movement, send chemical messages
to other parts of the brain. These signals set off a chain of events
that eventually result in contractions or spasms of muscles
manifested by involuntary movements, such as tremors, dystonia and
tics, or stiffness of muscles as seen with spasticity. In people
with a movement disorder, this communication system is disrupted and
interferes with the ability to produce and coordinate voluntary
movements or the inability to stop unwanted involuntary movements.

"Movement disorders are chronic conditions that can't be completely
cured. They can, however, be effectively managed if they are
properly diagnosed and treated, allowing patients to live with less
pain, less discomfort, fewer limitations and greater confidence,"
said Stanley Fahn, M.D., H. Houston Merritt Professor of Neurology
and Movement Disorders Division Chief, Columbia University in New
York City, and past president of the American Academy of
Neurology. "The first step is obtaining an appropriate diagnosis,
which usually requires referral to a neurologist who is trained to
evaluate these complex disorders and is knowledgeable about the
latest treatments."

According to Joseph Jankovic, M.D., Director of the Parkinson's
Disease Center and Movement Disorders Clinic at Baylor College of
Medicine, Houston, Texas and past president of the Movement
Disorders Society, neurologists categorize movement disorders into
two broad categories: "hyperkinetic" and "hypokinetic." Hyperkinetic
disorders are those that cause excess unwanted movement and muscle
contractions, such as dystonia, spasticity, myoclonus, tremors, and
tics. Hypokinetic disorders are associated with slowness of
movement, stiffness or rigidity, and other symptoms. These disorders
include Parkinson's disease, progressive supranuclear palsy,
multiple system atrophy, and others. Some movement disorders, such
as restless legs syndrome, are characterized by abnormal and
unpleasant sensations and an urge to move.

Effective treatment depends on the underlying cause of the condition
and may include oral medications; botulinum toxin injection therapy
targeted to spastic or abnormally contracting muscles; surgery
(including deep brain stimulation); and physical therapy. In many
cases, combinations of several drugs and therapies are used. The
effective management of a movement disorder usually involves a multi-
disciplinary team of specialists and may include the patient's
primary care physician as well as the neurologist, physiatrist
(physical rehabilitation specialist), nurses, and physical,
occupational, and speech therapists. Social workers, teachers, and
psychologists may also be involved to help patients and their
families or caregivers cope with the psychosocial impact of these
conditions.

"Patients often find it overwhelming to deal with not only their
condition but also the constant referrals to specialists for tests
and treatments," said Dr. Bressman of WE MOVE. "A major goal of the
Life in Motion campaign is to help patients and their caregivers
navigate the complex and often fragmented health care system and
take a more active role in managing their own care."


     Life in Motion Coalition Members

     American Academy of Cerebral Palsy & Developmental Medicine
     American Academy of Neurology
     American Association of Neuroscience Nurses
     American Academy of Physical Medicine & Rehabilitation
     American Parkinson's Disease Association, Inc.
     American Stroke Association
     Bachmann-Strauss Dystonia and Parkinson Foundation, Inc.
     Benign Essential Blepharospasm Research Foundation, Inc.
     Care4Dystonia, Inc.
     Child Neurology Foundation
     Child Neurology Society
     Dystonia Medical Research Foundation
     Easter Seals
     Huntington's Disease Society of America
     Huntington's Study Group
     International Dystonia On-Line Support Group
     International Essential Tremor Foundation
     International Rett Syndrome Association
     Movement Disorder Society
     Musicians with Dystonia
     National Ataxia Foundation
     National Multiple Sclerosis Society
     National Organization for Rare Disorders, Inc.
     National Parkinson Foundation, Inc.
     National Spasmodic Dysphonia Association
     National Spasmodic Torticollis Association
     National Spinal Cord Injury Association
     National Stroke Association
     North American Brain Injury Society
     On-Line SD Support Group
     The Parkinson Alliance
     Parkinson Association of the Rockies
     Parkinson's Disease Foundation
     Parkinson Foundation of the Heartland
     Parkinson Pipeline Project
     Parkinson Study Group
     Pediatric Neurotransmitter Disease Association
     Restless Legs Syndrome Foundation
     Rett Syndrome Research Foundation
     Society for Progressive Supranuclear Palsy, Inc.
     Spasmodic Torticollis/Dystonia, Inc.
     Spastic Paraplegia Foundation, Inc.
     Tourette Syndrome Association, Inc.
     Tremor Action Network
     United Cerebral Palsy Research and Educational Foundation
     Wilson's Disease Association

     About WE MOVE
WE MOVE is a not-for-profit organization that has been educating and
informing the movement disorder community for more than a decade.
The mission of WE MOVE is to facilitate the communication of
emerging clinical advances and therapeutic approaches to the
management and treatment of movement disorders. Through its award-
winning, HON-compliant Web sites, and as an accredited provider of
continuing medical education (CME), WE MOVE strives to meet the
educational needs of healthcare professionals, patients, and
caregivers. WE MOVE develops up-to-date training programs and
comprehensive, interactive teaching materials to assist the
community in deepening their understanding of movement disorders,
their pathophysiology, etiology, differential diagnosis, and state-
of-the-art interventions. WE MOVE believes that increased knowledge
and understanding promote timely, accurate diagnosis, and up-to-date
treatment, resulting in a better quality of life for individuals
affected by movement disorders.

More than 130,000 people visit the WE MOVE award-winning Web sites
each month to access accurate, timely, and balanced information and
resources on movement disorders, http://www.wemove.org (consumers);
http://www.mdvu.org (professionals).

The Life in Motion campaign is sponsored by WE MOVE and funded by an
unrestricted educational grant from Allergan, Inc.

_________________________________________________________

4. MSA RESEARCH

a. First mouse model for multiple system atrophy points to new
treatment targets for brain diseases

http://www.eurekalert.org/pub_releases/2005-03/uopm-fmm031705.php

Public release date: 23-Mar-2005
Contact: Karen Kreeger
karen.kreeger@...
215-662-2560
University of Pennsylvania Medical Center

(Philadelphia, PA) – A newly developed animal model for Multiple
System Atrophy (MSA) – a collection of neurodegenerative
disorders
once thought to be three separate diseases – sheds new light on
this
little-studied brain disease, according to research from
investigators at the University of Pennsylvania School of Medicine.

Virginia M.-Y. Lee, PhD, Director of Penn's Center for
Neurodegenerative Disease Research, and colleagues demonstrated that
the mice showed symptoms similar to human MSA. These include an
accumulation of a protein called alpha-synuclein in
oligodendrocytes – cells that produce the protective myelin
sheath
that covers axons. This protein accumulation disables
oligodendrocytes, leading to a loss of the sheath on neurons and
eventually nerve-cell malfunction and death. The mice also showed
slowly progressive problems with their motor skills associated with
the nerve-cell damage. Neurons are important in transmitting signals
and in maintaining learning and memory.

"The uniqueness of this disease is that, unlike most of the
neurodegenerative diseases, which affect neurons primarily and
oligodendrocytes secondarily, this is the other way around," says
Lee. In fact, there is growing evidence that non-neuronal cells also
play a role in amyloid deposits in Alzheimer's disease and
amyotrophic lateral sclerosis (ALS) mouse models. Lee and colleagues
report their findings in the March 24, 2005 issue of Neuron.

MSA is so named because it affects multiple parts of the nervous
system. Initially MSA was given three names, based on the symptoms
physicians had observed. However, when they closely examined
patients' pathology, the disorders seemed related, based on the
alpha-synuclein proteins in cells. In the clinic, many patients with
MSA present with symptoms similar to Parkinson's disease (PD), and
MSA has been misdiagnosed as such.

Collectively, MSA now includes three related disorders characterized
by their most prominent symptoms: olivopontocerebellar atrophy,
which affects balance, coordination, and speech; striatonigral
degeneration, the closest to Parkinson's disease because of slow
movement and stiff muscles; and Shy-Drager syndrome, which involves
altered bowel, bladder, and blood-pressure control. Other general
symptoms include dizziness, impaired speech, breathing and
swallowing difficulties, and blurred vision. Most patients develop
dementia late in the course of the disease, which is usually
diagnosed in people over 50.

Currently there is no specific drug to treat the myelin and nerve
damage caused by the protein inclusions. Parkinson's disease drugs
and others are used to alleviate early symptoms. "With this animal
model, we now can plan tests of potential therapies for Multiple
System Atrophy as part of our drug discovery program for Parkinson's
disease, MSA, and related disorders," says Lee.

###

The study was funded in part by the National Institutes of Health.
Ikuru Yazawa, Benoit I. Giasson, Ryogen Sasaki, Bin Zhang, Sonali
Joyce, Kunihuro Uryu, and John Q. Trojanowski, all from Penn, are
study co-authors. The authors report no conflicts of interests
related to this research.
For more information see
http://www.ninds.nih.gov/disorders/msa/msa.htm. This release can
also be found at: www.uphs.upenn.edu/news.
PENN Medicine is a $2.7 billion enterprise dedicated to the related
missions of medical education, biomedical research, and high-quality
patient care. PENN Medicine consists of the University of
Pennsylvania School of Medicine (founded in 1765 as the nation's
first medical school) and the University of Pennsylvania Health
System.

Penn's School of Medicine is ranked #3 in the nation for receipt of
NIH research funds; and ranked #4 in the nation in U.S. News & World
Report's most recent ranking of top research-oriented medical
schools. Supporting 1,400 fulltime faculty and 700 students, the
School of Medicine is recognized worldwide for its superior
education and training of the next generation of physician-
scientists and leaders of academic medicine.

The University of Pennsylvania Health System includes three owned
hospitals [Hospital of the University of Pennsylvania, which is
consistently ranked one of the nation's few "Honor Roll" hospitals
by U.S. News & World Report; Pennsylvania Hospital, the nation's
first hospital; and Presbyterian Medical Center]; a faculty practice
plan; a primary-care provider network; two multispecialty satellite
facilities; and home care and hospice


_________________________________________________________

5. MSA CLINICAL TRIALS

a. Efficacy of Therapeutic Interventions for Orthostatic Hypotension
in Parkinson's Disease and Multiple System Atrophy

http://www.clinicaltrials.gov/ct/show/NCT00103597

This study is currently recruiting patients.

Sponsored by: Royal Brisbane and Women's Hospital
Queensland, Australia

Purpose

Patients with Parkinson's Disease or Multiple System Atrophy (MSA),
and symptoms of orthostatic hypotension, are eligible for the study.
Each patient will have three weeks of conservative therapy, three
weeks of therapy with fludrocortisone, and three weeks of therapy
with domperidone. Autonomic testing, a symptom questionnaire,
bedside blood pressure testing, and Unified Parkinson Disease Rating
Scale (UPDRS) will be performed after each intervention.

Enrolled patients, ages 40-95, must have Parkinson's or MSA,
diagnosed by a neurologist, and symptoms of orthostatic hypotension.
Each patient will fill out two validated questionnaires to determine
if they are candidates for the study. Baseline patient details, such
as their medications and UPDRS, will be recorded. Medications must
be held stable during the period of the study.

Each patient will then have three weeks of conservative therapy,
three weeks of therapy with fludrocortisone, and three weeks of
therapy with domperidone. Autonomic testing, a symptom
questionnaire, bedside blood pressure testing, and UPDRS will be
performed after each intervention.


Location and Contact Information

K Schoffer, MD
3636-7675
schoffer@...

Royal Brisbane and Women's Hospital
Brisbane, Queensland
4029 Australia


_________________________________________________________

6. ODDS AND ENDS

a. Handicap lifts given to THS by Morrises


ROBERT LAMB, The Tullahoma News Staff Writer
February 03, 2005

Thanks to the generosity of the family of the late Charles "Speedy"
Morris and the assistance of the Association for Retarded Citizens
(ARC) of Coffee and Moore counties, Tullahoma High School has
acquired two handicap lifts to meet the needs of its special
education department.

In a recent ceremony attended by Tullahoma school personnel and
members of Morris family, the school's physical therapy room was
dedicated to the memory of Morris, who died in 2002 after a long
bout with a crippling neurological disorder known as Multiple System
Atrophy.

"We all have limitations but Speedy knew what it meant to be
handicapped in ways that we can only imagine," John Eaton, area
director for the ARC, said. "He would appreciate that his family has
done something that will help others who also struggle."

Members of the Morris family who attended the dedication at THS
included his wife Marilyn, his oldest son Tim and granddaughter
Lauren.

The Morris family includes two other sons, Dr. Stephen David Morris
and Robert Douglas Morris, and five other grandchildren.

In the past, Tullahoma High School was equipped only with a hand-
cranked Hoyer lift for moving handicapped students.

While useful, the device was not adequate to meet the hygienic and
therapeutic needs of handicapped students who do not have full
control of their bodies, said Cindy Dacosta, special education
teacher for Tullahoma city schools.

Acknowledging the needs of the department, Rene Culbertson, special
education director for Tullahoma city schools, put in a request with
the ARC of Coffee and Moore counties for funds to buy a sufficient
lift system for the school.

However, when the request crossed the desk of John Eaton, the
equipment in the Morris family's possession immediately came to mind.

"I knew Speedy and requested they try buying the old unit from the
Morris family," Eaton said.

In the end, the Morris family ended up donating the equipment to the
high school, saving the school and the ARC approximately $13,000.

One unit was installed in a restroom to assist wheelchair users with
their needs and the primary unit was installed in the physical
therapy room.

To ensure that teachers and nurses were efficient with the new
equipment, Dan McKessey, a representative of Atlanta-based SureHands
Lift and Care Systems (manufacturer of the Morris family's lift),
conducted a brief technical orientation.

Speedy Morris's life was one filled with physical activity and
community service.

A three-sport athlete in high school, he went on to play football in
college and even passed up an offer to try out for the St. Louis
Cardinals, deciding to join the Navy instead.

He returned to Tullahoma to work after serving aboard ships in the
Pacific during the Korean War. At the time of his retirement in
1997, he was owner and operator of Morris Fabrics in Tullahoma.

It was also in 1997 that he however was diagnosed with Multiple
System Atrophy, or Shy-Drager Syndrome,

The disorder causes disruption between the brain and various parts
of the body, resulting in the rapid shutdown of various organs.

Under the ravages of the disease, he became more and more dependent
upon his family and devices such as walkers, wheelchairs and
ultimately the SureHands lifts.

At the ceremony, John Eaton spoke briefly about Speedy's loving
nature.

"I think Speedy was in a unique position to understand and
appreciate what we do today," Eaton said, "because this room and
equipment will make life a little easier for people who struggle
with limitations imposed by physical handicaps."

Now fully installed, the lifts are already being used to meet the
needs of special students.

______________________________________________________


To view past issues of Multiple System Atrophy News please go to:
http://groups.yahoo.com/group/msa-news
Click on "Messages"
To have the monthly newsletter delivered to your inbox send
an email to msa-news-subscribe@yahoogroups.com

To subscribe to the MSA Online Support Group
Please visit http://groups.yahoo.com/group/shydrager
Register and click on "Join this Group"
Over 900 members from 25 countries share coping tips daily.

MSA support groups are forming in the US and around the world.
To view a list of MSA support groups please see:
http://www.shy-drager.org

Did you know? Much of the research news about MSA comes from
leads from you, our readers. If you know of any research news you'd
like to share please contact the MSA News editor at
pbower@...

_________________________________________________________

Multiple System Atrophy News - August 2005
_________________________________________________________

Table of Contents

1. SUPPORT GROUP NEWS AND INFORMATION
a. *** MSA CONFERENCE *** Sept 9 - 11, Cleveland, OH
b. ANNOUNCING: Revised homepage for the European MSA Study Group
c. NORD Annual Conference 2005 - Sept. 30 to Oct. 2 - Arlington, VA

2. MSA CLINICAL STUDIES
a. North American MSA Study Group seeks patients for study
b. Study seeks patients with Parkinson-like symptoms plus anemia
c. "Parkinson's or Essential Tremor" (POET-1) Trial

3. MSA RESEARCH NEWS
a. Vaccine for Parkinson-like Disorders in Mice
b. ARTICLE: Catch a Rapid Killer: Research for Multiple System
Atrophy

4. ODDS & ENDS
a. Abilities Expo - August 26 - 28 - Detroit, MI
b. Abilities Expo - September 16 - 18 - Chicago,
IL

_________________________________________________________

1. SUPPORT GROUP NEWS AND INFORMATION

a. *** MSA CONFERENCE *** Sept 9 - 11, Cleveland, OH

The next SDS/MSA Support Conference will be held:

Friday, September 9 - Sunday September 11

Marriott Cleveland Airport Hotel
http://marriott.com/property/propertypage/CLEAP

4277 West 150th Street
Cleveland, Ohio 44135
(216) 252-5333 PHONE
(216) 252-9404 FAX


Tentative Schedule of Activities:


Friday Sept 9th

6:00 PM - 9:00 PM Reception

Saturday Sept 10th

8:00 AM - 4:00 PM Presentations, Q&A Sessions, Physician Meetings


Please contact David Summers for more information and to register
the number of people in your party.

David Summers
Email: dsummersdc44@...
Phone: 202-486-4388

-----

b. ANNOUNCING: Revised homepage for the European MSA Study Group

The European MSA Study Group has revised their website.

See:  http://www.emsa-sg.org

The site lists the features of MSA, contains multilingual patient
information abstracts as well as contact addresses of European
MSA experts in 11 European countries plus Israel.

They have also added a button to click for donations.

-----

c. NORD Annual Conference 2005 - Sept. 30 to Oct. 2 - Arlington, VA

The 2005 NORD Annual Conference will be held Sept. 30 to Oct. 2
at the Hilton Crystal City at Ronald Reagan National Airport in
Arlington, VA. An optional Capitol Hill visit is scheduled for
Sept. 29.

The theme will be Access to Medical Care: Navigating Medicare,
Medicaid, & Private Insurance. General sessions will focus on
issues related to medical coverage and access to care. There
will be two tiers of workshops, one for patients and family
members and one for leaders of patient organizations.

For information, see http://www.rarediseases.org/news/events#
or contact Donna Bolton in NORD's Development Office at
(203) 744-0100 or dbolton@.... Hotel reservations
may by made at (800) 695-7551. Mention the NORD Conference to
get a special rate of $129 plus tax per night.


_________________________________________________________

2. MSA CLINICAL STUDIES

a.  North American MSA Study Group seeks patients for study

The North American Multiple System Atrophy Study Group is
seeking patients with multiple system atrophy for a research
study to identify environmental and genetic factors associated
with the disorder.

Subjects will be provided with a physical examination, and be
asked to provide a blood sample for DNA testing.

Interviews will also be done by telephone as part of this study.
This study is sponsored by the National Institutes of Health (NIH).
Subjects can be seen at 11 medical centers in the United States.
For more information please contact Deborah Fontaine at
(858) 622-5800.

-----

b. Study seeks patients with Parkinson-like symptoms plus anemia

To conduct the next phase of their research, Dr. Tracey Rouault
and her coworkers are seeking patients who have Parkinson's-like
symptoms together with anemia.

They're especially interested in hearing from people with:

Parkinson's disease
Multiple Systems Atrophy (formerly known as Olivopontocerebellar
Atrophy)
Or another neurodegenerative disease with Parkinson's-like
neurological deterioration.

With positive test results for:

High levels of protoporphyrin IX
High serum ferritin levels
And microcytic anemia (abnormally small red blood cells)

To contact Dr. Rouault about participating in a study, call
301-496-6368 or send her an e-mail message at rouault@...

For more details see:

http://www.nih.gov/news/pr/may2005/nichd-12.htm

http://i-newswire.com/pr20263.html

-----

c. "Parkinson's or Essential Tremor" (POET-1) Trial

http://www.corporate-ir.net/ireye/ir_site.zhtml?
ticker=BLSI&script=410&layout=7&item_id=743342

About the "Parkinson's or Essential Tremor" (POET-1) Trial

Boston Life Sciences, Inc's pivotal ALTROPANE Phase III trial
is a multi-center, open-label, out-patient, clinical trial
that will include both male and female patients between the
ages of 18 and 80 and is designed to demonstrate the efficacy
of ALTROPANE used with single photon emission computed
tomography (SPECT) imaging in the differentiation of
Parkinsonian Syndrome tremors from non-Parkinsonian or
Essential tremors. Patients from this trial are referred
by an internist, general practitioner or neurology clinic
and, subsequent to SPECT imaging, will also be diagnosed
by a Movement Disorder Specialist. For more information
about the POET trial, e-mail BLSI at trials@....

Several non-discrete conditions are included in Parkinsonian
Syndromes. Parkinson's Disease is the most common form of
Parkinsonian Syndrome. Other less common Parkinsonian
Syndromes include multiple system atrophy (MSA), Progressive
Supranuclear Palsy (PSP) and drug-induced Parkinsonism

For more information contact:

Boston Life Sciences, Inc.
Sharon Correia, 508-497-2360 ext 224
scorreia@...


http://www.bostonlifesciences.com



_________________________________________________________


3. MSA RESEARCH NEWS


a. Vaccine for Parkinson-like Disorders in Mice


Wed Jun 15, 8:49 PM ET

UCSD School of Medicine researchers working with scientists
for Ireland-based Elan Corp. (NYSE: ELN, Research) in San
Francisco have found the first vaccine effective for treatment
of a Parkinson's-family disease in mice, the school announced
Wednesday.

Their findings appear in this month's edition of neuroscience
journal Neuron.

Researchers concentrated on a variety of neurological disorders
called Lewy body disease, which includes Alzheimer's and
Parkinson's disease. By vaccinating mice with alpha-synuclein,
a protein that abnormally accumulates in Parkinson's,
researchers noted a reduced build-up of the protein in those
bred with a simulated disease akin to Parkinson's. Abnormal
alpha-synuclein accumulation is attributed to the degeneration
of nerve cells and intercellular communication that can lead
to Parkinson's and dementia.

"We found that the antibodies produced by the vaccinated mice
recognized and reduced only the abnormal form of alpha-synuclein,
since the protein's normal form is in a cellular compartment
where antibodies can't reach it,"UCSD professor of neurosciences
and pathology Eliezer Masliah stated in a press release.
"Abnormal alpha-synuclein finds its way to the cell membrane,
where antibodies can recognize it."

According to Masliah, who was lead author of the study,
comparable "active immunization" in humans may be harmful,
but "it might be feasible to inject antibodies directly,
as if the patient were creating his or her own."
Masliah and other researchers at UCSD and Elan Pharmaceuticals
have been studying alpha-synuclein for the last four years,
after research linked the protein to Alzheimer's and Parkinson's.
The team is currently working to develop alternative ways to
produce protein antibodies safe for human use.

See also:
http://www.healthcentral.com/newsdetail/408/526317.html


-----

b. ARTICLE: Catch a Rapid Killer: Research for Multiple System
Atrophy

http://www.clevelandclinic.org/health/health-info/docs/3800/3872.asp?
index=12346


Catch a Rapid Killer: Research for Multiple System Atrophy

Multiple system atrophy, or MSA, is a neurological disorder
that shares many of the same symptoms as Parkinson's disease
-- muscle rigidity, tremors, loss of balance and bradykinesia,
the slowing down of body movement. But unlike Parkinson's,
MSA progresses very rapidly. Many MSA patients die within
nine years of diagnosis and, because its symptoms are
similar to Parkinson's, it's hard for doctors to diagnose.
What's more, there are no medications that can treat or
alleviate the symptoms of MSA. Although the disease is
rare -- about 77,000 new cases of MSA appear annually –
it usually strikes people in middle age.

"MSA patients are desperate because their whole body is
breaking down and doctors can't do much for them," says
Dianne Perez, Ph.D., a researcher with the department of
Molecular Cardiology. Dr. Perez's team is investigating
various unique facets of MSA including a 1-receptors (AR),
the protein molecules that control cardiovascular
functions such as blood pressure constancy and cardiac
contractions. The over-expression of these receptors
causes neurodegeneration that is consistent with MSA
and Parkinson's patients.

"It appears that the way AR receptors communicate with
cells in the brain can lead to neurodegeneration if this
regulation is disrupted. The brain cells that control
certain involuntary or autonomic functions of the body
die," explains Dr. Perez. Dr. Perez's research involves
a common drug, terazosin, which is used to treat high
blood pressure and prostate diseases. Terazosin blocks
the AR receptors in the brain that somehow trigger
neurodegeneration.

"We tested terazosin for a few months in models of this
disease and found that not only did physical motor ability
improve, but weight and life span also increased," Dr.
Perez says.

Within the Department of Neurology, clinical trials are
now testing whether these AR blockers can benefit patients
with MSA. What's more, if the research does show benefits
for MSA and Parkinson's patients, doctors will be able
to prescribe terazosin almost immediately because its
safety has already been established by the U.S. Food
and Drug Administration for its other, already approved
indications.

Source: Cleveland Clinic Magazine, Winter 2005

_________________________________________________________



4. ODDS & ENDS

Upcoming Abilities Expos:

http://www.abilitiesexpo.com/IAEBrandManager/v42/index.cvn

The one show for independent and assisted living products
and services. Abilities Expo remains dedicated to helping
to improve the lives of people with disabilities. Only at
  Abilities Expo will you be able to spend hours on the
exhibit floor, testing and comparing products and services
offered by state of the art exhibitors.  Abilities Expo
also offers a full line up of FREE consumer and professional
workshops, offered by leading individuals in the healthcare,
education, and retail fields.


a. Abilities Expo - August 26 - 28 - Detroit,
MI

Abilities Expo/ Metro Detroit

August 26-28,
2005
Novi Expo
Center
Novi,
MI


-----


b. Abilities Expo - September 16 - 18 - Chicago,
IL

Abilities Expo/ Chicago Metro
September 16-18, 2005
Donald E Stephens Convention Center
Rosemont, IL


_________________________________________________________



To view past issues of Multiple System Atrophy News please go to:
http://groups.yahoo.com/group/msa-news
Click on "Messages"
To have the monthly newsletter delivered to your inbox send
an email to msa-news-subscribe@yahoogroups.com

To subscribe to the MSA Online Support Group
Please visit http://groups.yahoo.com/group/shydrager
Register and click on "Join this Group"
Over 900 members from 25 countries share coping tips daily.

MSA support groups are forming in the US and around the world.
To view a list of MSA support groups please see:
http://www.shy-drager.org

Did you know? Much of the research news about MSA comes from
leads from you, our readers. If you know of any research news you'd
like to share please contact the MSA News editor at
pbower@...

_________________________________________________________

Multiple System Atrophy News - November 2005
_________________________________________________________

Table of Contents

1. SUPPORT GROUP NEWS AND INFORMATION
a. *** World Parkinson Congress *** February 22-26, 2006 -
Washington, DC
b. Presentations from the Cleveland MSA Conference
c. Update from Jim Likowski re: MSA video "Sophie's Search for a
Cure"
d. NORD Annual Conference 2005

2. MSA RESEARCH NEWS
a. The North American Multiple System Atrophy Study Group
b. Mice Models To Benefit Patients With Multiple System Atrophy
c. Progression of multiple system atrophy (MSA): A prospective
natural history study by the European MSA Study Group (EMSA SG)
d. Unified MSA Rating Scale (UMSARS)

3. ARTICLES ON MSA SYMPTOMS
a. Nighttime dying linked to sleep apnea from brain cell loss
b. Sleep apnea can be a serious condition
b. Vocal Cord Paralysis

4. ODDS & ENDS
a. Deep Brain Stimulation of a New Target

_________________________________________________________

1. SUPPORT GROUP NEWS AND INFORMATION

a. *** World Parkinson Congress *** February 22-26, 2006 Washington,
DC

The World Parkinson Congress – Fighting Parkinson's Together

More than six million people around the world suffer from Parkinson's
disease (PD). Patients, caregivers, advocates, and researchers are
working toward a cure. And for the first time ever, this global
community is uniting to share information and hope and to fight PD
together.

If you or someone you love has PD, attend the first international
World Parkinson Congress and learn firsthand about the latest
science and treatments and care for Parkinson's. This first-of-its-
kind conference for Parkinson's will be held February 22-26, 2006,
in Washington, DC, and will enable patients and caregivers to

  - Meet leading doctors, scientists, and researchers from around the
world who will talk about new therapies and next steps in PD
research

  - Talk with PD advocates and care experts about issues such as stem
cell research, clinical trials, coping, and how to afford family care

  - Make friends and organize support groups with other patients,
caregivers, and families struggling with PD

  - Take part in more than 50 different workshops, where you will
learn how to
         - Manage PD
         - Help your children learn how to grow up with a parent who
has a chronic disease
         - Be a force for health policy change

  - Learn how to improve your quality of life through
         - Physical therapy
         - Nutrition
         - Positive thinking
         - Art
         - Exercise
         - Others

Community session topics include

    Parkinson's Disease and the Art of Moving

    Family Care: The Role of Optimism

  In Sickness and in Health: Steps to Prevent Parkinson's from
Consuming a Marriage and a Family


To register for the Congress or for more information, go to
www.worldpdcongress.org.


Why People with Parkinson's and their Caregivers Should Attend the
Congress

The World Parkinson Congress (WPC) promises to be a turning point
for the Parkinson's community. For the first time ever, doctors,
researchers, allied health professionals, caregivers, and people
with Parkinson's disease will gather in one place to share
knowledge, exchange resources, and develop collaborative
relationships in order to identify the best treatment
practices and to ultimately find a cure for Parkinson's.

For people with Parkinson's, the WPC is not only a new source of
hope and excitement for the future, but a unique and practical
opportunity to participate hands-on in the global fight against
Parkinson's. The Congress will feature an extensive program of
plenary sessions, symposia, and workshops with presentations and
discussions devoted to established and best treatment options,
quality-of-life and care delivery issues, and the latest
scientific research from around the world.

Learn about helpful therapies, clinical trials, and valuable coping
strategies. Discuss workplace and insurance issues, advocacy, and
the economics of family care. Exchange information with other people
with Parkinson's, physicians, and caregivers who share your
interests.

Stand Up and Join in the Fight Against Parkinson's Disease

You won't want to miss this opportunity to learn more about
Parkinson's, improve your quality of life, and make a personal
contribution in the global effort towards conquering this
devastating disease.

_________________________________________________________

b. Presentations from the Cleveland MSA Conference held September
2005

Two powerpoint slide show presentations are available at the site of
the online shydrager/MSA support group at Yahoo groups.  See:

http://groups.yahoo.com/group/shydrager/files/MSA%20Conference%
20Information/2005%20Cleveland%20MSA%20Conference%20Slideshows/


_________________________________________________________

c. Update from Jim Likowski re: MSA video "Sophie's Search for a
Cure"


From: Jim Likowski & Deb Dohm [mailto:mulesear@...]
Sent: November 6, 2005 6:52 PM
To: Pam Bower
Subject: Hi + Update

Hi Pam --

Hope you are well and things are going fine with you and your
family.

Just a note to thank you for helping me, several months ago now, to
contact my "lost" contributors of comments and pictures to the MSA
video doc.  One of the people, Mike Emma, did contact me, and I feel
quite fortunate for that. I have a line on Darlene Turner now, I
think, but still cannot trace Valerie Fitzgerald or M. Leon Tancer
at this time.  Will keep trying.

Quickly, let me tell you that Sophie is about the same -- amazingly
alert, and laughs often -- thank goodness for that!  Ouch -- what a
hard road it is.

Thirdly, the doc is getting close to done, but completion is still a
few months away.  As fate would have it, after that grand (and
sincere) announcement that the film was expected to be completed in
2005, I got deluged with work in my bread-and-butter career as a
sound editor for movies and unfortunately had to take this work in
order to keep my career from tanking.  I work on a per-movie basis,
and unfortunately for Sophie's Search for a Cure, an unusual number
of movies presented themselves all in a row in 2005.  I am back on
SSFAC now and shooting for completion in early 2006.

Finally, I have placed, below, a copy of a recent letter to the
Director of Communications and Public Liaison at NIH/NINDS.  If you
have any suggestions regarding who else I might contact for PD/PD-
Plus research images, and for research project funding histories, I
would be glad to hear them.

Thanks again.  I will send a review tape, for you to critique, in
the coming months.

Take care and thanks for everything.  Say hello to Nova Scotia for
me!

Jim Likowski
P.O. Box 410
Coloma, CA  95613
530/626-5938

mulesear@...


  _  _ _ _ _ _ _ _ _ _ _ _ _  _ __ _  _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
_ _


Marian Emr

Director, Office of Communications and Public Liaison
NIH/NINDS
Building 31, Room  8A07
31 Center Dr.  MSC 2540
Bethesda, MD 20892


Dear Marian Emr,

I am interested in obtaining research images (stills or video)
pertaining to basic Parkinson Disease Research and research specific
to the Parkinson's-Plus syndromes [especially Multiple System
Atrophy (MSA)].

I am making a video documentary, Sophie's Search for a Cure, about my
sister-in-law's experience with MSA, a fatal neurodegenerative
movement disorder.  I am hoping to find current "stock" research
images to help me with my visual presentation, which will feature an
overview of worldwide research efforts, especially those supported
in the USA by the National Institutes of Health.

I would very much appreciate any information you can offer regarding
where I might obtain such images, whether in the public domain or
not.

Thank you very much.  I have included further information about the
documentary below.

And, I have another request:  Have you a summary of the funding
history, especially in the past 15 years, of Parkinson's Disease
(and related) research projects?  I need to know a concise history
of the number of projects funded by the NIH for Parkinson's Disease
research (and perhaps separately for the PD-Plus disorders); and a
history of the amounts of money allocated to these projects over the
years.

Thank you very much.  Any suggestions would be helpful.


I look forward to hearing from you.


Sincerely,

Jim Likowski
Video Maker
Sophie's Search for a Cure
P.O. Box 410
Coloma, CA  95613
530/626-5938
mulesear@...

Sophie's Search for a Cure, to be completed in early 2006, will be a
60 - 75 minute documentary about Multiple System Atrophy (MSA), a
fatal, untreatable, and incurable "Parkinson-Plus" neuro-
degenerative movement disorder.  The video features my sister-in-
law, Sophia Dohm of Novato, California, who was diagnosed with MSA
10 years ago at age 45.

*The video is being produced not-for-profit, by myself in
cooperation with The Parkinson's Institute, a movement disorder
treatment and research facility in Sunnyvale, California.

*We will distribute the video on VHS and DVD; hope to stream it on
the internet; and hope to find television broadcast opportunities.

*The target audience is two-fold: 1) primarily, people with MSA and
their families and caregivers; and 2) the general public. We hope to
acquire television broadcast(s) in order to help increase public and
medical-community awareness of this relatively uncommon disorder.

_________________________________________________________


d. NORD Annual Conference 2005

At NORD Annual Conference: Focus on Reimbursement

NORD focused on issues related to Medicare, Medicaid, and private
insurance at its 2005 Annual Conference held Sept. 30-Oct.2 in the
Washington, DC, area. The intent was to help patients and families
address problems related to access to care and reimbursement and to
help leaders of patient organizations assist their members with such
problems.

"Healthcare reimbursement is a very important topic, and some of the
nation's top experts came to share their expertise," said Jean
Campbell, NORD Vice President for Development.

The conference, co-sponsored by the Office of Rare Diseases at the
National Institutes of Health, was preceded by an optional Capitol
Hill visit. NORD provided briefings beforehand for those who
participated. Speakers at the conference included experts from
government agencies such as the Centers for Medicare and Medicaid
Services; patient organizations; and industry.

View 2005 Conference Photos
http://www.rarediseases.org/briefs/conf05_images

View 2005 Conference Presentations
http://www.rarediseases.org/briefs/conf05_presentations


_________________________________________________________

2. MSA RESEARCH NEWS


a. The North American Multiple System Atrophy Study Group.

Note:  Patients are still being enrolled in this study.  Contact a
study center near you for more information.

J Neural Transm. 2005 Dec;112(12):1687-94.

Gilman S, May SJ, Shults CW, Tanner CM, Kukull W, Lee VM, Masliah E,
Low P, Sandroni P, Trojanowski JQ, Ozelius L, Foroud T; and The
North American Multiple System Atrophy Study Group.

Department of Neurology, University of Michigan, Ann Arbor, MI, USA.

The North American Multiple System Atrophy Study Group involves
investigators in 12 US medical centers funded by a grant from the
National Institutes of Health. The objectives are to examine the
environmental and genetic risk factors for MSA; elucidate pathogenic
mechanisms underlying the disorder; and refine evaluations used for
assessment. During its first year, the group enrolled 87 patients,
implemented four cores, and initiated four scientific projects. Most
patients among the 87 had parkinsonian features, which frequently
began asymmetrically and remained asymmetrical; one-third responded
to levodopa and many developed levodopa complications; almost two-
thirds of the patients had cerebellar dysfunction, of these 90% had
ataxia; urinary incontinence occurred commonly, and sleep disorders
affected most. The investigators studied the effects of oxidative
and nitrative stress upon the formation of alpha-synuclein
inclusions; generated transgenic models of alpha-synuclein
accumulation that recapitulate several behavioral and
neuropathological features of MSA; and compared the severity of the
autonomic features of MSA, Parkinson's disease and dementia with Lewy
bodies.

PMID: 16284910 [PubMed - in process]


North American MSA Study Group Contacts:

CALIFORNIA – University of California (San Diego)
Lead Investigator – Cliff Shults, M.D.
Deborah Fontaine, R.N. – 858-622-5800

CALIFORNIA – Parkinson's Institute, Sunnyvale (San Francisco)
Lead Investigator – Caroline Tanner, M.D., Ph.D.
Kathleen Comyns - 408-542-5620

MARYLAND – University of Maryland (Baltimore)
Lead Investigator – Stephen Reich, M.D.
Kate Pabst - 410-328-7816 or Nancy Zappala 410-328-7812

MASSACHUSETTS – Boston University
Lead Investigator – Peter Novak, M.D., Ph.D.
Meghan Gray - 617-638-7747

MICHIGAN – University of Michigan (Ann Arbor)
Lead Investigator – Sid Gilman, M.D., F.R.C.P.
Mary Heumann – 734-764-8445.

MINNESOTA – Mayo Clinic (Rochester)
Lead Investigator – Phillip Low, M.D.
Tonette Gehrking – 507-284-0336

NEW YORK - University of Rochester
Lead Investigator – Fred Marshall, M.D.
Debra Berry, N.P. – 585-341-7514

OHIO – University Hospitals of Cleveland
Lead Investigator – Thomas Chelimsky, M.D.
Anne Fisher, C.N.P. – 216-844-4770

PENNSYLVANIA – University of Pennsylvania (Philadelphia)
Lead Investigator – Matt Stern, M.D.
Mary Lloyd, R.N. – 215-829-6500

TEXAS – Baylor College of Medicine (Houston)
Lead Investigator – Joseph Jankovic, M.D.
Christine Hunter, R.N. - 713-798-3951

VIRGINIA - University of Virginia (Charlottesville)
Lead Investigator – Fred Wooten, M.D.
Margaret Keller - 434-243-5457

_________________________________________________________


b. Mice Models To Benefit Patients With Multiple System Atrophy

http://www.sciencedaily.com/releases/2005/11/051117100722.htm
http://ucsdnews.ucsd.edu/newsrel/health/11_15_varki.asp

Source:   University of California - San Diego

Date:   2005-11-17


Researchers at the University of California, San Diego (UCSD) School
of Medicine have developed a series of transgenic mouse models of
multiple system atrophy, a progressive, fatal neurological disorder.
The work is reported in the November 16 issue of the Journal of
Neuroscience by Eliezer Masliah, M.D., Professor of Neuroscience and
Pathology at UCSD and Cliff Shults, M.D. Professor of Neuroscience
at UCSD and Neurologist at the VA San Diego Healthcare System.

The mouse models are important, not only in providing new insights
into the processes that cause degeneration of the nervous system in
patients with multiple system atrophy, but also as models in which
to study treatments for the disease.

"The models will help researchers develop therapies for this
degenerative disease by enabling us to study potential treatments
that might interfere with the aggregation of alpha-synuclein and
slow the progression of multiple system atrophy," said Shults.
Masliah added, "Development of these models may also prove relevant
to our understanding other neurological disorders, enabling us to
test new drugs for Parkinson's and other diseases."

UCSD School of Medicine is one of the world's leading centers for
research in alpha-synuclein, the major component of inclusions or
clusters found in the brains of patients with multiple system
atrophy, Parkinson's disease and other neurological disorders.
Patients with multiple system atrophy suffer from progressive,
worsening symptoms of Parkinson's disease, impaired coordination,
and dysfunction in control of blood pressure and bladder function.
The disease is characterized by aggregates of alpha-synuclein in
oligodendrocytes, a type of cell in the brain that provides
insulation for the nerve processes in the brain. The presence of
alpha-synuclein was first identified in the human brain by
researchers at UCSD.

Mice were genetically engineered in Masliah's laboratory to express
high amounts of alpha-synuclein in oligodendrocytes. The mice
exhibited symptoms, including problems with movement and injury to
nerve cells, found in patients with multiple system atrophy. The
models' brains demonstrated abnormal clusters of alpha-synuclein,
similar to those seen in the brains of patients with the disease.

The work was carried out as part of a multi-institutional effort at
12 of the leading centers in research in neurological disorders in
the United States, coordinated from UCSD, to understand the causes
of multiple system atrophy and to eventually develop treatments to
slow the progression of the disease. Masliah and Shults have already
begun to use the mice models to screen drugs that might benefit
patients with multiple system atrophy, another example of leading
translational research being conducted at UCSD.


###
Shults led the work at UCSD, which was funded by the National
Institutes of Health, the Michael J. Fox Foundation, and the William
M. Spencer Jr. Research Fund.

_________________________________________________________


c. Progression of multiple system atrophy (MSA): A prospective
natural history study by the European MSA Study Group (EMSA SG).

Mov Disord. 2005 Sep 13

Geser F, Wenning GK, Seppi K, Stampfer-Kountchev M, Scherfler C,
Sawires M, Frick C, Ndayisaba JP, Ulmer H, Pellecchia MT, Barone P,
Kim HT, Hooker J, Quinn NP, Cardozo A, Tolosa E, Abele M,
Klockgether T, Ostergaard K, Dupont E, Schimke N, Eggert KM, Oertel
W, Djaldetti R, Poewe W.

Clinical Department of Neurology, Innsbruck Medical University,
Austria.

The disease-specific Unified Multiple System Atrophy Rating Scale
(UMSARS) has been developed recently and validated for assessing
disease severity in multiple system atrophy (MSA). Here, we aimed at
(1) assessing rates of disease progression in MSA and (2) validating
UMSARS for sensitivity to change over time. Impairment was assessed
at two time points 12 months apart using UMSARS Part I (historical
review), UMSARS Part II (motor examination), as well as measures of
global disease severity, including UMSARS Part IV, Hoehn and Yahr
(HY) Parkinson's disease staging, Schwab England Activities of Daily
Living (SE ADL), and a three-point global Severity Scale (SS3).

Fifty patients (male:female ratio, 1:0.9; possible MSA, 16%;
probable MSA, 84%; MSA-parkinsonian, 58%; MSA-cerebellar, 42%) were
assessed twice with an interval of 12.3 months. UMSARS II scores
progressed by 57.3% (P < 0.0001) and UMSARS I scores by 35.6% (P <
0.0001) in relation to the respective baseline scores with no
differences between motor subtypes, diagnostic categories and
gender. Significant inverse correlations between (1) UMSARS I
or UMSARS II progression and (2) baseline disability measures (i.e.,
the respective UMSARS or SS3 scores) and disease duration were found.
Furthermore, the increases in HY staging, SE ADL and SS3 correlated
significantly with UMSARS I, UMSARS II, and UMSARS IV progression.

This report is the first prospective study showing rapid annual
UMSARS rates of decline in MSA. Our data contribute to the ongoing
validation process of UMSARS, and they facilitate the planning and
implementation of future neuroprotective intervention trials. (c)
2005 Movement Disorder Society.

PMID: 16161136 [PubMed - as supplied by publisher]

_________________________________________________________

d. UNIFIED MSA RATING SCALE (UMSARS)

Note:  A pdf article on the Unified MSA Rating Scale is available at
the site of the online shydrager/MSA support group at Yahoo groups.
See:

http://groups.yahoo.com/group/shydrager/files/MSA%20Research%
20Articles/WenningGK%20MvmtDo2004%20UMSARS.pdf


Below is a summary of the scale.

Part I: Historical Review

Rate the average functional situation for the past 2 weeks (unless
specified) according to the patient and caregiver interview.
Indicate the
score that best fits with the patient status. Rate the function
independently from the nature of the signs.

1. Speech

0 Not affected.
1 Mildly affected. No difficulties being understood.
2 Moderately affected. Sometimes (less than half of the time) asked
to repeat statements.
3 Severely affected. Frequently (more than half of the time) asked
to repeat statements.
4 Unintelligible most of the time.

2. Swallowing

0 Normal.
1 Mild impairment. Choking less than once a week.
2 Moderate impairment. Occasional food aspiration with choking more
than once a week.
3 Marked impairment. Frequent food aspiration.
4 Nasogastric tube or gastrostomy feeding.

3. Handwriting

0 Normal
1 Mildly impaired, all words are legible.
2 Moderately impaired, up to half of the words are not legible.
3 Markedly impaired, the majority of words are not legible.
4 Unable to write.

4. Cutting food and handling utensils

0 Normal.
1 Somewhat slow and/or clumsy, but no help needed.
2 Can cut most foods, although clumsy and slow; some help needed.
3 Food must be cut by someone, but can still feed slowly.
4 Needs to be fed.

5. Dressing

0 Normal.
1 Somewhat slow and/or clumsy, but no help needed.
2 Occasional assistance with buttoning, getting arms in sleeves.
3 Considerable help required, but can do some things alone.
4 Completely helpless.

6. Hygiene

0 Normal.
1 Somewhat slow and/or clumsy, but no help needed.
2 Needs help to shower or bathe; or very slow in hygienic care.
3 Requires assistance for washing, brushing teeth, combing hair,
using the toilet.
4 Completely helpless

7. Walking

0 Normal.
1 Mildly impaired. No assistance needed. No walking aid required
(except for unrelated disorders).
2 Moderately impaired. Assistance and/or walking aid needed
occasionally.
3 Severely impaired. Assistance and/or walking aid needed frequently.
4 Cannot walk at all even with assistance.

8. Falling (rate the past month)

0 None.
1 Rare falling (less than once a month).
2 Occasional falling (less than once a week).
3 Falls more than once a week.
4 Falls at least once a day (if the patient cannot walk at all, rate
4).

9. Orthostatic symptoms

0 No orthostatic symptoms.*
1 Orthostatic symptoms are infrequent and do not restrict activities
of daily living.
2 Frequent orthostatic symptoms developing at least once a week. Some
limitation in activities of daily living.
3 Orthostatic symptoms develop on most occasions. Able to stand   1
min on most  occasions. Limitation in most of activities of daily
living.
4 Symptoms consistently develop on orthostasis. Able to stand   1
min on most occasions.

Syncope/presyncope is common if patient attempts to stand.
*Syncope, dizziness, visual disturbances or neck pain, relieved on
lying flat.

10. Urinary function*

0 Normal.
1 Urgency and/or frequency, no drug treatment required.
2 Urgency and/or frequency, drug treatment required.
3 Urge incontinence and/or incomplete bladder emptying needing
intermittent catheterization.
4 Incontinence needing indwelling catheter.
*Urinary symptoms should not be due to other causes.

11. Sexual function

0 No problems.
1 Minor impairment compared to healthy days.
2 Moderate impairment compared to healthy days.
3 Severe impairment compared to healthy days.
4 No sexual activity possible.

12. Bowel function

0 No change in pattern of bowel function from previous pattern.
1 Occasional constipation but no medication needed.
2 Frequent constipation requiring use of laxatives.
3 Chronic constipation requiring use of laxatives and enemas.
4 Cannot have a spontaneous bowel movement.

Total score Part I:


Part II: Motor Examination Scale
Always rate the worst affected limb.

1. Facial expression

0 Normal.
1 Minimal hypomimia, could be normal ("Poker face").
2 Slight but definitely abnormal diminution of facial expression.
3 Moderate hypomimia; lips parted some of the time.
4 Masked or fixed facies with severe or complete loss of facial
expression, lips parted 0.25 inch or more.

2. Speech
The patient is asked to repeat several times a standard sentence.

0 Normal.
1 Mildly slow, slurred, and/or dysphonic. No need to repeat
statements.
2 Moderately slow, slurred, and/or dysphonic. Sometimes asked to
repeat statements.
3 Severely slow, slurred, and/or dysphonic. Frequently asked to
repeat statements.
4 Unintelligible.

3. Ocular motor dysfunction
Eye movements are examined by asking the subject to follow slow
horizontal finger movements of the examiner, to look laterally at
the finger at different positions, and to perform saccades between
two fingers, each held at an eccentric posit ion of approximately
30°. The examiner assesses the following abnormal signs:
  (1) broken-up smooth pursuit,
  (2) gaze-evoked nystagmus at an eye position of more than 45
degrees,
  (3) gaze-evoked nystagmus at an eye position of less than 45
degrees,
  (4) saccadic hypermetria.
Sign 3 suggests that there are at least two abnormal ocular motor
signs, because Sign 2 is also present.

0 None.
1 One abnormal ocular motor sign.
2 Two abnormal ocular motor signs.
3 Three abnormal ocular motor signs.
4 Four abnormal ocular motor signs.

4. Tremor at rest (rate the most affected limb)

0 Absent.
1 Slight and infrequently present.
2 Mild in amplitude and persistent. Or moderate in amplitude, but
only intermittently present.
3 Moderate in amplitude and present most of the time,
4 Marked in amplitude and present most of the time,

5. Action tremor
Assess postural tremor of outstretched arms (A) and action tremor on
finger pointing (B).
Rate maximal tremor severity in
Task A and/or B (whichever is worse), and rate the most affected
limb.

0 Absent.
1 Slight tremor of small amplitude (A). No interference with finger
pointing
(B).
2 Moderate amplitude (A). Some interference with finger pointing (B).
3 Marked amplitude (A). Marked interference with finger pointing (B).
4 Severe amplitude (A). Finger pointing impossible (B).

6. Increased tone (rate the most affected limb) Judged on passive
movement of major joints with patient relaxed in sitting position;
ignore cogwheeling.

0 Absent.
1 Slight or detectable only when activated by mirror or other
movements.
2 Mild to moderate.
3 Marked, but full range of motion easily achieved.
4 Severe, range of motion achieved with difficulty.

7. Rapid alternating movements of hands
Pro-supination movements of hands, vertically or horizontally, with
as large an amplitude as possible, each hand separately, rate the
worst affected limb. Note that impaired performance on this task can
be caused by bradykinesia and/or cereb ellar incoordination. Rate
functional performance regardless of underlying motor disorder.

0 Normal.
1 Mildly impaired.
2 Moderately impaired.
3 Severely impaired.
4 Can barely perform the task.

8. Finger taps
Patient taps thumb with index finger in rapid succession with widest
amplitude possible, each hand at least 15 to 20 seconds.
Rate the worst affected limb. Note that impaired performance on this
task can be caused by bradykinesia and/or cere bellar
incoordination. Rate functional performance regardless of underlying
motor disorder.

0 Normal.
1 Mildly impaired.
2 Moderately impaired.
3 Severely impaired.
4 Can barely perform the task.

9. Leg agility
Patient is sitting and taps heel on ground in rapid succession,
picking up entire leg.
Amplitude should be approximately 10 cm, rate the worst affected
leg. Note that impaired performance on this task can be caused by
bradykinesia and/or cer ebellar incoordination. Rate functional
performance, regardless of underlying motor disorder.

0 Normal.
1 Mildly impaired.
2 Moderately impaired.
3 Severely impaired.
4 Can barely perform the task.

10. Heel-knee-shin test
The patient is requested to raise one leg and place the heel on the
knee, and then slide the heel down the anterior tibial surface of
the resting leg toward the ankle. On reaching the ankle joint, the
leg is again raised in the air to a heig ht of approximately 40 cm
and the action is repeated. At least three movements of each limb
must be performed for proper assessment.
Rate the worst affected limb.

0 Normal.
1 Mildly dysmetric and ataxic.
2 Moderately dysmetric and ataxic.
3 Severely dysmetric and ataxic.
4 Can barely perform the task.

11. Arising from chair
Patient attempts to arise from a straight-back wood or metal chair
with arms folded across chest.

0 Normal.
1 Clumsy, or may need more than one attempt.
2 Pushes self up from arms of seat.
3 Tends to fall back and may have to try more than once but can get
up without help.
4 Unable to arise without help.

12. Posture

0 Normal.
1 Not quite erect, slightly stooped posture; could be normal for
older person.
2 Moderately stooped posture, definitely abnormal; can be slightly
leaning to one side.
3 Severely stooped posture with kyphosis; can be moderately leaning
to one side.
4 Marked flexion with extreme abnormality of posture.

13. Body sway
Rate spontaneous body sway and response to sudden, strong posterior
displacement produced by pull on shoulder while patient erect with
eyes open and feet slightly apart. Patient has to be warned.

0 Normal.
1 Slight body sway and/or retropulsion with unaided recovery.
2 Moderate body sway and/or deficient postural response; might fall
if not caught by examiner.
3 Severe body sway. Very unstable. Tends to lose balance
spontaneously.
4 Unable to stand without assistance.

14. Gait

0 Normal.
1 Mildly impaired.
2 Moderately impaired. Walks with difficulty, but requires little or
no assistance.
3 Severely impaired. Requires assistance.
4 Cannot walk at all, even with assistance.

Total score Part II:

Part III: Autonomic Examination
Supine blood pressure and heart rate are measured after 2 minutes of
rest and again after 2 minutes of standing. Orthostatic symptoms may
include lightheadedness, dizziness, blurred vision, weakness,
fatigue, cognitive impairment, nausea, palpitations, tremulousness,
headache, neck and "coat-hanger" ache.

Systolic blood pressure
Supine
Standing (2 minutes)
Unable to record

Diastolic blood pressure
Supine
Standing (2 minutes)
Unable to record

Heart rate
Supine
Standing (2 minutes)
Unable to record

Orthostatic symptoms

Yes
No

Part IV: Global Disability Scale

1. Completely independent. Able to do all chores with minimal
difficulty or impairment.
Essentially normal. Unaware of any difficulty.
2. Not completely independent. Needs help with some chores.
3. More dependent. Help with half of chores. Spends a large part of
the day with chores.
4. Very dependent. Now and then does a few chores alone or begins
alone.
Much help needed.
5. Totally dependent and helpless. Bedridden.

_________________________________________________________


3. ARTICLES ON MSA SYMPTOMS

a. Nighttime dying linked to sleep apnea from brain cell loss

http://www.medicalnewstoday.com/medicalnews.php?newsid=28788

http://www.eurekalert.org/pub_releases/2005-08/uoc--dis080205.php

UCLA study scrutinizes loss of cells in brain's breathing command-
post

Aim to grow old and die peacefully in your sleep? Be careful what
you wish for. A new UCLA study suggests that some people die in
their sleep because they stop breathing due to a cumulative loss of
cells in the brain's breathing command-post. The online edition of
Nature Neuroscience reports the findings on Aug. 7.

"We wanted to reveal the mechanism behind central sleep apnea, which
most commonly affects people after age 65," explained Jack Feldman,
principal investigator and Distinguished Professor of Neurobiology
at the David Geffen School of Medicine at UCLA. "Unlike obstructive
sleep apnea – in which a person stops breathing when their airway
collapses -- central sleep apnea is triggered by something going
awry in the brain's breathing center."

Feldman's team had earlier pinpointed a brainstem region they dubbed
the preBötzinger complex (preBötC) as the command post for
generating breathing in mammals, and identified a small group of
preBötC neurons responsible for issuing the commands. This time, the
researchers studied the role of the preBötC neurons in generating
breathing during sleep, and what would happen if these brain cells
were destroyed.

The scientists injected adult rats with a cell-specific compound to
target and kill more than half of the specialized preBötC neurons.
Then the team monitored the rats' breathing patterns. After four or
five days, the results proved visibly dramatic.

"We were surprised to see that breathing completely stopped when the
rat entered REM sleep, forcing the rat to wake up in order to start
breathing again," said Leanne McKay, postdoctoral fellow in
neurobioloy. "Over time, the breathing lapses increased in severity,
spreading into non-REM sleep and eventually occurring when the rats
were awake, as well."

Because mammals' brains are organized in a similar fashion, the
scientists believe that the rat findings are relevant to the human
brain. Rats possess 600 specialized preBötC cells, and Feldman
theorizes that humans have a few thousand, which are slowly lost
over a lifetime.

"Our research suggests that the preBötzinger complex contains a
fixed number of neurons that we lose as we age," said
Feldman. "Essentially, we sped up these cells' aging process in the
rats over several days instead of a lifetime."

Long before the rats had difficulty breathing when awake, they
developed a breathing problem during sleep. The UCLA team suspects
the same thing happens as people grow older.

"We speculate that our brains can compensate for up to a 60 percent
loss of preBötC cells, but the cumulative deficit of these brain
cells eventually disrupts our breathing during sleep. There's no
biological reason for the body to maintain these cells beyond the
average lifespan, and so they do not replenish as we age," said
Feldman. "As we lose them, we grow more prone to central sleep
apnea."

When elderly but otherwise healthy people die during sleep,
physicians commonly record the cause of death as heart failure. The
UCLA team believes that the loss of preBötC neurons sparks central
sleep apnea, causing elderly people whose lungs and heart are
already weaker due to age, to stop breathing and succumb to death in
their sleep. Their true cause of death remains unknown.

The scientists suspect central sleep apnea also strikes people
suffering the late stages of neurodegenerative disorders, such as
Parkinson's disease, Lou Gehrig's disease and multiple system
atrophy, all serious conditions that lead to movement problems.

"People with these diseases breathe normally when they are awake,
but many of them have breathing difficulties during sleep," said
Wiktor Janczewski, assistant researcher in neurobiology. "When
central sleep apnea strikes, they are already very ill and their
sleep-disordered breathing may go unnoticed.

"As the patients grow sicker, their nighttime threshold for
wakefulness rises," he added. "Eventually, their bodies reach a
point when they are unable to rouse themselves from sleep when they
stop breathing, and they die from lack of oxygen."

The UCLA team will repeat their research with elderly rats in order
to learn why central sleep apnea first strikes during REM sleep. The
group also plans to analyze the brains of people who die from
neurodegenerative diseases to determine whether these patients show
damage in their preBötzinger complexes.

###
The National Heart, Lung and Blood Institute funded the research.


_________________________________________________________

b. Sleep apnea can be a serious condition

http://www.shirleyoracle.com/Stories/0,1413,111~5845~3053542,00.html


Wednesday, September 14, 2005 - Sleep apnea causes people to stop
breathing multiple times while sleeping. The word "apnea" comes from
the Greek and means "without breath." It is very common and over 12
million people in the United States are affected. People with sleep
apnea may stop breathing over 100 times a night without even being
aware of it -- they may simply think of themselves as insomniacs,
light sleepers or, paradoxically, they may not think they have any
problems with sleep at all. The most frequent complaint is daytime
fatigue, although the long-term medical consequences may be severe
and even result in death.

There are three types of sleep apnea. Obstructive sleep apnea is
when the upper airway (tongue and palate) blocks off air flow during
sleep; central sleep apnea is when respiratory centers at the base
of the brain (medulla oblongata) fail to give the signal to draw the
next breath; mixed sleep apnea is a combination of upper-airway-
muscle and brain-signaling problems.

Obstructive sleep apnea

Individuals most at risk for this type of blockage include people
who may have facial features such as a receding chin or small jaw;
obesity, which leads to extra fat tissue in the airway; deviated
septum; enlarged tonsils and adenoids; nasal congestion; sedatives
before sleep such as sleeping pills or alcohol, which cause extra
muscle relaxation; endocrine (glandular) conditions, which lead to
decreased resting muscle tone; as well as muscle and nerve diseases
which cause underlying muscle weakness or decreased tone.
The chances of sleep apnea occurring due to one of these conditions
increases with age, as aging alone results in more fat deposition in
the airway and decreased muscle tone.

Central sleep apnea

Individuals most at risk for central apneas are people who have
damage to the brainstem respiratory centers from various causes
including genetic diseases of the mitochondria (the energy source of
the muscle cell); stroke in the brainstem; brain swelling from tumor
or bleed or traumatic injury; infections of the nervous system, such
as polio and other forms of encephalitis; and certain neurological
diseases.

Treatment

Once the cause has been determined with the aid of a sleep study, a
variety of treatment options, both non-surgical and surgical, are
available for the patient with obstructive apnea.

Surgical treatments vary from minimally invasive to very invasive.
If there is a specific cause for the obstruction such as a deviated
septum or enlarged tonsils, then surgery to correct the underlying
abnormality may correct the apnea. When no specific cause for
obstruction has been found, more extensive surgeries have been tried.

Uvulopalatopharyngoplasty, surgery to remove soft tissue of the
airway, is more invasive but not very effective. Although 50 percent
of patients have some improvement, only 30 percent have complete
control of the apnea. A more effective, but much more involved
surgical approach involves soft tissue surgery combined with
skeletal reconstruction of the bones that support the pharynx.
Typically, this is a-two part surgery that results in cosmetic
changes to the face. This comprehensive surgical procedure reports 90
percent success. Laser-assisted uvuloplasty, a laser-guided surgery
to remove the uvulus (the soft tissue that hangs down the back of
the throat) is a good treatment for snoring but a poor treatment for
apnea.

Somnoplasty, radiowaves to shrink the tissue in the air passages, as
well as to decrease the volume of the tongue while preserving the
taste buds, is minimally invasive and an attractive option for those
patients who wish to avoid the surgeon's knife. Although usually
performed as part one of the larger two-part surgery, a small number
of patients are cured with somnoplasty alone.

The most extreme surgical treatment for obstructive apnea is
tracheostomy, a hole in the windpipe. This procedure is 100 percent
successful for obstructive apnea, but has multiple medical
complications and an excessive social and emotional cost. Although
prior to 1980 it was the only treatment available, thankfully that
is not so today.

Central and mixed sleep apneas both result in a person "forgetting"
to breathe when asleep. For this reason, the only reliable treatment
is a non-invasive ventilator, a machine with a timer which
spontaneously delivers a breath of air whenever a period of
breathlessness occurs. Like CPAP, this machine is used with a
removable mask.

Long-term outcome

Sleep apnea is a progressive disease and will get worse with age.
With adherence to a treatment program, the prognosis for sleep apnea
can be very good. People who are followed in sleep centers with
knowledgeable staff who provide ongoing education about sleep apnea
do much better than those who are simply provided a treatment. Many
people benefit from participation in sleep apnea support groups or
online support groups (see http://www.apneasupport.org/

For more information about sleep apnea, contact your doctor or local
hospital.

Dr. Deborah Gelinas is the new neurologist at Nashoba Valley Medical
Center. She comes from a 20-year practice in San Francisco where she
was the clinical director of an internationally recognized ALS/MDA
center and a Memory Center. She has published books for newly
diagnosed patients with neurological disease as well as a host of
articles and book chapters. Dr. Gelinas moved back to Massachusetts
to be near her mother and five sisters.

1999-2004 MediaNews Group, Inc. and Nashoba Publications
_________________________________________________________


c. Vocal Cord Paralysis

http://www.newswise.com/articles/view/514742/?sc=rsmn

Material Effective for Outpatient Treatment of Vocal Cord, Larynx
Disorders

A new study evaluates the efficacy of Radiesse for the treatment of
glottal insufficiency responding to the diagnoses of unilateral
vocal fold paralysis or glottal insufficiency caused by vocal fold
paresis and vocal fold atrophy.

Newswise — Laryngeal disorders that involve insufficiencies of the
vocal apparatus of the larynx (or glottal insufficiency) have
brought about numerous treatment strategies, including voice
therapy; laryngeal framework surgery, and vocal fold augmentation.
The latter involves performing vocal fold injection to treat the
glottal insufficiency associated with a variety of laryngeal
disorders, most notably unilateral vocal fold (or true vocal cord)
paralysis, vocal fold paresis (partial paralysis), vocal fold
atrophy, vocal fold scar, and a groove in a larynx muscle (sulcus
vocalis). Vocal fold injection for treatment of glottal
insufficiency has been done for more than one hundred years,
starting with a paraffin vocal fold injection.

The ideal vocal fold injection material would have the following
properties/features: biologically inert, "off the shelf" (no
preparation for use) availability, no risk of infectious disease
transmission, and able to be used with a fine-gauge injection needle
(22 ga. or smaller). Past vocal fold injection materials such as
silicone and Teflon have failed due to the poor response of the
injection material to the body's immune system. Current biologic
vocal fold augmentation materials vary in duration and are be
temporary-only in nature. These include fat injection, collagen-based
products and hyluronic acid based products.

Calcium Hydroxylapatite (CaHA) is a major component of the mineral
constituent for both bone and teeth. The material has been used as a
biomedical implant in dental, orthopedic, and head & neck bony
reconstruction because of its proven ability to be a stable implant
material with minimal inflammatory response and no evidence of
toxicity. Recently, CaHA has been suggested as a vocal fold
augmentation material for the treatment of glottal insufficiency.

Calcium Hydroxylapatite has been produced in small particles ranging
in diameter from 25 to 45 microns. These CaHA spherules are placed
in a gel carrier composed of water, glycerine and
carbomethylcellulose 3% (sodium carbomethylcellulose). This material
is called Radiesse and is FDA approved for vocal fold augmentation
(Bioform Medical, Inc., San Mateo, CA). An animal model of Radiesse
vocal fold injection with 12-month follow-up showed excellent
immunologic response of the CaHA in the larynx. Early clinical
studies have been favorable, but have been with small samples and
brief durations.

A prospective study conducted at multiple clinical sites was
undertaken to evaluate the efficacy of Radiesse for the treatment of
glottal insufficiency responding to the diagnoses of unilateral
vocal fold paralysis or glottal insufficiency caused by vocal fold
paresis and vocal fold atrophy. The study, "Vocal Fold Augmentation
With Calcium Hydroxylapatite (CaHA): Six Month Report" is a multi-
institutional effort. The authors are Clark A. Rosen MD, from the
University of Pittsburgh Voice Center and colleagues Jackie Gartner-
Schmidt PhD, Roy Casiano MD(Univ of Miami), Timothy D. Anderson MD
(Lahey Clinic, Boston), Felicia Johnson MD (Univ of Arkansas),
Lee Reussner MD (Lawrence, Kansas), Marc Remacle MD (Belgium),
Richard Stasney MD (Houston, Texas), Robert T. Sataloff MD
(Philadelphia, PA), Jean Abitbol MD (Paris, France), Gary Shaw MD
(Kansas City, MO), Sanford Archer MD (Univ of Kentucky), and Andrew
McWhorter MD (New Orleans, LA). Their findings are to be presented
at the 109th Annual Meeting & OTO EXPO of the American Academy of
Otolaryngology—Head and Neck Surgery Foundation, being held
September 25-28, 2005, at the Los Angeles Convention Center, Los
Angeles, CA.

Methodology: This study is a six-month report of a multi-
institutional effort running independent, open-label prospective
studies on the efficacy of Radiesse vocal fold augmentation. At each
assessment time point (pre-op, one month, three months, six months),
the patients were given several patient-based outcome measure
instruments to fill out independently without assistance (in
variable order). In addition, a speech language pathologist
assessed them and the CAPE-V auditory perceptual evaluation
methodology was applied to their voice quality. Study subjects had
to be age 18-85, diagnosed with dysphonia associated with unilateral
vocal fold paralysis (minimum six-month duration) or mobile vocal
folds with glottal insufficiency due to either vocal fold atrophy or
vocal fold paresis (minimum of three months duration). Patients were
assessed within one month prior to CaHA vocal fold injection and
then at the following intervals following vocal fold augmentation:
one, three and six months.

Results: The average number of study subject per site was six
patients. One hundred patients were enrolled in the study and 93
received vocal fold injections at one of the study sites. Sixty-
eight patients were available for a six month time point analysis
following vocal fold augmentation. Thirty-six of the patients had
unilateral vocal fold paralysis and 30 had glottal insufficiency
with mobile vocal folds (vocal fold atrophy or vocal fold paresis).
Of the 30 with glottal insufficiency, seven were diagnosed with
vocal fold atrophy, 18 with vocal fold paresis and 5 were diagnosed
with both paresis and atrophy. For 15 of 36 cases of unilateral
vocal fold paralysis, the cause was unknown.

Other key findings included:

Injection Information: Injection Information was available for 59 of
the 68 patients in the study cohort. Thirty-two of the patients had
a bilateral vocal fold injection. Twenty-nine patients underwent
injection via direct laryngoscopy, 11 had a per-oral, office-based
approach for vocal fold injection and eight were treated with
percutaneous vocal fold injection. The mean time to perform vocal
fold injection in both the office and the operating room was 11
minutes. Surgeon satisfaction with the vocal fold injection at the
end of the procedure was deemed as "great, no problems" for 40 of
the 52 injections.

Complications: No major complications such as airway distress were
reported in the cohort. Review of need of the further treament in
the entire six month follow-up time period reveals that nine
patients had a repeat CaHA vocal fold injection. Analyzing the
patients that required further voice surgery at the six month time
period, there were three patients that required a repeat CaHA vocal
fold injection, three that had lipo-injection and two with
thyroplasty. This group of eight patients represents a 12 percent
failure rate of the initial CaHA vocal fold injection.

Patient and Clinician Satisfaction: At the six month time point, 59
percent of the patients reported they were greatly or significantly
improved and 85 percent reported they were greatly improved,
significantly improved or somewhat better. The clinicians rated the
patient's vocal outcome at the six month time point as greatly or
significantly improved in 54 percent of the patients and 83 percent
of the patients were rated by the physician as either having a
greatly improved, significantly improved or somewhat better
vocal function.

Conclusions: This study presents the largest prospective utilization
of CaHA vocal fold injection for patients with glottal insufficiency
due to unilateral paralysis, vocal fold paresis, or vocal fold
atrophy.

_________________________________________________________


4. ODDS & ENDS

a. Deep Brain Stimulation of a New Target - PPN - is Safe and
Alleviates Akinesia in Parkinson's Disease Sufferers

http://www.prnewswire.co.uk/cgi/news/release?id=158181


LONDON, November 14 /PRNewswire/ -- The pedunculopontine nucleus
(PPN) - an integral component of the midbrain locomotor region that
plays an important role in the initiation and maintenance of walking
behaviour - can be identified and targeted safely without major
surgical risks, reports a recent NeuroReport article published by
Lippincott Williams & Wilkins;
Implantation of human pedunculopontine nucleus: a safe and clinically
relevant target in Parkinson's disease.

Additionally, low frequency (20-25Hz) stimulation of this nucleus in
humans improves postural stability and gait disturbance
including "on-medication" freezing - symptoms experienced by
sufferers of Parkinson's disease in the advanced stages, reports a
second NeuroReport paper published in the same issue; Bilateral deep
brain stimulation of the pedunculopontine nucleus for Parkinson's
disease.

These studies from the Dipartimento Neuroscienze, Universitŕ di Roma
Tor Vergata/IRCCS Fondazione S. Lucia, Rome, Italy and the Institute
of Neurosciences, Frenchay Hospital, Bristol, UK respectively,
represent a landmark in the treatment of Parkinson's disease.

"This research provides the first hope of alleviating the symptoms
of those Parkinsonian patients for whom currently there is no
effective treatment, even by brain stimulation - a source of great
frustration for clinicians, carers and utterly disabling for
patients," say Ned Jenkinson and Tipu Aziz, University Laboratory of
Physiology, Oxford University and Department of Neurosurgery,
Radcliffe Infirmary, Oxford, UK, where the basic research
behind the current findings was carried out. Jenkinson and Aziz
continue,
"In theory, even patients with multiple system atrophy or progressive
supranuclear palsy could benefit - in fact any patient with
intractable locomotive and postural akinesia."

These initial results in this area of research are encouraging. The
follow-up work of Dr. Mazzone's research team in Rome goes on to
suggest that the combined stimulation of the traditionally implanted
subthalamic nucleus plus PPN is more valuable than PPN stimulation
alone. As the debate continues, further research across larger
populations of patients will help to establish to what extent PPN is
an alternative or an additive target.

About the NeuroReport Journal

NeuroReport www.neuroreport.com, is among the fastest-publishing
fully refereed journals, covering all aspects of neuroscience
research including all facets of sensory and motor systems,
cellular, molecular and developmental neuroscience and behavioural,
integrative and clinical neuroscience.

About Lippincott Williams & Wilkins

Lippincott Williams & Wilkins (LWW) www.LWW.com is a leading
international publisher of professional health information for
physicians, nurses, specialised clinicians and students. LWW
provides essential information for healthcare professionals in print
and electronic formats, including textbooks, journals, CD-ROM, and
via Intranets and the Internet.

LWW is a unit of Wolters Kluwer Health, a group of leading
information companies offering specialized publications and software
in medicine, nursing, pharmacy, science, and related areas.
Operating companies include Lippincott Williams & Wilkins, Adis
International, Ovid Technologies, and Facts and Comparisons.

Distributed by PR Newswire on behalf of Lippincott Williams &
Wilkins Ltd


______________________________________________________


To view past issues of Multiple System Atrophy News please go to:
http://groups.yahoo.com/group/msa-news
Click on "Messages"
To have the monthly newsletter delivered to your inbox send
an email to msa-news-subscribe@yahoogroups.com

To subscribe to the MSA Online Support Group
Please visit http://groups.yahoo.com/group/shydrager
Register and click on "Join this Group"
Over 900 members from 25 countries share coping tips daily.

MSA support groups are forming in the US and around the world.
To view a list of MSA support groups please see:
http://www.shy-drager.org

Did you know? Much of the research news about MSA comes from
leads from you, our readers. If you know of any research news you'd
like to share please contact the MSA News editor at
pbower@...

_________________________________________________________

Multiple System Atrophy News - April 2006
_________________________________________________________

Table of Contents

1. NATIONAL AWARENESS CAMPAIGN
a. WE MOVE Wants Your Stories

2. MSA CLINICAL TRIALS
a. USA: The Autonomic Nervous System and Obesity
b. USA: Treatment of Supine Hypertension in Autonomic Failure
c. USA: Treatment of Orthostatic Hypotension in Autonomic Failure
d. ITALY: Effect of Riluzole as a Symptomatic Approach in Patients

3. MSA RESEARCH CONFERENCE
a. 3rd International Congress on Multiple System Atrophy

4. NEURODEGENERATIVE DISEASE RESEARCH
a. VIDEO: Combining Stem Cell and Gene Therapy for Neurological
Disorders
b. New Drug Target Identified for Fighting Parkinson's Disease
c. Boston Life Sciences Ends ALTROPANE(R) POET-1 Phase III Trial
Early to
Evaluate Full Data Set
d. Neurologists submit guidelines to identify movement disorder
e. Amarin Announces Preclinical Results of Miraxion in
Neurodegenerative Diseases

5. ODDS AND ENDS
a. MSA Fundraiser

_________________________________________________________

1. NATIONAL AWARENESS CAMPAIGN

a. WE MOVE Wants Your Stories

In April 2005, WE MOVE launched Life in Motion, a nationwide
awareness campaign designed to remove the roadblock of namelessness
and the isolation felt by many who think that they are alone in
their struggles with movement disorders. By telling real people's
stories, WE MOVE illustrated the obstacles that people with a
movement disorder face in their daily lives. Over the past year, the
Life in Motion campaign has resulted in more than 200 million media
impressions.

Supported by a coalition of more than 50 not-for-profit advocacy
organizations and professional societies, the Life in Motion
campaign continues into 2006. We are looking for people to share
with us the difficulties, triumphs and obstacles that they continue
to face as a result of their movement disorder. Your story may reach
someone who is living with the same disorder that you have-someone
who does not know that his or her symptoms have a name. If you would
like to help and be part of this valuable campaign, please contact
Lori at lneste@... for more information.

In addition to wanting to hear your story, we are also looking for
people living with a movement disorder or their parents who would be
interested in becoming a spokesperson and sharing their personal
story with newspaper, magazine, television, or radio audiences. Your
voice may reach someone who continues to live without hope.

Thank you.
lneste@...


_________________________________________________________

2. MSA CLINICAL TRIALS

These trials are still accepting patients.

a. USA: The Autonomic Nervous System and Obesity
http://www.clinicaltrials.gov/ct/show/NCT00179023


b. USA: Treatment of Supine Hypertension in Autonomic Failure
http://www.clinicaltrials.gov/ct/show/NCT00223717


c. USA: Treatment of Orthostatic Hypotension in Autonomic Failure
http://www.clinicaltrials.gov/ct/show/NCT00223691


d. ITALY: Effect of Riluzole as a Symptomatic Approach in Patients
http://www.clinicaltrials.gov/ct/show/NCT00202397

_________________________________________________________

3. MSA RESEARCH CONFERENCE

a. 3rd International Congress on Multiple System Atrophy
    Innsbruck, Austria, 12-13 January, 2007

See the full program at:
http://www.emsa-sg.org/meetings/3rd_MSA_Congress_programme_2007.pdf

Presentation

Multiple System Atrophy (MSA) is an uncommon, progressive
neurological disorder, caused by cell loss in specific areas of the
brain and spinal cord leading to a variety of symptoms affecting
especially the functions of the motor system and the autonomic
nervous system. Due to the variety of different ways MSA can
manifest, it is often difficult to differentiate it from other
neurodegenerative disorders like Parkinson's disease, progressive
supranuclear palsy or corticobasal degeneration. So far, the
relentless disease progression cannot be halted or stopped by any
medication, however, with increasing understanding of cell death
mechanisms in MSA novel strategies will hopefully become available
which can be evaluated by two multicenter research groups, one in
Europe (EMSA-SG) and the other in North-America (NAMSA-SG): This
congress on MSA follows previous meetings held in Rome in 2004 and
in London in 1997. Numerous discoveries have been made in MSA
research since then and we are therefore glad to invite you for an
update. This meeting in MSA will consist of a series of invited
lectures on the neuropathological and molecular features, clinical
picture, investigations and novel therapies of this devastating
condition. The objective of the conference is to bring together
basic and clinical neuroscientists to generate ideas for future
research in this long-neglected field.

Objectives

At the conclusion of this meeting the participants will be able
to:
• understand the clinical presentation, natural history and
complications that occur in MSA
• identify the autonomic and sleep disorders in patients affected by
MSA
• discuss about the autonomic testing and sphincter EMG as ways to
diagnose this condition
• describe the benefits of new diagnostic tools, such as MRI, SPECT
and PET, in improving the diagnostic accuracy of MSA and monitoring
disease evolution.

Target Audience

All clinicians and scientists who are interested in Multiple System
Atrophy will benefit from this symposium.

Registration

The registration site will be opened 1st April 2006 on
http://www.emsa-sg.org


_________________________________________________________

4. NEURODEGENERATIVE DISEASE RESEARCH


a. VIDEO: Combining Stem Cell and Gene Therapy for Neurological
Disorders

Speaker: Clive Svendsen, Ph.D., University of Wisconsin-Madison
Presented on: Monday, January 30, 2006
Total Running Time: 01:06:16

To view the video go to:
http://videocast.nih.gov/ram/nss013006.ram


b. New Drug Target Identified for Fighting Parkinson's Disease
By: Johns Hopkins Medicine
March 13, 2006
http://www.emaxhealth.com/39/4884.html


c. Boston Life Sciences Ends ALTROPANE(R) POET-1 Phase III Trial
Early to
Evaluate Full Data Set
March 20, 2006
http://biz.yahoo.com/prnews/060320/nem033.html


d. Neurologists submit guidelines to identify movement disorder
By Cheryl Clark
UNION-TRIBUNE STAFF WRITER
April 3, 2006
http://www.signonsandiego.com/news/health/20060403-9999-
1n3parkin.html


e. Amarin Announces Preclinical Results of Miraxion in
Neurodegenerative Diseases
April 7, 2006
http://sev.prnewswire.com/health-care-hospitals/20060407/3135716en-
1.html


_________________________________________________________

5. ODDS AND ENDS

a. MSA Fundraiser

Hello,

I'm taking part in the Flora London Marathon 2006 on April 23, 2006
to raise money for Sarah Matheson Trust for Multiple System Atrophy
and would really welcome your support.

Please take a moment to sponsor me. It's really easy - you can
donate online by credit or debit card at the following address:

http://www.justgiving.com/if-susy-can-do-it-so-can-i

All donations are secure and sent electronically to Sarah Matheson
Trust for Multiple System Atrophy.  If you are a UK taxpayer,
Justgiving will automatically reclaim 28% Gift Aid on your behalf,
so your donation is worth even more.  Please join me in supporting
Sarah Matheson Trust for Multiple System Atrophy and a fabulous
cause.

Thanks and best wishes,
Mark


_________________________________________________________



To view past issues of Multiple System Atrophy News please go to:
http://groups.yahoo.com/group/msa-news
Click on "Messages"
To have the newsletter delivered to your inbox send
an email to msa-news-subscribe@yahoogroups.com

To subscribe to the MSA Online Support Group
Please visit http://groups.yahoo.com/group/shydrager
Register and click on "Join this Group"
Over 900 members from 25 countries share coping tips daily.

MSA support groups are forming in the US and around the world.
To view a list of MSA support groups please see:
http://groups.yahoo.com/group/shydrager

Did you know? Much of the research news about MSA comes from
leads from you, our readers. If you know of any research news you'd
like to share please contact the MSA News editor at
pbower@...

This documentary film about Sophia Dohm's personal experience with
Multiple System Atrophy has been several years in the making and is
now complete and being unveiled to the public at a premiere in
Novato, California on October 8th.

Thanks so much Sophia for sharing your story and congratulations to
filmmakers Deb Dohm and Jim Likowski for this great achievement!

See:

http://groups.yahoo.com/group/shydrager/files/Sophia.bmp

http://groups.yahoo.com/group/shydrager


You are invited to the

Premiere Showing

of

SOPHIE'S SEARCH FOR A CURE

~ a 64 minute film ~

Featuring Guest of Honor

Sophia Dohm


Sunday October 8, 2006 3-5 p.m.

Novato Oaks Inn

215 Alameda del Prado \ The Redwood Room

Novato, CA 94949 415/883-4400

Hors d'oeuvres and beverages served

This film was sponsored in part by

THE PARKINSON'S INSTITUTE

R.S.V.P. by October 1st

530/626-5938 or mulesear@...

Deb Dohm and Jim Likowski

SPECIAL NOTICE: The SDS/MSA Support Group are now trying to work out
plans for the conference to be held in either August or Sept 2007.
Three cities have been suggested to host the conference. If you were
to attend which would be your first choice?

~Boston, MA
~Rochester, MN
~Nashville, TN

Please Vote here:
http://groups.yahoo.com/group/shydrager/surveys?id=2437665

2008 SDS/MSA Support Group Meeting

October 10 - 11, 2008

Nashville, Tennessee

Full details are available online at http://www.shy-drager.org


The 2008 SDS/MSA Support Group's Patient, Caregiver, Family Member,
Physician
meeting will be held on Friday and Saturday, October 10th and 11th
at the
Marriott Nashville Airport Hotel. 600 Marriott Drive,  Nashville, TN

Dr. David Robertson of Vanderbilt University Medical Center will be
the host
Physician at this meeting.

The other physicians who will be presenting information are Dr.
Italo
Biaggioni of Vanderbilt University Medical Center and Dr. Tom
Chelimsky of
Case Western Reserve Medical Center in Cleveland Ohio.

Following our standard practice, The SDS/MSA will not dictate to the
doctors
their subject matter.

Each doctor will discuss an area of MSA that they feel is of
interest and
benefit for our patients.

The planned subjects of their presentations will be published as
soon as they
are available.

The schedule for the meeting is as follows:


Friday evening:

6:30  to 10:00 P.M.  -  Social Hour for patients caregivers and
family members.




Saturday:

7:00 to 8:30 A.M.  Breakfast that is provided for everyone.

8:30  A.M.  Meeting will begin with presentations by attending
doctors.


   (Each doctor will be allowed 20 to 30 minutes for his presentation)

10:30 A.M. (Approximately)  Break for refreshments, snacks, and
patient
comfort)

11:00 A.M.  Begin open forum with doctors.  Any MSA topic is open!
(Ask The
Doctors!)

12:30 P.M.   Lunch

1:30 P.M.  Meeting resumes --- Open forum continues for
approximately 1 and
1/2 hours.


Please note:

All times are approximate and depend on the flow of the meeting and
the
comfort of the patients!



Important!

If you plan to come to the Nashville meeting, please e-mail me at
don.summers@... with the number of people who will be
attending and
their names.   Since the support Group will be providing all food
and beverage
service, this information is essential to make sure that we have
enough of
everything!


HOTEL  INFORMATION

To make your reservations, call the toll-free reservations number
                 1-888-236-2427
Tell the reservation clerk that you are with the SDS/MSA Support
Group and
they will make your reservations.  The normal check in time is 4:00
P.M.

If you plan to arrive earlier than that, ask the reservations clerk
for an
early check in.

I have been assured that they will help with your request!

The nightly rate for rooms at the hotel are $129.00 per night.  No
rooms have
been set aside for those wishing to stay an extra night!!!  If you
plan on
staying over on Saturday night you must make arrangements with the
hotel when
you register!!  Rooms for Saturday night may be more expensive than
the group
rates on Friday night.

The hotel provides a Courtesy Shuttle from and to the Airport.  As I
understand, it is a free service.

Please, check with the hotel registration desk regarding check-in
and check-
out times.


I am looking forward to meeting each of you in Nashville!  Come
ready to make
new friends and get more information about the illness!

         Y'All Come!

         Don Summers

         President, SDS/MSA Support Group

         don.summers@...

http://shy-drager.org/support-group-meetings

SDS/MSA Support Group Meetings
•• New Meeting Announcement & Agenda! ••

The 2009 SDS/MSA Support Group Patient/Caregiver Meeting details:

Date: September 25 - 26, 2009

City: Cleveland, Ohio

Event Venue: Cleveland Airport Sheraton

Room Rate: $79.00 per night

There is no registration fee for the meeting.

Click here to reserve your spot and book your hotel room
http://www.starwoodmeeting.com/Book/sdsmsa

Presenters:
Dr. Tom Chelimsky (Meeting Host): Case Western Reserve medical center,
Neurological Center.

Dr. Janice Gilden: Rosalind Franklin University of Medicine and Science Chicago
Medical School

Dr. David Robertson: Vanderbilt University Medical center in Nashville,
Tennessee.

Meeting Agenda:

Friday Evening:
  6:00 P.M. - Social Hour for Patients, Caregivers and Family Members.
Snacks will be served.

Saturday:

7:30 A.M. to 8:30 A.M. - Group Breakfast
9:00 A.M. - Meeting will begin
10:30 A.M. - Break and snacks
12:00 Noon - Lunch
1:00 P.M. - Meeting continues
3:00 P.M. - Break
4:30 P.M. - Meeting will close

We hope you can join us for this valuable event.

From :  Atypical Parkinsonian Disorders Support Group
<atypical.parkinsonian.disorder@...>

Subject:  Join Dan Brooks on a FREE Webinar on September 3, 2009


PRIORITY INVITATION

Invitation to join Dan Brooks on a FREE Webinar* on September 3, 2009

This CurePSP+ Webinar is scheduled for Thursday, September 3, 2009 at 8:00 PM
Eastern Time.


Reserve your Webinar seat right now by clicking on the below URL or copying and
pasting the below URL into your Web Browser:
https://www2.gotomeeting.com/register/512693963

As you might be aware, Dan Brooks is an active member of our Support Groups
attending meetings in Irvine and West Los Angeles.

Many of you have seen Dan Brooks' posts on the CurePSP+ Forum and on various
Yahoo! Group Forums.

And read his book, "I Will Go On: Living with a Movement Disorder".

Still other people view Dan's daily blog at "We Will Go On" at
http://wewillgoon.blogspot.com/

Lastly, many of you have listen to Dan singing at the Support Group Meetings, on
his blog or have purchased his recordings.

This Webinar will be a unique experience because it is being presented by a
54-year old movement disorder patient in the fourth year of his illness.

In his Webinar, Dan will explain where he was in life when a Parkinson-Plus
syndrome unexpectedly entered his life. He will describe the development of
symptoms and how the neurologists dealt with the diagnosis process from the
earliest medical intervention to the eventual diagnosis and treatment. He will
detail how he moved forward in his life, while adjusting and attempting to
understand the disabilities this syndrome brought and how he found the reason
and strength to go on.

You will identify with Dan as he briefly tells you his story and provides each
participant with useful information about Parkinson-Plus syndromes. He will give
you encouragement and practical ideas for keeping your life moving purposefully
forward, in spite of the great challenges brought on by such a devastating
condition. This Webinar is designed to reach both the atypical Parkinsonian
Disorder patient and their caregivers, who are both dramatically affected by
these conditions. Dan may share a bit of music with the audience, as well.

Reserve your Webinar seat right now by clicking on the below URL or copying and
pasting the below URL into your Web Browser:
https://www2.gotomeeting.com/register/512693963



TITLE OF PRESENTATION
    "Making the Most of Life with a Parkinson-Plus Syndrome"
PRESENTER
    Dan Brooks
DATE
    Thursday, September 3, 2009
TIME
       8:00 PM Eastern Time
       7:00 PM Central Time
       6:00 PM Mountain Time
       5:00 PM Pacific Time
       1:00 AM United Kingdom/London Time (following day)
       2:00 AM South Africa/Johannesburg Time (following day)
     10:00 AM Australia/Sydney Time (following day)
DURATION
    10 minute introduction of CurePSP+ by Larry Schenker & Janet Edmunson
    40 minute presentation by Dan Brooks
    10 minute refreshment/toilet break
    60 minutes of Questions and Answers by Dan Brooks and Kate DeSantis

Patients, caregivers, family members and medical and health care professionals
from across the United States and Canada and from most countries of the world
can listen and/or view Dan's inspiring live Webinar.

You may listen and view his story (via a slide show presentation) from the
convenience of your home or office, using your computer and your attached
speakers. This is FREE! No special computer software is necessary.

Or you may listen only to his story using your land or mobile telephone. Line
charges are your responsibility.

Dan has for been an active member of the Atypical Parkinsonian Disorders Support
Groups of Southern California since their inception.

Daniel R. Brooks, Ed.D., (Dan) was born in 1955 in Long Beach, California. Dan
holds Bachelor of Arts (1980) and Master of Arts ((1986) degrees from California
State University, Long Beach. In addition, he completed an Educational Doctorate
Degree (2003) at La Sierra University, Riverside, California. Dan's career
included thirty years working in public schools. He began with four years as an
instructional aide, taught in fourth through sixth grade classrooms for eight
years, served as an assistant principal for two years, held positions as a
principal in elementary and middle schools for thirteen years, served as
director and assistant superintendent of personnel for three years, prior to
developing his abnormal involuntary movement disorder. The neuro-degenerative
disease forced Dan to retire in the Spring of 2007. After retirement, Dan began
to write his blog on the Internet to explain and discuss Parkinson's Disease and
Parkinson's Plus syndromes, while sharing his personal experience. This blog led
to his writing of his book.

Dan married his devoted wife, Karrie in 1981, and together they have three grown
children and a daughter-in-law.

On his blog, Dan has written "I place my faith in God and have made this the
focus of my life. Family is my priority".

Reserve your Webinar seat right now by clicking on the below URL or copying and
pasting the below URL into your Web Browser:
https://www2.gotomeeting.com/register/512693963

How to address questions to the presenter, Dan Brooks

Once you have registered for this Webinar you can, up to one (1) day prior to
the start of the Webinar, e-mail the presenter a question at
Webinar.Question@...
If you are listening and viewing the Webinar via your computer, you can submit
your questions online via the Webinar's Instant Messaging (IM) service.
If you are listening to the Webinar via your telephone, you will not be able to
ask your questions.
If you have any questions, please contact the Webinar Organizer, Outreach &
Education Committee, CurePSP+ at CurePSP.Webinar.Coordinator@... or Kate
DeSantis, the CurePSP+ Director of Outreach & Education at 800-457-4777.

*A Webinar is a FREE computer based web conference with up to 1,000 people from
around the world viewing the conference. It is typically one-way, from the
presenter to the audience. The presenter speaks to the audience, using a
computer attached microphone. He/she points out information being presented via
the mouse pointer on the viewers home or office computer screen. It is also
possible to just listen to the presentation via a land or mobile telephone. The
cost of the telephone call is paid for by the listener.

Larry Schenker
Atypical Parkinsonian Disorders Support Groups
Southern California – Mexican border north to Santa Barbara & Kern Counties
      Organizer & Co-Leader
================================================================
CurePSP+ (Foundation for PSP + CBD + Related Disorders)
      Outreach and Education Committee Member
      Webinar Organizer
      Online Support Group Organizer
================================================================
Los Angeles, California, United States of America
Tel: (310) 441-1488
E-mail: atypical.parkinsonian.disorder@...

This is my MSA story which I am posting all over Facebook right now in the various MSA discussion boards and causes that have popped up there.    I am recommending that everyone on Facebook become a fan of the page called "Miracles for MSA" so that our voices can be joined in one central place.  Please spread the word and share your own story with anyone who will listen.

Regards,
Pam

----------

My mother-in-law was diagnosed with Olivopontocerebellar atrophy (OPCA) and lived about 6 years. She was only 55 when she died in 1998. I absolutely adored her and was devastated along with all of her family when she was stricken with this disorder. I've devoted much time and effort in sharing MSA information and raising awareness in the past 15 years. 

OPCA falls under the newer umbrella term "Multiple System Atrophy" (MSA), along with previously separate disorders called Shy-Drager Syndrome and Striatonigral Degeneration.  The common thread that led research doctors to consider these all the same disorder is based on pathological findings in the brain called glial cytoplasmic inclusions.  Further research determined that the protein called alpha-synuclein in involved.

I'm the moderator of the Yahoo group for MSA support called "shydrager". http://groups.yahoo.com/group/shydrager

We have 1500 members and have been around since 1995.  I'd like to see all the various MSA discussion boards, groups, causes and charities keep in close contact.  Our voices will be stronger if we band together.  

I'm recommending that everyone touched by MSA become a fan of "Miracles for MSA".  If you are on Facebook go to
http://www.facebook.com/pages/Miracles-for-MSA#/pages/Miracles-for-MSA/138909258573?ref=ts

I'd like to see awareness and miracles for MSA spread around the world.

Regardless of which particular MSA charity you support or which MSA discussion board you participate in regularly, we are all in this together. Let's get these miracles going!

Regards.
Pam
pbower@...
moderator "shydrager" the Yahoo Group for MSA support
http://groups.yahoo.com/group/shydrager

FOR IMMEDIATE RELEASE                                 Contact:          Pam Bower

                                                                                                            info@...

"Miracles For MSA" Proclaims March

as Multiple System Atrophy Awareness Month

(FACEBOOK, WORLDWIDE – March 3, 2010) – There is no Michael J. Fox. Nor a Muhammad Ali or a Lou Gehrig. But more than 1,000 fans—known on Facebook as Miracles For MSA—have proclaimed March as Multiple System Atrophy Awareness Month.

Passionate patients, caregivers, researchers, friends, and family members want everyone to know about this rare, incurable brain disease that combines many symptoms of Parkinson's Disease and ALS, with cerebellar ataxia and autonomic failure. Multiple System Atrophy, or MSA, affects multiple systems of the body. It's a disease that's hard to diagnose. And it wreaks havoc on not only the patient but all of those who love the patient as well.

"Miracles For MSA," a Facebook page connecting those affected by MSA worldwide, stemmed from a similarly named charity event last March in Nashville, Tenn. It brought together Pittsburgh Steeler's Cornerback Fernando Bryant, a promising genomic research initiative, a Michigan life science startup, and Vanderbilt University Medical Center, to raise money for life-saving MSA research. The idea for MSA Awareness was sparked by Bryant's former basketball coach, Bob Summers, on the Miracles for MSA Facebook page. Summers' wife suffers from MSA.

"MSA is so rare that many cases are wrongly diagnosed as Parkinson's or some other similar disease," said Pam Bower, an active member of the Facebook page, who's mother-in-law was afflicted with MSA. "My hope with the MSA Awareness month is that the worldwide MSA community will feel more united and will be inspired to do more to raise the profile of this disease and to raise funds."

Multiple System Atrophy encompasses disorders previously known as Shy-Drager Syndrome, striatonigral degeneration and sporadic olivopontocerebellar atrophy.

Currently, The Shy-Drager Syndrome (SDS/MSA) Support Group, a growing legal entity devoted to fostering an ongoing relationship between patients, caregivers, their family members, and medical professionals, is one of the most sought-after resources for those dealing with the disease. By declaring March Multiple System Atrophy Awareness month, organizers hope to take awareness and fundraising one step further, bringing this and other groups to the forefront of awareness collectively.

According to the National Institutes of Health, "Multiple system atrophy (MSA) is a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failure such as fainting spells and bladder control problems, combined with motor control symptoms such as tremor, rigidity, and loss of muscle coordination. MSA affects both men and women primarily in their 50s. The disease tends to advance rapidly over the course of nine to 10 years, with progressive loss of motor skills, eventual confinement to bed, and death. There is no remission from the disease. There is currently no cure."

The group is creating a website that will be open to all MSA organizations worldwide, a resource for all MSA connections. The website, www.msaawareness.org, will be live mid- to late-March.

For more details about Multiple System Atrophy please see the National Institutes of Health MSA factsheet at http://www.ninds.nih.gov/disorders/msa/detail_msa.htm.

To join the "Miracles for MSA" Facebook page, visit http://www.facebook.com/pages/Miracles-for-MSA/138909258573.

"Miracles for MSA" is a worldwide group of individuals dedicated to spreading awareness about this disease and inspiring hope for a treatment through fundraising, education and research efforts.  The group encourages all worldwide organizations with an interest in MSA to join in its efforts to spread the word about MSA and to inspire the miracle of research that will one day lead to a cure.

###

NEWS:

October 3rd is World MSA Day!

http://www.world-msa-day.org

--

Annual SDS/MSA Conference to be held in San Diego Oct 1st and 2nd, 2010!
http://www.shy-drager.org

--

"Tim's Shoe" to attend MSA Conference!
http://www.facebook.com/pages/Where-is-Tims-Shoe/348809933762

--

MARCH is Multiple System Atrophy Awareness Month!

http://www.prlog.org/10561341-miracles-for-msa-proclaims-march-as-multiple-syste\
m-atrophy-awareness-month.html

--

Want to raise awareness for MSA? Become a FAN of
"MIRACLES FOR MSA" on FACEBOOK and invite all your friends!

http://tinyurl.com/yjlahhh

MSA RESEARCH NEWS:

-----------------

April 26, 2010

Some Recent Progress in Therapeutics of MSA

by Phillip Low, MD

The diagnosis and characterization of MSA has significantly improved over the past decade. There is also a better understanding of the mechanisms underlying this disease (pathogenesis). Progress has been facilitated by a combined effort of the National Institute of Health through NINDS which has funded a program project specifically in MSA (P01 NS4 4233; Principal Investigator – Phillip Low MD) and a Autonomic Disorders Rare Disease Consortium (U54 NS0 65736; Principal Investigator – David Robertson MD). Progress is also facilitated by the activities of patient support groups.

For a disease for which there is only treatment of symptoms, we should have 3 treatment trials for MSA this year. Underway is a study entitled "A Multi-centered, Randomized, Double-blind, Placebo-controlled Clinical Trial to Assess the Efficacy, Safety, and Tolerability of Rasagiline Mesylate 1 mg in Patients with Multiple System Atrophy of the Parkinsonian Subtype (MSA-P)", by Teva Pharmaceutical Industries, Ltd.

A study that is about to commence entitled: "A Phase IIA, multi center, double-blind, randomized, placebo-controlled, parallel-group 12 month study to assess the efficacy, safety, tolerability and pharmcokinetics of AZD3241 in patients with Multiple System Atrophy" also aims to affect the natural history of the disease.

A third study "Double blind placebo controlled study of Rifampicin in Multiple System Atrophy," Principal Investigator, Phillip Low; Co-Prinicipal Investigators: Sid Gilman, David Robertson. The goal of these trials is to test if these drugs will prevent progression of the disease.

These studies are not likely to help advanced MSA. Indeed the studies will only be open to patients with very early MSA. The importance of these studies is that they will likely lead to additional and better treatments in the future. Studies with intravenous gamma globulin and stem cell therapy are in the exploratory stages. I stress that it is important to maintain a realistic perspective. These studies should not be interpreted as reason for optimism for a cure, but is certainly ground for hope for the future.

RESEARCH UPDATE:

---------------

October 2, 2010

by Pam Bower

Moderator of shydrager, the online MSA support group at Yahoo Groups

http://groups.yahoo.com/group/shydrager

Email: pbower@...

From notes taken from doctor's presentations at the Annual MSA Conference held in San Diego.

For news of future MSA conferences see http://www.shy-drager.org

1. Rasagiline(Azilect) - a transgenic mouse model of MSA showed that rasagiline reduced nigral striatal and cerebellar cell loss in a mouse model of MSA and can be considered a promising disease-modifying candidate for testing in humans with MSA. A clinical trial is underway to test this. Volunteers are needed. There are 51 clinical study sites in 12 countries. 140 patients are needed. Participation in an imaging substudy will be offered to enrolled subjects at selected sites.

To be included in the Rasagiline for MSA study you must be:

- greater than 30 years old with a diagnosis of possible or probable MSA of the Parkinsonian subtype (MSA-P)

- less than 3 years from documented MSA diagnosis

- anticipated survival of greater than 3 years in the opinion of the investigator

- willing and able to give informed consent

There will be investigator evaluations at the screening visit and study - weeks 0, 12, 24, 36 and 48

Phone visit and assessment between study visits at weeks 6, 18, 30 and 42.

See list of study sites at:

http://www.clinicaltrials.gov/ct2/show/NCT00977665?term=rasagiline+msa&rank

2. There is a clinical trial starting soon for Rifampicin!

Go here to register in the patient database to be notified of when the trial will start:

http://rarediseasesnetwork.epi.usf.edu/ARDCRC/studies/index.htm

"6102 - An Oligo-centered, Randomized, Double-blind, Placebo-controlled Clinical Trial to Assess the Efficacy, Safety, and Tolerability of Rifampicin in Patients with Multiple System Atrophy"

MSA AWARENESS NEWS:

------------------

1. October 3rd is World MSA Day!

MSA Groups around that world have declared an international day of awareness for Multiple System Atrophy to be held annually on October 3rd.

Read about it at:

http://www.world-msa-day.org

View the World MSA Day promotional video (English version) on YouTube at:

http://www.youtube.com/watch?v=G6iYpkxYEZo

2. "Tim's Shoe" Raising Awareness for MSA!

Where is Tim's Shoe???? - not on Tim's foot!

It started out as a practical joke to steal Tim McNutt's shoe and send it around the country and then post pictures of it on Facebook posed in front of various city landmarks. But when Tim's friends heard about how this website made MSA patient Pearl Turner laugh they turned this joke into a positive and fun way to raise awareness about MSA that is taking the country by storm.

Here is a news article written about "Tim's Shoe".

http://www.cortezjournal.com/main.asp?SectionID=1&SubSectionID=1&ArticleID=10786&TM=71374.11

View a video about "Tim's Shoe" on YouTube:

http://www.youtube.com/watch?v=Mx7Fw7P9seI

Follow "Where is Tim's Shoe????" on Facebook:

http://www.facebook.com/pages/Current-Location-Unknown/Where-is-Tims-Shoe/348809933762

You can request to host Tim's Shoe by emailing Tim's Shoe's caretaker, Darlene Ogden darlene_ogden@...

3. "Miracles for MSA" has 2000 members!

This Facebook group is becoming a popular meeting place for sharing ideas and activities about raising MSA Awareness.  If you have ideas on raising awareness about MSA and/or raising funds for any MSA charity please join us there.

http://www.facebook.com/pages/Miracles-for-MSA/138909258573

4. Photos from the MSA Conference held in San Diego, California on October 1st and 2nd. 

http://www.facebook.com/album.php?aid=253515&id=707756399&l=9f5db08991

A special guest appearance was made by "Tim's Shoe" and he also celebrated World MSA Day with flags from the countries of the conference attendees.

5. Online Support Group for MSA still going strong after 10 years

The online support group for MSA called "shydrager" is still going strong after 10 years on Yahoo! Groups.  The group now has over 1600 members from all over the world who share coping tips, information and resources daily.  We are grateful for the vision of Dr. David Robertson and his colleagues at Vanderbilt University for starting the group back in 1995 and hosting it on their university server until 2000. 

Because MSA / Shy-Drager Syndrome is so rare it is so important to reach out to talk to others around the world and know you are not alone in your struggle.  Many of the group's members are former caregivers who have remained with the group and continue to pass on their vast knowledge on the subject of MSA.  Collectively this group truly has the most expertise on Multiple System Atrophy you could find anywhere in the world.  The richness of the friendships formed and our diverse backgrounds makes this group unique.  Please feel welcome to join us and share your journey with MSA.  

To join the group go to:

http://groups.yahoo.com/group/shydrager

Any problems with joining please contact the moderators at

Shydrager-owner@yahoogroups.com

6. New MSA Pamphlet from Parkinson Society Canada

See: http://tinyurl.com/PDCANADA-MSA

This new pamphlet is an excellent addition to the other MSA resources already available to us.  Please share these informative pamphlets with doctors and family and friends to make them aware of MSA.

Other good resources:

http://www.acnr.co.uk/pdfs/volume3issue6/v3i6reviewart1.pdf

http://emedicine.medscape.com/article/1154583-overview

http://www.rarediseases.org/programs/mult_sys_atrophy_brochure.html

http://www.msaweb.co.uk/msaguide.htm

Plesase sign the MSA Awareness Petition
http://www.gopetition.com/petition/42198.html

Please send to your local newspapers, tv, radio, internet contacts etc.  Share
your own MSA story to put a face to this disease.

Thanks!
Pam

----


FOR IMMEDIATE RELEASE
Contact:  Kim Jackson
kim@...
802.345.9730

Joyce Connor
502.893.3654
jdc123@...


March is Multiple System Atrophy Awareness Month

ANYWHERE, U.S. (Feb. 23, 2011)—There are no Hollywood celebrities linked to MSA
(Multiple System Atrophy)—just more than 2,300 fans known on Facebook as
"Miracles for MSA," whose goal is to draw attention to this rare, currently
incurable disease. With that in mind, this group has designated March as
Multiple System Atrophy Awareness Month, in order to increase public awareness
and encourage research activities worldwide.
Multiple System Atrophy is a neurodegenerative disorder that affects many of the
autonomic body systems that people take for granted. The symptoms can occur in
any combination, from loss of balance and coordination, fainting and dizziness
due to severely low blood pressure, bladder and bowel issues, speech and
swallowing difficulties, sleep disturbances, breathing problems, and rigidity
and tremors similar to Parkinson's disease or ALS.

"We all worked hard in our jobs and now we have to work hard to keep ahead of
this disease that destroys," said MSA patient Gene Rechsteiner, of Bakersfield,
California. "My hopes are to bring awareness and educate people on how bad MSA
is and finding funds for research to find a cure. The medical society needs to
realize that for each MSA patient, there are at least a dozen doctors in
different fields that will be treating that patient: Primary, neurology,
urology, speech, PT, OT, pulmonology, fitness trainer, caregivers, just to name
a few. MSA sucks. You lose your independence along with your health. There are
only a couple of hours in the day that I am able to function safely. The rest of
the day I have to nap, watch my blood pressure. MSA took my career. We cannot
stay safely in our home. And now it is eating into our retirement. My wife no
longer works in order to care for me 24/7. But we cannot give up hope."

Previously known by such names as Shy-Drager Syndrome, sporadic
olivopontocerebellar atrophy and striatonigral degeneration, MSA is not
considered to be hereditary. It generally affects middle-aged men and women,
advancing rapidly, with progressive loss of motor skills, eventual confinement
to bed, and death.  It is very rare for someone to live 15 years with MSA. There
is no remission from the disease and currently no cure. The current lack of
awareness of MSA leads to misdiagnosis and mistreatment, as well as misdirected
research funding that could be better applied to the MSA effort.

-more-



March is MSA Awareness Month, page two

Approximately 50,000 Americans are now reported to have MSA (possibly more). A
recent epidemiological survey, reported on the European MSA Study group website,
has found MSA to have a prevalence rate of 4.4 people per 100,000.
Those are the clinical facts of MSA. But they don't begin to address the havoc
the disease wreaks not only on patients but also on family members, caregivers
and friends, who watch their once vibrant loved one gradually lose all those
abilities once taken for granted. It is the goal of all those who have been
affected in some way by this disease to draw attention to it, not only during
March but also throughout the year.

"Novel research to diagnose this debilitating illness sooner and to separate it
from Parkinson's and other disease is critical for creating a better future for
MSA patients," said Dr. Anna Langerveld, who owns Genemarkers of Kalamazoo, MI.
"An important first step was taken in 2009 with a pilot study to define a
genetic signature of MSA in patient blood samples. The initial work was a
collaboration between Genemarkers, Dr. Charles Ide of Western Michigan
University and Dr. David Robertson of Vanderbilt University Medical School.
Efforts have begun to design and fund a new study to extend and improve these
findings. Success will require continued scientific and financial participation
from all interested groups. Our passion and the data generated in the ongoing
work will expand awareness of MSA, draw more scientists and physicians into our
efforts, and begin to bring hope to MSA patients and caregivers."

For more information on Multiple System Atrophy, including links to MSA
organizations and research groups worldwide please visit
http://www.MSAawareness.org.

To join the "Miracles for MSA" Facebook page, visit
http://www.facebook.com/pages/Miracles-for-MSA/138909258573.

###

There is a new post every week by Frank Cervone, city council member for
the city of Fairborn, Ohio.  Frank and his wife Susan and Frank's
childhood friend and Hollywood director Frank DeMartini are trying to
raise awareness for MSA.  Please read and add your comments of support
to the blog postings.

This is the news article about Frank Cervone published in March:
http://www.daytondailynews.com/news/dayton-news/fairborn-city-council-me\
mber-fighting-deadly-disease-1112681.html?viewAsSinglePage=true

Here are Parts 1 thru 4 of Frank's blog so far:

http://www.hollywoodrepublican.net/2011/04/three-dates-by-frank-cervone/
http://www.hollywoodrepublican.net/2011/04/council-meetings-with-msa/
http://www.hollywoodrepublican.net/2011/04/frank-cervone%e2%80%99s-battl\
e-with-msa-part-3/
http://www.hollywoodrepublican.net/2011/04/frank-cervone-and-multiple-sy\
stem-atrophy-part-4/

A film on Multiple System Atrophy has been entered in the Neuro Film Festival,
we need your help to get enough votes to make it the "Fan Favorite", this will
mean increased publicity for Multiple System Atrophy. This is an achievable goal
if we all work together. As of February 10th the film is in first place in the
voting but the second place film is very close behind, every single vote counts.
Ask your friends to vote, post on your facebook wall and twitter accounts, get
your teenage relatives involved so all their friends will vote too. We can do
this!!! PLEASE TAKE ACTION NOW! GO TO THIS WEBSITE AND ENTER YOUR VOTE BEFORE
MARCH 8TH.

Step 1: Go to Neuro Film Festival Website

Step 2: click on the VOTE NOW! tab.

Step 3: Click on Register Now and enter your details

Step 4: Check you email inbox for a verification email - click on the link to
verify your registration

Step 5: Go Vote -- Go back toNeuro Film Festival Website and click VOTE NOW Find
the Multiple System Atrophy MSA video in the list and click on the word VOTE

A film on Multiple System Atrophy has been entered in the Neuro Film Festival,
we need your help to get enough votes to make it the "Fan Favorite", this will
mean increased publicity for Multiple System Atrophy. This is an achievable goal
if we all work together. As of February 10th the film is in first place in the
voting but the second place film is very close behind, every single vote counts.
Ask your friends to vote, post on your facebook wall and twitter accounts, get
your teenage relatives involved so all their friends will vote too. We can do
this!!! PLEASE TAKE ACTION NOW! GO TO THIS WEBSITE AND ENTER YOUR VOTE BEFORE
MARCH 8TH.

Step 1: Go to Neuro Film Festival Website
http://patients.aan.com/go/about/neurofilmfestival

Step 2: click on the VOTE NOW! tab.

Step 3: Click on Register Now and enter your details

Step 4: Check you email inbox for a verification email - click on the link to
verify your registration

Step 5: Go Vote -- Go back to Neuro Film Festival Website
http://patients.aan.com/go/about/neurofilmfestival and click VOTE NOW Find the
Multiple System Atrophy MSA video in the list and click on the word VOTE

Press Release 2012 - March MSA Awareness Month

Facebook Group Fights to Create Awareness for Rare Neurological Disease;
Declares March as Multiple System Atrophy Awareness Month

Read the 2012 Press Release announcing March as Multiple System Atrophy
Awareness Month at http://www.MSAawareness.org/


Please make use of this FREE
sample Press Release announcing MSA Awareness month and send it out to
your local media. You can download a copy in word format from
http://www.msaawareness.org/wordpress/wp-content/uploads/2012/03/March-MSA-Aware\
ness-Month-2012.doc

Please remember to change the following details before you send it out:


1. Change the contact names at the top to include your own name or a
contact from your organization (you can remove Pam and Kim).
2. Change
the location from "Anywhere, US" to be your own City/town and Country --
remember this is not just for the United States as MSA knows no
boundaries
3. Feel free to replace any of the quotes from patients and
caregivers and include your own quotes.
4. If you have contact with MSA
researchers in your local area be sure to ask them for a quote about MSA
to include. If you don't have a medical contact feel free to keep the
quotes we included this year from the medical/research community in the
U.S.
5. Please leave the links to Miracles for MSA and MSAawareness.org
because we want to reach everyone affected by MSA and have them join us
here to make our voices even louder next year.
6. Please remember to
include links and a description about your local MSA organization so
that your organization will also be highlighted.
7. You may also wish to
highlight another facebook group or other online group, please feel
welcome to do so.

Together we can make Miracles happen for MSA!