I don't know if anyone posted the below message from Marie, however they're
looking for families in Southern Illinois and Indiana to put them up for a
night while they're biking towards the convention in the Cycle the Heartland
for HD 2008!  These ladies are PHENOMENAL so if you live along US Hwy 40 [or
have family/friends who do], please share & see if you can host them!!
Thank you!  Jean

Subject: Cycle the Heartland for HD
From:Marie Nemec < BIKENQUILT@... >
Reply-To:Huntington's Disease Discussion <HUNT-DIS@...>
Date:Sun, 4 May 2008 20:41:10 -0600

Hi everyone,

I am taking a moment to catch my breath from trying to tie up so many
loose ends for "Cycle the Heartland for HD." Our website is up and
running: www.bikeforthecure.org

We are still looking for accommodations across Southern Illinois and
Indiana - along US Hwy 40, in Marshall IL, Putnamville IN, and Richmond
IN. If you know anyone in those locales, please e-mail me privately.

I have received donations and t-shirt sponsorships from a few on
Hunt-Dis, but didn't hear from many of you. It's too late to get a name
on the t-shirt, but you can still buy one or make a donation at
www.firstgiving.com/bikeforcure. Charlotte and I appreciate any support
of this endeavor.

An 11:00 am brunch is planned at the IHOP in Kansas City, right off the
Interstate, on Monday morning, May 19. Contact Barbara Younger at
beajayy@... for directions and to RSVP if you plan to attend.
Anyone from the HD Community in the KC Metro area is welcome!

With anticipation and in partnership,
Marie Nemec
Cycle the Heartland for HD

We're trying to find a good place in downtown Pittsburgh, near the HDSA
Convention hotel the Omni William Penn, to hold the 8th Annual On-Line HD
Family Get Together. The HDSA gave us a very helpful contact with
www.VisitPittsburgh.com  and he had several recommendations but some we had
to rule out because they were too far, too pricey or formal or not ADA or
smoking friendly ;-)

One place he listed I checked out was Mitchell's Restaurant & Bar - Website:
http://www.mitchells.tv/

Since none of us have ever been to Pittsburgh, we don't know if this would
be a good place or if anyone knows of other places near the Omni?
Mitchell's is .32 miles from the Omni hotel.

Any idea's or suggestions from Pittsburgh people will be greatly
appreciated!  Below is the information I provided him, to give you an idea
what we need. If you know of some place, or are familiar with Mitchell's
please either email me or Dave Hodgson spiketdog@...

Thank You!!!
Jean

About this event:
This is an annual get-together we have the night before the HDSA national
convention and is not an official part of the HDSA activities.  It is always
held on the Thursday night before the actual HDSA convention so this year it
will be Thursday, June 5th. This event is the only opportunity for
Huntington's Disease families from around the US who participate in Internet
HD on-line support groups to meet face-to-face for the first time or meet up
with old friends.  People from HDSA Chapters and Support groups also look
forward to this annual get-together.

Time:  Usually between the hours of 5 PM and 11 PM

Number of People:
The event typically has anywhere from 50 to 100 people attend.  The closer
it is to the Omni, the more people will attend. The age group varies from
teens to seniors.

Facility Accommodations:
Many of the people will have Huntington's Disease, therefore accommodations
should be disability-friendly.  In addition a smoking-friendly facility
would be appreciated.

Food & Pricing:
Many of the people who attend this event live on disability.  So if the
facility could have a range of food available from sandwiches to light meals
for under $20.00 that would be very helpful.

The Northern California HDSA Chapter recently held their 2nd Youth Support
Group event, with a Bowlathon, on May 31 in Fresno.
Another JHD Mom just wrote me about a wonderful video made by a young man
with JHD about for this event.

I love it that our teens and young adults are so savvy and can make such
moving documentaries! Ralphie's is a terrific video and brings home the
message WHY we need a CURE for our KIDS now!!! Please take a few minutes to
watch it!  His Mom's email is at the end of the video, I'm sure Ralphie
would appreciate getting a note thanking him for a great video obviously
made with a lot of love!

Thank YOU Ralphie!!!

Ralphie's HD Slideshow
http://www.youtube.com/watch?v=HNnS_pXfJrg
3:35 Minutes
A short video raising awareness about Huntington's Disease and the efforts
by a family to also raise funds to help combat this disease. Made by Ralphie
age who 16 has Juvenile HD and includes Annie 13 JHD and Randy 11, at-risk.

Below is information on the upcoming upstate New York area HD conference May 3rd.  As always, I encourage anyone who can attend their state HD conferences to........please do!  You have the opportunity not only to get updated on HD research and clinical trials and information that can help you plus you have the opportunity to meet others living with HD and make some friends who truly understand!  There are several great sessions for people with HD, caregivers, those at-risk and young people!!   Jimmy Pollard will be there and there will be a session for young people/NYA members!

Below and attached is the flyer and information on this conference.  The registration deadline is 27 April and the registration fee is $25.00 for the first person, $20 for each additional person.

Living Well with Huntington’s Disease

Sat. May 3, 2008 

Buffalo, NY

Holiday Inn Buffalo Int'l. Airport Hotel

4600 Genesee Street, Cheektowaga, NY

Driving/Map: http://snurl.com/24psd

The goal of this program is to reach out to those interested in learning more about Huntington’s

Disease. People with Huntington’s Disease, caregivers, those at risk, and health care professionals

are invited to attend.

8:00 — 8:30 am   Registration (with juice, coffee, muffins, and bagels)

8:30 — 8:40am   Welcome     Alan LaDonna

President, Upstate New York Chapter

Huntington’s Disease Society of America

8:40— 9:30am    HD Research

What have we learned and how can you help?

Kevin Biglan, MD

University of Rochester Medical Center

HDSA Center of Excellence

9:30 — 10:00am    A Personal Perspective: Living with HD

Barbara Field

10:00 — 11:00am  Thinking about Thinking with HD, Part I

Advice for family members to accommodate changes in

their loved ones more effectively.

Jimmy Pollard

11:00 — 11:15 am  Break

11:15 — 12:15pm   Thinking about Thinking with HD, Part II

12:15 — 1:00pm   Buffet Lunch

Breakout I [Chose one]:

1:00 — 2:00pm 

*Music Therapy and HD

Rosie Oliva, LCAT, MT-BC

Music Therapist

University of Rochester Medical Center

Living at Risk: Genetic Testing Issues and Beyond

Laura M. Tripi, M.S., C.G.C.

Certified Genetic Counselor

Women and Children's Hospital of Buffalo

Division of Genetics

How to Accommodate Cognitive Changes in More

Advanced Stage HD

Jimmy Pollard

Director, Huntington’s Disease Service

Tewksbury Hospital

Tewksbury, Massachusetts

2:00 — 2:15pm Soda and Popcorn Break

2:15 — 3:15pm  Breakout II (Choose one):

*Physical Therapy and HD

Alexandre doNascimento, PT, DPT, ATP

Head Physical Therapist

Buffalo Psychiatric Center

Long-term Care in HD

Gary DiNezza, PhD

Director of Psychology Training

Buffalo Psychiatric Center

Young People and HD

Amy Chesire, LCSW-R, MSG

Social Worker

University of Rochester Medical Center

HDSA Center of Excellence

Closing and evaluation

* Recommended for people with HD

Registration Fee Schedule

Yes, I (we) will be attending Living Well With Huntington’s Disease in

Buffalo, NY on May 3rd, 2008.

Name(s)______________________________________________

Address:______________________________________________

_____________________________________________________

Telephone_________________Special Dietary Needs_________

Please mail registration form and payment to:

HDSA Upstate New York Chapter c/o Amy Chesire

919 Westfall Rd. Building C, Suite 220

Rochester, NY 14618

Checks Made Payable to: HDSA

Includes buffet lunch

Registration due April 28th, 2008

$25 for 1 person,

$20 each additional person

Walk-ins are accepted; if you have any

questions or are interested in scholarships,

please call (585) 341-7400 or email

charlyne.hickey@...

• the current estimated cost, one-way, between two cities.
• the airline with the largest share of that market and their average cost for a one-way flight
• the lowest cost airline and their average cost for a one-way flight

• the current estimated cost, one-way, between two cities.
• the airline with the largest share of that market and their average cost for a one-way flight
• the lowest cost airline and their average cost for a one-way flight

The HD Lighthouse had an article up on Avicena's HD-02 Phase III HD Trial
before I sent out the release a few minutes ago!

Phase III Creatine Trial:
http://www.hdlighthouse.org/showUpdate.php?p_articleNumber=556

The Lighthouse has been following creatine as a promising supplement since
1998 when Lighthouse founder Jerry Lampson first proposed it be tested in HD
patients. A phase III trial has finally been funded. This is great news!

See above link for article.

How many times have you gone to www.google.com websearch and just put in the
words you needed to search for something, never paying attention to what
else the Google homepage might have to offer?  Probably not as many
kazillion times as I have....but I bet a lot ;-)

Just last week I discovered the "Gmail" at the top of the page and signed up
for a free email account to use as a back-up.  One of the reasons I signed
up and got an account is that it also give you access to "documents" which
are MS Word, Excel, and Power Point where you can create documents and or
share them with others.  This is excellent if you're working on planning an
event and need to exchange preliminary documents for review, editing, etc.

This morning I noticed "Images" as one of the options at the top of the
page.  When I clicked on it, it told me Google has THE most comprehensive
image search on the web.  Ok, so I put in "laughter" and got a 1000 smiling
faces of people I didn't know.  I typed in Kelly E. Miller and the first
picture
is of Kelly and I when she was 15!

Then I typed in Huntington's Disease...........WOW any article ever written
about HD that has or had a picture or diagram [studies/research papers],
newspaper articles, websites, etc. came up.  I don't know how many pages
there are.......I never got through them all!

Try it, who knows what you'll find!

Love
Jean

If you unexpectedly receive a Valentine's Day e-card, be careful. It may not be from a secret admirer, but instead might contain the Storm Worm virus.

With the holiday approaching, be on the lookout for spam e-mails spreading the Storm Worm malicious software (malware). The e-mail directs the recipient to click on a link to retrieve the electronic greeting card (e-card).

Once the user clicks on the link, malware is downloaded to the Internet-connected device and causes it to become infected and part of the Storm Worm botnet. A botnet is a network of compromised machines under the control of a single user. Botnets are typically set up to facilitate criminal activity such as spam e-mail, identity theft, denial of service attacks, and spreading malware to other machines on the Internet.

The Storm Worm virus has capitalized on various holidays in the last year by sending millions of e-mails advertising an e-card link within the text of the spam e-mail. Valentine's Day has been identified as the next target.

Be wary of any e-mail received from an unknown sender. Do not open any unsolicited e-mail and do not click on any links provided.

With the exception of the Cambridge Brain Repair Centre in the United
Kingdom, all DIMOND study locations are in the USA. Please read more about
this clinical trial, and how YOU can participate, on this HDSA link:
http://www.hdsa.org/site/PageServer?pagename=Research_Update_New_Dimebon_Clinica\
l_Trial

Excerpts: Dimebon clinical trial is recruiting
Phase II clinical trials of Dimebon called the DIMOND study.

Ninety participants will participate in the study; fifty people have already
enrolled and there is space for forty more.  The study is looking for
volunteers with early to moderate signs of HD who are walking independently
and are self-sufficient in activities of daily living, such as eating,
dressing, and bathing.

DIMOND is a smaller study with only fifteen participating sites.  However,
Medivation is willing to pay transportation costs including airfare for
those wishing to participate who do not live near a study site.

A list of participating sites with contact information can be found here:
http://www.huntington-study-group.org/DIMONDSiteList.html

For more information or to sign up for the DIMOND trial, call the Huntington
Study Group at 1-800-487-7671.

Huntington Study Group's DIMOND brochure:
http://www.huntington-study-group.org/Resources/DIMONDPressReleaseJuly2007.pdf