Hi everyone.  I have recently read that a study was done that has shown that
Albuterol slows the progression of muscular dystrophy.  Does anyone know
about this?  Is anyone taking Albuterol to slow the muscle loss?  Joyce

Hi Everyone,

On line again, Luis Donoso & Maria Soledad parentes of Luis Alberto (10
y.o.) CMD (now we are not sure wich kind of MD is, but is in this
direction), from Santiago, Chile.

Any new's related to the GENOMA and the MD's ? Can someone tell us if this
artifact can help us ?

Welcome back to everyone...

Luis


   บบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบ
    Luis Alberto Donoso       -      Geophysicist, M.Cs.
    บบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบ
    Empresa Nacional del Petr๓leo
    Departamento de Exploraciones
    Vitacura 2736
    Las Condes 	 Voice : +56-2-2803173
    Santiago                                Fax   : +56-2-2803193
    CHILE
    บบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบบ

Hi all its nice to be back! I have a 7 year old son with DMD, jack he is ok
for now but getting weaker are there any new developments since the old list
died ?
----- Original Message -----
From: Jenny Smyth <smiles@...>
To: MD-List <md-list@egroups.com>
Sent: Thursday, September 07, 2000 1:58 AM
Subject: [MD-List] MAUREEN


>
> Hi Maureen,
> How are you, you have DMD right.  I go to dmdchat on mirc on talktaime
> it would be good to catch up with you there or by personal email.
> Jenny
> --
> Jenny Smyth
> Smiles World: http://members.xoom.com/smile5/index.html
> NZ Neuromuscular Conditions Club:
> http://clubs.yahoo.com/clubs/neuromuscularconditionsclub
> Jenny's SMA Club: http://clubs.yahoo.com/clubs/jennyssmaclub
>
> ICQ me on #23680346     Yahoo Pager User ID:  smile0598
>
> To unsubscribe from this group, send an email to:
> md-list-unsubscribe@egroups.com
>
>
>
>

Hi Maureen,
How are you, you have DMD right.  I go to dmdchat on mirc on talktaime
it would be good to catch up with you there or by personal email.
Jenny
--
Jenny Smyth
Smiles World: http://members.xoom.com/smile5/index.html
NZ Neuromuscular Conditions Club:
http://clubs.yahoo.com/clubs/neuromuscularconditionsclub
Jenny's SMA Club: http://clubs.yahoo.com/clubs/jennyssmaclub

ICQ me on #23680346     Yahoo Pager User ID:  smile0598

Darran
Can I add this to my SMA club as a post, I'm sure there is interest
there?
Jenny

<I would just like to send out a brief message letting everyone know
that
a few of us across Canada have applied to Revenue Canada for Registered
Charity Status for Families of SMA Canada.

Our main focus will be to fund research to find a cure for SMA.  We will
be working with families across Canada to help them organize fundraising
events in their area.

I invite anyone who would like more information to contact me.

Darren Bray
brayd@...

Watch for Families of SMA Canada.  We will have a Charity Number soon!!!
www.SMACanada.com

"Dedicated to Raising research dollars for Spinal Muscular Atrophy.
Your
dollar can make a difference!">

--
Jenny Smyth
Smiles World: http://members.xoom.com/smile5/index.html
NZ Neuromuscular Conditions Club:
http://clubs.yahoo.com/clubs/neuromuscularconditionsclub
Jenny's SMA Club: http://clubs.yahoo.com/clubs/jennyssmaclub

ICQ me on #23680346     Yahoo Pager User ID:  smile0598

Hi, all I am new to this list. I have two boys with DMD ages 9 and 11.  Been
married for 11 years.  I look forward to reading everyones posts.
Cassi

MY NAME IS MAUREEN glad THIS LIST IS back on line

Mary Ann,

Do you know Vikki Stefans, a pediatric physiatrist at Arkansas Children's
Hospital?  She was on this list and has been a wonderful wealth of
information for many of us.

Andrea

At 10:11 AM 9/6/00 -0500, Mary Ann Littlefield wrote:
>
>   Dear Friends of the MD List,
>This is my first message, although I was a reader of the old list for three
>years.  My grandson, William, age 10 1/2, was diagnosed at age 7 with
>Duchenne MD and the old list was a wonderful source of information.  I
>thank all of you for your dedication to providing information, comfort, and
>friendship.  Your help was and is truly appreciated and I am thankful that
>Ray was able to get the new list going.
>    Since William's original diagnosis, one of the neurologist at the
>Arkansas Children's Hospital reexamined tissue preserved from his muscle
>biopsy and thinks that William may have Becker's.  Whatever, William's
>progressive weakness sure seems to follow what I've read about Duchenne.
>William has just started taking Deflazacort, and we're hopeful that he can
>tolerate it.  Our source for Deflazacort sold under the brand name,
>Calcort, is from a pharmacy in Nuevo Laredo, MX.  I would be happy to share
>with you that information.  Also, does anyone know of more recent
>publication of reports of using Deflazacort?  Everything I have researched
>seems to be three or four years old?  Thanks, Mary Ann in Little Rock, AR
>
>
>To unsubscribe from this group, send an email to:
>md-list-unsubscribe@egroups.com
>
>
>

^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^
Andrea Gapko, Director
Academic Skills Center
University of Wisconsin - Eau Claire
Eau Claire, WI  54702-4004
Phone:   715-836-3717    FAX:  715-836-2521
Home:  715-834-3897  Home FAX:  715-834-7226
E-mail:  gapkoam@...

^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^ ^

Dear Friends of the MD List,
This is my first message, although I was a reader of the old list for three
years.  My grandson, William, age 10 1/2, was diagnosed at age 7 with
Duchenne MD and the old list was a wonderful source of information.  I
thank all of you for your dedication to providing information, comfort, and
friendship.  Your help was and is truly appreciated and I am thankful that
Ray was able to get the new list going.
     Since William's original diagnosis, one of the neurologist at the
Arkansas Children's Hospital reexamined tissue preserved from his muscle
biopsy and thinks that William may have Becker's.  Whatever, William's
progressive weakness sure seems to follow what I've read about Duchenne.
William has just started taking Deflazacort, and we're hopeful that he can
tolerate it.  Our source for Deflazacort sold under the brand name,
Calcort, is from a pharmacy in Nuevo Laredo, MX.  I would be happy to share
with you that information.  Also, does anyone know of more recent
publication of reports of using Deflazacort?  Everything I have researched
seems to be three or four years old?  Thanks, Mary Ann in Little Rock, AR

hi everyone,
though i did not participate much in the discussions, i sure missed the
list, its nice that the list is active once again.
welcome every one

Win Phatak webmaster
www.disabilitynet.org.in

Hi all.  This is the first time I have been to this list.
My daughter is 2 years old and has a nueromuscular disese.
Which one ??  Don't know.  We are scheduled for a muscle
biopsy in January in Atlanta Georgia.  We will be seeing
Dr. John Shoffner, anyone heard anything good or bad about him?
I was told he is great.  The doctors think Mito Myopathy because of
a few levels that were high with my daughter.  They aren't sure.
That is the reason for muscle biopsy.  I have some questions though.
I have read that an elevated CPK points towards MD, and other people
have told me you don't have to have an elevated CPK to be diagnosed
with MD?  Any info. would be appreciated.  Also, with MD can you have
a normal MRI or does it HAVE to be abnormal?  My daughter has had
two MRI's and both were normal for age.  She has had an EEG and EKG
and both were normal.  She has ocular motor apraxia(eye muscle/nuero
disorder), has kidney reflux, doesn't bear weight through legs, can't
walk, crawl, push up in prone position, stand, or pull up.  She has
little feet.  (size 4 and she is 2) .  She has speech apraxia and a
little behind on cognitive.  She also seems to have some problems
with tactile defensiveness.  We hope that this muscle biospy will be
able to tell us something.  Ashley was my third child and it seems
the other kids are fine.  I know there are many forms of MD and
nueromuscular diseases, but I guess I am trying to find out as much
info on all types so I can with her doctors maybe piece together this
puzzle.  Thank you for any information that you all can provide.
Pam

In a message dated 09/05/2000 9:25:55 PM Central Daylight Time,
smiles@... writes:

<< Im so glad to be back on here.  I have a neuromuscular condition and
  live in New Zealand.
  Hi Sherry good to see you lol >>

LOL.....good to see you too, Jenny!! :)

Ray,

 

Allow me to introduce myself, my name is Adam Scott, I am from Canberra (the capital of Australia).  I have been involved with MD for over ten years, I had two brothers (not actually brothers, those concerned and us considered us brothers though) with DMD, both gone now.  Still have great interest in MD though.

 

I would love to know your history.  If you do not want to post it to the egroups e-mail me at jensen@....

 

Warm regards

Adam :-)

  

To unsubscribe from this group, send an email to:
md-list-unsubscribe@egroups.com

Kevin M. Rudolph E-Mail: turbokev@...
Kentucky Colonel WWW: http://www.turbokev.com
Louisville, Kentucky 40214 The Bluegrass State

Hi all,
Im so glad to be back on here.  I have a neuromuscular condition and
live in New Zealand.
Hi Sherry good to see you lol
Suxess are you here yet??
Helen Im also on the Enaf (internaf list) too.
Deborah Robins <How do you set this thing to digest?>  Deborah go here
http://www.egroups.com/mygroups then change it to digest from there.
Jenny
--
Jenny Smyth
Smiles World: http://members.xoom.com/smile5/index.html
NZ Neuromuscular Conditions Club:
http://clubs.yahoo.com/clubs/neuromuscularconditionsclub
Jenny's SMA Club: http://clubs.yahoo.com/clubs/jennyssmaclub

ICQ me on #23680346     Yahoo Pager User ID:  smile0598

I'm so glad to see this list.  I wondered what happened to the old one and
missed
it.
Mary Ann

Pat Tudisco wrote:

>
> Hi everyone
>
> Glad to see the List up and running again. I'm looking forward to reading
> informative posts.
>
> Pat Tudisco
>
> Sharon Hesterlee wrote:
>
> >
> > Hi Everyone,
> >
> > I too was on this list for a short time before it shut down.  My name is
> > Sharon and I'm a research program coordinator for the Muscular Dystrophy
> > Association (at the national headquarters in Tucson).  Basically, I read all
> > of the research papers, set up scientific collaborations, and try to bring
> > in new talented researchers that might be of help to the cause.  I've also
> > written several articles for Quest magazine.
> >
> > If anyone has any questions about MDA research, DNA testing, that sort of
> > thing, I'll try to answer them as time permits.  Glad to see this group back
> > together!
> >
> > Sharon
> >
> > Sharon E. Hesterlee, Ph.D.
> > Research Program Coordinator
> > Muscular Dystrophy Association
> > 3300 E. Sunrise Drive
> > Tucson, Arizona 85718
> >
> > shesterlee@...
> > Phone: 520-529-5433
> > Fax:      520-529-5454
> >
> > To unsubscribe from this group, send an email to:
> > md-list-unsubscribe@egroups.com
>
> _______________________________________________
> Why pay for something you could get for free?
> NetZero provides FREE Internet Access and Email
> http://www.netzero.net/download/index.html
>
> To unsubscribe from this group, send an email to:
> md-list-unsubscribe@egroups.com

Hi everyone

Glad to see the List up and running again. I'm looking forward to reading
informative posts.

Pat Tudisco

Sharon Hesterlee wrote:

>
> Hi Everyone,
>
> I too was on this list for a short time before it shut down.  My name is
> Sharon and I'm a research program coordinator for the Muscular Dystrophy
> Association (at the national headquarters in Tucson).  Basically, I read all
> of the research papers, set up scientific collaborations, and try to bring
> in new talented researchers that might be of help to the cause.  I've also
> written several articles for Quest magazine.
>
> If anyone has any questions about MDA research, DNA testing, that sort of
> thing, I'll try to answer them as time permits.  Glad to see this group back
> together!
>
> Sharon
>
> Sharon E. Hesterlee, Ph.D.
> Research Program Coordinator
> Muscular Dystrophy Association
> 3300 E. Sunrise Drive
> Tucson, Arizona 85718
>
> shesterlee@...
> Phone: 520-529-5433
> Fax:      520-529-5454
>
> To unsubscribe from this group, send an email to:
> md-list-unsubscribe@egroups.com

_______________________________________________
Why pay for something you could get for free?
NetZero provides FREE Internet Access and Email
http://www.netzero.net/download/index.html

In a message dated 09/05/2000 6:46:39 PM Central Daylight Time,
shesterlee@... writes:

<< If anyone has any questions about MDA research, DNA testing, that sort of
  thing, I'll try to answer them as time permits.  Glad to see this group back
  together! >>

Sharon,
I think it is wonderful that someone that is involved with the research is
willing to take time to be on a list with all of us and willing to answer
questions.  My family is very thankful for the MDA and the research that is
going on.

Thank you!
Sherry

Hi Everyone,

I too was on this list for a short time before it shut down.  My name is
Sharon and I'm a research program coordinator for the Muscular Dystrophy
Association (at the national headquarters in Tucson).  Basically, I read all
of the research papers, set up scientific collaborations, and try to bring
in new talented researchers that might be of help to the cause.  I've also
written several articles for Quest magazine.

If anyone has any questions about MDA research, DNA testing, that sort of
thing, I'll try to answer them as time permits.  Glad to see this group back
together!

Sharon

Sharon E. Hesterlee, Ph.D.
Research Program Coordinator
Muscular Dystrophy Association
3300 E. Sunrise Drive
Tucson, Arizona 85718

shesterlee@...
Phone: 520-529-5433
Fax:      520-529-5454

Hi everyone,

I was not on this list long before it was shut down.  I will look forward to
meeting you all.  I have a 10 month old son with Duchenne MD.  I also have
two daughters who are 8 and 5.  We had him tested at one month old due to it
running in my family.  I have always watched the telethons, but this one was
our first one since he was diagnosed.  I really did well with it as I thought
it would be very hard to watch this year.

Sherry

Hi all!!
Long time no see.. I am so very happy that Ray was indeed able to get this
up and running again..
I am Helen Bishop. I have a 7 year old grandson with some form of
neuromuscular disease.. at least that is what they keep telling us.
We are  all doing well. Had a great time watching the Telethon yesterday and
day before.. can't wait to talk with everyone again..
Take care all!!

Hugs and Love,
Helen
ENAF Support
http://www.ataxia.org

Please visit my homepage:
http://www.geocities.com/myn4fun2

Hi,
My name is Sue and I have a son with DMD age 15.  Glad to be back on line
with all of you.
Sue

According to AP News, they "raised a record $54.6 million"...
dailynews.yahoo.com/h/ap/20000904/us/jerry_lewis_telethon_1.html

Rich Clingman
rich@...

--- In md-list@egroups.com, danielsson@a... wrote:
> Question?  I did not see the end of the MDA Telethon, does anyone
know the tot board total?

In a message dated 09/05/2000 11:57:09 AM Central Daylight Time,
danielsson@... writes:

<< Question?  I did not see the end of the MDA Telethon, does anyone know the
  tot board total? >>

It ended with over $54 million.  I believe it was over a million dollars of
what they got last year.

Sherry

Guys~

I never posted a lot, but I enjoyed reading all the posts.  I am glad it is
back.

Question?  I did not see the end of the MDA Telethon, does anyone know the
tot board total?


Ciao :)!
Dan

Wow... 1 hour after the "new improved MD-List" was announced there
were 7 members, and only 12 hours later, a total of 41.  Welcome
back, folks!

This next weekend when I have more time and there are more people
back online, I'll compose a brief summary of what happened to
the "original MD-List".

Thanks for coming back, everyone.  I'll chat with you all more later!

Ray Harwood -- MD-List administrator