Russ,
Have you checked out NORD's  or OMIM;s websites yet? NORD=National
Organization for Rare and Orphaned Diseases and OMIM = On-line Mendelin
Inheritance of Man.  Deborah, you may find the NORD website helpful for
finding info on Sjorgen's.  Sometimes you have to educate doctors.

Beth the OT



-----Original Message-----
From: St. John's University Cerebral Palsy List
[mailto:[log in to unmask]]On Behalf Of Russ White
Sent: Sunday, March 26, 2000 11:31 AM
To: [log in to unmask]
Subject: Re: A feeling question..


Most disabled folks believe we are disabled for a purpose, I can only figure
my purpose is to seek the answers for my disability (Friedreich's Ataxia) as
well as others.  I am an MDAer but also a Jerry's Orphan as of two months
ago
when I learned that MDA does not have mouse research for FA and little for
DMD and SMA.  The people who contribute and donate are probably paying for
VP
vacations and Jerry's estate in Australia.  I have the urge to take over his
spot only if I can find more support than what I got now.  I want to cover
all Genetic neuromuscular disabilities.  I did this; I organized interested
parties from the ataxia list, other forms of ataxia MDA does not cover
(other
forms are there), created us a list, unified and discussed this.  Then I
created the GDU list linked bellow.  I urge this list to do the same and
have
a reprenitive join GDU on the link below.
So Sincere,

Russ White
Orlando, FL
 <A HREF="http://www.onelist.com/group/GeneticDisabilitiesUnite">ONElist :
GeneticDisabilitiesUnite</A>
 <A HREF="http://members.aol.com/rwtw128/mypage.html">My Autobiography</A>
"Do not suppose that, if you find something hard to achieve, it is beyond
human capacity; rather, if something is possible and appropriate for man,
assume that it must also be within your own reach." - Marcus Aurelius, _The
Meditations_