Sometimes?  Most of the time ;)!

Cindy C.

On Sun, 26 Mar 2000 16:46:12 -0500 "Elizabeth H. Thiers"
<[log in to unmask]> writes:
> 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_