Ataxia awareness
 

Hello,
-just wanted to post this FYI. It's very difficult to raise awareness when we're not even mentioned on the NORD database (actually, I did find something under "Olivopontocerebellar Atrophy," which is another older term for SCA, which is still used here and there...):

http://www.kumc.edu/gec/support/ataxia.html

I copied this from the genetics link which is already posted here in the "Useful Information and Websites" thread.

Thanks.

P.S. Here's another good one, FYI: http://internaf.org/friends.html

No Response?
 

Your point is well taken, as there have been no responses to your thread -- posted in 2007. I hadn't even heard of Ataxia, SCR, or anything akin to it until two years ago. September 25th is International Ataxia Awareness Day. Can you do anything to raise awareness? LOL I don't hold out much hope even this post will be seen...

My brother has Apraxia (low muscle tone), has good/high intelligence, speech affected, was almost impossibe to understand. Between my mother, my aunt and himself, lots os speech therapy, is 60 now, a CPA, lovely wife, kids and home. His eldest girl got perfect SAT scores, went to MIT and is doing something with solar energy catylsts I don't understand at all.

My friend from age when i was 14 (I'm now 58)has an ataxic son. Not sure most people would have seen the low muscle tone but she was a Special Ed. teacher and reconized it. Intelligence not impressive but I think from his father's contribution to his gene pool. Apraxia is musculear not intelligence.