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