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Ataxia Support Network

The future?


#1

So I am in a 5 year study under Dr. LASPADA who is working on a treatment for SCA7. He has told me he plans on reversing what I have. My question is what do I do after I get treatment and be normal again? I have had to put my life on hold now I have to be a part of society again. Any thoughts?


#2

That’s my desire! To be “normal”. As for anything else, I’ll work that out after I’m normal.


#3

What is Dr. Laspada using to treat your SCA7 ? I have SCA 6 and just finished one year trial of BHV-4157 which did not show any significant benefit.


#4

I do not know details I just know it’s an agent he will inject in the eye as well as the muscle. He just finished testing in mice with pretty good results.


#5

I like using the word normal because people always say I’m still normal but there’s no way I am. I guess I should take it step by step. I just like planning.


#6

OMG that sounds awful! Injection in the eye! Be careful.


#7

I have thought about that, too. In my case it is lots of wishful thinking. If I were normal I would have so much more freedom. I could travel without worrying about how to get clean, I would drive and go wherever I wanted, when I wanted, I could use makeup and jewelry, I would carry a purse. I would be more independent.


#8

When you know any details, please share with us if you can. 5 years trial appear to be a long time. But if it works, 5 years is worth the while.


#9

:slightly_smiling_face: I just read about Dr Albert La Spada, how he’s pursuing a promising treatment for SCA7, specifically to treat Retinal Degeneration. Is that the Study you’re referring to? It looks very promising :slightly_smiling_face: xB


#10

Yes that’s exactly right. Everyone’s very excited.


#11

Is he still in San Diego, CA?


#12

I’m not sure I think he moved