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?
That’s my desire! To be “normal”. As for anything else, I’ll work that out after I’m normal.
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.
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.
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.
OMG that sounds awful! Injection in the eye! Be careful.
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.
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.
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 xB
Yes that’s exactly right. Everyone’s very excited.
Is he still in San Diego, CA?
I’m not sure I think he moved