SCA7 update

I am in a research study. The very early stages. I have finished the testing i needed to get the drug which i will get in 2018. I am 25 showed symptoms pretty much since my eyes got worse when i was 18…As far as the study goes I’m not too sure about the name of the drug I will be takin. it escapes me at the moment but I will update as I go through the study and actually get the drug. So stay tuned lol


My wife is just beginning a clinical study at the University of Rochester to determine in Rilutek can help in sca. She also has 7

Always nice to hear about other 7s I’m mostly in Maryland. In that big research facility they have.

What is Rilutek supposed to do? I tried looking it up and the best I could find was maybe it helps you breathe better? But that could be not at all right.

Hi Marjorie😊
This is also known as Riluzole.
There have been various posts about it. Next to your picture (where you log off) there’s a magnifying symbol. Click on that and put Riluzole in the search box😊xB

I have talked to you before I have sca type 7.Would be interested to see what happens with the new drug your trying.Please keep me informed.Thanks

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