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Message from Dr. Gomez

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Messages from Dr. Gomez and Hannah Casey (research lead for this project):   Dear SCA6 Network Members, From Dr. Gomez:   Thank you very much to all of those who have filled out our survey.  The questions on this very long survey have been collected to a large extent from the questions you all have asked me over the years. Our intention is to get answers from a large number of people in order for me to give informative replies to patients' questions in the future. We have been doing reasonably well, but we still have many more surveys to receive. The SCA6 network includes about 350 people. So far I have only received electronic surveys from 130 people. This is many more than the paper survey we conducted previously, but to really learn something, we have many more to go.  Can you please let us know when you complete the survey or let us know what trouble you’re having with completing it. Thank you very much. From Hannah: 'Another email reminder would be greatly appreciated. We
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Not Doing Wel

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 I usually post about how to deal with ataxia.  But I feel like a fraud doling out coping information.  Now it’s me with awesome anger, severe depression and crying 24/7.  I know this is temporary and that I will better manage things and pull my head out of my ass.  For those on Facebook saying it’s hard to be housebound with no friends.  I see you.  And I understand.
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Ataxia and me website

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 I found this website helpful. ataxia and me.org
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Drugs for ataxia

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Summary Sept. 24 zoom call

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TDear Members, Thank you to those of you who were able to participate in Friday's meeting with Dr. Gomez. My apologies again for the late start due to forgetting I needed to use my personal computer which allows recording of the meetings rather than my work computer and back to back meetings that afternoon. At least it is recorded for those who missed it or want to listen again. Next time I will make sure I have nothing prior to this meeting so I can get it started earlier. I am very glad we had the meeting though; it was timely to discuss and encourage full participation in the survey (information attached), it was so great listening to Hannah Casey talk about it, and I think we all loved hearing about Dr. Gomez's other research progress also. I thought his discussion about current medicines was valuable, including his caution about not getting false hopes up about the Biohaven drug, certainly without FDA approval, which may not happen. We'll see. He sounded more optimisti
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