Ataxia and me website

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 I found this website helpful.


ataxia and me.org



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Research update 7/24

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  Dr. Gomez, Hannah Casey, and his Team are making great progress with the electronic questionnaire. They have submitted their plan for this to their Institutional Review Board for approval. It can take some time to satisfy all reviewer questions but it is a good milestone to have submitted their plan to them. This electronic questionnaire will include people with SCA6 or SCA27B, a newly identified form of ataxia with symptoms similar to SCA6. This is smart because it allows for comparison of the comprehensive responses for each group to allow for a better understanding of the similarities and differences between these 2 ataxia types. We will let you know when it becomes available.  I know many of you are interested in hearing about the SCA6 research in Dr. GOmez's lab. I see a new publication titled: " Digital Measures of Postural Sway Quantify Balance Deficits in Spinocerebellar Ataxia" https://pubmed.ncbi.nlm.nih.gov/38357985/ I know we all are looking f...
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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 optimis...
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AR & DG Meeting Update

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Dear SCA6 Network Members, Our next meeting with Dr. Christopher Gomez will be  on April 8 at 3 pm  hosted by Susan Stiles and the Ataxia Resources and Discussion Group (ARDG) in partnership with the SCA6 Network. The ARDG meets every Monday, but  next Monday  will be particularly special with a post-April Fool's Day joke, celebration of the ARDG 4 year anniversary, and discussion about next steps related to the recent publication by Dr. Gomez and Hannah Casey describing the findings from the SCA6 Network questionnaire. The analysis of your responses from the last survey helped answer some questions, but created some new ones.  Please also feel free to ask questions, particularly research-related ones, during the meeting. Susan will be watching the chat box  for questions. Please copy and paste the meeting link below into your calendars.  Note you may join by phone or e-mail, the time is EST and can be converted to other times with a Google s...
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