SCAM!!!

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 Don’t purchase x39 patches.  They are marketed as helping balance.  Nothing more than a placebo and a high level scam.

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Ataxia Expert PT Videos

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Hi SCA6 Network members, I hope you all are well. I just received the below message from Dr. Tom Clouse who some of you may know. He has uploaded his exercise videos onto YouTube and is offering them for free. I live in FL with him and had the opportunity to discuss his book (Reclaiming Natural Movement) with him over lunch and later bought his book. He has an incredible and, to me, impressive, personal story of endurance, hope and activism. My knowledge about what exercises, physicla therapy work best are limited and I think Dr. Gomez has recommended things like yoga, tai chi or whatever keeps you going. The neat thing is that what Dr. Clouse has figured out seems to have worked for himself and he has also helped others, but it does require effort and I'm not going to go as far as saying that i know whether it works better than other things you might be doing. I am passing it along so you can try for yourself and see if it it helps you in any way. Even if it inspires you to keep d...
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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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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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