Ataxia and exercise

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 https://youtu.be/oXuQPY-oDGE?si

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Memories

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 One of my favorite Christmas gifts was a service that digitizes your old photos or videos to the format of your choice.  I sent pictures and had them put on DVD so I could import the photos into my library. A big challenge (unless you have unlimited funds) is choosing which photos to send.  That required going through photo albums that I haven’t looked at in forever. Lots of those pictures were from my pre-ataxia days.  Pictures of me skiing.  Pictures of me working.   Pictures of a whole different life. I grieve the loss of that life.  (Sidebar:  I used to be sadder at the loss of my teaching career.  But I live in Florida, the epicenter of telling teachers what they can say.  I taught at the college level and used to have a post-surgical trans woman come in to speak and answer questions.  No grooming.  Just information.  I could not do that today.  I don’t miss teaching.) Ataxia is a THIEF!  And it SUCKS! I am...
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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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New Electronic Survey 8/24

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  Members,  Dr. Christopher Gomez and Hannah Casey have worked hard to develop and get Institutional Review Board approval to create the below electronic SCA6 and SCA27B Survey Study.  This survey is intended to better understand lifestyle factors that might influence the timing and severity of symptom development and progression with a hope to better inform researchers and future generations about any potential impactful lifestyle factors. I appreciate that many of you participated in the past with the paper questionnaire that was sent through the mail and led to a successful publication just this year that we've discussed at some of our meetings ( https://pubmed.ncbi.nlm.nih.gov/38217689/ ). This publication has led to more questions though and rather than create another paper questionnaire, I'm so happy that Dr. Gomez and Hannah successfully created a logistically simpler, more streamlined electronic questionnaire that 'uses branching logic' to make...
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