AR & DG SCA6 Joint Meeting

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Members,

Hello and I hope you all are doing well. I'm just back from a wonderful vacation near Helen, Georgia with beautiful waterfalls in every direction and a stop by Silver Springs FL state park on the way home for an amazing glass bottom boat ride. We saw lots of fish, sea turtles, a new emerging 'popcorn' spring, an ancient sunken dugout canoe, and a manatee through the clear glass bottom in just a 30 minute tour. Totally recommend this if you are in the Tampa area and have some time; easy walk on and off the boat and tranquil waters so anyone can go and have a wonderful time. 

The reason for my e-mail though:

Please save the date on your calendars because Susan Stiles, leader of the Ataxia Resources and Discussion Group (AD&DG, flyer for her weekly Zoom discussion attached) will be hosting Dr. Chris Gomez on April 8th at 3 pm ESTby Zoom to discuss his recent publication with Hannah Casey and others (including me) titled: 

Early-Life Social Determinants of SCA6 Age at Onset, Severity, and Progression

I will forward Susan's e-mail with the Zoom link when it gets closer. She does record it so those of you around the world can watch it at your leisure. This meeting will be important for planning for the next electronic survey which Dr. Gomez and Hannah are working on which will likely delve more into some related questions, such as what type of exercise is associated with different age of onset? Is it more head trauma that should be avoided (just like for any kid)? How does education level really contribute to later onset in some individuals with SCA6? Does reading and continual learning help? Or is there some other confounder that is the real cause of this association?

I think the ARDG will also be celebrating their 4 year anniversary. I'm hoping there might also be a little time to talk about the new tool of using your own phone for recording your voice such that if it becomes more difficult to communicate clearly later on, the phone is an available tool for communicating more clearly in your natural voice. It seems with AI so much more advanced now that this should become a more and more user-friendly and useful tool over time to help all people with conditions that progressively affect speech.

Best wishes,
Terry


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