Ataxia

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 search for a time converter, the pass cod

  https://www.facebook.com/groups/1673775846150790/permalink/2260949840766718/

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 EST by Zoom to discuss his recent publication with Hannah Casey and others (including me) titled:  Early-Life Social Determinants of SCA6 A

  Dear Members, I wish you an early Happy Valentine's Day! I also wanted to pass along information about a phone tool and a few ideas and article links shared by members with me. I like to collect a few 'goodies' at a time before passing them along.  Talking Phone tool:  People with an ios 17 updated  iPhone can go to 'Accessibility', then 'Settings', scroll down to the "Speech" section and record their voices. Once the recording process is completed to teach the phone your voice, you can type a phrase into your phone and have your phone speak for you. This member wrote: " I am hopeful that the tool will improve. It sounds like my voice, but the pace and modulation of the speech aren't quite right yet." Recipes:  One of my members asked me about good recipes for meals that are delicious and easy to eat, but I don't think I've asked about this before. We've shared tips about  good posture,  double swallowing, chin tucking,