Ataxia

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

Dear SCA6 Network Members, Good news, after a summer break, the Fall SCA6 Network Zoom research meeting with Dr. Gomez is now scheduled for  Friday Sep 19, 2025  ⋅  12pm – 1pm  (Eastern Time - New York). You can look forward to  an update on the SCA6 research progress  by Dr. Gomz's team , particularly  the analysis of the SCA6 electronic questionnaire, and there may also be time to ask Dr. Gomez a few questions. I will try also sending the Zoom link directly to your calendars but it is only compatible with some calendar types. If you don't get the calendar link, please just copy and paste this meeting link into your calendar yourself. I will try to send a reminder the week and day before the meeting. You can join by clicking the link on your computer or calling the number below and putting in the meeting ID by phone. The password is 123. The meeting is  12 pm  east coast,  11 am central ,  10 am mountain , ...

Dear SCA6 Network Members, I hope you are having a good summer! I've been thinking recently about how great wheels are and wonder if any species other than ours uses wheels as a tool.  When moving homes, there is nothing like a hand truck or a dolly for heavy boxes and furniture; people love their cars, including some that can self-drive these days, bikes, skates, and scooters; most offices have desk chairs with wheels; but then somehow 'wheelchairs' are not as glorified. Tammy Schumann wrote a wonderful book titled "Scooter Sagas: Coping with Ataxia" describing her journey to more outdoor freedom with her scooters. The ataxia resource and discussion group (AR&DG) had a session discussing how to best travel with ataxia which definitely involved wheels. I was walking through an airport security line in Denver, CO last week thinking about how quickly so many people were walking the mile of roped aisles, back and forth, and how if anyone had any trouble walking h...

 

 I just read a post on Facebook that neurologists  are useless.  My response was that if you can do it, go to a research hospital like Chicago or Florida to meet doctors who know ataxia.  Many neurologists can go their whole career without seeing a single case of ataxia.