Ataxia

TDear Members, Thank you to those of you who were able to participate in Friday's meeting with Dr. Gomez. My apologies again for the late start due to forgetting I needed to use my personal computer which allows recording of the meetings rather than my work computer and back to back meetings that afternoon. At least it is recorded for those who missed it or want to listen again. Next time I will make sure I have nothing prior to this meeting so I can get it started earlier. I am very glad we had the meeting though; it was timely to discuss and encourage full participation in the survey (information attached), it was so great listening to Hannah Casey talk about it, and I think we all loved hearing about Dr. Gomez's other research progress also. I thought his discussion about current medicines was valuable, including his caution about not getting false hopes up about the Biohaven drug, certainly without FDA approval, which may not happen. We'll see. He sounded more optimisti

 

Dear Members, Please accept my apologies for putting the discordant times in the e-mail I sent yesterday.  Please join me by Zoom  on Sept. 27th ,  next week on Friday at 4 pm  US Eastern Standard Time (EST) for a meeting with Dr. Christopher Gomez for an update on what is happening with SCA6 research, to get questions answered, and also to discuss the SCA6 and SCA27B survey. The meeting will be recorded for those unable to attend. If you wish to participate in the study, you can access the electronic consent and survey with this link:  https://redcap.uchicago.edu/surveys/?s=KK7N44F43HMDNYY3 If you have any questions about the survey, please see attached information or contact Hannah Casey below who is leading this effort. Feedback I've received is that it takes 30 minutes to a couple hours to complete, but there is a 'save and exit' button for if you want to take a break. Best wishes, Terry   Hannah Casey  |  Senior Analyst, Clinical Research Department of Neurology The Un

  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 the questions mor