Summary Sept. 24 zoom call

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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 optimistic about the potential for dalfampridine to help which he spelled out in the text box. Please listen to the recording to understand more about his thoughts on dalfampridine. Roy requested and Armando shared the attached list of medicines collated by NAF that may help with general ataxia symptoms; of course, check with your personal doctor first before considering use.

Best wishes,
Terry

Link to Zoom recording and password which you will need:

https://us02web.zoom.us/rec/share/H7SjzMTds9G_CUjBLlcOpmCfnrPXUC_AjYmMc9PzwwEXJk6VytfRMDWNow-kF1E3.ulEwflG6OyhPagcg?startTime=172746746400


Passcode: mQ%5YVeX






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