Sept Zoom meeting - you’re invited !

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 University of Chicago Biological Sciences Division

5841 South Maryland Avenue |MC 2030, Room A219 |Chicago, IL 60637

Office: 773.702.4610

Primary Email: hannahcasey@uchicago.edu

Alternative Email: hannahcasey@bsd.uchicago.edu

Theresa Boyle is inviting you to a scheduled Zoom meeting.

Join Zoom Meeting
https://us02web.zoom.us/j/81728507827?pwd=a6Amu1RumrkuQxNxWjGAOZ9hwmLCzR.1

Meeting ID: 817 2850 7827
Passcode: 123

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Meeting ID: 817 2850 7827

Find your local number: https://us02web.zoom.us/u/keDKUAwhZ2

Dear Members,

Please join me by Zoom on Sept. 27th, next week on Friday at 5 pm US 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. IWe received feedback that it takes approximately 1-3 hours in reality to answer the questions thoroughly, partly because when you answer 'yes' to a question, additional related questions are asked. I want to genuinely thank people for participating and especially to those of you who have made the committed effort to answer all of these questions. Many of these questions are based on questions you have asked Dr. Gomez over the years. He needs to collect this information from you in this organized manner and analyze it with statisticians to be able to answer our questions accurately and better understand SCA6. I realize it is a bigger commitment of time to answer this than we originally realized, but a 'save and exit' button was added so you can take breaks. Feel free to take breaks, eat snacks to reward yourself, and take your time. In particular, please make sure the genetic number of repeats is accurate on the surveys. If you want help to interpret your genetic results, you can send a copy or email a picture from your phone to Hannah Casey, Hannah.Casey@uchicago.edu or call her (flyer attached with her contact information). We value your feedback, including constructive feedback for improvement but please understand this is a grassroots effort not a commercial operation. This transition from paper to electronic is so good in so many ways but not without hiccups. Please consider making the time commitment to participate, knowing that it is not a trivial effort. Most achievements in life require dedicated time and effort. Thank you and I look forward to seeing you next week on Friday, September 27th! Please send me any questions you might have and fine to ask them yourself during the meeting too in the chat box or verbally.

I'll try sending it to your calendars now (not sure it works for non-gmail addresses) and a reminder email next Thursday.

Best wishes,

Terry