Greater Atlanta Support Group 4/18 Virtual Meeting Recap
Submitted by Greg Rooks
We had a great meeting on Saturday April 18th. Not as good as seeing everyone in person but the Zoom video conferencing worked pretty good. We had about 15 people joining us. Jennifer Pagano’s presentation on genetic counseling was very interesting. Thanks to all that were able to join.
To view a recording of the meeting and Jennifer’s presentation click here.
To print slides from the presentation, click here.
Our next event is our annual picnic on May 30th. More information will be sent later if cancellation or rescheduling is needed.
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South Carolina Ataxia Support Group 4/18 Meeting Recap
The first South Carolina Support Group online meeting on 4/18 had 6 attendees. Here’s a picture from that meeting.
The group shared their experiences and challenges with Ataxia. Various resources were shared by the group members. Topics of interest to the group to discuss at future meetings included exercise, eye movements, disability employment, and mental health. The group has plans to have meeting monthly.
Nebraska Ataxia Support Group 4/18 Meeting Recap
The Nebraska Ataxia 4/18 Online Meeting had 20 attendees.
Sioux Empire Ataxia Support Group 4/18 Meeting Recap
Submitted by Mary Beth Farley
The Sioux Empire Ataxia Support Group met on Saturday, April 18 at 1:00 pm via Zoom video chat. We also had a couple of guests with us: Kendra of Sioux Falls and Laurie from British Columbia. Kendra will also be our guest speaker on May 13th. Everyone introduced themselves and their connection to the world of people disabilities, as well as we spoke about how they are coping and managing during this time of social separation. Then Sandy presented her biography about who she is and what she is learning/managing now in the world of Ataxia.
We talked about the fundraiser and the Walk N’ Roll website or people can donate to the NAF. That website is https://app.mobilecause.com/vf/AtaxiaWalkSD. We then had some discussion about a letter that we would like to send out to potential sponsors.
Treasure Coast Ataxia Support Group 4/25 Meeting Recap
Submitted by Kathi Yule
The weekly Zoom meeting of our Treasure Coast Ataxia Group opened on Saturday, April 25 at 11am. Lisa made introductions and announcements as well as showing terrific web sites, which are informative, helpful and available to us.
Lisa introduced our feature presenter, Kyle Bryant, author of Shifting Into High Gear. Kyle shared his understanding and eloquently discussed our understanding and expressions of our main thread of Ataxia, as our personal situations vary. He suggested we look at Ataxia as an opportunity to make a difference.His story is one of “pursuing adventure in the face of adversity” Kyle showed his home and how he has made accommodations for himself. Certainly Kyle is an enlightening hero who inspires so many. Questions were asked and answered. Interactions from many areas were great.
We look forward to the weekly Saturday morning meetings on zoom. Our next meeting will be Saturday, May 2 at 11am. Be sure to pre-register. Looking forward to our next guest too.
Detroit 4/26 Support Group Meeting Recap
16 people attended the Detroit Ataxia Support Group Meeting on 4/26. Dr. Shakkottai answered questions from members about the COVID-19 pandemic and the risk for patients with Ataxia, the impact the pandemic has had on clinical trials, where things are at with a vaccine, and telehealth visits that will be available to patients through the year. Members shared how they are coping while sheltering in place with getting groceries, watching NAF webinars, staying active, and connected with family. Members also shared their thoughts on continuing to social distance or shelter in place even after businesses start opening up to continue to stay safe.
Portland Ataxia Support Group 4/26 Meeting Recap
9 people attended the group’s first virtual meeting. The group shared how they were coping during the pandemic. They talked about accessible housing and the benefits on one story living, railings, and elevators. The group also discussed the psychological difficulties of transitioning to using a walker or wheelchair. Everyone talked about how much they enjoyed the NAF webinar on Physical Therapy and how beneficial if was to hear about the eye issues that were mentioned. The group also talked about insurance issues with getting genetic testing done and are looking forward to attending the upcoming NAF webinar on genetic testing.
Arizona Ataxia Support Group 5/2 Meeting Recap
24 people attended the first Arizona Virtual Support Group meeting. The group shared how they were adapting and spending their time while sheltering in place and the physical and mental challenges that the isolation has had on their well-being. Dr. Shah was are guest speaker and answered many questions about the COVID-19 pandemic and treatments for ataxia.
Central Indiana Ataxia Support Group 5/2 Meeting Recap
11 people attended the first Virtual Central Indiana Support Group meeting. The group shared how we were all fairing while sheltering in place and safety considerations and concerns when restrictions are lifted. The group also discussed participating in clinical trials, research studies, and genetic testing. Some good resources were also shared such as the HowWeFeel App and the Chronic Joy organization.
Read Other Support Group News
Author: Amy Draves Upon learning that I (Amy) for sure had Ataxia of some kind, I joined the Facebook page of the National Ataxia Foundation. Read More…
Submitted by Amy Draves We had a relatively small in numbers meeting but LOTS of encouragement and support from each other. We had two speakers Read More…
Author: Lori Shogren, Community Program and Services Director It was a pleasure to attend the Twin Cities Ataxia Support Group Meeting on November 16. This Read More…
Photo: A few members got together for a Preholiday Fun Lunch Saturday, November 16 at the Fish Company, Bass Pro in Northfield, Denver. Author: Charlotte Read More…