Treasure Coast Ataxia Support Group Meeting Recap - December 5th
Submitted by Kathi Yule
As people were checking into our zoom meeting on Saturday, December 5, 2020, Robert Dean started us off with sounds of Christmas.
At 11 am Lisa Cole opened the Support Group by sharing her screen which is full of sites to visit and become familiar with, for all kinds of help and questions that come up. She encouraged us to know her email, firstname.lastname@example.org, and to contact her at any time. She is always ready to encourage and direct any needs we may have. After going over various sites, Lisa had us introduce ourselves and share what is going on in our lives with Ataxia.
Our virtual group has folks from several areas of Florida, North Carolina, Arizona, California, Virginia and we are open to Ataxians from anywhere. Lisa took a screenshot and then began to share photos we had sent her of interests we used to do. Each participant talked about their picture and the enjoyment they had experienced.
Break out rooms were assigned and support continued in groups of four.
We came back together, to finish up any loose ends and the meeting was adjourned about 12:30.
Western Washington Ataxia Support Group Meeting Recap - December 12th
Submitted by Sterling Yarborough
The Western Washington Ataxia Support Group took a virtual tour of European Christmas Markets.
This picture took place in between viewing the Christmas Markets of Budapest, Hungary and Christmas Markets across Germany
Sioux Empire Ataxia Support Group Meeting Recap - December 12th
Submitted by Mary Beth Farley
We only had 5 people in attendance at our support group today. But one was a first time attender from Pierre, SD. She will likely become a regular. Her name is Kathy, She has SCA6. We talked about each other/our families/some who’ve had COVID. A woman lost her grand daughter who had SCA1 just a few days ago. ):
We are going to be sending gift cards to the kids/teens at the Sanford Specialty Hospital in Sioux Falls (The Castle) for Christmams. In the past, we’ve actually gotten gifts and taken them there. This was our 2 yr. Anniversary !! (The group held its first mtg in Dec. 2018) Our next mtg will be Jan. 9th, 2021.
Treasure Coast Ataxia Support Group Meeting Recap - December 19th
Submitted by Kathi Yule
With festive attire, Lisa Cole opened our December 19, 2020 Support Group meeting at 11:05. She shared her screen to review websites that are informative and helpful. Lisa’s thorough agendas make access to these websites readily available, click and go.
Our own live Santa, David L., was ready to hear and fulfill our wishes.
Lisa asked our speaker, Dr. Rana Hanna Al-Shaikh, if she could record her presentation for the 2pm meeting. She affirmed the request.
Dr. Rana Hanna Al-Shaikh leads the Research at Mayo Clinic focusing on Spinocerebellar Ataxia. They are having lots of success. She defined this Ataxia as “without order or coordination and cerebellar dysfunction.” Dr. Rana Hanna Al-Shaikh and her team focus on the 48 genetic subtypes of SCARS.
The Mayo Clinic Florida Ataxia Program is expanding its Clinical Trials as they continue to study outcomes with control groups. Detailed information was presented and explained. Questions were received and answered. Her information was helpful and Dr.
Al-Shaikh is available to us via email.
Lisa resumed the group meeting and shared two short videos. She also informed us about the NAF virtual Conference on March 10-13.
Introductions were shared and tips were given. Among those were:
- color, paint, play games such as Operation, to help maintain fine motor skills
- Get an Ataxia card for your car as well as have one available at all times.
- Use a spill me not holder for carrying liquids. -Available on Amazon
- set up a card table and do puzzles
- replace the bathroom towel rack with a grab bar for more stability.
- Always have a medical alert button (bracelet) on.
- Sign up with CORDS. Your information is secure.
Again, participants were from several states, including several areas of Florida, Tennessee, Southern California, Virginia, and Utah. Zoom meetings bring such positive assets to each of us.
Break Out Rooms were held for about 12 minutes and then Lisa shared her meeting schedules.
The meeting was adjourned. The next meeting will be on January 9 at 11 am and 2 pm.
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