Winter 2019-2020 Support Group News

Check out the latest news and meeting recaps from our Ataxia Support Groups around the country.

Chicago Ataxia Support Group - December Meeting Recap

The Chicago Ataxia Support Group Meeting was held on Saturday, December 14. It was a good turn out with 17 people attending. We all enjoyed lots of yummy treats and group discussion getting to know each other, hearing from Dr. Opal about Ataxia research and management of Ataxia, talking about the Ataxia Conference in Denver, how to connect with others on social media, and Ataxia advocacy activities.

Treasure Coast Ataxia Support Group - December Meeting Recap

Submitted by Lisa Cole

The Florida Treasure Coast Ataxia Support Group met on Saturday, December 7 th from 11:00 am – 2:00 p.m. in Port St. Lucie, Fl. There were 8 people who attended the lunch meeting in the Port St. Lucie Community Center.

Our special guest speaker was Dr. Subramony. We were able to conference call him with personal questions. We also shared new things that are happening in our lives and things that help us daily with Ataxia. Lisa Cole provided a beautiful lunch for us and in the spirit of the Holiday Season, we did our annual gift exchange.

Sioux Empire Ataxia Support Group - December Meeting Recap

Submitted by Mary Beth Farley

Only five of us were able to attend. New grandchildren being adopted, other holiday parties, and today’s cold weather kept some people away.

January 11th meeting is at my apartment like it used to be 111 East 7th Street Sioux Falls South Dakota 1 p.m.

February 8th meeting is that the library downtown 324 North Dakota Avenue Sioux Falls 1 p.m.

Sioux Empire Celebrates the Season of Giving

Submitted by Mary Beth Farley

The Sioux Empire Ataxia Support Group donated a few Christmas presents for the Christmas room for parents to get Christmas gifts for their kids at the Sanford Children’s Hospital.

Dayton Kicks Off Their First Meeting

Submitted by Sue Moore

We had a great first meeting this month! Our meeting included pleasant camaraderie, hearing each other’s stories/suggestions/experiences, meds, research, and life skills such as how to deal with chronic issues such as choking.  I think our meeting will always have a topic to discuss and include time for open discussions.  I’m looking forward to Jack and Christina discussing their journey with Canine Companions at the February meeting.

The next meeting is scheduled on Sunday, February 16 at 2-5pm at the Dayton Downtown Library (Room 1A).

We are looking for a volunteer to create a Facebook Page for our group let me know if you are interested in volunteering. We welcome any new members. Please contact me to join our mailing list.

I’m excited to move forward with all of you in 2020.

For more information about the Dayton Ataxia Support Group contact:

Sue Moore
Phone #: 614-395-9933
Email: susanlmoore1@gmail.com

Denver Ataxia Support Group - January Meeting Recap

Submitted by Charlotte Depew

Twenty-five attended with three being new members.  As always, we had a nice potluck lunch and seems those who cooked were in a pasta mood.  Of course, we had some variety with Kentucky fried chicken, sandwiches, and more, especially desserts. 

After lunch and socializing, Charlotte made announcements. Only one person, newly diagnosed, was not yet a NAF member and given application information.  The Annual Ataxia Conference (AAC) will need volunteers and a separate email will come soon.  Nearly all present plan on attending the Denver AAC and are registered. 

One of our members, Thomas Baker in Colorado Springs told us about NAF’s Bataan March in March, 2020.  He has SCA-2, walks 4+ miles daily, and we all applauded his plan to walk the 26-miles at White Sands, NM.  Members gave him their names and email addresses if interested in donating.  Anyone may donate by going into his website, https://app.mobilecause.com/vf/JMB/ThomasBaker .

Renee King, a physical therapist from Un Colorado Anschutz Clinics, was our speaker.  She was informative with some new information as neuroplasticity.  With near daily repetitive motion, like 1,000/day, the brain will gradually form new pathways to learn the movement.  Of course, she discussed the various balance and coordination therapies as well.  Karl, one of our members, has worked with her for 3-years, once or twice a week, in their pool with an under-water treadmill.  With the pool treadmill movements and additional exercises at home, he has he had no falls this past year and no deterioration in mobility or coordination in three years.  We got watch him in the pool via video.  Now, THAT should get all of us moving!!

Alabama Ataxia Support Group - January Meeting Recap

The Alabama Ataxia Support Group held their January 2020 meeting at their host site, Covenant Presbyterian Church in Homewood, AL., with 28 members attending, including two new families.  The meeting began with snacks and socialization, followed by an opportunity for each member to share their status regarding Ataxia/caregiver. The leader gave out updated membership lists as well as the eight 2020 Cell Group leader contact lists. All eight leaders gladly accepted their responsibility to stay in contact with their members to accomplish our goal of “staying in touch.”

Members enjoyed a delicious lunch from Ouslers Catering of Mountain Brook, coordinated by Sandee Mackinaw.  Then the group broke into break-out sessions, a favorite part of our meetings,  followed by inspiration led by Juanita explaining the connection between some of us and the slow turtle. The meeting ended with words of encouragement to all.

Add to calendar:

Alabama Ataxia Support Group Christmas Social
December 19, 2020
B@A Warehouse, Birmingham, AL

Join us for some holiday fun and ornament swap!

For more information contact Becky Donnelly at 205-987-2883 or donnelly6132b@aol.com
Join Our Facebook Group!

Treasure Coast Ataxia Support Group Meeting - 2/1/2020

Submitted by Kathi Yule

We introduced ourselves and shared a little about our Ataxia condition.  This helped us appreciate the multi-facets of Ataxia, as well as receive support.  

Dr. Jerome True, DC, of Stuart, provided us knowledge and expertise with an overview of ataxia, therapeutic options and future directions in treatment. He has 30 years of study, focused on nutrition and supplements. He emphasized that a major factor for us is to discover triggers that hinder or triggers that reduce the dysfunction of ataxia, as well as protect what remains of our brain.

Lisa and Jerry had a bountiful display of materials available as well as sandwiches, fruit, veggies and water. 

The meeting was informative, encouraging and supportive.

Watch for upcoming events and meetings.. We hope to see you there!

Portland Ataxia Support Group - February Meeting Recap

Our Ataxia Support Group meeting on Sunday had two new members, in addition to someone that hasn’t came to a meeting in several years. Of course most of our regulars were there too. Due to the influx of fresh faces we spent most the meeting learning about each other. David had a little time to demonstrate his symbol based communication tool on his tablet. The app was ChatAble,

I setup our next two meetings. March 22nd, and April 26th. Both meetings will be at 2:30 at the Capital Hill Library as usual. I need your help to fill out the agendas. If there is a particular topic of interest, or idea for a guest speaker please let me know.

Philadelphia Ataxia Support Group - First Meeting

Submitted by Jason Armstrong

We had our first meeting in February. It was great! People were very responsive and open. Looking forward to future meetings. 

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