Summer 2019 Support Group News

Photo: Treasure Coast Ataxia Support Group

Author: NAF Support Group Leaders

Treasure Coast Ataxia Support Group Meeting

On June 29, at the Chop House we had a great lunch and get together. Our guest speaker, Mark Bozzo, a massage therapist, talked about massage therapy and how it’s maintenance helps with quality of life and has many other benefits. Also, Mark spoke about how stretching helps us to get back our flexibility to a certain extent.

Submitted by Lisa Cole

For information about the Treasure Coast Support Group, contact:
Lisa Cole | Phone: 772-370-3041 | Email: lisacoleataxia@gmail.com
Support Group Website: https://www.floridastreasurecoastataxiasupportgroup.club/ | Facebook Group: https://www.facebook.com/groups/572410932959895/

 

Northeast OH Ataxia Support Group Raises Awareness at Cleveland ADA Event

This event’s mission is to celebrate, lead, and engage. ADA Cleveland seeks to CELEBRATE the ongoing legacy of the Americans with Disabilities Act. LEAD in ensuring access, increasing awareness, promoting independence and providing opportunity. ENGAGE our community as advocates for positive change. The Northeast OH Ataxia Support Group joined other patient advocacy groups and organizations in the Cleveland area at this event to celebrate ADA, raise awareness, and share resources. The event had a great turnout and the weather was perfect!

For information about the Cleveland Area Support Group, contact:
Carmen Pieragastini | Phone: 440-220-0697 | Email: willowpier@roadrunner.com
Support Group Website: http://ataxiafoundationcleveland.blogspot.com/? | Facebook Group: https://www.facebook.com/groups/157330301877408/

 

Florida Support Group Joint Meeting

Florida Ataxia Support Group Meeting was held on July 27th, 2019 in Orlando at Southwest Library Community Room-7255 Della Dr., Orlando, Fl 32819. We had four) speakers (Dr. Subramony, Dr. Burns, Nantesha Chen and Dr. Thomas Clouse). It was a very informative meeting.

Dr. Burns and Dr. Subramony talked about the Ongoing research at UF and about Sporadic Ataxia, a form of Ataxia with unknown sources.

Dr. Clouse talked about natural movements.

Nantesha Chen (Physical Therapist) showed us how to do body movements counting 1, 2, 3, 4. We even danced bachata with the 1234 count to the right and to the left.

 

St. Louis Support Group Meets with Senator Blunt’s Office

In August 2019, representatives of the St Louis Ataxia Support Group met with other rare disease advocates and the staff of Senator Roy Blunt of Missouri. The meeting was set up by a group called Rare Across America, to promote rare disease advocacy. The meeting allowed us to briefly present our case, and we asked him to join the Rare Disease Congressional Caucus and co-sponsor a Federal Senate Resolution to declare September 25 annually as National Ataxia Awareness Day.

Submitted by Shannon Dunphy

For information about the St. Louis Support Group, contact:
Shannon Dunphy Lazo | Phone: 202-306-2738 | Email: shan_d@hotmail.com
Carol Tate | Phone: 314-497-4344 | Email: cajeantate@gmail.com

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