Welcome to the East Tennessee Chapter!
Thank you for visiting the East Tennessee Chapter of the FSHD Society which officially launched in May 2019. We are here to build a local community of patients, family and friends, and help them connect and advocate for themselves and each other. Our hope for the future is to find a cure – Until then, we hope to bring a greater awareness to the community, and to help improve the quality of life of all those affected.
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Thanks to All Who Joined Us for Our Member Meeting on Saturday, September 21st!
Huge thanks to Peggy Glenn, one of our chapter members, who was gracious enough to lend us the space! It is a rancher style house with a walkout basement and a wheelchair accessible environment.
After the meeting we had a house party with a live band and great food! A wonderful time was had by all
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To contact us directly, please email: EastTNChapter@fshdsociety.org
Don’t forget to follow us on FACEBOOK
Please join us! Simply fill out the form in the sidebar to become a member of the East TN chapter
Upcoming Events
Dec
7
Webinar: The ABC’s of clinical trials with Dr. Rabi Tawil
This year, Acceleron’s ACE-083 drug is expected to complete its phase 2b trial, and Fulcrum is conducting its trial of Dr. Rabi Tawil the first drug intended to repress DUX4, the gene implicated in causing FSHD. This is a good time to brush up on the vocabulary of clinical trials and the FDA approval process, and learn how to navigate the path to volunteering for trials. Your guide is Rabi Tawil, MD, who is principal investigator for several clinical trials…
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FSHD Radio – December show
Join radio host Tim Hollenback via Facebook Live on Wednesday, December 18, at 9:00 PM EST - topic TBD
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JENNIE HARRIMAN
Chapter Director
Once upon a time, a little girl named Jennie had a crooked smile. She struggled to cross the monkey bars on the playground or do sit-ups.She had her own way of drinking through a straw and could not whistle.
When she grew up, she had a beautiful baby girl. She raised her on her own, as a single mother. As Jennie got older, it became difficult for her to walk up hills or stairs. When she was diagnosed with FSH at age 36, she discovered a reason for these things that made her unique.
At age 47, her legs became weaker and she started using a power chair. She searched and searched and went to four different physical therapists before finding her magic PT. After six months in a chair, Jennie starting walking again. She still does her exercises regularly to keep walking.
Hi, I’m Jennie. To help find a cure for my daughter and others with FSH, I hope this chapter will be a place to share, learn, and grow.
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