Welcome to the St. Louis Chapter!
Thank you for visiting the St. Louis Chapter of the FSHD Society which officially launched in November 2018. 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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The Walk & Roll
The 2019 Walk & Roll to Cure FSHD, our inaugural fundraiser, was a HUGE success! We had some big goals for this year, because we want a cure NOW! THANK YOU to all who joined us in this awesome event to raise awareness, build our community, and most importantly, fund the CURE for FSHD!
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To get in touch with us, please email Chapter Director Marsha Sverdrup at:
StLouisChapter@fshdsociety.org
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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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MARSHA SVERDRUP
Chapter Director
My family and I were introduced to the “world of FSH” almost eight years ago when my oldest daughter, 10 years old at the time, was diagnosed with the infantile form. Since we had no family history of this disease we were, needless to say, shocked by this diagnosis. As a parent I wanted to do whatever I could for my daughter so we joined the FSHD Society where we found a community of people that provided us with both information and support. I appreciate the opportunity to be able to give back to this community as the Director of the St Louis Chapter.
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