Welcome to the St. Louis Chapter!
Thank you for visiting the St. Louis Chapter of the FSHD Society! 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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St. Louis Walk & Roll to Cure FSHD a Success!
Our 2020 Virtual Walk & Roll was fantastic, thanks to all of you! Our chapter overcame all the obstacles 2020 threw at us. You invited your family and friends and they showed up!
On Saturday, September 12, 2020 we joined with Chapters nationwide to celebrate in a 4-hour Facebook livestream event. It was awesome.
Together we are celebrating more than a half million raised nationwide!
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To get in touch with us, please email Chapter Director Marsha Sverdrup at:
StLouisChapter@fshdsociety.org
Don’t forget to follow us on FACEBOOK
Want to make sure you never miss out on happenings with the local chapter and the FSHD Society? Become a member of our community today by signing up with the form to the right.
Upcoming Events
Dec
1
FSHD Society Radiothon
#GivingTuesday is a global day of giving fueled by the power of social media and collaboration. Join us today for our second annual GivingTuesday Radiothon to raise funds and worldwide awareness of Facioscapulohumeral muscular dystrophy (FSHD). Streamed over Facebook Live, our intrepid host Tim Hollenback will conduct nonstop interviews from 8:00 a.m. to 10:00 p.m. Central Time with members of our community—activists, celebrities, scientists, doctors, and other people doing awesome things. Click here to view the full guest line-up and…
Find out more »FSHD Society Radio with civil rights lawyer Ed Barocas
Tim Hollenback, FSHD Radio host 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live on the first Wednesday evening every month. Our guest tonight is Eddie Barocas, an extraordinary champion for underdogs, who until recently served as Legal Director of the American Civil Liberties Union of New Jersey. You can read more about him on our blog. He will talk about his amazing life and how FSHD…
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Webinar: COVID-19 Update
3:00 pm ET | 2:00 pm CT | 1:00 pm MT | 12:00 pm PT. Last spring, shortly after states began locking down, Drs. Ghinwa Dumyati and Rabi Tawil from the University of Rochester presented a webinar on the COVID-19 pandemic. In the eight months since, researchers around the world have worked at a breakneck pace to understand how the virus spreads, how it affects patients, how to treat it, and ultimately how to prevent it through a vaccine. With…
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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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