Welcome to the South Carolina Chapter!
Thank you for visiting the South Carolina Chapter of the FSHD Society which officially launched in October 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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South Carolina 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 contact us directly, please email: SouthCarolinaChapter@fshdsociety.org.
Please visit our Facebook page!
Please join us! Simply fill out the form in the sidebar to become a member of the South Carolina chapter.
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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Frank Hanley
Chapter Director
Frank Hanley and wife Donna recently relocated to Myrtle Beach from Maryland. Frank was active with the Greater Philadelphia Chapter, and offered to start-up the South Carolina Chapter when he found that a local group did not exist. He feels strongly about the need to share treatment information, personal experiences, support and encouragement.
Frank suffers with FSHD and has been struggling with the disease all of his adult life. He practices martial arts as his way of fighting back. He is positive about the research being done in search of the cure.
Frank holds a Master’s Degree in Project Management. He and Donna have four children (two boys and two girls), and a grandson.
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