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.
Did you participate? You can still earn some great rewards. The deadline for prizes is September 25th. Have some fun pictures or video to share? Add them to our google folder HERE
If you haven't had a chance to chip in, it's not too late to help us reach our goal.
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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
Oct
1
Webinar: COVID-19 Response Survey report
1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT. Leann Lewis, MSGC Katy Eichinger, DPT This past spring, the FSHD Society and FSHD UK distributed a survey from the University of Rochester to assess how the neuromuscular patient community was responding to the social distancing policies imposed by the COVID-19 pandemic. We are so grateful to the hundreds of you who responded. The key investigators, Leann Lewis and Katy Eichinger, will present their findings…
Find out more »Dec
2
FSHD Society Radio
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. During the hour-long program, you'll get to meet fascinating guests discussing a wide range of topics of interest to our community. Mark your calendar. Invite your friends to a listening party and chat with fellow Facebook listeners in the comments section. Call Tim with your questions…
Find out more »
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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