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.
Volunteer Spotlight: Frank Hanley
Hear from your local chapter co-Director, Frank Hanley, on his journey with FSHD, how the South Carolina Chapter got started, and his advice for others living with FSHD.
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South Carolina Walk & Roll to Cure FSHD - Fall 2021!
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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
May
10
Wellness Hour (Virtual Meeting) – Personal transportation
This is our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). Last month we all enjoyed a very informative and lively discussion about travel, dealing with air lines, hotels, and damaged power wheelchairs. By popular demand, we will continue on this topic and expand it to travel for people who are still walking as well as to local…
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FSHD Society Radio with Lori Brant, personal coach
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Lori Brant Join host Tim Hollenback on YouTube on the 2nd Tuesday of every month. Call Tim at 414-375-2561 to share your thoughts, or post questions and comments in the YouTube comments section. You can also watch the recording on Facebook or access the podcast on most any streaming channel. "Our guest this month is Lori Brant, a life coach who lives with FSH muscular dystrophy.…
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Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
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Frank Hanley & Sam Miller
Chapter co-Directors
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. 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 feels strongly about the need to share treatment information, personal experiences, support and encouragement.
Sam lives in Travelers Rest SC with wife, Mindy and Cat, Luna. He was diagnosed in February 2020. He says: "My first sign was my bicep wasting away, and as a man that was hard. Coming to terms and acceptance of who you are now vs. who you once were physically is hard. But I have a beautiful wife and a great family/support structure behind me. I am not alone."
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