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The South Carolina chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through.
We provide support, share local resources, and keep you informed on the latest research and care. Whether you’re newly diagnosed or have been living with FSHD for years, we’re here to support you, every step of the way.
Join your local chapter and learn how we can support you on your FSHD journey.
Sam lives in Travelers Rest, South Carolina, and was diagnosed with FSHD in February 2020. His first sign was the wasting of his bicep, which was difficult for him to handle. Though it hasn’t been easy, Sam has stayed positive and focused on moving forward.
With the support of his family and the FSHD community, Sam faces each day with strength and hope. He often says, “I am not alone,” which helps him stay strong as he tackles the challenges of living with FSHD. Sam understands the importance of staying connected with others and keeping a positive outlook.
Contact Sam directly or visit the South Carolina Facebook page.
While Sam is powering the path forward, we’re always looking for passionate individuals to help with planning events, spreading the word, and working on other projects. Your involvement will make a big difference in growing the chapter and supporting those affected by FSHD.
Contact Beth Johnston, Chief of Volunteer Leadership to learn how you can make an impact and get involved.
We’re excited to pilot a new regional meeting format designed to bring more of our FSHD community together. This meeting is for the East Coast and will cover general updates and include regional breakout sessions.
