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The North 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.
Michael King is from Charlotte, North Carolina, and was diagnosed with FSHD in early 2024. After his diagnosis, he reached out to the FSHD Society for support and is grateful for their guidance in navigating the disease. Connecting with others in the FSHD community has become an important part of his journey and has helped him cope with the challenges of the condition.
As Chapter Director, Michael is eager to support and make a positive impact on other FSHD patients, their families, and friends. He feels fortunate for the opportunity to serve in this role and looks forward to building connections within the FSHD community.
Contact Michael directly or visit the North Carolina Facebook page.
While Michael 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.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
