North Carolina Chapter

Thank you for visiting the North Carolina Chapter of the FSHD Society which officially launched in October 2018. 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.

Don’t forget to follow us on FACEBOOK!

Join Us for Our Next Chapter Meeting on Saturday, November 9th

This next chapter meeting will be discussing Health Insurance, the North Carolina Chapter’s 2019 Walk & Roll to Cure FSHD, next year’s agenda for the chapter, Mental Health resources, and a discussion on mental health with FSHD. Please RSVP HERE!

Walk & Roll

Our second annual Walk & Roll to Cure FSHD will take place on Saturday, Oct. 5th, 2019 at North Carolina State University – Talley Student Union! JOIN US! You can register to participate or support the event by making a donation HERE!

Last year, we exceeded our fundraising goals by raising over $35,000 through our inaugural Walk & Roll to Cure FSHD. A million THANK YOU’s to everyone who was involved with this fabulous event!

To reach us, please email: