North Carolina Chapter

Thank you for visiting the North Carolina Chapter of the FSH 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.

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: