There is great power in community. When we come together, each bringing our unique strengths, we inspire each other to go farther and reach higher than we can when we go it alone. Led by volunteers and supported by FSHD Society staff, the Chapter Program is our greatest opportunity to fund more research, connect more patients, and advance more progress.
Don’t see a chapter in your area? Learn more about starting one.
"I became involved with the chapter program because I wanted to be an active participant in the fight to find a cure, not just a spectator."
"My husband and I got involved in the FSHDS Chapter Program so that we could meet others who were like us - experiencing the effects of a complicated disease. We wanted to hear real life situations, what’s helpful and what’s not. We wanted to find ways to be helpful in raising awareness of a disease few have heard of."
Shawn J. Welch
"My journey with the FSHD Society started about 27 years ago. I was a young man about to get married, and I was scared. I was told some years earlier that I had this horrible disease that would eat up my body, and I would probably die in my sleep. I was told to live my life while I can, that there was no cure, and that I had something they had never seen before… If it wasn’t for the FSHD Society, I truly believe I would not be the person I am today: I’ve had a full career; I have a loving wife, a beautiful son, and a certain type of light that shines out from me, given to me by a beautiful woman who had a spark in her eyes and fire in her soul.”