Local Chapters

"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."

"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.”