Hi, it's Cora and Lila here. We are raising money through a Walk & Roll event to help fund research that will directly impact patients and their families living with FSH Muscular Dystrophy (FSHD).
Facioscapulohumeral muscular dystrophy, or FSHD, is a genetic disorder that leads to the weakening of skeletal muscles. It affects an estimated 1 in 8,000 individuals. It affects everyone differently, but over 70 percent of patients experience debilitating pain and fatigue.
Our sister, Naia, has this disease and is deeply affected by it in her every day life. There is no effective treatment or cure—but there is hope. We want to do everything we can to help Naia and others affected by this disease have access to better treatments that can only be found through research. We are committed to making sure that no one faces this disease alone.
Please visit the FSH Society website (fshsociety.org) to learn more about FSHD, ways to get involved, and everything that is happening!
Thank you for your support! - Cora and Lila