The FSH Society has become near and dear to my heart. Both our son, Bill, and my husband, Bob were diagnosed with FSH muscular dystrophy late in 2017. The news was devastating. There was only one thing to do - get to work! Since then I have started the Columbus Chapter of the FSH Society, held a successful Walk & Roll event last year by raising over $100,000 as we were joined by 126 participants and have actively raised awareness of this rare disease.
The gene causing FSHD has been identified and a CURE IS IN THE WORKS! But it takes money to fund what it takes to deliver that cure safely.
The money I'm raising by participating in this Walk & Roll is supporting programs and funding 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. There is no effective treatment or cure—but it is coming and I'm committed to making sure nothing stands in the way of the delivery of the cure to all who suffer.
Please visit the FSH Society website (fshsociety.org) to learn more about FSHD and ways to get involved. There is a great deal of excitement. Let's keep it going!
Thank you for your support! -