The money we're 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, or 870,000 people worldwide. Around 20 percent will need a wheelchair by age 50. Over 70 percent experience debilitating pain and fatigue. There is no effective treatment or cure, but there is hope. Thank you for your support!
In September of 2022 after years of misdiagnosis, Crew was genetically tested and confirmed to have FSHD. Although it is a slowly progressive form of Muscular Dystrophy, there is no cure. Crew is like every other teenage boy right now and just wants to live life to the fullest, but we as parents/friends/family, we need to plan for his future. Please join us in fighting for Crew and for his future! You can participate by just joining us in support of him to walk with us on September 24th in Grand Haven, and if you are able to donate financially to support the FSHD Society the money raised goes to clinical trials and studies to further slow the progression of this disease. The good news is there is a drug in stage 3 clinical trials that has been shown to slow progression, so hopefully with all of our help this will be available in Crew's lifetime! Please join us physically and/or financially if you can, but also in prayer for Crew and others like him. Thank you!