*Plans to run the New York City Marathon to support FSHD research through the FSH Society are changed to the inaugural Trenton 1/2 marathon*
In 1985, I was diagnosed with Facioscapulohumeral Dystrophy (FSH or FSHD). FSH is the most prevalent of the nine types of muscular dystrophy, affecting both adults and children. Children of FSH parents have a 50/50 chance of inheriting the disease themselves.
FSH is a genetic, degenerative disease which causes the progressive weakening and ultimate loss of skeletal muscles of the face, scapula and upper arms. There are currently no effective treatments that will reverse or halt the gradual weakening and wasting caused by FSH. However, several cutting edge research groups in the US and Netherlands have made remarkable progress in isolating the cause of FSH onset. This is the first major step in ultimately crafting treatments.
Anne and I have chosen to channel our fundraising efforts through the FSH Society (www.fshsociety.org) because it harnesses the power and insight of a patient-driven model to not only support those afflicted with the disease, as well as their families, but also to educate, advocate and fund the necessary research to ultimately find a cure for the disease.
One of the FSH Society's key missions is to provide support, knowledge and experience to help FSH patients, families and caregivers improve their quality of life, lengthen their lives, regain self esteem and a sense of control and avoid isolation. Although the physical losses continue with FSH, thanks to the efforts of the FSH Society and its support of countless patients, families, caregivers, medical professionals, researchers and volunteers, the quality of life for those with the disease continues to improve.
100% of your gift supports FSHD research.
Anne & I thank you for your generous support toward research & a cure for FSHD.