FSHD is an equal-opportunity disease. Anyone – regardless of age, gender, race or ethnicity - can inherit or develop it. People who have FSHD must cope with continuing, unrelenting, unpredictable and never-ending losses. The most unlucky, those who are affected from birth, are deprived of many of the ordinary joys and pleasures of childhood and adolescence. But no matter at which stage of life the disease makes itself known, there is never after that any reprieve from continuing loss of physical ability, and all that entails. Every morning, people with FSHD wake up to face the reality that neither a cause for their disease nor any treatment for it has yet been found.
Insidiously and systematically, FSHD denies a person the full range of choices in life. FSHD affects the way you walk, the way you dress, the way you work, the way you wash, the way you sleep, the way you relate, the way you parent, the way you love, the way and where you live, and the way people perceive and treat you. Many people with FSHD cannot smile, hold a baby in their arms, close their eyes to sleep, run, walk on the beach, or climb stairs. Each new day brings renewed awareness of the things you may not be able to do the next day. Though FSHD has been seen as a mild and benign disorder, more than 20% of patients end up using wheelchairs. This is what life is like for tens of thousands of people affected by FSHD worldwide.
Through the FSH Society, FSHD patients have found ways to be useful to medical and clinical researchers working on their disease. The FSH Society acts as a clearinghouse for information on FSHD and on potential drugs and devices designed to alleviate its effects. It fosters communication among FSHD patients, their families and caregivers, charitable organizations, government agencies, industry, scientific researchers, and academic institutions. It solicits grants and contributions from individuals, foundations, the pharmaceutical industry, and others to support scientific research and development. It makes grants and awards to qualified research applicants. One of the FSH Society's key assets, its Scientific Advisory Board, is composed of international experts whose awareness of current FSHD research ensures both that new research is not duplicative but complementary, and that it will fill gaps in existing knowledge. The FSH Society's work in education, advocacy, and training has led to increased funding for FSHD research in the United States and abroad.
Three important ways in which the Society educates about FSHD are the FSH Watch newsletter, the Society’s annual professional research meeting (held as a satellite meeting of the annual meeting of the American Society of Human Genetics), and its biennial international researcher, clinician and patient network conferences that typically attract between 100 to 200 patients and researchers from throughout the U.S. and abroad.
The FSH Society also provides peer support and answers your inquiries for information and help with research questions, advocacy advice, DNA testing, information on clinical studies and procedures, anesthesia, pain, physical therapy, and information on FSHD for your doctors, schools and families.
