FSHD Society Interview
Million people worldwide suffer from facioscapulohumeral muscular dystrophy. The disease has a genetic mechanism, meaning it will pass on to children. There is a 50% that children will inherit the disease. However, 35% of all cases develop FSHD spontaneously.
FSHD Society is devoted to finding a cure for facioscapulohumeral muscular dystrophy and empowering the families that suffer from it.
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March 17, 2022
FSHD Society Is On A Mission To Cure FSHD While Empowering Affected Families
#324 Great.com Talks With... FSHD Society
An estimated 1 in 8,000 individuals are affected by FSHD. FSHD is a genetic disease that leads to the weakening of skeletal muscles and muscular dystrophy. The most common symptom is loss of muscles in the face, shoulders, upper arms, legs, or core. The disease can spread to any muscle, with 20% of all individuals affected by FSHD needing a wheelchair by age 50. In today's episode, we spoke with Mark Stone, CEO of FSHD Society.
FSHD Society is a nonprofit organization that funds FSHD research and looks to find a cure for facioscapulohumeral muscular dystrophy. Mark says that mental health care is an important aspect of battling FSHD. As such, FSHD Society also empowers the families suffering from the disease. The organization's three core values are research, community, and urgency.
Transforming the landscape of FSHD research and care
FSHD Society is one of the many global research-focused patient advocacy organizations that help people suffering from the disease. The organization is made out of academic research team members that accelerate research related to facioscapulohumeral muscular dystrophy. Throughout the years, FSHD Society has made huge gains in the development and treatment of facioscapulohumeral muscular dystrophy.
Their rule has been instrumental in getting one step closer to finding a cure to end the pain, disability, and suffering endured by nearly one million people worldwide. Through clinical research, enhance positive service experiences, and looking after the community's mental health, the FSHD Society has managed to transform the landscape for FSHD research and care.
Listen to the whole interview to find out how the FSHD Society helps family members battle facioscapulohumeral muscular dystrophy. The organization also welcomes donations.
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