Hey Everyone! On July 19th, I will be bartending at McGreevys in Boston, to raise money for the FSH Society! If you are unable to attend the event, feel free to donate here! Living with FSHD is HARD, but knowing that researchers are making so much progress in finding a treatment or even a cure, makes me hopeful!
The money I'm raising 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.
The FSH Society is a research-focused patient organization that has catalyzed the global research community. We have funded every major advancement that has propelled us into the era of treatment discovery and development to end the pain, disability and suffering caused by FSH Muscular Dystrophy (FSHD). The FSH Society has transformed the landscape for FSHD research, and is the world’s leading patient advocacy organization committed to making sure that no one faces this disease alone.
Our Vision: A world free of the suffering caused by FSH Muscular Dystrophy (FSHD)
Our Mission: Find treatments and a cure for FSHD while empowering our families
- Accelerate the development of treatments and a cure for FSHD
- Increase, engage, and empower our stakeholders
- Aggressively leverage and expand resources to support our Mission
Our Core Values: Research | Community | Urgency
Please visit the FSH Society website (fshsociety.org) to learn more about FSHD, ways to get involved, and everything that is happening!
Thank you for your support! - Lexi