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FSHoutofWater 30th Birthday

Danielle Liptak

Danielle Liptak

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) like me!

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!

I was diagnosed with FSH at the age of 12. At that time it was just 3 letters that didn't mean much to me because it didn't affect my day to day life. I am turning 30 this year, I use a wheelchair and I am visibly disabled. I hate it. My worst fears all came true except the world didn't end. Instead, I adapted and I continue to adapt because that is all I can do. If the environment around my doesn't suit me I do my best to change it or again, adapt. My mind and my body aren't consistently on speaking terms but I try to focus on enjoying my life the best I can and being happy. I do still have a dream, a wish, something I always ask the universe for: a cure. With the FSH society and the donations that I raise I hope to bring that dream to a reality.

The FSH Society

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

Our Strategies:
- 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! - Danielle

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