Edit in profile section

Welcome to My Page!!

Allen Carney

Allen Carney

I'm raising money to support programs and research that will directly impact patients and their families living with FSH Muscular Dystrophy (FSHD). You can visit the FSH Society website (fshsociety.org) to learn more about FSHD.

FSHD, is a genetic muscle disorder that leads to the weakening and wasting 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. I live with this disease 24 hours a day. There is no effective treatment or cure—but there is hope as current research has made great strides in recent months toward finding a way to stop the progression of the disease. Your donation of ANY amount will help continue this research.

The FSH Society is a research-focused patient organization that has funded every major advancement that has propelled us into the era of treatment discovery. I'm proud to be a part of their efforts by fund raising and participating in clinical research studies they are funding. I'm going to Johns Hopkins in Baltimore again in July to finish another study I've been participating in.

Thank you for your love and support! - Allen


Donating muscle tissue in 2017 with Dr Kathryn Wagner at Johns Hopkins

The family supporting me at a "walk-a-thon"


raised of $1,000 goal

Recent Donations

Be the first to donate!