My Nonprofit Reviews

Out of the blue, when as a teenager the sky was her only limit, our daughter got diagnosed with FSHD. It was a shock to learn that this progressive chronic deterioration was something she could not out run ; nor would it allow her to stay the competitive athletic girl she was, whispering all day long with horses. She was facing this feeling to be helpless in her own body.

Joining the FSHD Society provided us with both information and resource, and great support among its global community. The way we discussed groundbreaking research lifted our spirits and stimulated our hope for the future. A large door opened to a new community and a new purpose. Dealing alone with this disease can give a feeling of abandon and loneliness, especially when your teenager wants to keep it confidential. Having a community to share the experiences makes a world of difference.  Meeting people who went trough similar yet different challenges and working towards a future with hope convinces us that future can still be bright .
After digesting fear, rebellion and frustration, our daughter decided she could no longer feel sorry about herself, but had to cope, stand up, be involved and accomplish a mission of spreading hope. Thank you FSHD society for your very personalized contact ;-)