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).
I have been hoping for as long as I can remember that the researchers would find a cure for FSHD. I have battled this disease all of my adult life. when I was a child I saw my grandfather live life in a wheelchair and now it saddens me about all the difficulties my Mom had to go through. I was unable to understand, until now, as my abilities to do simple things - like when a grandchild holds their hands up for you to pick them up and your unable to lift them - or you can't go to the store because wind is blowing and you don't want to fall. It is so embarrassing when someone you don't know has to help you back to your feet. Or you don't want to go out to dinner with the family because you get stuck in the chair and can't get to a standing position. These are a few of the things that get taken away from you if you have FSHD.
Well, right now is a very exciting time for myself and others with FSHD. In the last 5 years researchers have accomplished so much they are knocking on the door of a cure!
* If we could create a few more dollars from donations there will be a cure for the children and grandchildren of the parents with FSHD.
So I ask you to please help with whatever you can.
The latest in therapy development: fshsociety.org/2018/03/fsh-society-drives-fshd-therapy-development
*** More about FSHD and the FSH Society (below) ***
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! - Jeff