Roll with Murph!
Hello family and friends!
I’m reaching out to you today to share information about FSH Muscular Dystrophy and to ask you to join my team, “Roll with Murph!”, to raise money to fight this terrible disease!
FSH is the reason I am in a wheelchair, as is my sister Mary Ann. Five of nine children in my family have been diagnosed with this disease. Facioscapulohumeral muscular dystrophy leads to the weakening of skeletal muscles. It is passed down through generations of families affecting roughly 50% of all of their children. It manifests itself differently in every individual. Some might not be able to drink through a straw while others are wheelchair bound, but over 70 percent of patients experience debilitating pain and fatigue. There is no effective treatment or cure—but there is hope.
Some of you might remember the Jerry Lewis Labor Day telethons which began back in 1966 and ran for over 50 years. During that time, millions of dollars were raised for research, but a cure remained elusive. I’m happy to say that finally there is good news coming in the form of new gene therapies which show great promise. The goal of the FSH Society is to fund and find a cure for this disease within the next five years. This is an aggressive goal but one that is possible with your help.
Here is how you can help. One, join me at the 2019 Walk & Roll to cure FSHD on Saturday, September 14th, at the Coffman Park Pavilion in Dublin, Ohio! It’s an easy 5K run, walk or stroll. Registration opens at 8am and the walk begins at 9am. Two, I know your schedules are tight so if you can’t join us in person your donation will go a long way towards helping me, my family, and all the families who are affected by this debilitating disease.
Spread the word! The FSH Society has an excellent rating from Charity Navigator so you can be confident your money is getting to the right people. And, of course, your donation is tax deductible!
Thank you for your help!
The Murphy family, present and future!