It's a simple, four letter word with a powerful message. Growing up, I witnessed my mother, 2 aunts and multiple cousins receive a diagnosis of Muscular Dystrophy. Little was known about the disease in the 70's and 80's when they were diagnosed. But yet, despite the uncertainty of fighting a poorly understood disease I witnessed the hope and determination exhibited by all of my family members. You could almost say hope and determination was our family motto. Hope that advancements in treatment would come. Hope that one day a cure would be found. Daily, they showed determination in striving to live as normal a life as possible. Over time, things became more difficult. Simple things we all take for granted like the ability to get in and out of cars, climb stairs and shower all became tasks that needed planning and modifications. But yet that determination was still there. To this day, my mother is still determined to do as many things as possible. She may require a wheelchair and assistance but she is going to live her life!
Over the next two months I am going to run. I am going to run because I enjoy it. But more importantly, I am going to run for those that can't. I will run for those who can no longer do the things they love. I will run for those that hope that no one will ever suffer from this disease again.
With the help of family and friends I am going to tackle two 100 mile races in the next 8 weeks. The first, The Pistol (lifewideopen.org/the-pistol-ultra-run), will be run near Knoxville Tennessee surrounded by family and friends. For the second, I will travel out to the Salt Flats of Utah and run the Salt Flats Endurance Run solo (saltflatsenduranceruns.com).
My hope is that by running I can continue to bring hope (and maybe a little bit of inspiration) to those affected by this nasty disease. They will never truly know how much inspiration they have provided for me. Hopefully I can return some of this inspiration and determination back to them. In the end, Hope, Determination (and science) will be what wins the day fighting this disease.
Since I am running two 100 mile races my goal is to raise $2000.
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).
Facioscapulohumeral muscular dystrophy, or FSHD, is a genetic disorder that leads to the weakening of skeletal muscles. It affects the face, shoulders and arms and can often appear by age 20. 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.
Please visit the FSHD Society website (fshsociety.org) to learn more about FSHD, ways to get involved, and everything that is happening!
Thank you for your support! - Dan