BENEFITING: CURE CMD
EVENT DATE: Sep 20, 2014
On Sept. 20th, 2014 my husband and I will be running/wheelchair-propelling in the Rock ‘n’ Roll Philadelphia 5k for a non-profit organization called Cure CMD, whose mission is to develop treatments, and eventually a cure for CMD.
I’m Lindsey, I’m 25 years old, my son Leonidas is 2.5 years old, and we both have a rare degenerative muscle disease called congenital muscular dystrophy (CMD).
We are missing collagen VI, and without it, our muscle cells become weaker and die almost as fast as they are replaced. If a treatment can be found, our son will never lose the ability to walk, his spine will never severely curve due to weak muscles, he will never have to get a 15 level spinal fusion, his breathing will not be affected, his body won’t develop painful and debilitating contractures--all of which has happened to me. Other people have even more severe forms of CMD, and many times it’s fatal for them.
Fortunately, there are some promising therapies by world-renowned researchers working with Cure CMD. Unfortunately, because CMD is so rare, these therapies have hit many roadblocks due to lack of funding.
Unless these drugs are funded, there is no cure, no treatments. I’ve had to live my whole life with this disease, and we are running so that Leonidas and all others who have CMD will not have to live the rest of their lives with this disease.
The Rock ‘n’ Roll Philadelphia 5k is our first step. If we meet our goal of $10,000, we will then run the following races, as long as we continue meeting our goals:
10K to raise $25,000
Half marathon to raise $50,000
Full Marathon to raise $100,000
100% of proceeds raised for Cure CMD will go directly to research for these treatments.
Please follow us on this journey. I will use what little strength I have to use my feet to propel my wheelchair forward and my husband will push me while running. With your help, we will finish these races, and provide funding so that these promising treatments can move forward.
Thank you so much for supporting us as we set out to achieve this goal, for sharing our page, and for your contributions; it all truly makes a difference!
You can go to CureCMD.org to learn more about this disease.