Welcome to our NYC Marathon Fundraising site
This is my son Jake Levin. Jake is a 4 year old triplet, and is energetic, active, and inexhaustible.
Several months ago, we learned that Jake was born with a disease called Duchenne Muscular Dystrophy. This is about the worst thing you can ever experience as parents, and we are now committed to finding treatments and a cure in time to help Jake.
We have put together a team to run the New York City Marathon on Nov 4, 2007. All the money we raise will go directly to Project Catalyst which is at the forefront of developing new drugs to treat this horrible disease.
To learn more about our fight, please visit our blog
About the Disease
Boys with Duchenne are typically diagnosed before the age of five. Their muscles swell and joints become restricted. They are easily fatigued and have difficulty keeping up with others their age. Most Duchenne boys need a wheelchair between the ages of 10 and 12. The simplest of tasks, such as holding a fork or turning over in bed, becomes very difficult. In the later stages, heart and breathing muscles begin to fail. Historically, most boys with Duchenne have not survived their teens. There is no cure…and it can happen in any family.
The Need for Research
Promising Duchenne research is being stalled due to lack of funding and bureaucracy. For the families of Duchenne boys, this is a tragedy.
As other disease groups fought for federal funding, there was no muscular dystrophy organization fighting for those dollars. As a direct result, our boys are not much better off than when they discovered the Duchenne gene. Compare this with Cystic Fibrosis, where a committed organization that was committed to research and used federal funding has doubled the life expectancy of their kids. Life expectancy for Duchenne has barely improved.
Reason for Optimisim
Gene therapy and stem cell research have made huge advances in just the last year. These actual cures could be any where from 5-20 years away. There is however, a new class of drugs and therapies which will not cure the disease, but will fool the body into producing dystrophin or will upregulate other proteins that could take the place of dystophin, while at the same time eliminate some of the damage that occurs in the muscle cells of Duchenne boys. Although boys treated with these drugs will never be world class athletes, there is hope that they could lead a relatively normal life, much like diabetics.
These drugs could be in clinical trials in 2-3 years…if there is adequate funding NOW!
I hope you’ll consider supporting our efforts. You can either donate on-line, or send a check made out to The Foundation for Their Sake to:
The Foundation for Their Sake
5 Cherry Hills Farm Ct
Englewood, CO 80113
Thanks for your support!
The Levin Family!