Please click here to order your copy of Worth the Ride: My Journey with Duchenne Muscular Dystrophy. All proceeds go to Parent Project Muscular Dystrophy (PPMD)

Saturday, November 22, 2008

To the Summit

We all want to see a cure for muscular dystrophy, but it's important that those of us affected by the disease, patients and families alike, don't lose sight of the fact that cure or no cure, there is still a lot of life to be lived.

That's why I decided to participate on a panel of college students and graduates during a session today at a "Muscle Summit" convened by the local chapter of the Muscular Dystrophy Association (MDA). The goal was to show parents that higher education -- and employment -- are possible even with muscular dystrophy. My message was that the university setting offers a microcosm of the world, allowing many students with disabilities their first chance to experience things like independent living, employment, and social activities. I know I wouldn't be the same person had I not gone to college.

Admittedly, I haven't been involved with MDA much since I was a child, when I served as a poster child for the local chapter of the organization, attended summer camp, and volunteered at the annual Jerry Lewis MDA Telethon. As I grew older, I (and my friends with DMD) concluded that MDA was not focusing enough on the needs of the young adult/adult population.

But a few years ago, I returned to the MDA-sponsored clinic at the hospital. Meanwhile, the local chapter has made an effort to reach out to adults like me. I've been receptive because I believe that if you're not willing to be part of the solution, you may be part of the problem.

So today was a first step for me. I think it went well. If asked to participate in next year's Muscle Summit, I will gladly do so.