March 20th, 2009
11:11 AM ET

Darius goes West

By Caitlin Hagan
CNN Medical Associate Producer

Darius Weems wants you to know about Duchenne Muscular Dystrophy (DMD). It's the number one genetic killer of children worldwide and it's a disease that, as of now, has no known cure. It's also a disease most people have never heard of, something that Darius, who has DMD, and his crew of best friends, are working to change.

According to the National Institutes of Health, roughly one of every 3,600 male infants is born with a defective gene for dystrophin, a protein normally found in the body's muscles. It's that lack of dystrophin that causes DMD, a progressive muscle disorder that eventually results in a loss of muscle function. Boys are primarily affected by the disease.

Four years ago, Darius and his crew set out on a cross-country journey to raise awareness of DMD. They filmed their trip and turned the footage into the award-winning independent film "Darius Goes West." Since the movie's release, the guys have traveled across the country on countless road trips, hosting screenings, and educating the public. Their mission is to find a cure for DMD. Remarkably, they have already raised more than $2 million for Duchenne research.

Recently I had the honor of watching "Darius Goes West" with Darius, who is now 19 years old, film director Logan Smalley, and producer Daniel Epting. Their passion is as tireless today as it was when they first started out four years ago. Not only do they educate their audiences about Duchenne Muscular Dystrophy but the crew also tackles the greater issue of equal rights for people who have physical disabilities. As Darius said to me while we were having lunch, he can do anything in his wheelchair that anyone else can do without one. DMD is not his obstacle: the only thing that ever stands in his way is a building or an area that is not accessible.

It is unlikely that Darius will see a cure for DMD in his lifetime. For him, the goal is to find a cure for DMD so someone else's life can be prolonged. That's why he travels, that's why he went West, and that's why he wants you to know about it.

Have you ever been inspired by someone? Had you ever heard of DMD before this?

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