Increasing Awareness of Genetic Killing Disease

Other Stories
on June 8, 2009
Middle/high school students have raised over $100k for DMD research

Darius Weems, 19, is living on borrowed time. He should be spending the months he has left hanging with family and friends in Athens, GA, or playing video games (his favorite pastime). Instead, he has spent nine consecutive months on the road.

Weems is on a mission: spreading awareness of Duchenne muscular dystrophy (DMD), a disease that took his brother’s life at age 19 and will soon take his own life, too. DMD is the number one genetic killer of children in the world, and yet, many people have never heard of it, particularly young folks not familiar with Jerry Lewis and his annual Labor Day telethon.

Weems is changing all that. He’s the star of a documentary, Darius Goes West: The Roll of His Life. This film tells the story of Weems leaving home for the first time at age 15 with 11 of his best (college age) friends. Their goal: to reach Los Angeles and convince MTV’s popular show “Pimp My Ride” to customize Weems’ wheelchair. The movie has won an unprecedented 28 film festival awards. It has also struck a chord among teenagers. For this reason, Weems and his crew’s recent travels have focused on visits to middle and high schools across the country, where Weems, with his megawatt smile, is consistently treated like a rock star. “This is better than the Jonas Brothers!” remarked one sixth grader upon meeting Weems and his “band of brothers.”

In fact, two schools Weems and his crew visited this year recently decided to handwrite letters to every middle and high school in the country (that’s 50,000 schools!), encouraging them to watch the film and rally around Weems’ cause. Thanks to a sponsor, a DVD of Darius Goes West was included in every packet. Check out a short video of this inspiring letter-writing campaign and the effect Weems has on teenagers by going here:

Weems grew up in the projects and is being raised by a single mom who is also disabled. Financially, they barely scrape by. His movie has been so successful that Weems could easily be living the good life. Instead, he’s donating all of the film’s proceeds to DMD research. To date, he and his crew have raised a whopping $2 million (students who’ve watched the film have contributed over $100,000 of that sum). “Scientists are close to finding treatment or a cure for DMD,” Weems says, “I know it won’t happen in time to save me, but I want to prevent the next generation with this disease from going through what I have.”

To view a short trailer on Darius Goes West, visit

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