Ask anyone under the age of 25 who Jerry Lewis is, and chances are, you’ll get a blank stare. Then ask what they know about Duchenne Muscular Dystrophy (DMD), the most common fatal genetic disorder to affect children around the world, and again, you’re likely to encounter silence.

My goal is to change that by raising awareness of DMD via a documentary I directed this summer. Tentatively entitled Darius Goes West: The Roll of His Life, this film is designed to educate my generation about DMD. We aren’t likely to watch a three-day telethon, as we are the reality TV and Playstation/Nintendo/XBox generation who likes things to be interactive, entertaining and real.

The star of my documentary is Darius Weems, a 16-year-old high school sophomore from Athens, Georgia, whom I befriended a decade ago while volunteering at a summer camp for children with special needs. Darius lost his beloved older brother, Mario, to the same disorder five years ago.

In November of 2004, I decided there was no need for Darius’s quality of life to disintegrate along with his muscles. I recruited a crew of ten other college students and recent graduates, rented a wheelchair-accessible RV and raised $60,000 (the bulk of this budget was used to purchase high-quality camera equipment)--mostly by selling movie credits online at our website ( www.dariusgoeswest.com ) and attracting a major sponsor, Whowillcare.net. My mission was to take Darius—who had never seen mountains, never dipped his toes into an ocean and never crossed a state line—on the adventure of his life.

In July of 2005, our “band of brothers” embarked on a three-week, 7,000-mile, life-changing journey that included stops in New Orleans, Las Vegas, the Grand Canyon, San Diego, Los Angeles, San Francisco, St. Louis and Chattanooga (see “Trip Highlights”). Along the way, we held over a dozen press conferences, passed out thousands of bracelets for our sponsor, and evaluated wheelchair accessibility at major tourist attractions. At Carlsbad Caverns, we celebrated the 15th anniversary of the Americans With Disabilities Act (ADA) “down under” in the bat caves.

In Beverly Hills, we attracted the attention of Loreen Arbus (Loreen Arbus Productions), a strong advocate for people with disabilities and the donor for Whowillcare. She agreed to be interviewed for this film and has also expressed an interest in helping to produce it.

Initially, our goal was to reach Los Angeles and have Darius’s motorized wheelchair (so large, we call it the “Beast”) completely made over on MTV’s popular show, Pimp My Ride. At the last minute, they turned us down—which was a good thing, since the “Beast” bit the dust in San Francisco, and we had to resort to a back-up manual chair. When we returned to Georgia, benefactors surprised Darius with a brand new chair with all the bells and whistles: flat-screen TV, stereo system with a subwoofer, spinner rims, Playstation, voice-activated cell phone and an airbrushed scene of Darius in his chair racing a Lamborghini across the Nevada desert—and winning!

The Darius Goes West documentary will showcase hilarious and heartwarming footage from this all-male road trip. In fact, part of its charm will stem from the fact that Darius Weems is no DMD poster child. This African American teenager weighs 350 pounds. He wakes up grouchy and curses on occasion, but viewers will love his sense of humor and megawatt smile.

In addition to trip footage, the documentary will feature other families affected by this disease, as well as interviews with experts—like Harvard graduates Tracy Seckler and her physician husband Benjamin—discussing some promising new research that offers hope for treating DMD. (The Secklers have a six-year-old son, Charley, who has DMD and have established Charley’s Fund to raise money for this cutting-edge research.)

The annual Jerry Lewis telethon has grown controversial over the years--and is often protested by certain groups—for shameless tugging on the heartstrings. In contrast, my film will attempt to educate the masses about DMD by telling a story through the lens of friendship. Instead of feeling sorry for Darius because he’s terminally ill, I want our audience to share the crew’s (and Darius’s) excitement as he discovers America and comes home to discover that his hunk-of-junk wheelchair has been replaced by a wondrous machine.

By raising awareness, I also hope to raise money, and any profits from this film will be funneled directly into DMD research. Scientists believe there will be a cure for DMD in my lifetime; the challenge is finding the funds for a cure in time for Darius, Charley and thousands of other kids like him. In essence, this film could help wipe out DMD forever, and that motivates me beyond belief.

Our trip is over, and I'm now busy juggling student teaching in Athens with sifting through over 300 hours of trip footage. I will graduate from the University of Georgia in May of 2005 with a degree in Special Education. After that, I plan to: (a) attend a graduate school that will allow me to finish the Darius Goes West documentary as part of my master's thesis, or (b) take a year off to complete this important film.

I welcome your comments about this project and film and encourage you to log on to our website (www.dariusgoeswest.com) to view pictures from this life-changing (for all of us) journey, travel logs and Darius updates. While there, you can also purchase a credit in our film for as little as $10 to help with (steep) post-production costs.

Trip Highlights:

• Darius’s first glimpse of the ocean in Panama City, FL, was unforgettable. A crowd of onlookers watched in awe as Darius frolicked in the waves. This was no easy feat for our 11-member crew, who painstakingly moved planks of board across the sand to wheel Darius’s chair into the surf, then used a shower curtain from the RV to drag him back to shore.

-New Orleans rolled out the red carpet for Darius, providing complimentary lodging, meals (including breakfast at Brennan’s), and a swamp boat tour. Footage of a bead-laden Darius getting mobbed while rolling down Bourbon Street is priceless.

-In Las Vegas, Darius won $50 from a giant slot machine when I gambled on his behalf.

-In Temecula, CA, Darius soared high above California’s wine country in a wheelchair-accessible hot air balloon.

-In Los Angeles, Darius was treated to a suite and his first-ever massage at the Beverly Hilton, VIP tickets to Jay Leno, and a private tour of Wisteria Lane by “Desperate Housewife” Felicity Huffman and her husband, actor William H. Macy.

-In Windsor, Colorado, Darius had a wild west experience, when the crew was invited to have lunch at a ranch owned by a professional roper.