'Darius Goes West' brings attention to little-known illness

Logan Smalley, now 22, first met Darius Weems 10 years ago at summer camp. Weems, he recalls, was a "rascally" 5-year-old with a "pretty good [basketball] lay-up."

Logan Smalley, now 22, first met Darius Weems 10 years ago at summer camp. Weems, he recalls, was a "rascally" 5-year-old with a "pretty good [basketball] lay-up."

But Weems, like his older brother Mario, was born with a terminal genetic disorder called Duchenne muscular dystrophy, which would eventually tax his ability to play his favorite sport. (Mario died of the disease at the age of 19.)

"Logan was there when Darius first went into the wheelchair, and he went kicking and screaming," recalls Barbara Smalley, Logan's mother. "Logan wanted to make wheelchairs cool."

Inspired by MTV's Pimp My Ride, Logan Smalley and some of his fellow camp counselors decided to take Weems, who had never left the state of Georgia, on a cross-country tour.

Their goals were threefold: raise awareness of Duchenne, help support legislation guaranteeing a living wage for professional caregivers, and give Weems the trip of a lifetime.

Strategy

Smalley wanted to create a lasting documentary film of the crew's experience in order to raise awareness of the disorder - and the need for more research - among young people.

"Logan's generation does not know who Jerry Lewis is," Barbara Smalley says, referring to the entertainer who is national chairman of the Muscular Dystrophy Association.

The documentary also would help raise funds. Anyone who contributed as little as $10 to
the effort would receive production credits; a $1,000 donation bought a co-producer credit.
But there was also an opportunity for a bigger message connected to the 15th anniversary of the Americans with Disabilities Act (ADA). Logan Smalley and Weems decided to use the trip to grade the wheelchair accessibility of popular tourist destinations.

"Considering that it was the 15th anniversary of the ADA, [the act] didn't get much coverage. Most coverage was fairly fluffy," says Jim Baker, press secretary of United Cerebral Palsy (UCP), which contributed financial and logistical support to the project after hearing about it from a trustee.

Tactics

It was UCP trustee Loreen Arbus, a TV producer, who ultimately brought in Judy Katz, founder of Katz Creative, for media relations during the second week of the trip.

"The media hadn't been paying close attention to the project," Katz says, adding that
she positioned the story as both a "buddy movie in the making" and as a grassroots test of the ADA. "I made it more about the people involved."

E-mail and links on discussion boards also played a viral role in raising awareness.

In addition, the Darius Goes West crew promoted the "Who Will Care" campaign - an initiative by a professional caregivers group and UCP in sup- port of a bill to increase caregivers' wages - by giving out bracelets. Press materials and signs on the RV also asked individuals to support legislation that would raise salaries for caregivers.

Results

Weems toured more than 12 cities, from New Orleans to Los Angeles.

Katz notes that the print media picked up the story in every market the tour visited. Smalley's efforts raised $30,000, and the crew surprised Weems with a "pimped out" wheelchair at the end of the journey. Donations also came in from the Children's Wish Foundation of Atlanta, which supplied the RV, and others.

Baker notes that the advocacy piece of the campaign sent 30,000 letters to Congress on behalf of Who Will Care. Rep. John Barrow (D-GA) also added his sponsorship to the bill.

Future

Logan is currently editing the documentary, which he hopes to show at film festivals. UCP will tweak its strategy around Who Will Care as the bill moves through Congress.

PR team: Darius Goes West HQ (Athens, GA), United Cerebral Palsy (Washington, DC), and Katz Creative (New York)
Campaign: Darius Goes West
Time frame: July to August 2005
Budget: $17,000

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