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Two years ago, WW featured the documentary Darius Goes West in its Longbaugh Film Festival (see "Roll Film," WW, March 28, 2007). This week, the movie's cast and crew return for two Portland screenings as part of a fund-raising effort to fight the disease attacking the film's teenage subject.
The 2007 documentary chronicles then-15-year-old Darius Weems' journey west from his native Georgia with a film crew toward their ultimate destination of Los Angeles. There, they hope MTV's Pimp My Ride will customize Weems' wheelchair.
Since the movie captured awards at the Solstice and AFI International film festivals two years ago, there have been medical advances in Duchenne muscular dystrophy research.
On Jan. 21, Oregon biopharmaceutical company AVI BioPharma reported the completion of clinical trials testing AVI-4658, a drug that showed promising results in producing dystrophin in certain DMD patients, says AVI BioPharma CEO Les Hudson.
Dystrophin, a protein allowing muscles to develop and remain intact, is absent in those with DMD. The disease weakens and eventually fatally breaks down all muscles, including the heart and lungs, most often by the time patients reach their 20s.
Researchers are trying to create such proteins through a process Hudson calls "alternative splicing," which allows them to produce different types of protein—in this case, dystrophin—from the same gene.
The genetic error inhibiting some Duchenne patients' ability to produce dystrophin was reversed by injecting AVI-4658 into one foot of patients with Duchenne's while injecting a placebo into the other.
The drug "is very specific, and will…only treat about one-third [of DMD patients]," Hudson says, adding that despite this, the drug is a significant advance in the fight against the degenerative disease.
"It's a very promising—and a very novel—therapeutic approach," says Dr. Edward Cupler, head of the neuromuscular research center at Oregon Health Science University.
Meanwhile, the new film tour aims to sell 1 million DVDs of the documentary by Darius Weems' 20th birthday, Sept. 27.
Of the DVD's $20 price, $17 will go toward research for Duchenne muscular dystrophy, which affects an estimated 1 in 3,500 newborn males.
The effort to sell 1 million DVDs, which tour organizers are calling the "One Year…One Million DVDs" campaign, was launched in September, when Darius Weems turned 19—the age his older brother, Mario, was when DMD killed him.
"Darius decided he wanted to spend his 19th year doing something positive and celebrating life," says Barbara Smalley, manager of the Darius Goes West Foundation and the mother of the film's director, Logan Smalley.
She says the entire cast and crew, including Weems—who has lost some flexibility in his hands but remains able to play video games and write with effort—will attend both Portland screenings and answer questions afterward.
Portland, says Barbara Smalley, is "one of their favorite places on the planet."
screens at Portland State University's Smith Memorial Student Union, Room 228, 1825 SW Broadway, 6:30 pm, Thursday, Feb. 19. Free. The film also screens at Hollywood Theatre, 4122 NE Sandy Blvd. 1 pm Saturday, Feb. 21. $5 for adults, $2 for children and students.
WWeek 2015