A funny, sad thing happened on the way to the movies. Three longtime friends in Sun Valley, Sherry and Dale Jones and Theo Gund, discovered a remarkable and ultimately life-changing coincidence.
The tale begins with a conversation Gund had with the Joneses' daughter, Lauren Mclaughlin Brinker. Her nephew, Cooper, 6, had recently been diagnosed with Duchenne muscular dystrophy, the most common fatal genetic disorder to affect children worldwide.
"I'd never heard of this disease," Gund said. "It was just words. I was still in mourning (her son Greg Gund died in a plane crash in 2005). Still am."
Not long after that conversation, Gund learned that a memorial award named for her son and funded by the George Gund Foundation at the Cleveland International Film Festival was awarded to a documentary called "Darius Goes West: The Roll of His Life."
The movie is about 15-year-old Darius Weems of Athens, Ga., who was taken on a journey out West by a group of his college-age friends. Weems and his brother were both born with Duchenne. His brother succumbed to the disease at age 19. Several years ago Weems, too, lost use of the muscles in his legs and became wheelchair-bound.
Duchenne is the most common and most severe form of muscular dystrophy. It has a 100 percent fatality rate, with most children dying in their late teens or early 20s. Approximately one in 3,500 boys is born with Duchenne. There is no warning before the affected baby is born.
Gund was stunned to realize the movie that won the Greg Gund Standing Up Award was about something she'd only just heard about in relation to her friends, the Joneses and their grandson.
"I received the DVD of the movie, watched it," Gund said. "Then I picked up the phone and called Lauren. She and I wept, and we went from there. We're going to be involved firstly in finding a cure."
They also decided to show the movie in Sun Valley. On Saturday, Aug. 18, at 6 p.m., "Darius Goes West" will be screened at the Sun Valley Opera House. A discussion will follow at 7:30 p.m.
"I think it's a great community experience whose purpose is to raise awareness," Gund said.
The gala event at 8 p.m. will include the presence of the filmmaker Logan Smalley, Cooper Jones and his parents, Scott and Cathy. Cocktails will be served at the Sun Valley Resort duck pond and a Sun Valley season ski pass will be raffled off. Tickets to the gala cost $100 and are available at Chapter One Bookstore in Ketchum. One hundred percent of the donation will go to Charley's Fund, a nonprofit organization whose mission is to fund research of Duchenne.
"We refer to this as the orphan disease because it's less known than cancer, ALS and leukemia," Sherry Jones said. "We think the cure is right around the corner. It's close."
"Families all over the U.S. are deeply committed," Dale Jones said. "The kid who made this is a genius."
The remarkable story of Darius Weems and his buddy road trip began at a camp for disabled kids called Project REACH. Logan Smalley was a counselor there and met Weems. At the time, he was a fully mobile 5-year-old. The two kept in close touch, going to movies, playing video games and watching TV together. In fact, it was while watching MTV's automotive makeover show, "Pimp My Ride," that Smalley wondered whether the show would spruce up Darius' wheelchair. There was a caveat, however. The show didn't look at any possible entrants unless they were in California.
In the summer of 2005, the crew rented a wheelchair-accessible RV and took Weems, who had never been outside of Georgia, on the adventure of a lifetime. Most of the other crew members who accompanied Smalley and Weems also volunteered at Project REACH.
The ultimate goal of their 7,000-mile cross-country journey was to reach Los Angeles and convince "Pimp My Ride" that Weems' wheelchair should be tricked out just like the cars on his favorite show. Along the way, they evaluated wheelchair accessibility in America, celebrated the 15th anniversary of the Americans With Disabilities Act and raised awareness of Duchenne.
The budget for the "Darius Goes West" trip and film, including all camera and sound equipment, was raised primarily by selling movie credits to individuals via the Web site, placing piggy banks throughout Athens, Ga., selling barbecue and hawking hot dogs. They also received grants from United Cerebral Palsy, Children's Wish Foundation International, Emmanuel Episcopal Church and the Turner Foundation.
The movie has won 20 awards at the 24 festivals it has entered to date, including audience choice awards at Santa Barbara, Dallas, Omaha, Berkshire, Palm Beach and Atlanta film festivals.
The film will also be shown again at Sun Valley Opera House at 4 p.m. Sunday, Aug. 19, with free popcorn and refreshments, sponsored by Charley's Fund and Theo Gund. It costs $10 a ticket, which goes to Charley's Fund.