Judy Schneider of Wallingford had volunteered 25 years of her life in schools and elsewhere, booking venues, marshalling volunteers, tapping sponsors, being both spark and glue.
Last summer, her 3-year-old grandson — mild for his age, Lego-savvy, sandy-blonde Aiden — was diagnosed with Duchenne’s Muscular Dystrophy. Judy found that DMD is the most common 100 percent fatal genetic disorder in the world, affecting nearly 20,000 in the U.S. alone. She got active.
Last week she pulled off a $153,000 fundraiser double-showing of Darius Goes West, a documentary of Darius Weems’ road trip across the country attempting to get his wheelchair on MTV’s “Pimp My Ride,” all while rapping about DMD. Weems is a 15-year-old from Athens, Ga. And has DMD. The documentary, made on a shoestring budget by Logan Smalley, has won 21 film festival awards. The money raised goes to Charley’s Fund, which funds alternative DMD research such as stem cell therapy.
“We could literally see a cure in Aiden’s lifetime,” says Schneider, already planning the next fundraiser.
The clock is ticking. DMD diagnosees don’t often live through their 20s.
More Info: www.charleysfund.com, www.dariusgoeswest.com