| 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
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