YPTC PARTNER RACES -- SLOWLY -- FOR A CURE

FOR DUCHENNE MUSCULAR DYSTROPHY

 

Jen-Duchenne1.jpgIn 1999, YPTC Managing Partner Jen Alleva learned that the son of her best friend had been diagnosed with Duchenne muscular dystrophy. Like some 20,000 other boys diagnosed each year with what is the most common fatal genetic childhood disorder, Michael James faces a challenging prognosis. Although there are medical treatments that may help slow its progression, there is currently no cure for Duchenne. Young men with Duchenne typically live only into their late twenties. And because the federal government considers Duchenne a rare disorder, private funding is incredibly necessary to leverage research dollars in hopes of finding a cure.

Alleva’s friend introduced her to Parent Project Muscular Dystrophy, a national nonprofit based in New Jersey that raises funds for research and advocacy in the fight against Duchenne. This grassroots organization, founded by a woman who saw two sons die from the disorder, conducts many fundraising ventures including a series of half- and full-marathons all across the U.S. called Run For Our Sons. Since 2005, more than 400 runners in these races have raised more than $2.5 million.

While many people discover Run For Our Sons while looking for running opportunities, Alleva found the event while looking for a way to help. “I’m not a runner,” she admits, proudly beaming beneath the Run For Our Sons baseball cap memento from her most recent half-marathon. “A friend of mine was in the race and I thought, ‘If she can do it, I can do it.’ And I wanted to do something to help.”

So every January since 2006, Alleva and friends recruited into the cause converge on Disney World as Team Michael James. The run is one of two scheduled that weekend by the theme park for Marathon Weekend where tens of thousands of runners race for a variety of charities. Run For Our Sons is a relatively small component of the weekend with only 100 runners competing in the half-marathon. But Team Michael James, with 10 runners, prides itself on being the loudest and most enthusiastic. Their tactics seem to be working: they’ve raised over $40,000 in their first five years.

Alleva starts training for Marathon Weekend over the Christmas holidays, but she’s the first to admit that she won’t break any records. “I train, but I’m very, very, very slow. You can find my time on the Internet: don’t look.”

She has realistic expectations of her talents as a runner. “They give you three-and-a-half hours to finish the race or else the Disney World crews come up after you and ask you to leave. At least I haven’t been chased off the course by the Mickey Patrol yet!”

The run and the sense of giving something back are their own rewards. “There’s no prize, just pride,” she says. “I do it for the cause. It’s fun and I feel like I’m doing something to help. There’s something gratifying about putting yourself out to help others.”

Today, Michael James is 15 and, for the time being, still mobile. “That’s fantastic for a kid his age, thanks to the aggressive medical treatment he’s getting,” says Alleva, who may be a slow runner but who’s not slowing down. When she’s not training for the race she’s fundraising for Parent Project Muscular Dystrophy.

“I see the struggles that Michael James and his family are going through every day, and they do it with grace and style. It’s hard to watch, but it’s heartwarming to see all the support they receive from family and friends. I’m glad that I can do my small part to help.”



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