JAR of Hope to do push-ups for Duchenne awareness
FREEHOLD — If you are a New Jersey 101.5 listener, you are probably already familiar with JAR of Hope, as founder Jim Raffone spoke at length with Bill Spadea about his group's mission this past March. The organization now wants to spread the word about an event with a very specific purpose that will happen this upcoming weekend.
Raffone said for the 300,000 boys worldwide, 20,000 of them in the U.S., who have Duchenne muscular dystrophy, relatively ordinary physical activity can be a challenge. Those stricken include Raffone's son, Jamesy, and that is why Raffone has embarked on a 79-week tour through 79 gyms, culminating with Saturday's gathering sponsored by Max Fitness of Freehold at iPlay America.
There, 2,000 expected attendees will attempt to break the world record for the most people doing a minute's worth of push-ups simultaneously.
"Your average individual can get down and do one push-up, but boys suffering from Duchenne muscular dystrophy, where their body doesn't produce an amino acid to help them to produce muscle tissue, they'll never be strong enough to do it alone," Raffone said.
This push for push-ups is a continuation of New Jersey's inaugural Duchenne Awareness Week, from Sept. 7 through 13, backed by Assemblyman Ron Dancer.
Boys who are affected by Duchenne muscular dystrophy are born with it, but typically not diagnosed until between the ages of 4 and 6. From there, Raffone said time is of the essence: In a standard timeline, these boys are confined to wheelchairs by ages 8 to 12, they are quadriplegics by 15, and on ventilators by age 17.
There is no cure, and finding one is made even more complicated by the presence of different strands. For instance, only 120 boys in this country have the specific strand of Duchenne that Jamesy has.
"The only thing that doctors share with we parents who get the diagnosis is to 'go home and love your son. There's nothing we can do for him,'" Raffone said.
He added that some pharmaceutical companies are dipping their toes into Duchenne drug research, and there is one particular drug on the market to treat it, but right now that only helps 8 percent of the population.
Raffone hopes that those who participate on Saturday will get a chance to fully understand the severity of what his son, and so many others, are going through. He said since the demise of the annual Muscular Dystrophy Association Labor Day Telethon, starring the late Jerry Lewis, awareness has taken somewhat of a back seat — and it must be brought to the front again.
For more on Jamesy's story and how you can help, go to jarofhope.org.
Patrick Lavery produces "New Jersey's First News" and is New Jersey 101.5's morning drive breaking news reporter. Follow him on Twitter @plavery1015 or email firstname.lastname@example.org.
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