“We have not cured Duchenne Muscular Dystrophy…yet. But, because of you, we are one step closer.” -Jim Raffone, to the students of Old Bridge High School, December 19, 2017
By JOHN J. BURO
OLD BRIDGE -For one day during the start of this winter, the sun shined and radiated through the gymnasium doors of Old Bridge High School. Inside, Raffone continued his quest to eradicate DMD. It was just another day for him since learning of son Jamesy’s diagnosis in September 2013.
What was different, however, had more to do with who was there with him.
As class after class rolled in -eight in all, totaling more than 2,000 sophomores, juniors and seniors- Raffone reiterated the importance of this gathering. Two weeks earlier, he had introduced these classes to Duchenne; now, it was time to complete the two-pronged process.
The obligatory set of 10 push-ups. And, the equally obligatory fundraising effort which, on this day, topped $4,500.
During one morning session, Raffone was joined by two special guests. The first was Owen Henry, the town’s 58 year-old mayor who had attended OBHS during the height of the Disco Era, and Carlo Castronovo, the proprietor of Giusseppe’s Pizza & Fine Italian Food, who was honored by JAR of Hope for his continued support, and recognized for completing the torturous 170-mile G2G back in September.
Raffone’s latest incarnation of 79-in-79 is to reach as many schools in as many weeks; this was already his third stop on this circuit. And, as there are only 17 such facilities within the township, he will ultimately be taking his show -his story- on the road. The intention to go cross-country is just the latest twist to increase awareness and raise monies for the University of Minnesota to pursue its multi-phase research.
For the town of Old Bridge, population 65,000+, that road has been filled with, in Mayor Henry’s words, “our fair share of tragedies -from the Pathmark shooting (in 2012) to house fires.
“It never gets easier.”
Henry admitted as much when he first read a proclamation to his constituents designating this day as Duchenne Muscular Dystrophy Day. “I didn’t even know (DMD) had existed until meeting Carlo at the restaurant,” he recalled. “It’s important that we’ve become educated about this.”
For Raffone’s part, he was quick to remind the groups of 200-300 students to “seize the opportunity, and to go at life as if it’s your last day.”
The hope for a long and healthy life is never lost on him.
Just reaching one child with this message is daunting enough. Raffone, a father of three, understands more than most that speaking from the heart is the best way to go. While many in the under-18 crowd will inevitably bypass the true meaning of his visit, Rich Torok -one of the school’s physical education instructors- confirmed that at least two students, who remained anonymous, already knew first-hand what was Raffone was throwing down.
“(Each of them) was put in (Jim’s) shoes,” Torok recalled. “Particularly, when the doctor told Jim and his wife there was nothing that could be done and ‘to just go home and love your son’.”
While that was the impetus to push forward in the first place, it will take the participation of every neighboring school to do its thing. And, maybe -just, maybe- JAR’s rallying cry of ‘Hands on the floor, Duchenne no more’ will never be uttered again.