Messages Of Hope

CURE FOR DUCHENNE STILL ON LIFE SUPPORT

By JOHN J. BURO

MANALAPAN – In the end, it will be about money and science – the two requirements needed for every successful cure ever discovered. There’s no doubt that’s how one such saga, now in its fourth year, will play out.

One simply wouldn’t work without the other. Even Jeff Bezos’ $100 billion- dollar fortune would be worthless if researchers could not remedy a disease that has, to this point, baffled mankind for two centuries. Everything costs.

Whether in money. Or time.

Or, worse, in innocent lives.

While JAR of Hope’s mission to eradicate Duchenne Muscular Dystrophy originally began as an effort to save Jim Raffone’s soon-to-be nine year-old son, Jamesy, there are potentially 300,000 young boys -20,000 of which reside in the US- whose souls lie in the balance, as well. (To review, females are generally known to be carriers of the mutant dystophin gene, though in rare instances they have also been directly affected.)

This is a critical point in Jamesy’s life, for, by the age of nine, many Duchenne-afflicted children are positioned in wheelchairs, otherwise known in the DMD community as a death sentence. When wheelchairs become a matter of convenience, muscles become even less cooperative and, ultimately, shut down altogether. Happily, that wasn’t part of the conversation during his December 5 visit to the Children’s Hospital in Cincinnati. Jamesy’s lean body-mass had increased exponentially, the result of repeated ultrasound and hyperbaric oxygen therapies.

For Raffone, this was just another day in the life.

JoH’s dizzying schedule had allowed for very few respites during the calendar year. Aside from a score of earlier 5K runs, one of which was a Stadium Fitness run/walk on May 7 at FirstEnergy Park, home of the Lakewood BlueClaws, the Philadelphia Phillies’ Class A affiliate. In late August, as the season wrapped up, the BlueClaws feted JAR of Hope with a night, topped off with Raffone’s post-game push-up challenge in front of the third base dugout.

September was an unusually busy month. After Raffone had beckoned the New York State Assembly in June, legislation was approved to grant the 7th- 13th as Duchenne Awareness Week. He then completed his ‘79 in 79’ at iPlay America, before immediately hopping a plane for the Great Southwest. In Utah, the cities of Clearfield and Kaysville declared the 18th as Duchenne Muscular Dystrophy Day.

The month wrapped with The Grand-to-Grand Ultra, more commonly known as “The G2G” by the 119 brave entrants attempting the 170-mile trek around the Grand Canyon, and featured finishing times by JoH team members Carlo Castronovo and Joe Ippolito. While they were just two of the 92 overall runners to cross the tape, Raffone required medical attention during an abbreviated Stage Three cameo.

October 7 was the foundation’s night to shine, as the Forsgate Country Club opened its doors to hundreds of well-healed guests for JAR of Hope’s third annual gala. Highlights of the festivities included live entertainment by The Nerds, premium raffle baskets and silent auctions.

The November prize was the TCS NYC Marathon. With more than 20 participants running under the JoH banner, the event raised $115,000 for the non-profit, and opened the proverbial doors for first-time roadsters, such as Spencer Friedman who circumnavigated the 26.2 mile course in an impressive 5:47:26.

December featured a trip to Old Bridge High School, as the next installment of ‘79’ took form. The final tally was another $4,500 for the cause. While the first 79 segments focused on gyms, Raffone’s latest objective is to visit any school in the country willing to learn more about DMD – and be subjected to five rigorous minutes of push-ups in the process.

So, as 2017 concluded, the JoH -in its continuing quest to raise funds and awareness- prepared to double down on its previous successes. At this moment, any opportunity is worth pursuing.

The clock is ticking, seemingly faster than ever before, and the JAR of Hope still requires a $125,000 dowry at the University of Minnesota just to get the ball rolling. And, while the experimental research is a two-step process, positive results will yield valuable time.

Time that will prolong Jamesy’s life without the necessity of a wheelchair; it’s just one more baby-step in a series of baby-steps. In March, Jamesy will be celebrating his milestone birthday.

That nine is not a multiple of five -as most milestones birthdays are- is irrelevant. That he may accomplish this without being strapped into a brand spanking new portable chair is not.

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