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Reaching the Finish Line for Duchenne Muscular Dystrophy: An Update on the Grand to Grand Ultra

The surroundings were familiar, and the terrain—similar, but more intense than previous years. The mission was simple—finish the race. The motivation was greater than any physical adversity—bring awareness to a devastating disease that robs the lives of young children. Standing at the rim of the breathtaking Grand Canyon, Jim Raffone, accompanied by 15 other determined participants, attempted to brave the annual Grand-to-Grand Ultra. The aptly named “Redemption Team” would not be denied this year, and specifically, Jim would not be denied this year—not for a third time. The love for his son, and his commitment to fight Duchenne muscular dystrophy (DMD) would not allow him to fold for a third consecutive year. Before heading out to the desert, Jim promised his son, Jamesy, the inspiration behind JAR of Hope, that this would be the year they stand together at the summit of the Grand Canyon—at the finish line—and Jim was not one to break a promise to his son.

JAR of Hope’s first attempt at conquering the G2G came in 2016. Though mentally prepared to finish, the team had admittedly underestimated the physical demand that comes with completing what many consider to be the most difficult ultra-race in the world. Undeterred, Jim and team returned in 2017 to take a second crack at overcoming the grueling competition. However, myriad health issues, including a torn ACL, two herniated discs, and an AFib heart condition, once again prevented Jim from crossing the finish line with young Jamesy by his side. Though saddened, Jim refused to quit, even though 15-20% of all G2G participants are unable to continue each year. For Jim and JAR of Hope, this is about far more than a race.

Each young child diagnosed with DMD experiences muscle atrophy (loss), and therefore lacks the ability to complete many everyday functions we take for granted like walking, climbing stairs, and running. Events such as the G2G represent the idea that everyday people can perform great physical feats when they’re doing so for a greater purpose. “I think a lot of people see guys like us, big guys, and think we’re not going to be able to finish,” stated Joe Ippolito, who serves as Treasurer on JAR of Hope’s Board of Directors and is one of the original G2G team members. “We’re not built like marathon runners, and this is not what we regularly do, but we pushed ourselves to get it done to honor those suffering from Duchenne.” Ippolito stressed the point that bettering the G2G was more of a mental challenge than a physical one, but that the harsh terrain augmented the difficulty of finishing. “This year’s terrain was the hardest so far. This was no casual stroll through the park, that’s for sure. It was quite literally, an uphill battle.”

David Ferber, a friend of Raffone and Ippolito, is the third member of the trio who came up short on the initial 2016 race. Ferber, who also sits on JAR of Hope’s Board of Directors, completed the race last year, but would not feel fully satisfied until he saw Jim finish with the team, fulfilling a promise to his son and thousands like him. “There comes a point in this competition where your body tells you to stop, to quit, that you’ve had enough,” remarked Ferber. “However, it’s at that moment that your mind tells you to keep going that extra mile. Go that little bit extra for the Duchenne community, for Jamesy.” In September 2018, the city of Kanab, Utah provided extra incentive for Jim and the Foundation to finish the G2G when they proclaimed September 20th as Duchenne Awareness Day. Mayor Robert G. Houston of Kanab recognized the importance of intensifying DMD awareness, and displayed the integrity to make such an announcement. Jim stated that such recognition helped sustain the battle to defeat DMD, and completing the 2018 G2G tied in with this mission. “The commitment of others to defeat this disease has always fueled my ability to keep pushing on. I’ve always been honored and overwhelmed at the support of the thousands who have joined JAR of Hope on this fight to stop Duchenne once and for all.”

On September 30th, the mission was fulfilled. Jim and 13 other members of The Redemption Team, including seven first timers, culminated an incredible week-long journey at the Summit of the Grand Staircase, 171 miles beyond the point at which they started. And young Jamesy, as his dad had promised, stood by his side at the finish line. “I can’t put into words how special this moment was,” an emotional Raffone commented. “Just to know how far we came since our first year taking part in the G2G, and personally, given all the health issues I encountered last year, to see the look on my son’s face as we made it through makes the everyday fight to end Duchenne every bit worth it.”

JAR of Hope will once again participate in the G2G Ultra in 2019, with a team already dubbed as “The Return of the Phoenix.”

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