http://www.raredr.com/news/jar-of-hope-duchenne-awareness-grand-canyon
A Grand Effort: JAR of Hope Founder Raises Duchenne Awareness from the Grand Canyon

Mathew Shanley



“This is the difference between me and everybody else,” Jim Raffone said as he walked into the woods at New Jersey’s Manasquan Reservoir, as he dragged a tire attached to his belt behind him. “Everybody else is thinking about what’s stopping them. I can’t think about anything besides my son.”

Raffone, the founder and CEO of JAR of Hope, is training for the 2017 Grand to Grand Ultra, a 170-mile footrace that begins on the north rim of the Grand Canyon in Arizona and finishes on the summit of the Grand Staircase in Utah. He’ll travel through deserts with nothing but his team and the contents of his backpack, and he’ll do it to raise awareness for Duchenne muscular dystrophy (DMD); the progressive degenerative disease that his son James was diagnosed with in 2013.

DMD is a condition caused by a mutation in the dystrophin gene. It is a debilitating disease that mostly affects adolescent and preteen males, and leads to the progressive decay of muscle tissue. These patients will never have the upper body strength to complete a proper pushup, and that was the inspiration behind Raffone’s advocacy mission; if his son will never be able to properly and consistently exercise, he will do it for him.

JAR of Hope was founded less than a year after James’ diagnosis, and started with a simple pushup campaign. Raffone visited schools and gyms, asking for people to join him as he completed a single push-up. After many completed the task with ease, he informed his new acquaintances that patients with DMD would never be able to do the same.

Raffone knows that his upcoming competition will raise the level of awareness for DMD that he so urgently seeks even more.

“When you tell somebody, ‘I’m going run 170 miles in the desert for 7 days, and the only things that I have are what I can carry on my back,’ it raises eyebrows,” Raffone said. “It’s very difficult for people to understand the desperation I have to save my son’s life.”

This is Raffone’s second attempt at the Grand to Grand Ultra. In 2016, he succumbed to the altitude and was assisted on his early exit. While the experience and year of training would normally prove to be beneficial for this type of event, the father of 3 tore the anterior cruciate ligament (ACL) in his left knee 2 months ago while training.

He’ll run despite it.

“It’s such a bigger thing than just my son,” stressed Raffone. “I’ve gotten to meet an environment filled with other kids and my heart goes out to their families. I want to help them and their children, as well.”

The Grand to Grand Ultra will begin on Sunday, September 24th and extends until Saturday, September 30th and Raffone’s motivation this year is simple: James will travel to wait for him at the finish line.

To learn more about JAR of Hope, visit the organization’s website: jarofhope.org

For more patient stories from within the rare disease community, follow Rare Disease Report on Facebook and Twitter.
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