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A man’s incredible journey across New Zealand to help support two young boys with a rare genetic disease

Photo Credit: Duncan Crary/Duncan Crary Comm.

A man’s incredible journey across New Zealand to help support two young boys with a rare genetic disease

A man’s incredible journey across New Zealand to help support two young boys with a rare genetic disease

A New Jersey man is running across New Zealand attempting to raise $31,500 for two siblings with a rare genetic disease.

Jim Raffone, founder of the West Long Branch, New Jersey-based nonprofit JAR of Hope, will on March 2 complete a seven day race across rugged New Zealand terrain in the Alps 2 Ocean Ultra, a grueling 200-mile race through some of the country’s most breath-taking scenery including landmarks from the movies: Lord of the Rings, Hobbit and the Narnia films. 

So far Raffone has raised $16,745 for Ariel and Jacob Horton, brothers ages 11 and 9, who are diagnosed with a terminal neuromuscular condition called Duchenne muscular dystrophy (DMD). They live with their family in Boca Raton (USA).

Raffone visited with the family in Boca Raton for the first time earlier this month before flying down under. Raffone is posting amazing daily video updates on his progress on the JAR of Hope Instagram.

Raffone’s goal is to raise enough money through sponsors to purchase two power wheelchairs and a wheelchair-accessible van for the Horton family who currently need better transportation for the boys.

Ariel and Jacob Horton. Photo Credit: Duncan Crary/Duncan Crary Comm.

Raffone is also the father of a child with DMD.

“My son, Jamesy, was diagnosed at age four and with that diagnosis came the sentence ‘go home and love your son, there is nothing we can do for him,'” said Raffone. “When I learned about a family in Florida that received the same destructive news, I knew I had to do something to help.”

DMD is a genetic disease that affects more than 300,000 males worldwide, with about 15,000 living in the United States. Because it is also a rare disease, many people don’t even know DMD exists, said Raffone. This leaves them unaware of how it viciously breaks down the child’s body and what it does to a family forced to grieve for their loved one before he is even gone. There is currently no cure for DMD.

After Jamesy’s diagnosis, Raffone and his wife Karen, started their own fight against the disease which ultimately became JAR of Hope, a 501(c)(3) nonprofit that raises awareness and funds research and clinical trials for potential DMD drug therapies. Most of the organization’s efforts are through participation in races, marathons, and other athletic event.

“We know there is hope and our mission at the end of the day is to find a cure so we can save the lives of children like my son and the Horton brothers,” Raffone said.

There are runners from 20 different countries participating in the Alps 2 Ocean Ultra race in New Zealand.

“It’s great to be running and hearing ‘Hey you’re Jamesy’s dad — to hear strangers mention my son’s name is absolutely beautiful,” said Raffone in a video update on social media. “I just wish I wasn’t here for this – I was here for another cause —  but this is my cross to bear as they say. My son’s going to have some legacy. People all over the world will know who Jamesy is and JAR of Hope and Duchenne muscular dystrophy.”

In an earlier social media video, Raffone visited Waitaki Boys High School in Oamaru where the students performed the Haka Dance.  Alps 2 Ocean Ultra race Director Mike Sandri, an alumnus of the school, arranged the special visit.

“For the last four years I’ve been traveling the world and I’ve been using the instrument of a pushup as a way to communicate to people how blessed they are. Because if you’re in any sort of a fitness world you might do push ups to warm up. Well, children who suffer from Duchenne muscular dystrophy will never be able to do one push up,” Raffone said, addressing the students in another social media video. “What was so impactful to Michael and how this all came about was in 2016 I stopped 135 runners with packs on their back. We all stopped after they listened to me and we all did 10 pushups in honor of boys around the world suffering from Duchenne.”

One day after the New Zealand race, Raffone flies to Australia to begin a 5-day, 100-mile walk, in partnership with Save Our Sons Australia (SOSA). Along the walk, Raffone and SOSA founder Elie Eid will visit schools that have students with DMD. Eid’s son also suffers DMD and the two will visit his school at the end of the walk. “Elie is as desperate to save his child as I am and I have a great deal of respect for him,” Raffone said.  “I’m honored to have help raising awareness for Duchenne muscular dystrophy around the globe. Together, we can find a cure.”

 

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