Here’s how you can help Monmouth County, NJ Dad as he climbs Mt. Everest for his son and others with DMD
A Monmouth County Dad who walked 300-miles in 2021 to help find a cure for Duchenne Muscular Dystrophy, a disease his now 13-year old son has been battling since 2012, is now taking on an even bigger physical challenge with a similar goal.
Jim Raffone, the CEO/Founder of JAR (James Anthony Raffone) of Hope named after his son Jamesy, is preparing physically, mentally, and emotionally for the climb up Mount Everest on April 25.
The journey to this upcoming climb is actually years in the making, and it does include the 300-mile walk last year, but even before then, Jim's mission to fight for his son and others who have DMD has been everlasting.
"Going back to September of 2016, trying to raise awareness for Duchenne Muscular Dystrophy, one of my board members had jokingly said 'maybe, you should climb Mount Everest to get everybody's attention', but it was quickly put to a halt because I had a heart condition and some other ailments going on at the time," Raffone tells Townsquare Media News. "We took on all the various things to one day get to (Mount) Everest, and fortunately and unfortunately, due to Covid in the last two years, we've been hit financially very hard."
Faced with a challenge to raise money and come up with fundraisers, the 2016 suggestion to climb Mt. Everest has become a reality for Jim Raffone here in 2022 to raise money for treatments and a cure.
"Our goal is to finance a clinical trial that's $1.5-million dollars," Raffone said. "To me, it was just the next natural step to climb (Mount) Everest, and I called one of two people and it was a-go, and I haven't looked back even though the guides and a few other people who have attempted this in the past have told me I'm crazy because I didn't even give myself 50-days to prepare for this -- but neither did my son, no-one prepared him for this terminal muscle-wasting disease that he has, so how I can I look him in the eyes and say I can't go do something that's potentially life-threatening when he has a life-threatening disease."
This climb up Mount Everest is a small part, so to speak, of the bigger goal to raise funds, awareness, and hope for Jamesy, Jim, his wife Karen, and everyone out there battling DMD and their families.
It's an even steeper climb than Mt. Everest to raise $1.5-million.
"Unfortunately, not that close, I think we've netted about $75,000 so far towards that goal, so, talk about climbing Mount Everest, I'm not sure Everest is the hardest mountain that I have to climb, as much as it is this $1.5-million that I need to raise," Raffone said.
When you take a look at the numbers for the clinical treatment alone as well as what they hope to raise for further treatments and a cure, that $1.5-million doesn't seem like enough.
In July of 2021, Raffone told Townsquare Media News, just how much it costs for treatment.
"Through the efforts of JAR Of Hope and everybody who has supported us over the last 8-years, we have developed a therapy, a compound that seems to be in children, and when I say seems, I say that because it's an experimental drug that we've been giving these kids, 4 boys (2 from Manalapan)...since December of 2019. It costs us $25,000 every 90-days, per child, so it's $100,000 every 90 days to give just these 4 children this therapy," Raffone said. "There's a laundry list of children in New Jersey alone who could benefit from this new drug compound."
Flash forward to today, and the climb ahead, the need is strong for your help, and Raffone says they could use help including and outside of donating as well, just by sharing their posts on social media under JAR of Hope or their website.
When he goes on the climb with two others from JAR of Hope, you'll be able to virtually take it with him come April 25.
"I will be carrying a tracking device so people could follow us during the climb," Raffone said.
While Jim is climbing Mount Everest, there are ways you can also help out Jamesy as well.
"He's hanging in there, mentally and physically," Raffone said. "They (you) can help by mailing him -- he loves legos, if anyone wants to send him notes they can mail it to 631 Lake Avenue in Asbury Park, New Jersey -- anything they want to send just to keep his morale going, especially while I'm gone."
JAR of Hope will soon have a new website specifically for the Mt. Everest journey as well, Raffone said, which will be jarvseverest.com, and they will also be selling tickets for a fundraiser event on February 23 at the Berkley Oceanfront Hotel in Asbury Park which will include a performance by the Eddie Testa Band.