NJ dad walking 300 miles to help find cure for terminal muscular disease
It's a heartbreaking disease, one that brings so much suffering and little hope.
A Manalapan dad whose son is battling Duchenne Muscular Dystrophy is looking to start changing all that and bring hope and a cure to those with this disease by walking 300 miles this starting this coming weekend.
It is a rare disease, affecting 1 in every 3,500 births according to the National Organization for Rare Disorders, and one that allows a child to grow but with several delays and difficulties including mobility, breathing and speech overtime to one day being unable to walk or move by the time they're a teenager.
Many of those who battle this disease pass away by their early 20s, although some have lived longer including into their 30s, according to the Muscular Dystrophy Association.
In an effort to help people like his son and families like his watching the battle with this disease unfold and build a push for a cure, Jim Raffone began an organization in 2013 known as JAR Of Hope, named after his son 12-year old James Anthony Raffone, who received the diagnoses at just 4 years old.
"Unfortunately, September 13, 2013, James was diagnosed with a terminal muscle weakening disease that does not have a cure," Raffone told Townsquare Media News on the July 4 episode of 'Jersey Shore Journal'.
This Saturday, July 10, JAR Of Hope CEO Jim Raffone, JAR Of Hope Treasurer Joe Ippolitio and friend Martin Cintron (whose now 15-year old child also has DMD and is currently a quadriplegic) will embark on a 300-mile walk from the University of Massachusetts to Millstone, New Jersey to raise funds, education and awareness of DMD in hopes of also finding a cure.
"Unfortunately nowadays people still don't know the word Duchenne so it is my prerogative to make sure that anywhere up and down the northeast, that we can raise awareness for this disease as well as raise funds," Raffone said.
A cure is the ultimate goal but some short term goals are finding ways for anyone battling the disease to endure much less suffering.
"There is no therapy out there today that can help these children," Raffone said. "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 a $100,000 every 90 days to give just these 4 children this therapy. There's a laundry list of children in New Jersey alone who could benefit from this new drug compound."
In addition to the upcoming fundraiser walk, JAR Of Hope is holding a Golf Outing on August 13 at Mercer Oaks Golf Course in Princeton Junction.
This organization is designed to help any child and family in New Jersey, in any way they can.
"JAR Of Hope is here to help all these families, either through research and/or mobility devices," Raffone said.
If you and/or someone you know is in need of assistance as a loved one battles DMD, you can reach out to Jim Raffone and JAR Of Hope via email at firstname.lastname@example.org, via their website or on the JAR Of Hope Facebook page.
"I am always here for any family, throughout the country," Raffone said. "For those in New Jersey who need help, there's help right in your backyard and don't feel like you're alone."