WALL TOWNSHIP — From June 13 to June 17, JAR of Hope Founder Jim Raffone ran throughout Ocean, Monmouth and Middlesex Counties to raise funds in the search for a cure to the devastating genetic disorder, Duchenne Muscular Dystrophy [DMD].
Joined by friends Bill McCarthy and Joe Ippolito, Mr. Raffone traveled an estimated 160 miles, visiting all 15 branches of Manasquan Bank, a sponsor of the charity. Donations were accepted at each of the bank’s offices.
“We’re happy to be partners with them,” said Charlie Mylod, Vice President of Manasquan Bank. “The bank is very active in that space when it comes to partnering with local charities. And when this arose, we certainly said, ‘What can we do to help?’”
Their trek started on Monday, June 13, when the runners set off from the Little Egg Harbor branch of Manasquan Bank and ended on June 17, with visits to the Wall and Manasquan branches locally.
For Mr. Raffone, the week-long run was part of an emotional and spiritual journey that began when his son Jamesy was diagnosed with DMD at the age of four.
“In 2013, Jamesy was diagnosed with DMD, a disease that’s been around for 200 years, but I had no idea existed,” Mr. Raffone said.
“A geneticist looked me square in the face, on Sept. 13th at about four o’clock in the afternoon and told me, ‘Sir, go home and love your son. There’s nothing we can do for him; he’s terminally ill.’”
According to Mr. Raffone, doctors say that his son and other children suffering from DMD face quadriplegia by age 15 and death in their early twenties.
Despite the bleak odds, Mr. Raffone is determined to find a cure for his son.
“The two greatest days of your life are the day you were born and the day you realize why. September 13th, 2013, I realized what my existence is on this planet. Before then I’ve had so many fears, fears in life,” Mr. Raffone said.
Now he says, “My only fear to date is that I can’t save my son’s life … So I’m not afraid to take on any challenge. I’ve lost that trepidation because I wanted him. As a parent, it might be a little bit selfish to want children, especially those who were brought into this world who were sick. And I feel it’s my responsibility to make sure that he’s okay or give him a fighting chance.”
The money raised by this run and other fundraisers JAR of Hope is doing will go towards paying for 12 children’s participation in a study by University of Florida.
For more information on DMD, to make donations, or get in contact, visit jarofhopes.org.
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