Jamesy Raffone James and Karen Raffone of Manalapan started the Jar of Hope Foundation with the goal of finding a cure for Duchenne muscular dystrophy because their son, James, 6, who is known as Jamesy, was diagnosed with the rare terminal strain of muscular dystrophy in October 2013.
One month later, the Raffones started Jar of Hope. One of their primary goals is to get the pharmaceutical industry to start funding research into Duchenne.
Dr. David Dornfeld of Middletown is working with the Raffones on a hyperbaric study in which Jamesy is placed in a hyperbaric oxygen chamber.
“It is the first study ever done to see if the chamber would help against Duchenne,” James Raffone said. “We are trying ultrasound. We are trying everything. Seven doctors in six of the country’s top hospitals have told me there is nothing we can do for Jamesy.
“They have told us to just take him home and love him, but I won’t accept that. I can’t accept that. This is my son, and I will do whatever it takes to save his life.”
The Raffones said they have raised $100,000 to date. A campaign dubbed “79 Gyms in 70 Weeks” is underway. James Raffone is visiting health clubs around the nation that are signed up for a program called “10 push-ups for $10.”
“You might wonder why the emphasis is on push-ups in our fundraising,” Raffone said. “We do it because Jamesy will never be able to do one push-up and that is how we first explained it to his sisters.”
During his visits, Raffone does push-ups with the gym members and he attempts to reach a goal of getting 100 people in each gym to participate.
The Raffones are trying to get other businesses involved with the push-up fundraiser. They said Anthony’s Coal Fired Pizza has joined the program.
High schools are also getting involved, Raffone said, adding that he has been invited to do push-ups with high school sports teams. Most recently, he did push-ups with the wrestling team at St. John Vianney High School in Holmdel.
Meanwhile, Jamesy is a “happy little prankster,” according to his father. His family strives to keep him as happy as possible without spoiling him, Raffone added.
“We want to give him as normal a childhood as possible, under the circumstances,” he said. “We make a game out of his medical treatments. He loves stretching his leg muscles like his dad and the hyperbaric chamber is his rocket; he goes into it to have fun with mom. Jamesy doesn’t know he is sick. These are just normal things to him.”
The Raffones have lived in Manalapan since 1999. Raffone is the owner of the Raffone Design & Build Group, a residential and light commercial construction firm, and his wife is a homemaker.
The Raffones said the support they have received in the community has been overwhelming.
“It is heartwarming,” Raffone said. “We have been delighted by the response of the young people in our community, in helping other young people who can’t help themselves.”
The Raffones announced that several fundraisers have been scheduled:
Movie night, June 12, St. Thomas More Church, Manalapan, to raise funds for Duchenne research. Details: 732-446-6661
Max Olympics, July 18, 2 p.m., iPlay America, Freehold Township. Sponsored by Jar of Hope and Max Fitness, both Manalapan. Jar of Hope will attempt to break the Guinness world record for the most people gathered to do push-ups at one time. The current world record is 612 people. There is a $20 fee for participants. Details: 732-620- 6868
New York City Marathon, Nov. 1, James Raffone will run to raise funds to fight Duchenne. Individuals who wish to contribute may call 732-620-6868
Jar of Hope Dinner Gala, Nov. 20, Battleground Country Club, Manalapan, to raise money for Duchenne research and cure. For more information, visit the website Jarofhope.org.