JAR of Hope is staging an unusual event to save children who are dying from an unusual disease. And one lucky participant will win a fortune from the event.
The foundation will stage a “$1,000,000 Golf Ball Drop” on Sept. 13 to raise funds to research a cure for Duchenne muscular dystrophy, according to a press release.
Duchenne is a muscle-wasting disease so rare that only 20,000 children in the United States have it. These children are in wheelchairs by their early teens, on ventilators by their mid-teens and in graves by their early 20s after suffocating, according to the press release.
“Because of COVID-19, charitable foundations have not been able to hold traditional fundraising events,” said Jim Raffone, JAR of Hope founder and CEO. “So we have to be extra creative in holding outdoor events that will engage and excite people.”
James and Karen Raffone started JAR of Hope in 2013 after their 4-year-old son, James Anthony (Jamesy), was diagnosed with Duchenne and after they were told by doctors there is no cure for these 20,000 children.
The $1,000,000 “Golf Ball Drop” will be held at the Bella Vista Country Club in Marlboro, but golf clubs will not be needed. A helicopter will drop 1,000 marked golf balls over a hole and the participant whose ball lands closest to the hole – or in it – will win $250,000, according to the press release.
Each ball costs $1,000 to purchase and only 1,000 balls will be sold. Proceeds will go to research a cure for Duchenne MD, according to the press release.
Jamesy Raffone is now 12, nearing the age when children who have Duchenne start losing the ability to walk. So, especially with the effects of COVID-19 on fundraising events, the clock is ticking, very loudly, for these 20,000 children.
“We picked Sept. 13 for this event because that is the day in 2013 that our son was diagnosed with Duchenne,” Raffone said. “The doctors told us to ‘just love him until he dies,’ but that was not an option for us. And then we realized it should not be an option for any parent of a child with Duchenne. The result was JAR of Hope.”
The link for the event is www.jarofhope.org/gbd
