One couple’s passion to find their granddaughter’s cure

Soon after their granddaughter was born, Ira and Ronnie Levine found a new mission in life: help find and fund a cure for Prader-Willi syndrome (PWS), the condition affecting their beloved Josilyn.

Individuals with PWS, a genetic disorder, experience developmental and intellectual disabilities as well as certain behavioral problems, but most strikingly, the syndrome causes a chronic and insatiable appetite. The associated weight gain can lead to type 2 diabetes, cardiovascular disease and other life-threatening conditions. Discovering that there was no cure and limited treatment for the condition, the Levines took action. “We had to do something for Josilyn and the many other families who suffer this burden,” Ira says.

“My charity work is being proactive in my granddaughter’s life,” adds Ronnie.

The couple formed the Josilyn’s Faith Foundation for Prader-Willi Syndrome Inc. and launched a popular LPGA golf tournament to raise funds. They also established The Prader-Willi Research Fellowship at Scripps Research's Florida campus and, in addition to the golf tournament, support it through charitable events that include gala dinners and auctions.

Their financial support has helped scientists at the institute zero in on a potential drug. A compound identified and tested in mouse models of PWS appears to have so much potential that the Josilyn’s Faith Foundation recently helped fund a startup company, Calm Therapeutics, to move the drug through investigative trials.

“I’m cautiously optimistic,” says Ira.

I never thought I would get to the day where we had something that was promising.

For the Levines, supporting scientific research is personal. But they know cures require everyone’s support.

"The more you do, the more we can do,” Ira says. An apt motto for any philanthropic passion.