James Raffone

OUR TEAM

JAMES RAFFONE

Founder & CEO

Founder of JAR of Hope, Mr. Raffone brings an unwavering resolve that comes with the desire to preserve the life of his young son. He spearheads all JAR of Hope initiatives while running the organization’s day-to-day operations.


James Raffone, Founder and CEO, of JAR of Hope. Jim started JAR of Hope when his then 4 year-old-son, James Anthony Raffone, was diagnosed with Duchenne muscular dystrophy on September 13, 2013. Jim manages: the day-to-day tasks, calendar of events and ensures all events are executed through their life cycle. Jim also manages the annual budget set by both he and the Board of Directors for JAR of Hope. 

Some of the key events that helped to make JAR of Hope and Duchenne MD a household name are: a World Record-Breaking Lego Event, The TCS NYC Marathon (Jim has been able to lead a team thru the streets of the 5 boroughs for 7 consecutive years. The synergy Jim has been able to create in the last few years gave him the opportunity to lead over 40 runners out and to the finish line), the JAR of Hope Pushup Campaign (this campaign helped Jim bring Duchenne to 217 gyms in the last 7 years as well as over 50 schools all over the world). Jim’s pursuit to raise awareness brought him to other places and countries like: Utah, Florida, Las Vegas, Staten Island, Brooklyn, Pennsylvania, Tennessee, Ohio, Canada, New Zealand and Australia, to name a few. In some of these areas, Jim ran the most dangerous races on the planet. 


Jim’s intention was to raise awareness and funds to move the science forward further than it has been in the last 200 years. Jim also presented to the National Institute of Health (NIH) and showed them the financial shortfalls by universities causing an 84% failure rate of studies that start and never finish. In doing so, Jim helped secure an increase in the NIH budget of $2 million a year since 2017. Jim has taken the fight into the laboratories as well. He was able to fund, completely, 3 studies which were stepping stones to a in-human study, that started in 2019 and is still ongoing today. These studies have led Jim to filing an IND with the FDA to start a clinical trial that can potentially change the lives of 12 boys. 


Jim’s mission to find a cure for Jamesy and other children has been absolutely relentless and he has committed himself to see this through.

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