Rep. Smith stands with JAR of Hope Founder and CEO Jim Raffone, Joseph Russo, and Matthew Scarfo and his son Matthew on top of the US Capitol Building Dome in Washington, DC.

            At a flag presentation ceremony in Washington DC today on World Duchenne Awareness Day, Rep. Chris Smith (R-Manchester) recognized Manalapan residents Jim Raffone and Joseph Russo as well as Matthew Scarfo for courageously climbing Mount Everest earlier this year to help raise funds for a new clinical trial to treat Duchenne muscular dystrophy—a progressive disorder that affects around 300,000 kids worldwide.

            Though not quite the same climb, the team reached the summit of the US Capitol Building on a Dome tour led by Smith in addition to receiving American flags flown over the Capitol in their honor.

            The new, clinical-stage treatment supported by the Raffone Family’s nonprofit organization JAR of Hope uses umbilical cord lining stem cell therapy, which is derived from cord blood that has proved efficacious in treating over 70 diseases—including leukemia, sickle-cell disease and lymphoma.

            “The launch of this new clinical trial harnessing the power of stem cell therapy brings new hope for kids with Duchenne as we continue to strive to cure this devastating disease,” said Rep. Smith, who authored the Stem Cell Therapeutic and Research Act of 2005 (PL 109-129) that created, for the first time ever, a nationwide umbilical cord blood stem cell program.

            “Chris Smith first introduced us to the idea of the healing effects of umbilical cord stem cells, and we remain determined and optimistic that this unique study will help us reach breakthroughs for kids suffering from Duchenne,” said Jim Raffone, who founded JAR of Hope in 2013 when his then 4-year-old son James Anthony was diagnosed with Duchenne muscular dystrophy.

            At today’s meeting, Smith and Raffone also discussed next steps to secure more funding for the breakthrough study, including meetings with appropriate federal agencies like the National Institutes of Health as well as pursuing funding through the congressional appropriations process.

            Duchenne muscular dystrophy—which currently has no cure—causes a loss of both muscle function and independence with a 100 percent fatality rate occurring normally in the late teens or early 20s.

            One of his many laws to combat life-threatening and fatal diseases, Smith’s Stem Cell Therapeutic and Research Act established the nationwide umbilical cord blood stem cell program—known as the National Cord Blood Stem Cell Inventory—designed to better collect, derive, type, and freeze cord blood units for research and transplantation into patients in order to mitigate and even cure serious disease.

            Smith, who has worked with the Raffone Family for years to raise awareness and increase federal funding for Duchenne treatments, said the long-awaited stem cell trial “marks a major leap forward toward potential life-saving care for patients as scientists continue to study and better understand the regenerative effects of cord blood cell therapies.”

###