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JAR OF HOPE FOUNDATION BRINGS SICK YOUNGSTER TO UNITED STATES FOR TREATMENT

It’s not easy to get a little Irish boy with a fatal illness to the United States for medical treatment, especially during COVID-19. But JAR of Hope has done it.



Alfie Pentony, 7, lives in Northern Ireland with his parents, Colleen and Jamie, and two brothers, according to a press release from JAR of Hope.

At the age of 4, Alfie was diagnosed with a very rare, always-fatal muscle-wasting disease called Duchenne Muscular Dystrophy. By their early teens, victims of Duchenne are in wheelchairs and by their early 20’s they are in graves after suffocating to death, according to the press release.

Alfie is participating in a year-long study called Operation Lifeline, conducted by the Salerno Center for Complementary Medicine in New York City, and sponsored by the JAR of Hope foundation of West Long Branch, which raises funds to research a cure for Duchenne.

Because of COVID-19, Alfie and his dad were initially denied entry into the United States for this month’s tests, according to the press release.

“This is a very promising study and we were determined to get Alfie here for the next phase, which is this week,” said Jim Raffone of JAR of Hope, who, with wife Karen, founded the organization in 2014 after their 4-year-old son James Anthony was diagnosed with Duchenne, according to the press release.

“So I began hitting the phone, to Congressman Chris Smith of New Jersey; Tom Lantos of Congress’ Human Rights Commission; Dr. John Salerno of the Salerno Center; and Patrick Smith, legal counsel to Congress’ Human Rights Commission, who was able to connect us to the U.S. State Department and the American Embassy in Ireland,” Raffone said.

In Operation Lifeline, four boys with Duchenne receive infusions of a chemical compound called JAR914 every three months and their muscle strength is measured before and after the treatment. The results have been very encouraging, according to the press release.

“We had brought Alfie here every three months for the treatments, since last October,” Alfie’s dad Jamie said. “But to get here now we needed assistance and JAR of Hope was really there for us. I don’t think we could have gotten Alfie here without them.”

“This is a ground-breaking study,” Raffone said. “For the first time, we are seeing results that may actually prolong the lives of kids with Duchenne … and maybe even lead to a cure. So when Alfie’s parents contacted us, we vowed we would not stop until we got him here.”

Finally, only weeks before this week’s phase of Operation Lifeline, Jamie Pentony and Alfie received permission to come to the United States and Alfie is undergoing the infusions right now, according to the press release.

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Hypoxia as a Modulator of Cardiac Disease in Duchenne muscular dystrophy by Dr. DeWayne Townsend Jamesy is one of the first children with Duchenne muscular dystrophy to undergo HBOT treatment. Through this study, his marked improvements have led to the first ever hyperbaric pre-clinical trial to be hosted by the University of Minnesota. The launch of the HBOT research is a primary focus of our current fundraising efforts. The findings may provide the vital information needed to prove the clinical efficacy of oxygen therapy, and could lay the groundwork to make this treatment available to all children suffering from Duchenne. The goal of the HBOT study is to enable these children to walk for as long as possible, until a cure can be found.

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Joe Ippolito (our Treasurer) and I will be taking a 260-mile “walk” next month. A “Walk For Their Lives,” to be exact, from Washington, D.C. to Old Bridge, to raise awareness of Duchenne Muscular Dystrophy. Yes, you heard me right – from D.C. to NJ. By now, you know that kids with Duchenne are in wheelchairs by their early-teens. Breathing through ventilators by their late-teens. And that there is no cure. But we want the rest of the world to know, too. So Joe and I will be driving to Washington with our families, and they’ll drive back home while we “Walk For Their Lives.” We will start on Columbus Day, Oct. 12. We’ll be walking 33-35 miles a day and camping out each night. On the night of Sunday, Oct. 18, we’ll be camping out at Sportika in Manalapan Township. And the next day, we will walk the last 26.2 miles (the length of a marathon). We will stop at the last sponsored checkpoint at All American Ford Old Bridge. Then it is on to the finish line at Lombardi Field in Old Bridge (near Old Bridge High School), where Mayor Owen Henry and Congressman Chris Smith will greet us. And we would love for you to join us! Please feel free to join us anywhere along the route, and to leave anywhere (although you are invited to the Finish Line for the ceremonies!) Our “Walk For Their Lives” will be sponsored by All American Ford in Old Bridge, and we’ll wind through Maryland and Pennsylvania before New Jersey. Our goal is to raise $50,000+ toward a cure for Duchenne Muscular Dystrophy…so that no parent will ever again have to hear the news that Karen and I heard seven years ago. Please join us! It will be a joy to see our friends and neighbors as we head toward the finish! For the latest updates, please follow our Facebook group, D.C. to All American Ford – Team Jamesy 24/7 . To donate or to become a fundraiser, please visit the Donation Page . -Jim Raffone

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H360 HEALTHTALK: JIM RAFFONE | JAR OF HOPE

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Dave is a business and technology strategist for the pharmaceutical and healthcare industry. With a heritage in healthcare marketing, communications, and technology, David has worked with pharmaceutical companies, the medical profession, research organizations and patient groups for over 20 years, completing various types of marketing and strategy projects across almost all disease areas. David founded healtheo360 in 2013 after his sister-in-law was diagnosed with stage IV breast cancer and his mother with Alzheimer’s disease. After unsuccessful efforts with other support groups, due in part to the widening age gap between members of these groups, the family was forced to search for other outlets of social support. In response, healtheo360 was started. Visit them here. 
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