Boston Marathon runners raise thousands for UMass Chan ALS research

By Susan E.W. Spencer and Kaylee Pugliese

UMass Chan Medical School Communications

April 05, 2022

ALS research at UMass Chan Medical School is the big winner as select Boston Marathon runners raise tens of thousands of dollars each year while training for the demanding 26.2-mile event.

This year, five competitors in the April 18 event are running as part of the UMass Chan ALS Cellucci Fund Boston Marathon team as one of the John Hancock Marathon Non-Profit Programs. In addition, two sons of the late Jake Kennedy, in whose honor the Jake Kennedy ALS Fund at UMass Chan Medical School was founded three years ago, are raising money to support ALS research.

All the runners are committed to finding a cure for ALS, or amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. And most this year have a personal connection to UMass Chan. Between the two fundraising groups, the goal is to contribute $100,000 in new support for ALS research.

Dean Kennedy, a Shrewsbury resident and football coach at the College of the Holy Cross, and his younger brother Chip Kennedy, an entrepreneur in North Carolina, are doing the legwork as #TeamJake to support the Jake Kennedy ALS Fund in memory of their father. Jake Kennedy, a Boston-area physical therapist, avid marathon runner and community philanthropist, saw several family members die from ALS before he too was taken by the disease in 2020.

Zack Kennedy, PhD’19, another of Jake Kennedy and his wife, Sparky’s four children, was mentored at UMass Chan by Robert H. Brown Jr., DPhil, MD, the Leo P. and Theresa M. LaChance Chair in Medical Research and professor of neurology. Dr. Kennedy works now in the lab overseen by Anastasia Khvorova, PhD, the Remondi Family Chair in Biomedical Research and professor of RNA therapeutics. He collaborates with Dr. Brown and others racing to develop gene therapy to halt ALS. Zack Kennedy, whose wife just had a baby, had to forgo running plans this year although he has run the marathon previously.

The Jake Kennedy ALS Fund has raised more than $487,000 since its inception in December 2019 and #TeamJake hopes to raise $50,000 more this spring.

“My father ran 37 straight marathons—he gave his heart and soul to the community of Boston and did everything he could to help anyone and everyone around him,” Dean Kennedy said. “What better way to honor a man who cherished the Boston Marathon beyond belief than to run something that he did 37 straight times and try to raise $50,000 in efforts to end the disease that took my father’s life?”

When he was 10, Kennedy fondly recalls watching for his father at the 24-mile mark along the course, and running the last 2.2 miles with him to the finish. Another memory he cherishes is running a half-marathon with his father, six months after Jake Kennedy was diagnosed with ALS.

“My dad’s marathoning is the reason I ran cross country and track in college and it’s the reason I run marathons now,” said Chip Kennedy. “He taught me about the joys of running and the joys of giving back to one’s community. This will be my seventh marathon and second Boston. It’s an opportunity to be close to my dad, a man that ALS took from us far too soon.”

This year’s ALS Cellucci Fund marathon team has raised more than $37,000 of its $50,000 goal. The UMass Chan ALS Cellucci Fund has raised more than $5.2 million since it was established a decade ago.

Since 2011, more than 50 individuals have been part of the UMass ALS Cellucci Fund marathon team through the John Hancock Marathon Non-Profit Program, which provides bibs to select nonprofit organizations. These runners have raised more than $500,000.

“All of us in the ALS research team here at UMass Chan Medical School are deeply grateful to these remarkable colleagues who are running this year’s Boston Marathon in support of the Cellucci Fund,” said Brown. “We recognize how much time and effort this race entails, both in training and in the run itself. These runners will have a very substantial impact on ALS research at UMass Chan.”

The 2022 UMass Chan ALS Cellucci Fund Boston Marathon team includes these members:

Brittany Dellechiaie of Leominster is a nurse practitioner at UMass Memorial Medical Center’s neurosurgery department. Dellechiaie ran the New York City Marathon in 2018 to raise money for charity, but the UMass Chan ALS Cellucci Fund is particularly meaningful to her.

“I will run for those who can’t due to ALS,” Dellechiaie said. She is eager to support her colleagues and “all the hard work we do in order to fund more research to hopefully find a cure.”

Douglas Golenbock, MD, the Neil and Margery Blacklow Chair in Infectious Diseases and Immunology and professor of medicine, wants to contribute to research at UMass Chan as he runs his third marathon. The Wellesley resident said, “I like to run and I love UMass.”

Madelyn Jaroch of Acton is the granddaughter of John L. Sullivan, MD, professor emeritus of molecular medicine. A student at Indiana University, Jaroch will be running her first marathon in memory of a friend who died last year from ALS, leaving four daughters behind.

“UMass is to credit for a number of breakthroughs in ALS research and they continue to get closer to one day finding a cure, and I am so glad to contribute to that,” Jaroch said.

Phillip Kinnison, a digital solution architect and senior principal at Accenture, is a Chicago resident who is active on boards of nonprofit organizations local to him. He lost his uncle to ALS and is committed to running his first Boston, after 71 previous marathons and ultramarathons elsewhere, to raise money for the UMass Chan ALS Cellucci Fund.

“He was such an active person and enjoyed being outside in nature,” Kinnison said. “To see how this disease took that away from him was tough. For me, I don’t want other families to have to go through what mine did.”

Paul McNeil of Worcester has run six marathons before, including five Bostons for other charities. This race is more personal, he said. McNeil is close friends with the father of one of Jan and Paul Cellucci’s grandsons, Gabriel.

“The first time I met him (Cellucci) he gave me a firm handshake. The last time I met him he was unable to shake hands. He was in a wheelchair,” McNeil said. “This one is for Paul.”