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UMass ALS Cellucci Fund team running for a cure at Boston Marathon

Date Posted: February 27, 2019

By: Megan Bard

Category: Graduate School of Biomedical Sciences,Faculty,Amyotrophic Lateral Sclerosis,Rare Disease


	This is the eighth year that runners supporting the UMass ALS Cellucci Fund have taken part in the John Hancock nonprofit Boston Marathon program.

Five people will represent the UMass ALS Cellucci Fund in the 2019 Boston Marathon on April 15 to support amyotrophic lateral sclerosis research (ALS) underway at UMass Chan Medical School.

Edward “Teddy” Craven, 22, said running the marathon for the UMass ALS Cellucci Fund is a fitting way to pay tribute to one of his youth coaches, Richard P. Kennedy, who was diagnosed with ALS three years ago, after spending decades raising money to fund a cure for the disease.

“It’s difficult to describe what a great person he is,” said Craven, a senior at the University of Connecticut. He grew up with one of Kennedy’s sons and recalled many basketball games and car rides with Coach Kennedy. “He’s truly an inspiration.”

Kennedy is president of The Angel Fund for ALS Research, a nonprofit with one objective: to support the research of Robert H. Brown Jr., DPhil, MD, at UMass Chan Medical School. ALS has touched the Kennedy family since 1989, when the disease claimed Kennedy’s father. Several years later, Kennedy’s youngest brother died from ALS at the age of 31; and in 2016, Kennedy was himself diagnosed with ALS at the age of 56. He recognized the symptoms while he was training for his 32nd Boston Marathon. Chancellor Michael F. Collins will honor Kennedy at the UMMS Commencement in June with an honorary degree for his life’s work toward a cure.

Dan Leone of Waltham; Julie Bowditch of Worcester; Kathleen Berry of Charlton; and Michael Walpole of Hanover; are also on the UMass ALS Cellucci Fund marathon team.

Leone will run in memory of his father, Donato Leone, who died in 2008 at age 78 from ALS.

“This disease took him away from us. I am honored to be allowed to run the Boston Marathon and help raise money for the UMass ALS Cellucci Fund so perhaps, one day, no one will need to suffer from this disease,” Leone said.

For Bowditch, every step she takes will be for her late uncle, Ron Merrill, who was diagnosed with ALS the weekend of the 2018 Boston Marathon and died from the disease that September.

“No one deserves to battle amyotrophic lateral sclerosis. No one. But my Uncle Ron really didn’t,” Bowditch said.

This is the eighth year that runners supporting the UMass ALS Cellucci Fund have taken part in the John Hancock nonprofit marathon program. The partnership provides official race numbers to those who commit to individually raising a minimum of $7,500 to support ALS research at UMMS. The Cellucci Fund marathon teams have raised more than $400,000.

Former Massachusetts Gov. A. Paul Cellucci dedicated the final years of his life to working toward a cure for ALS, founding the UMass ALS Cellucci Fund in 2011 to support ALS research at UMMS. It is home to the lab of Dr. Brown, the Leo P. and Theresa M. LaChance Chair in Medical Research, professor of neurology and director of the Program in Neurotherapeutics, as well as one of the world’s leading ALS researchers and Gov. Cellucci’s personal physician. The governor died from the disease in 2013. Learn more about and support the UMass ALS Cellucci Fund team here: https://www.crowdrise.com/o/en/campaign/umass-memorial-foundation-boston-2019/theumassmemorialfoun