The 125th running of the Boston Marathon on Oct. 11 will have special significance for five runners raising money for UMass Medical School’s ALS Cellucci Fund.
“This is a monumental year because it is the 10th anniversary of the UMass ALS Cellucci Fund team participating in the Boston Marathon,” said Julie Bowditch, manager of community fundraising in the UMMS Office of Advancement. “Also, we are running the Boston Marathon the only time it is being held live in October.”
The 2020 in-person Boston Marathon was canceled, shifting to a virtual marathon in which runners ran the distance in their own neighborhoods. This year, with introduction of COVID-19 vaccines, the Boston Athletic Association moved the event to October from its traditional April date and limited the field to 20,000 participants.
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, according to the Office of Advancement.
The marathon team’s contributions are part of more than $5.2 million that has been raised to help Robert H. Brown Jr., DPhil, MD, the Leo P. and Theresa M. LaChance Chair in Medical Research and professor of neurology, and his colleagues make strides against amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s Disease. Dr. Brown also treated the late governor of Massachusetts and ambassador to Canada, A. Paul Cellucci, founder and namesake of the fund, after he was diagnosed with ALS.
“We typically receive five bibs through the John Hancock Non-Profit Program, and we are very grateful and excited to be part of that again,” said Bowditch. “It’s a very competitive program, with many charities on the waiting list for years to have this opportunity. So, we don’t take it for granted.”
This year’s team aims to raise $50,000 and, in late July, it was closing in on halfway there. Sponsorship opportunities are available to help defray some of the fundraising burden of the individual runners, Bowditch said. Each runner commits to raising at least $7,500. Information about sponsorship can be found at: https://www.umassmed.edu/umass-als-cellucci-fund/boston-marathon-team/sponsor/.
The team includes Todd Brisky (who also ran for the team in 2018), Carol Castiglia, Heather Forchilli, Scott Ober and Vinay Sampson (who was accepted to the team in 2020 but did not have the opportunity to participate due to COVID).
Many team members throughout the years have had a family member or friend impacted by ALS.
Vinay Sampson, 55, of Monroe, Connecticut, lost his brother, Vidyasagar, to ALS in 2015, at age 59.
“I would say he was my hero, so that’s what motivated me,” Sampson said. Growing up in India, in a family of nine children, Sampson said he and his siblings looked up to Vidyasagar, who had a passion for sports and music. “He encouraged us to be active, to pursue their dreams, and he did everything to make our paths easier than his own,” recalled Sampson.
Sampson played and coached basketball throughout his youth and later worked with the YMCA.
He said, “The reason I started running about six years ago, was to be healthy and be a role model for my girls,” one who is in high school and one who recently graduated from UMass Amherst and works in public health. “I want my girls to know that if they put their minds to something, they can accomplish anything.”
This will be Sampson’s seventh marathon, having run other large marathons such as New York City, San Francisco, Seattle, Los Angeles, Hartford and Dublin, but it will be his first Boston.
“Running Boston means a lot for me personally,” said Sampson. On April 15, 2013, the Sampson family was in Boston. They were having lunch at the harbor and around them were several athletes who finished the race. They then saw the terrible events of that day unfold. “It was a dark day, but the courage and strength of this city inspires me. Boston has been in my heart since that day.”
Making the trek from Hopkinton to Copley Square with family and friends to cheer him on along the way will be something Sampson will treasure for a lifetime.
“I never thought I would run. But today, I’m so blessed and fortunate to be part of the ALS Cellucci Fund team. I’m running for a beautiful cause. I hope and pray that we will see a breakthrough for ALS in our lifetime,” he said.
Heather Forchilli, 30, of Worcester, had an epiphany eight years ago, “and realized I wasn’t living the life I pictured for myself,” she said.
She embarked on a fitness journey, dropping 120 pounds through exercising, quitting smoking, drinking water and eating healthier. And she discovered her inner athlete, joining local women’s rugby, soccer, kickball and softball teams.
Forchilli has shared her journey on social media, hoping to motivate others. That effort extended into her embrace of running, which she took up four years ago when she began training with the rugby team.
When she turned 30 in April, she organized friends and family for a fun, “I believed I could, so I did,” 30-mile run, donating $250 from the event to the nonprofit group, Girls on The Run Worcester.
Raising money for a cause while running came naturally for Forchilli. When she had the opportunity to run her first official marathon with the ALS Cellucci Fund, she jumped at the chance. The cause was even more meaningful to her because her stepfather’s mother, Ellen, died from ALS in 2012.
Even after Ellen was diagnosed with ALS and couldn’t continue to travel, hike mountains and do the things she loved, she remained positive, Forchilli said.
“She said she felt so blessed that she was able to do all those things while she could,” Forchilli recounted. “And for her to have such a positive attitude when a diagnosis like that comes, it just blew my mind. It was part of my epiphany that the key to happiness, to a successful life, is a positive attitude.”
Keeping the spirit of fun going, Forchilli added a costume challenge to her ALS Cellucci Fund fundraising, in which the highest donor of the week gets to choose what costume she will wear for her weekend long training run. So far she’s run as the Queen of Hearts, Black Widow and the Red Hot Chili Peppers.
Bowditch, who ran with the team in 2019 in memory of her uncle, who died of ALS in 2018, said there will be some group activities before the marathon.
Two years ago, the UMass ALS Cellucci Fund team members were invited to UMass Medical School’s campus for a lunch with Dr. Brown and Fen-Biao Gao, PhD, the Governor Paul Cellucci Chair in Neuroscience Research and professor of neurology. Jan Cellucci, Gov. Cellucci’s widow, also attended.
“You know, it’s funny because I brought the team here thinking they’d be inspired by the researchers,” Bowditch said of that gathering. “Dr. Gao said the reverse also occurred. He was even more motivated in his research after seeing what the runners were willing to do to help.”
