Six people will run for the UMass ALS Cellucci Fund in this year’s edition of the Boston Marathon, raising awareness and money for amyotrophic lateral sclerosis (ALS) research underway at UMass Medical School (UMMS).
For Chris Benyo, the Boston Marathon is like no other. When he crosses the starting line on April 18, Benyo will be running the marathon for a fifth time, and his 45th marathon all together. In this year’s race, he will be joined for a second time by his wife, Denise DiMarzo, who received her ALS diagnosis in December 2010, just six months after their marriage. According to Benyo, his wife had started running shortly before the wedding, with plans of running a marathon together.
“And then she got sick. I wanted to keep my promise to her,” Benyo said in a press release. The couple will use a specifically designed running chair provided by The Hoyt Foundation. “It’s an awful, awful disease that I wouldn’t wish on anyone. My wife is amazing and inspires everybody. She keeps me going and fights it every day.”
The couple have completed seven marathons, and Boston will be their eighth. In December, five years after her ALS diagnosis, DiMarzo announced her intent to participate in 10 marathons — with the ninth and tenth taking place in New Jersey and Illinois, their home state, later this year.
“Once she passed that [five-year] milestone we wanted to celebrate,” Benyo said. “There is nothing like Boston; it is the epitome of long distance running.”
People and charities are drawn to this course for many reasons. For the Cellucci Fund, the 2016 race is its fifth as part of the John Hancock nonprofit marathon program, a partnership that delivers official race numbers to those pledging to raise $7,500 to support ALS research at UMMS. To date, Cellucci Fund teams have raised a total of $225,000.
Since its establishment in 2011, the Cellucci Fund has generated $3.9 million to fund ALS research at UMMS and, particularly, ongoing work in the laboratory of Dr. Robert Brown, a neurologist and personal physician to former Massachusetts Gov. Paul Cellucci, who died from ALS complications in 2013. Jaime Miller of Hudson, Massachusetts, contacted the governor’s wife, Jan Cellucci, to ask her support in becoming part of the Cellucci Fund team: “While running Boston has been a dream of mine, running it to support Dr. Brown and his team is an incredible honor,” Miller said. “I find that with this disease, it leaves us feeling helpless, but it is nice to be able to contribute in some way.”
Miller will race in honor of her brother, Terry Nash, who has ALS, part of a team that also includes Sue Beaulieu of Hudson, running in memory of her father, Jack Veo, who lost his fight against the disease.
More personal stories and news about the 2016 UMass ALS Cellucci Fund Boston Marathon team are available on its website.