ALS research at UMass Chan gets a big boost thanks to Boston Marathon runners

Everyone who runs the Boston Marathon has a story.

Entering, training for and completing the famously challenging race is undoubtedly a journey filled with twists, turns, painful lows and exhilarating highs. For the event’s thousands of charity runners, personal stories are also deeply tied to positive change. These marathoners actively solicit donations on behalf of institutions and nonprofit organizations, bringing critical resources to work that represents our highest ideals as a society, such as youth development, education, and biomedical research.

Following recent tradition, multiple runners hit the 26.2 mile racecourse on April 17 to support ALS research at UMass Chan Medical School, specifically the pioneering lab of Robert H. Brown Jr., DPhil, MD, the Donna M. and Robert J. Manning Chair in Neurosciences and professor of neurology. Breakthrough advancements at UMass Chan are bringing hope to people and families affected by this devastating, fatal disease with no known cure.

Sisters Ashley Craig and Lacey Foley of East Bridgewater ran this year for the UMass ALS Cellucci Fund in memory of their grandmother, Linda Harrington, who died from ALS.

“Watching someone you love suffer in any capacity motivates you to want to do whatever you can to bring awareness, raise money, whatever that may be,” said Foley. “I said jokingly that we should run the marathon, because to non-runners, the pain you would go through would kind of mirror the pain that she had to go through. That’s when we really decided to do it.”

Craig and Foley organized a gala in March as a centerpiece of their fundraising efforts, with a DJ and raffle prizes, including a hockey stick signed by Bruins player Patrice Bergeron, which the late Gov. Paul Cellucci’s daughter donated.

The Cellucci Fund was launched under the leadership of the late Massachusetts Gov. Paul Cellucci, who died from ALS in 2013. More than 50 individuals have been part of the 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 $720,000, including this year’s total of almost $62,000.

Meanwhile, brothers Dean Kennedy and Zack Kennedy, PhD’19, raised funds to honor their father, a veteran of 37 Boston Marathons who died from ALS in 2020, on #TeamJake/The Jake Kennedy ALS Fund Marathon Team, bringing in more than $76,000.

Dr. Kennedy, one of Jake Kennedy and his wife, Sparky’s, four children, was mentored at UMass Chan by Dr. Brown. Zack worked until recently in the lab overseen by Anastasia Khvorova, PhD, the Remondi Family Chair in Biomedical Research and professor of RNA therapeutics. He now is a scientist at biopharmaceutical company CANbridge.

Zack was a lab technician for Dr. Brown when Brown found the gene mutation that causes most cases of familial ALS, a mutation that has affected several members of the Kennedy family. 

“When I started in 2011, there was not a lot of progress in terms of creating medicines. It has been really within the past five years, as gene editing and gene manipulating therapies have started to mature, that we are beginning to have treatments and they are very, very promising,” said Zack. “We’re trying to create the best way to target some of these gene mutations and create a better drug for clinical trials, so in the not-too-far future we can have meaningful
treatments.”

Before Jake Kennedy died, he vowed to raise $1 million for ALS research, Zack said. He and his brother Dean, a football coach at the College of the Holy Cross, are committed to continuing their father’s marathon streak and ultimately reaching his fundraising goal.

Other members of the 2023 UMass ALS Cellucci Fund Boston Marathon Team include:

Kirstyn Grant
Wallingford, Connecticut

Grant is a U.S. patient services lead at Amylyx Pharmaceuticals, which is dedicated to finding new treatments for neurodegenerative diseases such as ALS.

Michael McCorkle
Tequesta, Florida

McCorkle is the senior vice president of workplace strategy at Fiserv, a global leader in fintech and payments, which provided a corporate sponsorship of $25,000. A seasoned marathoner, he made his Boston Marathon
debut this year.

Paul McNeil 
Worcester

McNeil is a friend of the extended Cellucci family. This was his seventh time running the Boston Marathon, which he also ran last year for the UMass ALS Cellucci Fund, raising almost $13,000.