Jill Powers’ childhood was characterized by grilled hot dogs and caramel Cracker Jacks on Red Sox Opening Day, colorful water balloon fights at the bus stop on the last day of school and sliding into home plate with her softball teammates.
Those memories were orchestrated by her mother, Nancy Powers, decades before a painful diagnosis changed their family’s life forever.
Jill Powers recalled her family gathering in her Andover childhood home –– normally the backdrop for joy and laughter –– for a difficult meeting in July 2022. A manila envelope enclosed the diagnosis: Nancy Powers had ALS or amyotrophic lateral sclerosis, a fatal, progressive neurodegenerative disease.
Nancy Powers fought ALS for almost another two years until she died last June.
As Jill Powers prepares to run the Boston Marathon today, April 21, her mother is at the forefront of her mind. Jill is one of 35 Andover residents running and she is tackling the marathon in support of the ALS Association.
A lot is at stake this year, Jill Powers said. She’s raised $15,000 so far, and this money comes at a time when ALS research is being threatened by federal funding cuts to National Institutes of Health, according to the ALS Association.
This story was published as part of a collaboration between Andover News and the Department of Journalism in Boston University’s College of Communication. The student journalist is a member of Professor Meghan E. Irons’s Reporting in Depth class.
“I’ve strengthened my own sense of personal motivation and discipline,” she said, “but (marathon training) has also given me an outlet to process everything that I felt in the last year since my mom passed.”
The federal cuts will hurt ALS research, said Carol Hamilton, senior vice president of development at ALS Therapy Development Institute, a research organization that worked with the Powers family after Nancy’s diagnosis.
“(ALS) is incurable… because it’s underfunded,” Hamilton said. “It doesn’t need to be incurable. We are at a point now where the view towards effective treatment is within sight.”
Nancy Powers was active in the Andover community for over 25 years before her diagnosis. In the early 1990s, she helped build Andover Youth Services and later, founded its field hockey program. She also coached youth softball.
“She probably coached hundreds and hundreds of kids throughout her time,” Jill Powers said. “My team, my sister’s team, every year from kindergarten into high school.”
Powers said her mother started experiencing pain in her foot in April 2021, but doctors only pinpointed ALS a year later, after numerous misdiagnoses.
Nancy Power continued to work as an administrative assistant until January 2023, Jill Powers said.
“She was steadfast and strong,” Jill Powers said. “As time goes on, you see weakness (because of the disease), but you rarely saw it in her. She was like, ‘OK, this is the case. I’m going to keep living.’”
While their mother battled this disease, Jen Powers encouraged her younger sister Jill to run her first half marathon. Jill had been looking for a way to begin training, and Jen knew she’d be more committed if they signed up together. Jill Powers began running marathons in 2023 to raise money for research and charities, such as the nonprofit Compassionate Care ALS.
“Jill had despised running… but she set her mind to it and ran a half (marathon) and did great,” Jen Powers said. “She wanted to find a way to really make a big impact, and running ended up being the lane to do so.”
Jill Powers’ training for the Boston Marathon included running up to 22 miles on early Saturday mornings at Heartbreak Hill Running Company in Newton. She said she has raised almost $15,000 since November — crushing her original goal by $5,000 — through support of her friends and family.
“People coming out of the woodwork is a sign that what I’m doing is not pointless,” Jill Powers said. “I’m not just like running a marathon, to run a marathon. I’m inspiring people, which was my number one goal when I wanted to run a marathon for ALS.”
In addition to honoring her mother, Jill Powers said she is running the marathon to push “the limits” that her body can go, overcome “hard things” in life and put a spotlight on a terrible disease.
She said she hopes that the money she raises will support families facing ALS and pave the way for future research. ALS impacts approximately 30,000 people in the U.S., but there is no official test to diagnose the disease, according to the Centers for Disease Control and Prevention.