Ben McCabe has a pre-run ritual in his training for the Boston Marathon®: before heading out, he will kiss the inside of his wrist. It is where he has a tattoo of his father’s signature, and that small gesture reminds Ben of his purpose during the many miles that lead to the starting line on April 21, 2025.
Michael McCabe died of Huntington’s disease — a rare genetic illness that causes nerve cells in the brain to decay over time — in September 2024, at the age of 62. Ben is running in his memory, raising funds for Massachusetts General Hospital to support pediatric cancer research and treatment, veterans’ services at Home Base and the emergency responders who cared for his father throughout his seven-year battle with Huntington’s disease.
“Mass General was a literal lifeline for us,” says Ben, who grew up in Dedham, Massachusetts. “I want to give back to the community who supported him and the rest of my family along the way.”
“Huntington’s disease turned our world upside down. But Mass General was there through it all, providing exceptional medical care, unwavering support and compassion.”
A Passionate Advocate
Ben was 17 years old when his father, Michael, a professional chef who worked at several renowned Boston restaurants, was diagnosed with Huntington’s disease. The family, which includes Ben’s mother, Liz McCabe, and older brother, Oliver McCabe, quickly became passionate advocates for developing new treatments.
Michael shared his story at several events and in videos for the Hereditary Disease Foundation — Michael’s doctor, Diana Rosas, MD, serves on the organization’s scientific advisory board — to raise awareness about the illness. He also participated in clinical trials at Mass General to explore causes and potential treatments for how Huntington’s disease affects movement. Currently, there is no cure for the illness, which affects 41,000 symptomatic Americans and more than 200,000 at risk of inheriting the disease.
“Dr. Rosas was my dad’s go-to person,” says Ben, who is now 24 years old. “Eventually, my dad knew he couldn’t work, but he wanted to help by sharing his story and participating in clinical trials. I’m grateful to Mass General for innovating with these clinical trials for a disease that affects a small portion of the population — it’s what we need to move forward and find a cure for this terrible illness.”
As Michael’s condition worsened, Ben helped with small daily tasks that became harder and harder for his father: buttoning his shirt, helping him shower and eat, driving him to appointments. Ben found it hard not to feel helpless as he watched Huntington’s disease take away the man who loved reggae, cooking French cuisine and taking his boys to Martha’s Vineyard in the summer.
That emotion was especially acute when his father had a few falls and a brain aneurysm that landed him in Mass General’s neurology unit. Throughout that difficult period, Ben, Liz and Oliver found profound gratitude for how Dr. Rosas and emergency responders cared for Michael — and the whole family.
“Huntington’s disease turned our world upside down,” Ben says. “But Mass General was there through it all, providing exceptional medical care, unwavering support and compassion.”
Right on His Shoulder
Ben had moved to San Diego shortly before Michael died, but he still considers the Boston Marathon his hometown race. For both Ben and Michael, a passion for all things New England sports ran deep. Michael loved rooting for the Boston Bruins and the New England Patriots. As a former college lacrosse goalie, he coached Ben on his Dedham hockey and lacrosse teams and watched with pride as Ben played high school varsity and college club lacrosse. After seeing how he cheered at his games, Ben knows Michael would have been one of the loudest spectators on the 26.2-mile route from Hopkinton to Boylston Street.
“I’m doing this to give back to the Mass General team, but it’s also a way for me to honor my dad,” Ben says. “I think about him all the time, and running this race gives me a chance to grieve and remember. And if I’m struggling during my runs and questioning why I’m doing this, I look down at the tattoo on my wrist and think, ‘That’s why.’”
“It’s going to be an emotional day,” Ben adds. “I’m the type of guy who feeds off energy. Hearing those crowds along the entire race is going to be powerful. I know my dad is going to be there, right on my shoulder the whole time.”
If you would like to support Ben, click here.
To learn more about Mass General’s marathon team, click here.
