Nearly four years ago, when he was no longer able to work in Boston’s financial industry, Ken Sullivan found a new calling. “My role is to tell my story,” he told the Globe about his decision to volunteer with the Alzheimer’s Association as an early-stage adviser.
In his late 40s, still sporting the look of the natural athlete who had earned a Major League baseball tryout, Mr. Sullivan learned he had early-onset Alzheimer’s disease. To help others, he and his wife, Michelle, went public with his diagnosis — to both address the stigma and to push physicians to be more attentive to the possibility that people his age are susceptible to Alzheimer’s, too.
“A lot of people don’t get diagnosed,” he said in the 2014 interview. “Thankfully, Michelle pushed me to do it.”
In the years since, Mr. Sullivan and his family have raised more than $100,000 for research, primarily through Sully’s Foot Patrol, which participates annually in the Walk to End Alzheimer’s and will do so again Saturday in Plymouth.
Mr. Sullivan, who had lived in Scituate for many years, was 52 when he died June 28 in Bridges by EPOCH assisted living center in Hingham.
Along with their own fund-raising efforts, he and Michelle also lobbied Congress to direct more money toward Alzheimer’s research. Even their daughters — Abby, who is now 15, and Leah, now 13 — helped out when they were younger by raising money with their lemonade stand.
“He had always been involved in charity work even before he got sick,” Michelle said. “He always felt strongly about helping others. That was a big thing for him.”
Mr. Sullivan and his wife also were part of a panel for an AgeLab program at the Massachusetts Institute of Technology, where they discussed financial planning and how families cope with the diagnosis.
Because most Alzheimer’s patients are older, they turn to financial assistance such as Medicare “that are geared toward people who are retired,” said Michelle, who added: “They were curious about our situation.”
At one point, Mr. Sullivan was asked to review a television script for an ABC show that featured a family dealing with Alzheimer’s.
“When Ken was diagnosed we were devastated. We soon realized the only way we would make our way through this journey was to try to find something positive from it and help to find a cure,” Michelle said at his memorial service. “The blessing we found from this experience was being able to actively participate and contribute to research, bring awareness, and raise funds to help find a cure.”
The youngest of four siblings, Kenneth Edward Sullivan grew up in Concord. His father, Kenneth L. Sullivan, was an IT executive, and his mother, the former Joan Sugrue, worked in school administration.
“If typically the baby is spoiled in the family, just multiply that by the nth degree for Ken,” his sister, Karen Baker of Wayland, said in her eulogy. That was partly due to “the fact that he was so adorable,” she added. A magnet for nicknames, Mr. Sullivan was known variously as precious boy, Kenny boy, Sully, or Kenzo.
In Concord, “Ken rode his bike constantly” with his older brother’s baseball cards in the spokes, “making as much sound as he could,” Karen said.
“Ken was an incredible athlete, playing every team sport he could,” she added. “He was captain of his baseball and football teams, and baseball was his true passion. He played third base, did a little bit of pitching, and ultimately was the catcher. He received an invitation to try out for the Cincinnati Reds, and played baseball in college.”
Mr. Sullivan graduated from Concord-Carlisle Regional High School and from the University of Connecticut, with a bachelor’s degree in economics.
In college, as in other parts of his life, “Ken made people better,” Jeremy Stewart, a UConn roommate, said in a eulogy.
“Ken’s passion for life and having fun, his enormous generosity, his fierce loyalty, his leadership skills — those all tie together to making people better,” Stewart said.
Though Mr. Sullivan was “an exceptional athlete,” Stewart added, he also “was super artistic, so much so that I thought he should go into that field — like graphic design or animation. Ken created a cartoon series of each of the characters in our dorm and he always took the lead on our Halloween costumes.”
After graduating, Mr. Sullivan worked in financial services, primarily for Brown Brothers Harriman and for Fidelity Investments. He had also worked as a consultant.
“He took pride in his work and he was meticulous,” his wife said in an interview.
Mr. Sullivan met Michelle Palomera when both were working on a Fidelity project. “I remember he was so excited and could not wait to tell us about her and how beautiful she was,” his sister said in her eulogy. “She was Ken’s rock. And no one could ever ask for a stronger advocate than Michelle.”
The couple married in 2001.
“When I first met him in 1996 I referred to him as RG, code for Richard Gere, who I thought he resembled at the time due to his salt-and-pepper hair,” Michelle said in her eulogy.
Even while working in the finance industry, Mr. Sullivan made volunteering a priority. “Ken . . . was always involved in various charitable organizations, including the Rosie’s Place, United Way, Big Brothers, Habitat for Humanity, she recalled.”
The Alzheimer’s diagnosis redirected his efforts, but slowed him little. He lent his financial expertise to the developmentally disabled at Friendship Home in Norwell, Michelle said. He also volunteered at Bridges by EPOCH in Hingham. “This gave him great meaning and purpose and kept him going.”
She added that “another blessing came in the form of all of the hugs we enjoyed from Ken — more hugs than anyone could imagine. As Ken’s sister, Karen, said, ‘Ken is a gentle soul.’ As Ken entered the late stages of Alzheimer’s disease, a primary way of communication for him was through hugs.
“You could tell how he was feeling by how hard the squeeze was.”
In addition to his wife and daughters, of Scituate; his mother, of West Dennis and Naples, Fla.; and his father, of Scituate, Mr. Sullivan leaves his brother, Gary of Cambridge; and three stepsisters, Jennifer Cardoso of Bolton, Allison Richman of Scituate, and Sarah Servetnik of New York City.
“Some people write their own eulogy and obituary when they find out they have a terminal disease,” Michelle said at the service in July in Scituate. “Ken chose not to do this. He told me early on he could not, and needed to live his life without thinking about the disease. He embraced his life and lived in the moment.”Bryan Marquard can be reached at firstname.lastname@example.org.