Upon being diagnosed with ALS, Stephen Winthrop experienced “a blend of disbelief, anger, anguish, and fear,” he would recall. And then he got to work.
He gave of his time and his money, of his business acumen and his body. He participated in more than 20 studies and — as tirelessly as possible while his health waned — encouraged other patients to help move research forward. He became the first person with amyotrophic lateral sclerosis to chair the national board of the ALS Association.
“I keep coming back to the idea that I am not going to do nothing,” he told Massachusetts General Hospital’s magazine two years ago. “It motivates me several times a day.”
Mr. Winthrop, who raised more than $5 million for ALS research and other programs through his family’s efforts and initiatives he helped set in motion, was 60 when he died Dec. 24. In his last years, he lived in a Wayland home that he and his wife, M. Jane Williamson, designed to enhance the lives of those who, like Mr. Winthrop, face a decline in physical abilities.
At the annual Walk to Defeat ALS in October 2015, he spoke to the crowd about balance — a word that had become more than a metaphor in the two years since his diagnosis.
“For me, balance means facing my ALS without being swallowed up by it,” he said.
“I try to set ALS aside and find joy in every corner of my life whenever I can,” he said, though “hard as I may try, aspects of my ALS are always there. I can no longer write, and simple things like getting dressed or carrying a plate of food are a struggle. I have accepted ALS, but I’m not resigned to it. In fact, I’m fighting it like hell.”
Mr. Winthrop “was an eloquent bridge between so many different aspects of this disease, and everything he did was in a very deliberate and thoughtful manner,” said Calaneet Balas, CEO of The ALS Association, which presented him with a Heroes Living with ALS Award two years ago.
Part of Mr. Winthrop’s legacy can be found in the results of clinical drug trials, and in the blood and tissue samples he donated for research. Just as important, Balas said, was the example he set.
“He was incredibly thoughtful, always gracious and really tried to look at things globally from the patient’s perspective — the person with ALS,” she added. “I often say that he was a gift.”
Mr. Winthrop and his wife both participated in studies — she sometimes was part of the control group — and they set up a website that incorporates their last names: willwinagainstals.org. He also spoke with physicians, researchers, and drug manufacturers, encouraging them to closely consider the experiences of patients.
“He did all of this with the community in mind, with other people with ALS in mind,” said Dr. James D. Berry, chief of the division of ALS and motor neuron diseases at Mass. General.
“Stephen was a thinker and really spent a lot of time trying to understand things thoroughly,” added Berry, who was Mr. Winthrop’s personal physician and is the first Winthrop Family Scholar, a position made possible through his friend’s philanthropy. “His legacy is one of building community between people with ALS and researchers to fight this disease. And I will miss him dearly.”
A descendant of the Massachusetts Bay Colony’s first governor, John Winthrop, Stephen Van Rensselaer Winthrop was born in New York City. His father, Nathaniel Thayer Winthrop, was a prominent lawyer whose first marriage had ended in divorce. As with his first marriage, Nathaniel’s marriage to Eleanor R. Beane of Cambridge produced four children.
Mr. Winthrop “called himself the runt of the second litter,” said his wife, Jane. Twenty-two years separated Mr. Winthrop and his oldest sibling.
“I grew up the youngest of eight children in the largest city in America. I’ve always been surrounded by people. And yes, I love it,” Mr. Winthrop said in 2015, when he received the Arnold Kerzner Award for community service from Human Relations Service, a Wellesley-based community mental health agency whose board he had led.
“That love of people,” he added, “is perhaps part of the answer to what makes me tick.”
He went to Milton Academy “and graduated in three years because he ran out of things to take,” his wife said. Mr. Winthrop held off heading to Harvard University and spent a year at Phillips Academy.
In 1980, he graduated from Harvard with a bachelor’s degree in government and he spent one undergraduate summer working on Ed Koch’s first winning mayoral campaign in New York. Mr. Winthrop “was a lifelong, very liberal Democrat,” his wife said.
They were in the same class at Harvard and lived in the same house but did not become a couple until their 10th reunion, when they “fell smack-dab in love,” she recalled.
“I left our reunion weekend able to think of little else but her,” he wrote in the 25th anniversary report of their Harvard class. She was a lawyer at the time. They married the following year, in 1991.
After college, Mr. Winthrop worked for the Penn & Schoen polling organization, and then did graduate work for a joint degree — a master’s from the Johns Hopkins School of Advanced International Studies and an MBA from Wharton School at the University of Pennsylvania. He considered but decided against pursuing a career in the Foreign Service.
Mr. Winthrop subsequently was a management consultant for Strategic Planning Associates in Washington, D.C., before forming his own consulting business to work with nonprofits. He set that aside when he and Jane settled in Wayland and were raising their two children.
“He was going to see as much of their growing up as possible,” she said. “He was a super-involved dad.”
Their daughters, Casey and Hannah, were 16 and 12 when Mr. Winthrop learned in November 2013 that he had ALS. He had a slow-progressing case, which provided more time for him and his family than is afforded to many who are diagnosed.
“I am trying to squeeze as much quality and joy out of every day as I can,” he wrote in his 35th Harvard class report, in 2015. “I am trying to strike a balance: on one hand, living in the moment and making the most out of every friendship and relationship that I have; on the other hand, devoting as much energy and other resources as I can towards fighting and beating this awful disease.”
In addition to Jane, Casey, and Hannah, Mr. Winthrop leaves five siblings, John of Charleston, S.C., and Greenwich, Conn., Serita of Rhinebeck, N.Y., Nat of Montpelier, Vt., Katharine of Bernardsville, N.J., and Nina of New York City.
Family and friends will gather to honor Mr. Winthrop’s life at 2 p.m. Saturday in First Parish in Wayland, a Unitarian Universalist Church.
Mr. Winthrop “would talk to any patient who was newly diagnosed,” Jane recalled, “and oftentimes he would say, ‘Would your wife like to talk with my wife?’ He said it was our ministry.”
In his speech for the Kerzner award, Mr. Winthrop said that he had “come to believe that people are good.”
“I believe that each of us in this room has it in us to be even better,” he added. “Some of us need to be nudged every once in a while. ALS was my nudge. In the last 18 months, I have started to enjoy every beautiful moment just a little bit more. I am also trying to recognize and verbally encourage goodness and kindness in others whenever I see it. I try to express why I am grateful for someone’s friendship, or to say something nice to a stranger when I am a witness to good.”
Bryan Marquard can be reached at firstname.lastname@example.org.