A self-described “coin nerd,” Stephen Winthrop ’80 began collecting coins as a boy in New York, and over the next five decades—through college, graduate school, and a career advising small nonprofit organizations—he amassed a valuable set of American gold and silver pieces.
But in the summer of 2014, Winthrop decided to sell his cherished collection to advance Harvard research on amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease. Several months earlier, Winthrop got the news that he had ALS, a progressive neuromuscular condition with no known cure and virtually no effective treatment. After the initial shock, Winthrop thought, “I’m going to dig in and try to make a difference. I’m going to try and make the most of the time I have.”
An auction for Winthrop’s coins in February 2015 raised more than $1.3 million for the Stephen Van R. Winthrop Fund for ALS Research at Harvard, established by Winthrop and his wife, M. Jane Williamson ’80, and augmented by contributions from dozens of their classmates. The fund supports a new University-wide initiative to spur collaboration and accelerate ALS discoveries in such areas as stem cell research and brain science. The initiative involves the Faculty of Arts and Sciences, Harvard Medical School, the Harvard Stem Cell Institute, and Harvard-affiliated hospitals including Massachusetts General Hospital, where Winthrop receives his care.
“There is so much exciting work being done at Harvard, and so much more that could be done if only the money were there,” says Williamson.
“It costs about $1-2 billion to bring an ALS drug to market,” adds Winthrop. “We’ve had 50 years of research, and only one FDA-approved drug has come out of that—and I’m on it.”
Diagnosed in the fall of 2013 with a slow-progressing form of ALS, Winthrop had lost most of his left arm strength by mid-July 2015, and his right arm was weakening. Responding to emails was a challenge. But his voice and legs remained strong, and he was walking about seven miles a day.“The good part is that ALS is painless, but in virtually every other way, it is a horrific disease,” he says. “It is an inch-by-inch losing one’s ability to function and interact in the world. The hardest part for me is realizing that ... it’s only going to get worse.”
Despite the heartbreaking reality, the couple feels fortunate to live near world-class Harvard hospitals and have resources to physically adapt their Wayland, Massachusetts, home for Winthrop’s needs. “We think there’s a responsibility that comes with being fortunate—to help the greater community of ALS patients,” Williamson says of their research fund. “This is so much bigger than us.”
They also have each other. Winthrop and Williamson both lived in South House (now Cabot) but, “We had no interest in each other in College. We ran in very different circles,” recalls Winthrop, who concentrated in government while Williamson studied classics (Latin). They reconnected at their 10th Reunion, discovered many mutual interests, married the next year, and now have two teenage daughters. Winthrop is a long-time fundraising leader for their class and an advocate for planned giving (“Raising money for Harvard always has been really important to me,” he says), and they were both co-chairs for their 35th Reunion class gift committee.
At the May 2015 reunion, Winthrop was one of five classmates who shared their personal stories on a panel about coping with adversity. “I spoke about the balance between living in the present and focusing on the future,” Winthrop says. The audience cheered when he said, “I fully intend to be back five years from now at our 40th Reunion.”