Few events are more tragic than the death of a child. When Steven and Carolyn Wortman of Livingston, N.J., lost their first child, Abby, in 2006 to necrotizing enterocolitis (NEC), an inflammatory disease of the gastrointestinal tract that affects roughly one in 20 premature babies, they grieved deeply, but they also resolved that they would keep Abby’s memory alive by doing whatever they could to see that someday NEC would be understood and defeated.

Given how common NEC is in premature births, the Wortmans were surprised to find very little information on NEC research or advocacy groups devoted to the disorder. Steven Wortman, a small-cap mutual fund analyst who oversees small-cap mutual funds for Lord Abbett, a Jersey City, N.J.-based firm, surmises that the apparent lack of support for studies of NEC partly stems from parents’ understandable desire for psychological closure when a child dies from the disease, and partly from the fact that these same parents are usually young, lacking the sort of financial resources to give the disease a high philanthropic profile.

“When you say that your daughter passed away from necrotizing enterocolitis, most people have no idea what you’re talking about,” he says. “Most of the time young parents aren’t in a position to give significant amounts of money, and it’s also a disease where in many cases, parents have another child—not that they get over their loss, but they do try to ‘move on’ mentally.” Carolyn D. Wortman, an accountant for Olympus Capital, a private equity firm in New York City, agrees. “People tend to become reclusive about it,” she says.

One bright spot in a mostly bleak landscape of fruitless Internet searches was the work of the School of Medicine’s R. Lawrence “Larry” Moss, M.D., the Robert Pritzker Professor of Pediatric Surgery and chief of pediatric surgery at Yale-New Haven Children’s Hospital. “The outcome for this disease has improved almost zero in 30 years, but we’re beginning to make some very positive baby steps in the right direction,” says Moss.

In 2006, Moss and colleagues published the results of a six-year study comparing the effectiveness of surgical options for NEC in The New England Journal of Medicine—the first randomized, controlled, multi-center clinical trial in pediatric surgery ever conducted.

“That study sent us in a new and more sophisticated direction in our research, looking at biologic markers that may allow us to predict which babies are most at risk of the disease and at risk for a bad outcome,” Moss says. “We’re beginning to get a handle on this disease, and I think in our lifetime we’re going to see significant improvement.” The Wortmans have no personal affiliation with Yale, and Abby—who was born at 27 weeks, contracted NEC at three weeks old and died two weeks later—was never treated in New Haven. But after reading about Moss’s work they contacted Yale and decided to raise funds to support his research.

“When we told our friends and family about our idea, they really responded to it,” remembers Steven Wortman. “We had a lot of support, and it just kept growing. It definitely helped us heal, and gave us something to look forward to while we were in our grieving process, and it was a way to give our daughter’s life some meaning.”

So far, the Wortmans have raised $46,000 for the Abby Lauren Wortman Fund. With an insider’s eye, Steven says that his admiration for the “unparalleled” record of Yale’s chief investment officer, David F. Swensen, Ph.D., was added incentive to establish the endowment at the School of Medicine, which they hope will grow into an official endowment that will generate significant annual income to support NEC research at Yale.

“What our relationship with the Wortmans illustrates is that Yale has the opportunity, and one could argue, the responsibility to impact patients who will never come to this medical center,” Moss says of the couple’s gift. “What we’re trying to do here is change the field—change the way we treat certain diseases, change the outcomes, change the way we look at premature babies, and develop new treatments that can be offered to affected patients.”

As the Wortmans adjust their routines to care for their 10-month-old son, Ryan, born in June, 2007, Steven says that their fundraising efforts help to keep Abby on their minds. “We want to make some difference in studies,” Steven says. “That obviously takes a lot of money, and this will take a long period of time. But we don’t want this to be a flash in the pan. We want this to be sustained. It allows us to keep her memory fresh.”