Why a Relatively Small Funder Made a Big Donation to Study Neglected Diseases

When Lawrence Moss, the president and CEO of Nemours Children’s Health in Wilmington, Delaware, approached the Lisa Dean Moseley Foundation about funding a new institute for cancer and other blood disorders, William Martin, the president of the foundation, was taken by surprise. At $78 million, the price tag was steep for the small, relatively new foundation. 

“It was a large ask,” Martin said. But the more he and foundation board members looked into the project, a state-of-the-art facility that will provide both research and treatment for young patients with cancer and blood disorders, the more convinced they became that it aligned with the goals Lisa Dean Moseley set out when she created the foundation.

In 2004, Moseley, an heir to the du Pont fortune, worked with Martin, her longtime legal counsel, to set up the foundation, and was active in its operations in the years before her death in 2016. Since its founding, the foundation has made smaller donations to Nemours Children’s Health to support research there. It has also provided funding for research at the Delaware-based ChristianaCare Helen F. Graham Cancer Center and Research Institute, the Children’s Hospital of Philadelphia, Johns Hopkins School of Medicine, and the American Cancer Society. In February, the American Cancer Society announced that it is partnering with the Moseley Foundation to provide $9.8 million for a new research consortium to support cancer stem cell research. 

“From the beginning, the foundation was intended to provide funding to support medical research,” Martin said. “In particular, from the outset, Lisa had an interest in promoting stem cell research. Lisa felt that regardless of the whims of governmental funding, her foundation should support pure research. She was a big believer in science and the potential that science offers to find solutions to many of the hideous diseases that society suffers from.”

Funding for a neglected disease

The $78 million gift will allow Nemours to create the Lisa Dean Moseley Foundation Institute for Cancer and Blood Disorders on the fifth floor of the existing children’s hospital. 

One of the diseases it will target is sickle cell, a painful condition that can lead to stroke and organ damage, and disproportionately affects African Americans and other minorities. The new funding will create an endowed faculty chair focused specifically on sickle cell disease (SCD) and reducing disparities in support for research and treatment of the condition, which are badly underfunded. Citing a study showing that, because of insufficient support, “sickle cell clinical trials are half as likely to be completed and published as other trials,” Nemours calls SCD “one of the most profound examples of race-based inequity in the U.S. healthcare system.” 

Philanthropy has largely gone missing when it comes to funding for SCD research and care, as my colleague Paul Karon wrote in 2021. The Doris Duke Charitable Foundation, which has provided significant support, is one exception. Other funders, including the Robert Wood Johnson Foundation, the Thrasher Research Foundation and the Bill & Melinda Gates Foundation, have also offered occasional funding, but have not made it a priority. 

The Lisa Dean Moseley Foundation is small compared to health funding behemoths like Gates and RWJF. In 2020, its assets were $120 million according to ProPublica. It doesn’t have a website, and besides the board of directors and William Martin, who administers the foundation out of his small law practice, has little infrastructure. So the $78 million gift was not only a large ask, “it’s a significant portion of our net worth,” according to Martin. 

The focus on sickle cell disease was one of the reasons the foundation decided to go ahead with such a significant gift. “Sickle cell disease has been hideously underfunded,” Martin said. “Going back to what I said earlier about Lisa’s predilection toward funding areas that have been overlooked for a variety of reasons, the fact that we could support Nemours’ efforts and hopefully find a cure for sickle cell disease, or at least better treatments over the next 10 years — that was a very positive aspect of the proposal that appealed to the foundation.”

Tricycles and therapy dogs

The new institute will include 48 new inpatient beds and other treatment and supportive care services for patients and their families; it will also have isolation areas for immunocompromised patients, expanded clinic and infusion room capacity, and other services to treat children with cancer and blood disorders.

Nemours’ size and geographic spread enhances its ability to conduct in-depth research. The health system has three locations where it enrolls kids in clinical trials: Orlando, Jacksonville and Delaware, said Kevin Carraccio, Nemours senior vice president of philanthropy. “We get geographic diversity, socioeconomic diversity, racial diversity and environmental diversity in terms of environmental exposures.”

The new institute, like all of Nemours children’s facilities, is intended to be kid and family friendly, with lots of light and plenty of space for young patients to get out of bed when they feel up to it. “We know that bed isn’t the best place for healing,” Carraccio said. The facility will have wide corridors and areas where kids can ride tricycles, play with siblings, even interact with their pets or therapy dogs. “We want to create an active environment where kids are welcome, when they feel comfortable and well enough, to do what they're supposed to do, which is to walk and play and interact with each other and with their environment.”

Carraccio points out that the design of its children’s facilities supports not only patients and families, but also the quality of the research. 

“If kids and their families don’t feel comfortable enough, if they don’t feel safe enough, if they aren’t supported well enough by the space, they're not going to complete the trials.” he said. “So our pitch to the Moseley Foundation was, ‘Help us build the ideal environment.’ If we design the right environment, which the foundation agreed to help us do, then we're going to be able to push research further.”

The new funding will also endow a second faculty chair to support pediatric care and research, create a laureate program to support cross-disciplinary research, and fund an annual international symposium. Thirty-eight million of the Moseley gift will support endowed initiatives; Nemours will need to raise additional funds to complete the new institute.

After its recent support for the American Cancer Society, Nemours, and other grantees, Martin doesn’t foresee the foundation making new funding commitments in the immediate future. “Private foundations have the 5% spending requirement; we don't have that problem anymore,” he said. “I think we’ve found our niche for right now and rather than dilute it any further, I'd like to focus on the efforts that our partners are already committed to. We have a significant amount of work to do, just to see the results of the research that we've already funded.”

Family affairs

The sprawling du Pont clan, long one of the richest families in the country, is ubiquitous in their home state of Delaware, so it's probably not a surprise that Lisa Dean Moseley and Nemours Children's Health share a family connection. Alfred I. du Pont, an industrialist and scientist, established a trust which led to the formation of the Nemours Foundation (named after the area in France where the family had its origins) in his will. He died in 1935, at a time when polio left many children with life-long disabilities; he wanted his estate to be the site of a hospital for disabled children. In its early years, Nemours Children’s Health was a children’s orthopedic hospital, but in 1976 it expanded the focus to include other childhood diseases. The hospital is located on the former estate, which features French gardens, a reflecting pool, turtle ponds (du Pont reportedly loved turtles) and statues. The hospital overlooks the gardens, which are open to patients and their families, and to the public. 

Lisa Dean Moseley, whose mother was a du Pont, was born in Wilmington and grew up just a mile and a half from Alfred du Pont’s estate (they are thought to be cousins). She was a skilled gardener whose gardens were included on estate tours, and avid golfer. Her life was both privileged and tumultuous, as she was linked to several scandals over the years.

William Martin, who knew Moseley well and considers her a friend, describes her as dynamic, charismatic, and blunt. “She spoke the truth and expected it from others,” he said. Because the foundation was established before her death, Lisa Dean Moseley had the chance to influence its formation, which gives Martin confidence that she would approve the direction it's taking now.

“Sometimes for estate planning reasons, philanthropists wait until they pass and then a private foundation is formed after their death,” he said. “We felt that it would be better to get the foundation up and running during her lifetime, so our board could get a better sense of what her goals and missions were. She had the opportunity to evaluate how the foundation performed during her lifetime.”