In 2014, we saluted Jennie and Richard DeScherer for their outstanding leadership of the SLE Lupus Foundation and the Lupus Research Institute.
Jennie DeScherer first developed signs and symptoms of lupus—viral infections, fevers, rashes, adverse reactions to sunlight, and overwhelming fatigue—when she was a teenager in Charleston, South Carolina. It took nearly a decade before a doctor determined that she had systemic lupus erythematosus, a chronic and often disabling autoimmune disease that affects over 1.5 million Americans—mostly women in their childbearing years. Along with that diagnosis came a referral to the SLE Lupus Foundation, founded shortly before, in 1970, by the Golick family, whose daughter had also been diagnosed with lupus.
The Foundation was a lifeline,” recalls Jennie, who by then was married to Richard DeScherer and living in New York City. “The support we received from other lupus patients and their families was invaluable. And we realized that, for us, an important part of coping with lupus meant helping those affected by it and getting involved in trying to find its cause and cure.”
Indeed, from that moment on, Jennie and Dick DeScherer have been steadfast supporters and pioneering leaders of the Foundation—helping to ensure that it continues to benefit thousands of other patients and families with an expanded range of targeted services, awareness programs, and research toward a cure.
“Thoughtful and forward-thinking” and “thoroughly committed to excellence” are the ways colleagues describe the leadership style of both Jennie and Dick. The chief legal and compliance officer of Bloomberg LP, and a former member of the United Hospital Fund board, Dick leads the SLE Lupus Foundation’s board as president. Jennie, also a longtime board member, has been actively involved in the development and advancement of every one of the Foundation’s program initiatives.
Today, the SLE Lupus Foundation, larger and more diverse in its programs, remains true to its original mission: caring for lupus patients and their families and spurring innovative research. Its programs include support groups, doctor referrals, summer vacation camp for children with lupus and their families, public awareness and advocacy, and model storefront outreach efforts in underserved neighborhoods.
A major goal of the Foundation is to alleviate racial disparities in lupus treatment and outcomes, by focusing on those at greatest risk: young women of color. More than 90 percent of people with lupus are women, mostly between ages 15 to 44, and women of color are at three times greater risk for lupus than Caucasians.
The DeScherers have long been ardent champions of new lupus research. Since the late 1970s, the Foundation has awarded more than 200 fellowships and grants to New York physicians, scientists, hospitals, and laboratories, with the goal of attracting promising researchers and making New York the leader in lupus research.
In 2000, those efforts expanded significantly when the Foundation founded the Lupus Research Institute (LRI), now the world’s leading private supporter of innovative lupus research.
“We listened carefully to our scientific advisory board’s advice—that we could have the greatest impact by supporting bold, out-of-the-box, novel research and funding science across a wide range of medical specialties. Since lupus can damage organ systems throughout the body, this research is a prototype for autoimmune disease research” says Jennie, a member of LRI’s executive committee; Dick, too, serves on the LRI board.
This strategy, backed by a deeply committed board and generous financial support, is clearly increasing the pace of scientific progress. Since its inception, LRI has awarded $42 million in grants to scientists in over 60 academic and medical centers in 21 states. The resulting breakthroughs are enticing pharmaceutical companies to explore new drugs for lupus for the first time in decades. In all, some 84 percent of LRI-supported scientists have gone on to publish innovative results and win further funding for their work: LRI estimates that its support has leveraged an additional $132 million from the National Institutes of Health and other sources.
LRI’s efforts on Capitol Hill are also impressive. It has built an effective national coalition of state and local patient organizations to push for stronger federal support for lupus research, particularly to eliminate racial disparities, and for crucial initiatives such as programs to train physicians to better identify the disease.
While rightfully proud of this progress, Jennie and Dick DeScherer say they “won’t rest” until research leads to better, less toxic, and safer treatments for lupus—and ultimately a cure. The United Hospital Fund honors that commitment by presenting Jennie and Dick with the Distinguished Community Service Award. Through their outstanding leadership of the SLE Lupus Foundation and the Lupus Research Institute, they are giving back multifold to an organization that profoundly helped them—and in doing so, are helping to transform the lives of countless others, while pushing forward the frontiers of new science on lupus.
Reprinted from the 2014 United Hospital Fund Gala program.