A Foundation Follows a Familiar—and Promising—Playbook in Tackling a Debilitating Disease

 photo:  Chutima Chaochaiya/shutterstock

photo:  Chutima Chaochaiya/shutterstock

There are various avenues through which philanthropies develop a deep interest in a funding cause. Often, it is through their officers’ compassionate contact with individuals or communities in need. But in some cases, it is through more personal experience and hardship. We’ve seen that impulse in the case of the Leona M. and Harry B. Helmsley Charitable Trust which became a leader in the oft-neglected field of type 1 diabetes after the daughter of a Helmsley grandson and foundation trustee contracted the disease. Another example is the Conrad Hilton Foundation’s burgeoning contribution to research on multiple sclerosis. Marilyn Hilton—the wife of Barron Hilton, and mother of Steven Hilton, the longtime former CEO of the foundation—was an MS sufferer for most of her adult life. This personal backstory explains how the Hilton Foundation came to devote funding to a search for an MS cure, as well as treatments to reduce MS suffering.

About one in 750 people have a chance of contracting MS, which is a debilitating disease of the nervous system. Current research suggests that the condition is triggered by an environmental event among people already genetically predisposed to contract the disease, but its precise causes remain unknown. Most but not all MS sufferers are between the ages of 25 and 50, and women are two to three times more likely than men to develop MS. There are also several types or “courses” of the disease, the two most dominant involving a progressive worsening of neurological function and body control.

The Hilton Foundation’s funding around MS goes back a number of years. In 2001, an initial Hilton grant of $1.5 million led to the creation of the Marilyn Hilton MS Achievement Center under the joint auspices of the National MS Society’s Los Angeles chapter and the Department of Neurology at UCLA. For a long time, it was the only day center for MS patients on the West Coast. It’s now considered a national model. The center offers no advanced research or treatment regimens but simply works to keep members and visitors—about 25 per day—more physically fit while lessening their isolation, a common problem for those with MS.  

In 2014, the foundation established the Marilyn Hilton Award for Innovation in MS Research. In a pattern we have seen elsewhere in philanthropy for disease-specific medical research, especially cancer, Hilton has directed its grantmaking efforts in support of “innovative and risky research projects which have the potential to create significant change.” Most of its most recent grant recipients are young and exceptionally bright scholars in the early stages of their careers—not veterans with established research agendas. The foundation’s intent is to “identify groundbreaking research which may not have received funding from traditional sources, but with potential to greatly improve the lives of those living with MS.”

Recently, the Hilton Foundation announced its fourth annual Marilyn Hilton Award recipients in two categories: the Bridging Award for Physician Scientists and the Pilot Innovator Award, totaling $4 million in funding. The four Bridging Awards are intended to support postdoctoral fellows making the transition to faculty, and are funded in the range of $390,000 to 620,000 over 5 years. The 13 Pilot awards are shorter and smaller, roughly $120,000, and are intended to allow younger scholars to establish “proof of concept” that will allow them to qualify for much larger NIH or National MS Society awards.

It turns out that some of the Hilton grantees have also struggled with MS in their families. “My interest in studying multiple sclerosis was inspired by my father’s struggle with the disability he developed due to MS,” said Jennifer Orthmann-Murphy of Johns Hopkins University, one of this year’s Bridging Award recipients. “After over 20 years of accumulating physical limitations, my father is no longer the athletic, energetic lawyer of my youth, and cannot work or even provide his own self-care. This understanding of the devastating effects of progressive MS on my father, and my family, is the basis of my passion to understand the basic mechanisms of progressive disease.”

The Conrad N. Hilton Foundation gives away over $100 million annually and has an endowment of $2.6 billion—which will dramatically increase when wealth from Barron Hilton’s estate is made available for grantmaking. Hilton is best known for its programs aimed at eradicating homelessness and preventing and treating HIV/AIDS and substance abuse. It also has a strong interest in supporting public health and safe drinking water in sub-Saharan Africa.

It’s often said that "the personal is political.” But with MS, it’s also a powerful motivator for dedicated, family-based philanthropy. And while private disease funding from foundations tends to pale in comparison to federal research spending—the National Institutes of Health gave out $97 million in grants for MS in FY 2016—a strategic focus on edgy research and cultivating new talent can mean a lot of bang for the buck. On MS, Hilton is following a playbook that is both familiar and promising.