Fall 2022 Issue

Foundation Ties

Debi Brooks ’81 is on a path toward Parkinson’s disease prevention

October 3, 2022
By Noah Robertson '19

It was a match made in an elevator.

Debi Brooks ’81 had just finished an interview with Michael J. Fox — who two years before, in 1998, had publicly disclosed his Parkinson’s disease (PD) diagnosis to the world. Fox, known for his roles in the “Back to the Future” film trilogy and TV shows such as “Family Ties” and “Spin City,” had rededicated his life to increased Parkinson’s research, was starting a foundation, and wanted someone with a business background to run it. Brooks already had spent nine years on the fixed-income trading floor at Goldman Sachs; she wanted to work somewhere that would help the world.

But walking down the hall, feeling a mix of nerves and relief at the end of the interview, she tried to convince herself this wouldn’t be it. The conversation had gone well — really well — but was she really equipped to start a research foundation and work with a famous actor? She didn’t even have a science background. Probably, they’d find someone more qualified, she told herself.

Then Fox stopped her at the elevator and asked to ride down together. They did. And outside the lobby of the old Bear Stearns building on Park Avenue in New York City, they spoke on the sidewalk for another half hour.

“Our conversation was completely values-based,” says Brooks. She wanted to use philanthropy capital for good. Fox wanted to found an organization that gave patients space in the world of drug development. “We were just so aligned, and I think he saw in me somebody who wanted to do the best we could do.”

He ended up half an hour late to the next interview, but told her he would call her later and offer her the job. No doubts now, Brooks accepted.

Twenty-two years later, serving as CEO and co-founder, Brooks has helped build The Michael J. Fox Foundation (MJFF) into the largest nonprofit funder of Parkinson’s research in the world and one of Forbes Magazine’s top 100 U.S. charities. To date, the foundation has funded over $1.5 billion in Parkinson’s research programs, dedicating 88 cents of every dollar spent to research.

It all started without a plan. Brooks had heard about the job from a former colleague on a Sunday, interviewed that Thursday, and started the Monday after. She didn’t know much about Parkinson’s — the second-most common degenerative brain disease, affecting 6 million people worldwide — much less expect to spend two decades working to cure it.

That didn’t concern her. From college onward, her career has been a path of almost-perfect accidents, culminating in enormous impact. The hard part, for her, wasn’t comfort in uncertainty. She’s “totally a pop-quiz kind of person.” The hard part was finding the right place to call home, she says. It may’ve happened after a literal elevator pitch, but she found it.

“I feel like William & Mary really helped me see where I belong,” she says. “And I’ve just been building that sense of self in the years since.”

‘WHAT ARE SATS?’

Brooks almost didn’t end up at William & Mary. Her junior year of high school, she didn’t even plan on going to college.

Back in the 1970s, she was moving from state to state and being raised by a single mother. By her junior year, she ended up at a vocational school in Fairfax, Virginia, and was already very independent. Their household income was low and Brooks needed to work to help pay rent.

At her job — one of several she held — at a small sewing shop in the Tysons Corner mall, there was a fellow salesclerk Brooks considered her high school “sensei.” This clerk would spin yarn about Virginia colleges and said William & Mary was the best one in the state.

Brooks’ high school guidance counselor helped her get there. The counselor saw promise in Brooks and kept her accountable. One day, that led the counselor to stop her in the hallway on a Thursday and ask if she was taking that Saturday’s SATs.

“What are SATs?” Brooks asked.

But she took them, fell in love with William & Mary’s campus on a road trip with her mother, and got into the university. Her freshman year, she lived in Barrett Hall and joined the Chi Omega sorority. In four years, she became a resident assistant, studied abroad in Cambridge, England, majored in economics, played intramural lacrosse, worked for the economics department and sold sandwiches at The Cheese Shop.

“I never stopped working,” she says.

THE NONPROFIT WORLD

Brooks didn’t really have a choice. By the end of her freshman year, her mother had moved into a smaller apartment to better afford rent. Brooks had to support herself.

After graduation, she worked at a regional bank in Philadelphia and lived with sorority sisters. She went on to graduate school to get an MBA and eventually found a job on the trading floor for Goldman Sachs. While she loved the fast pace of her role, her clients and coworkers, she could take or leave the markets. By her mid-30s, she wanted something that felt more like a mission.

“I had a tug to find more of a sense of purpose, which is a common phrase now but wasn’t back then,” she says. “In my day, to walk in and resign to go off to the nonprofit sector — people just didn’t do that.”

But she did.

Working with nonprofits felt like a natural destination for Brooks. Her grandmother, an early role model, was very active in the community. Brooks was an avid volunteer during her time at Goldman Sachs. She is a former Girl Scout.

It wasn’t immediately clear where to take her talents. The world of nonprofits is big and wasn’t always inviting to folks with a business background. After getting a master’s degree in social work and spending time at a smaller organization in Boston, Brooks began to think she was suited for a startup.

Cue the downtown meeting with Michael J. Fox, and Brooks had found one.

PATH TO PREVENTION

It came with an enormous challenge. “It was daunting to think about, why don’t we just try to cure Parkinson’s disease,” Brooks says. “But I thought he was the right kind of partner.”

She and Fox, after all, share some qualities. They have similar values. They aren’t intimidated by challenges. They’re both optimists. Those points of continuity have helped make their foundation so successful and built upon Fox’s initial vision.

“This person could make that work,” Fox, speaking on an online “fireside chat,” remembers thinking of Brooks when they first met. That ambition helped Brooks grow the foundation from a fledgling startup to what The New York Times has called “the most credible voice on Parkinson’s research in the world.” When the foundation launched in 2000, there were almost no innovative therapies in development for the disease; since 2014, 18 new therapies have received FDA approval, including some that had early funding support from the foundation.

In 2010, The Michael J. Fox Foundation launched its cornerstone study: the Parkinson’s Progression Markers Initiative (PPMI), intended to better understand the disease and advance new treatments. Since the study’s inception, PPMI has followed 1,400 volunteers with and without Parkinson’s and now hopes to enroll thousands more people, at medical centers around the world and online. By studying specific groups of patients — say those recently diagnosed and not taking medication or those with specific risk factors for the disease — researchers can model what triggers the disease and how to predict whether someone will develop it. Those profiles may help develop treatments in the future that stop the disease before it can begin.

Brooks herself participates in the study as a “control volunteer” — someone who provides data but has no known connection to the disease. She says it’s empowering to hear directly from drugmakers that the information matters, helping to design trials and find the right participants.

Science moves slowly. That doesn’t mean the different stakeholders — from biopharma industry partners to researchers and clinicians — can grow complacent, Brooks says, but it does mean they have to be realistic, find the right partners and empower the people they encounter.

Parkinson’s is a complex, highly variable disease. Every case is different. “I admire the resilience and the determination and the ability for patients to make the most of things,” she says. “It’s not easy.”

Brooks’ time from college onward has been about confronting uncertainty. The people the foundation is trying to help experience uncertainty at a far greater level. But then again, if the disease comes that way, so may a cure.

“Those were ideas we didn’t expect to be there,” says Brooks of the PPMI research. “But we’re on a path to better treatments and maybe even prevention.”

SEARCHING FOR ANSWERS: Since 2010, the Parkinson’s Progression Markers Initiative has followed 1,400 volunteers with and without Parkinson’s to study what triggers the disease.