The Quest to Cure Parkinson's

One step at a time: Under Hood’s leadership, the Michael J. Fox Foundation has worked to change how medical research works.Laura Barisonzi

On a bright October morning, hundreds of participants are gathered at the New York Academy of Sciences for the fourth annual Parkinson’s Disease Therapeutics Conference. Sponsored by the Michael J. Fox Foundation for Parkinson’s Research, the conference is a convergence of key stakeholders from major pharmaceutical and biotech companies; academic researchers from the U.S., Europe, and Asia; representatives from the U.S. Food and Drug Administration and the National Institutes of Health; and Parkinson’s patients eager to hear the most recent developments in the ongoing and elusive search for a cure.

Working her way through the crowd is Katie Higgins Hood ’96, CEO of the Michael J. Fox Foundation (MJFF). She’s been up since 4:30 a.m., having caught a predawn flight from Washington, where she’d attended the 2010 Fortune Most Powerful Women Summit, an invitation-only event this past fall that attracted prominent women leaders in business, philanthropy, government, education, and the arts. Despite her lack of sleep, Hood exudes energy. She segues easily from talking about protein kinases and alpha-synuclein assays with a cohort of clinical researchers to asking an attendee with Parkinson’s about his treatment protocol.

Actor Michael J. Fox, who was diagnosed with Parkinson’s in 1991, may be the most recognizable public face of the disease, but Hood is in charge of both the big-picture strategy and day-to-day tasks of advancing the MJFF mission. “Our goal is to cure Parkinson’s and put ourselves out of business,” Hood tells a first-time participant, as people finish coffee and pastries and head into the day’s opening session. “Michael always talks about purity of motive, and as long as everything we’re doing is in line with that end goal, then we’re on the right track.”

Parkinson’s is a progressive, neurodegenerative disease that occurs when cells in the brain that produce dopamine deteriorate. The onset of symptoms happens gradually—a slight hand tremor, imbalance, rigid limbs—and these tell-tale indicators typically don’t appear until dopamine loss is significant. By the time most patients learn definitively that they have Parkinson’s, their brains’ dopamine levels are only 20 to 40 percent of those in healthy brains. Nearly 5 million people globally have the disease, and while pinpointing the underlying cause remains elusive, Parkinson’s researchers—like their counterparts studying other neurodegenerative diseases, such as Alzheimer’s—are focusing on the interplay between genetic and environmental factors.

As the conference gets under way, Hood takes the stage to make introductory remarks to the group. Throughout the day, she acts as convener, host, and connector. She seems to know most of the people in the room and is adept at introducing people with similar or complementary interests. Experts from around the world discuss novel therapeutic targets and new research tools—the utility of animal models, clinical trials of gene therapies, public-private partnerships, and treating the serious and prevalent side effects of Parkinson’s drugs. Participants listen intently, take notes, and vigorously question—and at times disagree with—what they hear.

With Hood at the helm, the MJFF is not only expediting the quest for Parkinson’s treatments and, eventually, a cure; it is also changing the way medical research foundations conduct business. “When we looked at the landscape of what was being done around Parkinson’s, there was a complete void between basic research and clinical applications,” she says. “So we made the bet that by putting money into translational research, we are building a bridge that makes it less risky for companies to get involved in Parkinson’s research, encourages collaboration, and ultimately provides leadership and consensus around a shared goal.”

Since the MJFF was launched in 2000, it has become “the most credible voice on Parkinson’s research in the world,” according to a November 2008 article in The New York Times. Internationally, it is the largest private funder of Parkinson’s research and is a close second in overall spending behind the U.S. government. To date, the foundation has funded more than $230 million in research grants. In 2010 alone, the MJFF reviewed more than 600 grant applications for Parkinson’s disease research, raised $57 million, and awarded $50 million in new grants. Hood notes that the foundation has no endowment; it raises new money every year, with eighty-seven cents on the dollar going straight to research initiatives, as it has since its inception.

After the conference’s lunch session, Hood again takes the podium to introduce a surprise guest: Michael J. Fox himself, who receives a standing ovation as he makes his way to the front of the room. He begins his brief remarks by observing that one doesn’t have to be a scientist to know that science affects one’s life.

As a newly diagnosed Parkinson’s patient in 1991—he didn’t go public with his diagnosis until 1998—he longed for a primary, go-to institution devoted solely to life-threatening diseases: “a Department of Cures or a Secretary of Cures, but of course, that’s not the case. The answers are not going to fall from the sky, so we have to build and climb the ladder to get to them.” He downplays his role in MJFF’s success. “I only had to be smart enough to find people smarter than me—people like [foundation cofounder] Debi Brooks and Katie Hood.”

Katie Hood grew up in Wilmington, Delaware, the oldest of three children born to James K. Higgins, a corporate lawyer, and Barbara Lennox Higgins ’68, a stay-at-home mom. (Hood’s brother James L. Higgins graduated from Duke in 2001.) At a young age, Hood aspired to be a U.S. Senator “because I’m a problem solver by nature, and I wanted to be solving problems on behalf of people.”

She was also an athlete, playing basketball, and a baseball fan, rooting for the Philadelphia Phillies. “My family was always very focused on academic achievement, but it was my dad who really encouraged me to play basketball because I was shy and reserved. It was a huge part of my growth to learn how to be a team member and to become really good at something besides school.”

By the time she was accepted to Duke, Hood’s interest in service to others had evolved, and she signed up for premed courses with an eye toward the medical profession. But as part of a first-year public policy seminar with Robert Korstad, the Kevin D. Gorter Professor of public policy and history, Hood and her classmates were asked to write a paper about something they wished they could change about Duke. Even though she’d just arrived on campus, Hood had already observed that there was a distinct disconnect between students’ academic pursuits and social activities, particularly for women. Korstad handed back Hood’s paper with a handwritten challenge: What are you going to do about it?

Hood embraced the challenge and helped launch a mentoring program to help freshman women acclimate to college life. In her junior year, she was elected president of the Panhellenic Council; in that capacity, she helped broaden the conversation about women’s issues beyond sorority life to include heightened awareness of and resources for eating disorders, wellness and safety issues, and the need for sorority meeting space. “One of the things I learned at Duke is that you can effect change from outside the system or from inside the system,” she says.

As she honed her own leadership style, Hood says she had the benefit of observing and learning from Nannerl O. Keohane, Duke’s first woman president, who took office in the summer of 1993. “When Nan arrived, everything changed in terms of women’s issues and leadership,” Hood recalls. “I think women felt validated by her—not only because here was a woman leading Duke, but because she was so strong and not afraid to articulate challenges facing the community. She encouraged not only a true understanding of these challenges, but also the development of practical solutions to address them.”

On her way back to campus for her senior year, Hood and her father talked about what her plans after graduating might be. By then a public policy major, Hood was considering a number of options, including law school. A few weeks later, Hood’s father wrote a letter urging her to think more ambitiously about her future. “He told me that he wasn’t so sure that being a lawyer was going to use my skills the right way,” she recalls. “He told me he saw me in a dynamic business environment where I was working with people, building a team, and making very high-level decisions about the way the organization was run. I think it’s interesting that my dad had so much insight that I clearly didn’t have about what the right path would be for me.”

Hood worked for Goldman Sachs after graduating, and then returned to Duke to work at the Hart Leadership Program for a year. (“People thought I was crazy,” she says of her decision to step off the business career fast track.) She went on to earn her M.B.A. from Harvard Business School, where she was particularly drawn to the theories and applications of innovative philanthropy. (It’s also where she met her husband, Aaron Hood, partner and chief financial officer of the corporate advisory and asset management firm Perella Weinberg Partners. The couple now has three children under the age of six—sons Griffin and Nicholas and daughter Finley.) In 2002, while working as a consultant at Bain & Company, Hood realized her professional career was intellectually stimulating, “but it was not something I was passionate about.”

Through 85 Broads, a networking organization for women who worked at Goldman Sachs, Hood contacted Deborah Brooks, who had cofounded MJFF with Michael J. Fox and had served as the foundation’s president and CEO since October 2000. They met at a Starbucks on Park Avenue South, and Hood queried Brooks about how she made the transition from nine years at Goldman Sachs to the nonprofit sector, with an eye toward working for a nonprofit herself in the somewhat distant future.

“In the foundation world,” says Brooks, “you often encounter people who want to get involved because of the nobility of the cause, but we wanted people who were passionate about making an impact. Katie wanted to bring her analytical skills and business acumen to something she cared passionately about, to do work that was transformative. I knew within a matter of minutes that she would be a great hire.”

Brooks offered Hood a job on the spot, Hood accepted, and the two women have worked together closely ever since. Brooks stepped down in 2007 when her family relocated, and while Brooks stayed on full time to work in a fundraising and senior strategy role, Hood took her place as CEO. The following year, Hood was named to the advisory council to the National Institute of Neurological Disorders and Stroke (NINDS), an eighteen-member board that advises the U.S. Secretary of Health and Human Services, the director of the National Institutes of Health, and the director of NINDS on setting research funding priorities and related matters for neurological diseases, including Parkinson’s.

Part of MJFF’s success has to do with the nimbleness with which it can allocate grants. The traditional paths for new drug development, whether through public or private research efforts—government agencies, drug companies, or academic institutions—take, on average, approximately $1 billion and more than a decade of research, mixed results or setbacks, revised research, clinical trials, and—if everything goes just right—FDA approval, to make it to the marketplace. MJFF has an in-house scientific staff that includes M.B.A.s, Ph.D.s, and M.P.A.s, and regularly interacts with hundreds of researchers and clinicians from industry and academe who advise on an ad hoc basis and stay apprised of the most innovative developments in diagnosing and treating Parkinson’s. When the staff sees an initiative that shows early promise, it can fund additional research without having to worry about quarterly financial reports to stockholders (as major drug companies do) or whether the research is likely to lead to publication in a scientific journal (as academic researchers do).

“The Fox Foundation is the one player in the drug-development ecosystem that single-mindedly shares the patient’s goal of finding a cure,” says Hood. “If you are a researcher, you have to worry about getting grants and tenure, and if you’re a drug company, your primary purpose is to have a profit. Yes, you also care deeply about a cure, but you have these other concerns as well. So we can help make things happen faster, and take risks that the other players can’t.”

Peter Reinhart, president and chief scientific officer of the private biotechnology company Proteostasis Therapeutics, has witnessed firsthand how the MJFF helps break down barriers across disciplines. Reinhart worked in Duke’s department of neurobiology for twelve years (he maintains an adjunct associate professor appointment), then worked for drug companies Wyeth Pharmaceuticals and Pfizer, with a special focus on Alzheimer’s, Parkinson’s, stroke regeneration, and ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s disease.

When he left Duke, his academic colleagues joked that he was “going over to the dark side,” while his peers at Wyeth were initially wary of accepting money from the MJFF. “They had never received private foundation grant money before and weren’t sure how to process it or whether to publicize it,” he says. Reinhart helped build Wyeth’s neuroscience division to focus on neurodegenerative diseases more broadly, including Parkinson’s and Alzheimer’s. “These are protein-aggregation diseases, so the concept is that what you learn about one disease can have applicability to others.”

Reinhart says that the MJFF encourages creative risk-taking among researchers “because they are open-minded enough to say, we want you to compete, and we will reward the best ideas out there. They’re just interested in funding research that leads to improved therapies and cures. They’re not bogged down in the what-ifs of what might happen ten years down the road.”

MJFF grant recipient Mark Stacy, associate dean for clinical research at the Duke University School of Medicine, says the foundation’s resources and stature are indispensable to the Parkinson’s community. “The foundation’s scientific staff are a terrific sounding board for helping develop good, novel ideas into fundable ideas around early diagnosis and treatment of Parkinson’s,” he says. “And an endorsement by the MJFF confers credibility; it signifies to Parkinson’s stakeholders that your work is promising.”

Todd Sherer ’95 was an early recipient of a research fellowship grant from MJFF, in 2003, for postdoctoral work he was doing on the role of environmental factors in causing Parkinson’s. Hood and MJFF cofounder Deborah Brooks recruited him to join the organization in the spring of 2004, and he was promoted to chief program officer this past November, in large part because of the critical role he has played in developing the MJFF’s distinctive model of funding research. “Todd is an excellent scientist, but his impact at MJFF has been due to the fact that he also brings a strong instinct about shaping approaches that result in faster progress,” says Hood. Sherer oversees the scientific team that reviews grant applications and makes sure that, in his words, “no good idea goes unrewarded.”

Biomedical research is unpredictable and expensive, he says, and many hypotheses that show initial promise ultimately fail. Rather than take a conservative wait-and-see approach to funding, the MJFF philosophy centers on taking informed, calculated risks. “If we fund a grant and prove definitively that the hypothesis it’s based on is not worth moving forward with, that’s successful, because next time around, we know where to prioritize money,” says Sherer. “If we fund a project and the outcome is that we’re not sure whether it’s worth pursuing or not, that’s not a successful outcome, because then we might end up funding another similar project just to continue testing that hypothesis.”

The foundation’s impact in the scientific, pharmaceutical, and foundation communities has already created a ripple effect. Duke professor of law and public policy studies Joel Fleishman, author of The Foundation: A Great American Secret—How Private Money Is Changing the World, says that for any foundation to be successful, “it has to decide what it’s not going to do before it can establish what it wants to do. The Fox Foundation decided early on that it wanted to focus deliberately and exclusively around finding better treatments and a cure for Parkinson’s. Bringing together lots of different stakeholders around a common goal is not something that a lot of foundations can do. The Fox Foundation has changed the way that medical science research works and the way that foundations now think about their business model.”

The secret of his success: Hood and her boss—and foundation namesake—Michael J. Fox.
Fred R. Conrad/The New York Times/Redux

In mid-February, Hood is in North Carolina as part of a swing through the South to share the latest news from the MJFF and meet with the foundation’s constituents. Her schedule is demanding—in addition to the fifty-five hours a week she typically logs while working from the MJFF New York office, she travels nearly every week on foundation business. She gets back to Duke several times a year, and on this trip she’s slated to speak to a public policy class about social entrepreneurship and to meet with Duke neurologist Mark Stacy and a group of his patients to talk about research progress. When she learns that president emerita Keohane was on campus a few weeks earlier to discuss her new book, Thinking About Leadership, Hood is eager to hear about the presentation—the enthusiasm today’s students have for what Keohane accomplished, and her honest insights into the daunting challenges that women still face when trying to balance a career, family, friends, and self-renewal. “She’s totally right,” Hood says. “My parents are very supportive of me and the choices I’ve made but I also think they wonder, how the heck does she make this work?”

On this trip, Hood has also accepted an invitation to speak to a Parkinson’s patient support group meeting at Fearrington Village near Pittsboro. About forty people show up, many displaying the shaking and tics that are common among Parkinson’s patients. Hood moves quickly through a slide show that covers a lot of ground, from the MJFF mission and funding model to specific research developments—the complicated but tantalizing promise of genetics research and the millions of dollars being spent on biomarkers studies, for example, and the foundation’s more than $15 million investment in research on dyskinesia, a frequent side effect of taking dopamine-replacement drugs that causes uncontrolled, jerky movements that can deter people from taking medicines proven to slow the disease. She talks about Google founder Sergey Brin’s much-publicized interest in developing new ways of conducting data-driven research on larger numbers of people with Parkinson’s; the hope is that such research might more efficiently identify environmental and genetic causes of the disease. (Brin’s mother has Parkinson’s, and he discovered through genetic testing that they share a mutation on the LRRK2 gene, which is found in a small percentage of Parkinson’s patients.)

In addition to meeting directly with Parkinson’s patients, Hood wants to highlight the MJFF’s efforts to enroll people—those with Parkinson’s as well as healthy control subjects—into clinical trials. “Thirty percent of clinical trials fail to recruit a single subject, and 85 percent finish late because of recruitment troubles,” she tells the group. “Right now there are seventy-seven observational clinical studies that are actively seeking healthy controls.” She encourages people to look for trials in their area and lets them know about MJFF efforts to make finding and enrolling in clinical trials easier.

After the support-group meeting, Hood catches a plane to Miami to do a version of this presentation with another group of Parkinson’s patients who look to the MJFF for hope and answers. “The great privilege of working for MJFF,” she says, “is that people are putting their trust in us. There is a palpable sense of relief when people with Parkinson’s and their families realize that the Fox Foundation cares about the one thing they care about—a cure for this disease.”

As winter turns to spring, Hood—who prides herself on being a problem solver and decisive strategist—finds herself faced with the most difficult decision of her professional career. The Michael J. Fox Foundation is thriving under her leadership. But for several months, Hood has realized that that her family has specific needs that are getting less attention from her than they deserve.

And so, in mid-April, after much soul-searching, Hood decides to step down as CEO, and Todd Sherer is selected as her successor. It’s a bittersweet decision. For nearly a decade, she has championed the quest to understand and treat Parkinson’s and has seen breakthroughs that bring researchers one step closer to a cure. But she also knows that the needs of MJFF and the needs of her family are in conflict. Hood says she is not sure what the years ahead might hold, but that she will stay connected to MJFF and the broader research sector as a member of the foundation’s Founders’ Council. “I think I’ve had a very unique window into medical research and the health sector, and I think it’s a sector that’s in need of continued innovation. I find it hard to believe that I won’t continue to have a voice in that world for some time to come.