The problem, basically, comes down to dopamine. Deep inside the human brain, there is a small, dark-colored cluster called the substantia nigra. Normally, neurons in the substantia nigra produce dopamine, a chemical that helps transmit signals that allow smooth physical movements. In the brains of the estimated one million Americans with Parkinson’s disease, substantia-nigra cells grow weak and die–and they stop producing dopamine as a result. Muscles tense and contract, making movements painful and jerky. Involuntary tremors flare up. Once-automatic actions turn unpredictable so washing or dressing can take hours. Balance and coordination are impaired, sometimes severely so; patients often lean forward or backward, falling over easily.
Parkinson’s disease is degenerative, which means that its effects grow progressively more severe. Although its symptoms were first identified nearly two centuries ago, no one yet understands why the substantia-nigra cells die. No one knows how to stop the degeneration. No one has perfected a way to replace the absent dopamine without harmful side effects.
That is, Parkinson’s disease is incurable. This is not the same thing as saying there is no cure. No–it’s just that no one has figured it out. Yet.
Fast Company: The word “degenerative” seems terrifying. How did you react to it at first? How do you react to it now?
Michael J. Fox: It is a terrifying word. Like “decay” or “deteriorate,” the sense of loss is frightening. But it also implies a process occurring over time–that there is time, you have some time, and so you want to use it well.
Fame Plus Brains Equals Impact
In 1991, at the height of an insanely successful Hollywood career, after eight seasons of Family Ties and three Back to the Future movies, Michael J. Fox learned that he had Parkinson’s disease. Most Parkinson’s sufferers are struck in their fifties or sixties; Fox was only 30. For several years, he told few people about his illness. He kept acting, bringing his egregiously boyish, hyperactive presence to films such as The American President, Coldblooded, and Life with Mikey–and, later, to the TV sitcom Spin City. Eventually, though, his symptoms grew too disruptive to hide. Fox told the world he had Parkinson’s. In May 2000, he quit Spin City and founded the Michael J. Fox Foundation for Parkinson’s Research. His goal: to cure Parkinson’s within a decade.
Yawn. Another celebrity, another charity. Here’s the thing though: In just over a year, the Fox Foundation has become a strikingly effective organization–a force not just in fund-raising, but also in shaping the nation’s research agenda for Parkinson’s and, perhaps, for more than that.
The foundation’s success is certainly a function of its namesake’s fame. Fox isn’t just well known; he is universally liked. At one point, a third of the callers to the foundation’s toll-free donation hot line just wanted to know how Fox was doing. (In a new recorded message, he tells them he’s doing fine, thanks.)
More than that though, Fox is a savvy and strategic thinker. He’s also a thoughtful and articulate speaker, able to engage senators and investment bankers alike. “Michael has just a tremendous effect on people,” says Curtis Schenker, a New York hedge-fund manager who is a neighbor and friend. Known to associates as a genuinely decent person in real life, Fox has attracted A-list connections, and he knows how to work them. Even weakened by illness, he has enormous drive and energy.
He also has Deborah Brooks.
Fast Company: We Americans have a bizarre fascination with celebrity. One manifestation of that is that Michael J. Fox can attach his name and face to Parkinson’s and quickly raise millions of dollars. Does that strike you as good, bad, or just weird? How do you define your role as a celebrity?
Fox: I’ve heard it said that you can take apart a frog to see how it works, but all you end up with is a dead frog. In other words, I don’t overanalyze my participation. I just try to be responsible and to pass along what has been given with the same ethics and sense of citizenship I have always had.
Why Should It Take Such A Long Time?
In 1995, Debi Brooks, now 42, was a vice president in Goldman Sachs’s asset-management division. Having grown up in a family of modest means, she considered this to be a home run: She was well regarded and well compensated, and she was rising through the firm’s ranks. She had built her dream home on Nantucket.
Yet something was missing–several things were, actually. Flexibility, marriage, and a family. So she left Goldman and enrolled in a master’s program for marital and family therapy. While living mostly on Nantucket, she went on to manage two nonprofit groups: the Harvard Eating Disorders Center and the Bill T. Jones/Arnie Zane Dance Company.
Then, through a series of Goldman connections, she heard that Michael J. Fox was looking for an executive director for his foundation. She knew nothing about Parkinson’s disease, but she knew that this was the perfect job for her. It was both complex and entrepreneurial, a high-profile startup with heart. The following week, she was in New York, meeting with Fox and his ad hoc search committee. After the interview, Fox turned to his business partner Danelle Black and asked, “Where have you been hiding her?” A week later, Brooks went to work.
Here was her challenge: How could the foundation direct Fox’s celebrity toward curing a mysterious neurological disease? Fox himself had taken a key first step by meeting with existing Parkinson’s organizations and researchers to explore the opportunity. In doing so, the Hollywood icon forged credibility where it counted. His sincerity and seriousness–as much as his star value–impressed longtime advocates such as Joan Samuelson of the Parkinson’s Action Network.
Brooks and Fox turned those early connections into an impressive board of directors, enlisting among others Lonnie Ali, the wife of former boxer and Parkinson’s sufferer Muhammad Ali, and Morton Kondracke, the Washington journalist whose wife has Parkinson’s. Fox also recruited DreamWorks SKG partner Jeffrey Katzenberg and film producer Kathleen Kennedy. Schenker rounded up Wall Street heavies, including Mitchell Blutt, executive partner of J.P. Morgan Partners.
Samuelson also led Fox and Brooks to William Langston, a leading researcher who heads the Parkinson’s Institute in Sunnyvale, California. Langston agreed to recruit a scientific steering committee whose members would help develop a research-funding strategy as well as evaluate grant applications. Like Samuelson, the researchers took to Fox quickly. On the one hand, he was a novelty–a big-time celebrity who was also intelligent and approachable. “Even scientists can be starstruck,” says Michael Zigmond, a neuroscientist at the University of Pittsburgh. On the other hand, Fox was a meal ticket, an attractive ally in researchers’ quest for bigger budgets.
They would discover that Fox was something else too: impatient. The funding of scientific research has historically been a drawn-out affair. Grants from the National Institutes of Health (NIH) are awarded nearly a year after applications are received. Why? Partly because of the volume and complexity of the requests. Partly because the applications are so long. And, well, partly because that’s how it has always been done.
“We said, Why should it take such a long time?” recalls David Golub, a board member and managing director of Centre Partners Management. “We all had a sense of urgency. We weren’t interested in a yearlong process.” Brooks and Langston developed a fast-track granting process. Their application form would be far shorter, requiring much less preliminary data. A standing review board would expedite processing and selection. Their grants would take three months instead of a year.
Last December, two months after Brooks signed on, the Fox Foundation was ready to solicit funding applications. It advertised through an email newsletter for We Move, a group that promotes learning about movement disorders, and in two follow-up email broadcasts to 4,000 scientists. From that, the Foundation expected about 40 to 60 applications. Instead, apparently drawn by Fox’s name, by the compressed application cycle, and by the unusually large grants of up to $125,000, nearly 200 researchers applied, seeking a total of about $20 million.
“We were like, Whoa!” Brooks recalls. “And the quality of the science, of the ideas being proposed, was strong and deep. It wasn’t just a lot of fan mail.” The NIH agreed. Not wanting to abandon potentially important science, it assented to coordinate a new round of funding for Parkinson’s research. The agreement was pathbreaking on two counts. First, it would pool money from both government sources and private foundations, including Fox’s. Second, it would integrate into the joint NIH program parts of the fast-track review process that Brooks and Langston had devised.
Scientists would get funded sooner. Their results would be delivered earlier. Parkinson’s disease, perhaps, would be cured faster than it would be otherwise.
Fast Company: Most people probably react in one of three ways to getting a disease such as Parkinson’s. They give up; they pursue active lives, hoping not to acknowledge their disability publicly; or they choose to fight the illness publicly. You have chosen the last path–which seems to be the most difficult. Why?
Fox: A friend asked me what has driven me throughout my life and career. I explained that I’ve always tried to move forward as if I were waiting for the other shoe to drop. And he said, “The other shoe has dropped. You have Parkinson’s disease.” I thought, yeah, it has, and I’m living with it. And it is okay. I’m still me–me with Parkinson’s.
“I Look For Leverage Everywhere”
The Michael J. Fox Foundation raised about $2 million in 2000, its first year. This year, Brooks expects to collect about $7 million. A premiere party in Boston for Fox’s pal Sam Weisman’s new film, What’s the Worst That Could Happen?, netted $150,000. And a benefit featuring a cast of top-drawer comedians that is scheduled for December in New York has already won commitments for around $3 million.
In the scheme of things, that’s small change compared to the $1 billion the NIH has estimated will be needed to cure Parkinson’s. But consider the Fox Foundation’s greater impact. It has raised public awareness of the disease, say advocates, by an order of magnitude. Each time a Spin City rerun airs, a foundation public-service announcement airs too. A new TV ad, a striking spot featuring Fox and Muhammad Ali together, debuted this fall.
Consider too the effect in the scientific community. In April, the Fox Foundation awarded its first grants: 15 awards totaling more than $1.5 million. By July 19, which was the deadline for the combined public and private grants, the NIH had received 198 proposals seeking as much as $70 million. Of that amount, $7.4 million was awarded in September. Scientists say that the Fox Foundation’s granting strategy encourages more senior researchers to apply, because the awards are larger and the application hassle is minimal. Likewise, it attracts new ideas from relatively untested investigators who would otherwise lack the reams of supporting data that are required in traditional applications. These scientists hope that the Foundation’s fast-track process will be adopted for grant-making in other disciplines as well.
Brooks is capitalizing on the overall feeling of goodwill to firm her foundation’s credibility–and to sharpen its focus. She is organizing a half-dozen roundtable meetings on topics such as cell-replacement therapies and biomarkers. The meetings, she hopes, will inform future funding strategies. “We want mechanisms in place,” Brooks says, “that force us to rethink, to move with the field. Can we do things better and faster? Can we design a more exacting process? How do we leverage the most from these activities? I look for leverage everywhere.” By next year, she hopes to have built a varied portfolio of research initiatives, a mix optimized to jump on opportunities quickly.
Fox talks about “building for obsolescence.” He and Brooks imagine an organization so effective, so successful, so well designed that it dramatically accelerates the pace of science–bringing about a cure for Parkinson’s that would one day make the foundation irrelevant.
The prospect thrills Brooks. She came out of semiretirement for this, selling a house she and her husband had just bought and deferring, for a time, her vision of a relatively sane lifestyle. Attempting to cure an incurable disease, she says, “is sprinting with an elephant on your back”–a ceaseless whirl of networking, begging favors, and solving problems.
“But look how close it is. It’s tangible. I could be part of something that saves millions of lives. Think of that!”
Keith H. Hammonds (firstname.lastname@example.org) is a Fast Company senior editor based in New York. Contact Deborah Brooks by email (dbrooks@ michaeljfox.org).
Sidebar: What’s Fast
Michael J. Fox and Deborah Brooks expect to help cure Parkinson’s disease within a decade. Here’s how they’re translating Fox’s megawatt fame into an effective nonprofit foundation.
Family Ties. Before he started his foundation, Fox plumbed the existing Parkinson’s advocacy network, building connections and legitimacy and learning where he could do the most good. Those ties helped the foundation develop strong relationships with key scientists.
Doc Hollywood. Cute is good, but so are smarts. Fox, already engrossed by the machinery of American politics, made himself an expert on the science behind Parkinson’s. The result: He is a commanding, persuasive public face who knows the ropes.
Spin City. It helps to have a founder who is famous and popular. Brooks leveraged Fox’s star power by producing stirring TV ads, and nearly all of his publicity (including that for his forthcoming book, Lucky Man) relates to Parkinson’s. The result: not just fame, but focused fame.
Back To the Future. Brooks demands that the foundation change and adapt to evolving science. Besides a scientific steering committee, she has organized a series of research roundtables to revisit past work and determine future priorities.
The Secret of My Success. Finding a cure fast means getting money to scientists quickly. Existing grant processes typically take a year. Brooks devised a strategy that compressed the timeline to three months. Now the government is starting to adopt the same system.