Change Agents - Michael J. Fox and Deborah Brooks

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.