When Michael J. Fox was diagnosed with Parkinson’s disease at age 29 in 1991, “it was an old person’s disease,” he says. “It was not a disease that got much attention.”
But now that it was his disease to deal with for the rest of his life, Fox got busy learning everything he could about the state of scientific progress and the realities of living with Parkinson’s. He quickly saw what was missing—and what he could help provide.
“I was motivated by what I heard from the science people who said that the science is ahead of the money,” says Fox. “They said, ‘If you can direct money toward the right research, we can speed things along.’ And then I was touched and motivated by the patient community. They just needed someone to step in and push things along.”
Fox co-created the Michael J. Fox Foundation for Parkinson’s Research with Deborah Brooks, formerly of Goldman Sachs, in 2000 essentially “to be a noodge; I wanted to push things along,” he says. He went where the money is—to businesses and hedge funds—and appealed to the “ego side of them, to the winners who wanted to win, and I said, ‘Let’s win [against this disease].’” He brought with him his trademark charm. Fox’s philosophy: “I’ll come in your office, I’ll take pictures with all of your employees, and I’ll pound you for money,” he says.
The organization’s key role, more than 25 years later, is to convene scientists, policy makers, and advocates to address barriers standing in the way of better understanding Parkinson’s and developing new treatments—and ultimately a cure. “Our goal was to put ourselves and the capital we would raise into the perspective of the patients: what are their unmet needs, and what could be done?” says Brooks, who oversees the foundation’s fundraising and marketing efforts. “What we saw at that time was not much in the way of novel targets for drug development. And I think today there are 175-plus therapeutic interventions being tested in humans.” Since its creation, Fox and Brooks have built the foundation from a startup into the largest nonprofit funder of Parkinson’s research, surpassing even the U.S. government, with more than $2 billion provided to scientists to date.
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