Today Michael J. Fox, the co-founder of the Michael J. Fox Foundation for Parkinson’s Research, is arguably as widely known for his work promoting awareness of and finding a cure for Parkinson's disease as he is for his roles in TV shows and movies. But that wasn't always the case.
"When I got the diagnosis I was in denial for a long time," he says. "I was quietly frantic because people didn't know, and so it took me about seven years really to get my head around it."
As time passed, he found that work such as producing and acting on the series Spin City became increasingly difficult, and to hide his condition from the world he employed a series of "tricks." The situation was unsustainable.
"It got problematic," he recounts, "so I told people about it." The world's reaction to his revelation came as a surprise to Fox. "It was a bigger public reaction than I thought it would be; it was a big story," he says. "Then after a couple of days the story switched from being about me to being about Parkinson's."
Right away Fox recognized his opportunity to be of service. Perhaps not surprising from one of Hollywood's most beloved (and optimistic) stars, he saw that what had been a painful secret—and continues to be a personal health battle—had opened up a new path. "This is really...an opportunity to effect a change in the lives of a lot of people," he recalls thinking.
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Today, the Michael J. Fox Foundation, which Fox co-founded with Deborah W. Brooks, is leading the way in Parkinson's research and drug development. A few highlights: The foundation is backing an early stage clinical trial of a first-of-its-kind vaccine approach to treating Parkinson's disease, it works with big pharmaceutical companies to speed the path of advances in medicine, and it connects volunteers to clinical trials through its Web-based tool the Fox Trial Finder. By the end of 2011 the foundation had funded more than $57 million in groundbreaking research, and its team of neuroscientists and business strategists had reviewed over 900 grant applications, bringing its portfolio up to 400 active grants.
Of course, finding effective drugs can take decades, and there are no guarantees that a cure will be found. Yet for Fox—who is returning to TV this fall to star as a news anchor diagnosed with Parkinson's—that's not what his philanthropic path is about. “I don’t know if [we’ll] find the answer in time for me; it’s not about me," says Fox. "I like to think that we’ll figure this out and there will be a big line of people with Parkinson’s, and at some point I’ll go, ‘Geez, I’d better get in the line.’”
Michael J. Fox's Key Messages for Philanthropists
- Involve beneficiaries in guiding your philanthropy, even in the most technical fields. Watch: Patient-centric: The Michael J. Fox Foundation involves patients in decision-making with scientists.
- Pinpoint the role your philanthropy can play to add value. Watch: The right role for their philanthropy: Michael J. Fox and Debi Brooks convened experts to figure out how their “capital should behave.”
- Bring expertise in-house—whether in research, business or advocacy—and use it to drive change. Watch: In-house expertise: Debi Brooks wanted a professional staff—complete with PhDs, MDs, and MBAs—at the Fox Foundation.
- Be pragmatic and urgent in your philanthropy to get results, whether that means giving to for-profit entities or forgoing an endowment to focus on unmet needs today. Watch: Key early decisions: Debi Brooks discusses strategic choices that shaped the Michael J. Fox Foundation.