Almost from the start, Michael J. Fox and Debi Brooks began upending the way foundations typically do business.
The co-founders of the Michael J. Fox Foundation for Parkinson’s Research did so because they felt an urgency about finding a cure for Parkinson’s—and because in the beginning, they didn’t know any better.
When Fox decided to start a new foundation dedicated to finding a cure for Parkinson’s disease, he said he knew he wanted to keep its efforts tightly focused on research.
“One of the reasons we focused on research was because it was a huge task, it was an essential task,” said Fox, who spoke at the Center for Effective Philanthropy’s (CEP) 2011 conference. “If we started going in all sorts of other directions, no one would be served.”
The decision to center the foundation’s mission around Parkinson’s research, rather than patient services, was just one of the first ways that Fox and his colleagues forged their own way.
Fox, an acclaimed television and film actor as well as bestselling author, established the foundation in 2000, following the public disclosure of his diagnosis in 1991 at age 30 of young-onset Parkinson’s disease. Since its inception, the foundation has funded more than $240 million in research to speed development of breakthrough treatments and a cure for Parkinson’s disease. Today it is the world’s largest private funder of Parkinson’s research and has been held up as an exemplar of a new breed of nimble, strategic, and fast-moving disease research funders.
At the CEP conference, which marked its 10th anniversary, Fox said that the hallmark of the foundation is “informed urgency.”
“It’s been like a joke in our board meetings—POM—purity of motive,” he said. “Whenever we get bogged down in anything, we [remind ourselves] we are here for one thing. We are in business to get out of business.”
Co-founder Debi Brooks, a former Goldman, Sachs & Co. executive, said that the foundation began taking unconventional approaches like asking its researchers to meet and share what they learned simply because it made sense. Brooks and her colleagues did not realize that wasn’t the way that competitive scientists typically approach their work.
Brooks pointed out that many academics are accustomed to receiving grants of up to five years’ duration from funders who do not routinely require detailed updates on their progress. Brooks and her colleagues, by contrast, began making smaller grants over shorter timeframes. And, they wanted researchers to provide in-person updates on their work. It was a request that the foundation’s own scientific advisory board challenged. Board members said it would result in scientists simply sending their postdoctoral students because they were too busy to attend, Brooks recounted.
“I said, ‘We’re kind of busy too,’” she said. “We did some pushback.”
The requirement to meet was meant to help focus the work, Brooks said. Initially, the scientists simply tolerated the obligation of making an in-person presentation of their work in front of their competitors. But their reluctance soon changed to a different attitude, she said.
“What we found was that there was so much cross fertilization and problem solving in the moment that the assessment meetings ended up as some of the best work that we could spawn. [There were] partnerships, collaborations, [people saying] ‘I’m sending you my antibodies, you help me with this.’ Then it became that you wouldn’t miss the assessment meetings. We would say ‘Given what we heard, what are the challenges we should be thinking about?’ If you weren’t at the assessment meeting, you’d miss the chance to influence us.”
Meanwhile, as scientists compared notes at the assessment meetings, Fox’s presence provided an unexpected motivation, he said.
“I would go by the foundation [with these] large groups of scientists in the conference room who were busy swapping stories,” Fox said. “I would come in to say thank you. Their response [to me] was not as Michael Fox or as the founder of the foundation, but as a Parkinson’s patient. I would be very symptomatic in front of them. I could see them make the connection between what they were doing and this shaky person at the front of the table. It was about ‘fix the shaky person.’”
The full video interview of Michael J. Fox and Debi Brook’s talk at the CEP conference is available here. The conversation was moderated by Rockefeller Brothers Fund President and CEP Board Chair Stephen B. Heintz.
Susan Parker is owner of Clear Thinking Communications.