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Change Agents - Michael J. Fox and Deborah Brooks

By: Keith H. HammondsWed Dec 19, 2007 at 12:31 AM
Michael J. Fox isn't just another movie star promoting a pet cause. He and his colleague Deborah Brooks are reshaping the pace and logic of research devoted to curing Parkinson's disease.

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 (khammonds@fastcompany.com) 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.

From Issue 52 | October 2001

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