The unique influence of Michael J. Fox's Parkinson's foundation

From The New York Times Giving section Nov. 11. It's a full page story, but here's a snippet about what makes Fox's foundation unique:

What makes the story of the Michael J. Fox Foundation different — nay, what makes it important — is that it doesn’t just dole out money to scientists and hope for the best. It has used its money to take control of Parkinson’s research like few other foundations have ever done. In the process of trying to solve the mysteries of Parkinson’s, it has upended the way scientific research is done, and the way academics interact with pharmaceutical and biotech companies, at least in its little corner of the world. It demands accountability and information sharing that is almost unheard of in the broad scientific community. And it has managed to become, in its short seven-year life, the most credible voice on Parkinson’s research in the world. “If you are a serious Parkinson’s researcher,” said Malu Tansey, a scientist at the University of Texas Southwestern Medical Center, “you live and die by the Fox Foundation’s Web site.”

In this, it has joined a small but growing group of what might be called activist disease foundations — foundations that operate with speed and urgency and a business model completely unlike the traditional foundation model, or the National
Institutes of Health, for that matter. The Cystic Fibrosis Foundation was one of the instigators of this movement, more than a decade ago, as was Michael Milken’s Prostate Cancer Foundation, formerly CapCure. The Myelin Repair Foundation, for multiple sclerosis, and the Multiple Myeloma Research Foundation are also members of this tribe. They all use their money, unabashedly, as weaponry, to finance targeted research, hold conferences where scientists must share information and underwrite clinical trials conducted by drug companies. They are hard not to admire.

Yet Cystic fibrosis is still with us, as is prostate cancer, multiple sclerosis and multiple myeloma. And so is Parkinson’s disease. Which leads to an obvious question: after seven years, has enough time passed to ask whether this new business model is really any better than the old one?

“SEVEN years,” groused Andrew S. Grove when I visited him recently in Silicon Valley. “And what do we have to show for it? Nothing.” He spat out the last word with a classic Grove-like flourish of disgust.

The former chairman and chief executive of Intel, Mr. Grove, now 71, also has Parkinson’s disease — as well as a small, seven-year-old foundation, the Grove Foundation, trying to combat it. In addition, Mr. Grove plays an important but ad hoc advisory role for the Michael J. Fox Foundation, to which he has made a $40 million bequest.

It is clear that the formation of these two foundations in 2000 marked the beginning of targeted Parkinson’s research. Before then, what existed was broader university research into both the brain and the nervous system, some of which was applicable to Parkinson’s disease but much of which was not. Much of it was financed by the National Institutes of Health, an agency of the Department of Health and Human Services. As for industry, because there are far more Alzheimer’s patients than Parkinson’s patients, much of the cutting-edge industry neuroscience was designed for the former group rather than the latter. When Mr. Fox started his foundation, he was filled with optimism, and he grandly announced that his organization wanted to find a cure in 10 years. For that matter, Mr. Grove was pretty optimistic, too: when he started his foundation, he felt sure that by backing certain kinds of stem cell research (work the government was refusing to finance), he could quicken the move toward a cure. At the time, there was a widespread belief in the Parkinson’s community that stem cell research would lead to a cure.

But both expectations turned out to be unrealistic; stem cells, though they still hold promise, have not turned out to be the Parkinson’s silver bullet that scientists once hoped they might be. In the last few years, Parkinson’s research has moved in other, more promising directions. Similarly, Mr. Fox and his colleagues at the Fox Foundation have come to realize that finding a cure for Parkinson’s is slow, painstaking work and that to do it in 10 years is wildly unrealistic.

Which is really what Mr. Grove was referring to with his dour remark to me. “The most important thing we have figured out is the various things we didn’t know and should have known,” he said. “We figured out we are further back than we thought. That is what we have to show for seven years. It is very unsatisfactory.”