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Michael J Fox interview: Strong foundations

Wednesday December 17, 2008

Joe Nocera

The Scotsman - AFTER going public, a decade ago, about living with Parkinson's, actor Michael J Fox has used his star power to raise huge sums to combat the degenerative condition – and transform the whole research culture.

A few years after Michael J Fox revealed that he had Parkinson's disease, he attended the annual charity auction for the Robin Hood Foundation, a New York philanthropic organisation financed largely from donations by wealthy hedge fund managers.

Fox was in his late thirties at the time. He had lived with Parkinson's from 1991, when he was diagnosed, aged just 30. He had kept it quiet and continued his acting career. It was only in 1998, when his symptoms – the uncontrollable tremors and halting speech that characterise those with Parkinson's – meant he could no longer continue with his hit show Spin City, that he finally broke the news.

Because he is a well-known, and well-liked, actor, there was an outpouring of support from people worldwide – "much more attention than I expected," he recalled. Although he recoiled at the thought of becoming "the PD poster boy", as he later put it, he also realised his celebrity gave him a currency that might be useful in helping bring about a cure. Early on, he testified before Congress about the lack of federal funds going to Parkinson's research. Beyond that, though, he wasn't sure what he could do.

The evening of the Robin Hood auction, he watched hedge fund managers trying to outdo themselves in bidding for charity items. "You could see, at that dinner, that you could definitely get stuff funded," he said. "I woke up to the fact that if I came up with a plan, I could have access to people."

Fox did indeed come up with a plan. Like many celebrities who embrace a cause, he started his own organisation, the Michael J Fox Foundation. Last year, it spent 25.2 million (£17.3 million) fighting Parkinson's disease. Although he does not run it – and never has – he is its chairman and inspirational leader.

There are thousands of foundations around the world dedicated to eliminating one disease or another. Collectively, they spend hundreds of millions of pounds each year. And yet, the diseases they are trying to cure remain stubbornly uncured.

What makes the story of the Michael J Fox Foundation different 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 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 research is done, and the way academics interact with pharmaceutical and biotech companies, at least in its own 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, eight-year life, the most credible voice on Parkinson's research in the world.

"If you are a serious Parkinson's researcher," says Malu Tansey, of the University of Texas Southwestern Medical Centre, "you live and die by the Fox Foundation's website."

In this, it has joined a small but growing group of what might be called activist disease foundations. They operate with speed and urgency, to a business model completely removed from the traditional. In the US 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 are prostate cancer, multiple sclerosis and multiple myeloma. And so is Parkinson's disease. Which leads to an obvious question: after eight years, has enough time passed to ask whether this new business model is really any better than the old one?

"Eight years," grumbles Andrew S Grove."And what do we have to show for it? Nothing." He spits out the last word with disgust.

The former chairman and chief executive of Intel, Grove, now 71, also has Parkinson's disease. Like Fox, he set up his own foundation eight years ago, with the aim of combating it. In addition, he plays an important but ad hoc advisory role for the Michael J Fox Foundation, to which he has made a 40 million (£27.5 million) bequest.

It is clear 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. In the US, it was mainly financed by the National Institutes of Health (NIH), a health department agency. 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 Fox started his foundation, he was filled with optimism, announcing, grandly, that his organisation wanted to find a cure in ten years. For that matter, 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 towards a cure. At the time, there was a widespread belief in the Parkinson's community that stem cell research would deliver results.

Both expectations turned out to be overly hopeful; stem cells, though they still hold promise, have not turned out to be the Parkinson's silver bullet that scientists hoped they might be. In the last few years, Parkinson's research has moved in other, more promising directions. Similarly, Fox and his colleagues have come to realise that finding a cure for Parkinson's is slow, painstaking work, and that to do it in ten years is wildly unrealistic.

Which is really what 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 says. "We figured out we are further back than we thought. That is what we have to show for eight years. It is very unsatisfactory."

Which, in fact, is something – you have to be doing targeted research even to discover what you need to discover. And in truth, Grove isn't quite as pessimistic as he appeared on the day I visited him. He has since peppered me with speeches he has made and slide shows he has presented that show him to be a curmudgeon with a purpose. He sees his role as being someone whose job it is to push and prod and not let anyone become satisfied with the progress they have made. Including, as it turns out, the Michael J Fox Foundation.

Fox, a man of keen intelligence who nonetheless likes to describe himself as a high school dropout, did not have a clear idea at the beginning how his foundation would operate. But he did have some overarching principles. He wanted the foundation to be run by someone from the business world, rather than a career philanthropist. He met Deborah Brooks, who had spent several years at Goldman Sachs, and hired her to be the first chief executive.

He wanted the foundation to have a powerful sense of urgency, and for that reason he insisted that it had to spend the money it took in, rather than building up a large endowment, which often becomes the end instead of the means. ("The goal is to go out of business," he said.) He wanted it to be an organisation that was about science rather than, for example, patient advocacy. Mainly, he wanted to approach the problem differently from the way other foundations had. But he didn't know exactly what that meant.

Katie Hood, the current chief executive, recalls that when she first joined the organisation, about a year and a half into its existence, it saw its primary mission as "more money faster". That is, it awarded scientific grant money faster than the NIH – or other philanthropies, for that matter – but in other ways its model wasn't all that different. It had a scientific advisory board that met several times a year – which meant that important decisions had to be deferred until the board's next meeting.

The NIH had lengthy grant application forms and gave money for five years. The Fox Foundation's forms were shorter, and it gave money for two years. The Fox Foundation's approach was streamlined and took more risk, to be sure. That said, it wasn't radically different from the government's general tack.

Brooks recalls a critical, early meeting in New York attended by Grove. The Fox and Grove foundations had put together a partnership to finance stem cell Parkinson's research, and for three hours Grove listened carefully as the Fox Foundation's staff laid out all of its activities. When they had finished, Grove said: "Congratulations, Debi. You look just like the NIH." It was not meant as a compliment.

What is wrong with NIH funding? To most people, the model makes perfect sense. The US government accepts grant applications from scientists, and then hands out money to a handful of those with ideas that it deems most promising.

But from the point of view of a disease foundation desperate to find a cure, everything is wrong with it. The government grants tend to go to low-risk projects, so the kind of science that leads to big breakthroughs tends to be underfinanced. Inevitably, the NIH pays for areas of science that are high profile or have a large constituency.

The US health department disputes some of this. "We at NIH share Andy Grove's sense of urgency to find cures for Parkinson's disease and other devastating disorders," says Dr Robert Finkelstein, the director of extramural research at the National Institute of Neurological Disorders and Stroke.

Meanwhile, the Fox Foundation wanted a change. It began to keep closer track of researchers, using its money to accelerate research that was going well, or shift direction if it wasn't. It expected researchers to report problems and progress. It established markers and other goals researchers were expected to meet. It insisted the money it gave went very specifically to research directly related to Parkinson's – and it was unafraid to finance risky ideas.

The Fox Foundation began to describe the research it financed as "translational" – meaning the applied biology research it paid for was intended to eventually translate into a treatment or a drug. Academic scientists don't usually think in those terms. But those were the terms required to get Michael J Fox money. The foundation was using its money to change academic behaviour. Suddenly, a younger generation of researchers – people who did not yet have traditional, established career paths – became very interested in doing things the Michael J Fox way.

Another piece of the puzzle is to work with biotech and pharmaceutical companies. This might seem like something obvious for disease-oriented philanthropies to do, but it's not. When the Michael J Fox Foundation held its first meeting with industry representatives in 2004 – mainly to find out what it could do to push Parkinson's research along within the industry – it was the first such meeting just about anybody in the biotech industry had ever attended.

And so back to the question that began this article: is it making a difference?

As Fox himself has discovered, eight years turns out to be a short time in terms of fighting a disease whose root cause is still unknown. "It is a tremendously idiosyncratic disease," he says. "The level of research that is going on is still pretty basic. We are not just looking for a cure, we are looking for a cause, and different ways to deal with the side effects of the medication."

But there is also no doubt that far more progress has been made than would be the case if the Michael J Fox Foundation didn't exist. In fact, two drugs are in Phase II clinical trials thanks to Fox Foundation grants.

"I learned that for this to be an effective organisation, it really does have to be run like a business," says Fox. "You can't be afraid of making mistakes, but you have to have a certain level of efficiency. You need machinery to be in place. And you have to have a bottom line of some sort."

As he speaks, in his office on Manhattan's Upper East Side, his legs begin twitching and, several times, his foot hits a coffee table in front of him. His medication is wearing off, he explains, with a small smile.

I ask him whether part of his motivation is to see himself cured someday. "No," he says, that has never been his goal.

"I think self-interest is a great starting point," he continues, "but I don't want it to cloud my thinking, and I don't want the foundation to ever do anything with me in mind. This is a responsibility we have now. I want people with Parkinson's to wake up knowing that there is someone trying to get this done. We want to be accountable to ourselves.

"I have this image of bursting a door open and watching people go through it. And then, at some point, putting my own coat on and walking through the door."

It won't be in ten years, that's for sure. But the door is far more likely to swing open with the Michael J Fox Foundation than without it.

Meanwhile, Fox walks into his bathroom to take more medication.