Acting With Intent

Michael J. Fox’s charity aims to cure Parkinson’s disease

In the five years since the actor Michael J. Fox became a charity leader, his organization has distributed

more than $50-million to fuel scientific study of the degenerative neurological disorder known as Parkinson’s disease, which Mr. Fox was diagnosed with in 1991.

“It’s less of a bare-knuckle fight for me than showing up on the set every day,” Mr. Fox says of his role as founder of the Michael J. Fox Foundation for Parkinson’s Research, located here. “I’ve transitioned my life to where I don’t even kind of think of myself as being in show business anymore.”

The comedic performer who played Alex P. Keaton on the Family Ties television show and Marty McFly in the blockbuster Back to the Future films does have a fight on his hands in this new role. His goal is succinct: to cure Parkinson’s disease by the end of the decade. Toward this aim, the Fox Foundation seeks to fill research gaps; promotes cutting-edge, clinical-based studies; and encourages researchers to pursue novel strategies in combating the disease.

Mr. Fox does much of his Parkinson’s-related work these days from the office he keeps in the New York apartment building where he lives with his wife, the actress (and former Family Ties co-star) Tracy Pollan, and their four children. A shelf in the office displays the glistening array of Emmy Awards Mr. Fox won for his entertainment work. But the Canadian-born 43-year-old says he is much more concerned with the prize he is seeking now. An estimated 6.3 million people around the world have Parkinson’s.

‘In Shock and Afraid’

The transition from entertainer to disease fighter didn’t happen overnight. When Mr. Fox was diagnosed with Parkinson’s in 1991, he chose not to go public with the news for professional and emotional reasons.

“I was in shock and afraid,” Mr. Fox says. “I was completely private with it, worried about anything I might do to betray my secret.”

Carefully timed doses of medicine provided temporary relief from the illness’s symptoms — which include tremors created by a loss of muscle control — and enabled him to keep working before the camera. He continued to make movies, and in 1996 took a role on the television show Spin City. Only his family and closest associates knew of his illness.

By 1998, Mr. Fox achieved a kind of internal peace with the reality of his illness. But with the disease progressing and the symptoms harder to mask, Mr. Fox decided to go public with his condition. People magazine made his disclosure its cover story. While Mr. Fox was on the 20/20 television program that year, Barbara Walters noted when interviewing him that it was ironic for a youthful performer known for his boyish demeanor to be stricken with a disease more commonly seen in the elderly. “God has a sense of humor, ” Mr. Fox quipped in response. Fewer than 10 percent of Parkinson’s patients experience their first symptoms before age 50.

As Mr. Fox plunged into the world of Parkinson’s research and associated charities, he was troubled by what he found.

“I was suddenly talking to scientists who were expressing this incredible optimism and sense of forward movement and promise in various areas of Parkinson’s research, and I failed to see that reflected in what was happening in the institutions and foundations supporting Parkinson’s research,” he says. “The money wasn’t rising to the level of the science.”

Mr. Fox says he doesn’t want to “name any names” and says that all the Parkinson’s groups he encountered were “pure in motive.” But he also found many of them heavily bureaucratic, mired in an “institutional malaise” and factional.

After he announced his diagnosis, Mr. Fox says, several groups started jockeying for his support. “I had a group say to me, ‘Well, if you don’t help us, just don’t help them,’” he says. “This just floored me.”

No ‘Poster Boy’

Mr. Fox says that while he did not initially intend to start a charity, the option ended up making the most sense the more he considered it. The last thing he wanted, he says, was to be recruited as some sort of “poster boy” for Parkinson’s.

“In so much as no group had articulated to me an endgame that made sense, I wasn’t going to say to any Parkinson’s organization, ‘Here, here’s my face, here’s my 20-year career and the relationship I have with people. Use it as you see fit and don’t confer with me,’” Mr. Fox says. “I thought, if I’m going to be talking to people and asking them to make a commitment — financial, emotional, intellectual, or otherwise — I better be able to put the full weight of everything I stand for behind that commitment and behind that relationship. And I couldn’t see any group that was completely worthy of that investment.”

Not that he shunned Parkinson’s charities. Indeed, in 1999 he joined members of the nonprofit Parkinson’s Action Network to testify before Congress and request additional federal funds for neurological research. Mr. Fox says that he applauds the network’s work as an advocacy group, promoting public awareness of Parkinson’s and seeking government funds for research. But he had something else in mind.

“I just thought there was room for a more guerrilla, grass-roots, low-to-the-ground, built-for-speed operation,” he says.

Nursery-School Ties

The Michael J. Fox Foundation for Parkinson’s Research was founded in 2000. Initially, Mr. Fox didn’t want to name it after himself. “It wasn’t about me,” Mr. Fox says of his hesitation. “It was about an opportunity for a really big win in something.” (He considered the name “PDCure,” until his wife dismissed it as too close to “pedicure.”)

Colleagues convinced him that his well-known name could give the new group a high profile. And it did — although early on as much as a third of the phone calls to the charity were from fans asking about Mr. Fox’s personal health. The organization’s phone message was eventually modified to include assurances that he was OK.

Mr. Fox laughs when recalling that some of the organization’s board members came from an unlikely place: nursery school. They were fellow parents he had gotten to know at the preschool his twin daughters attended, he explains.

“When I came out with my situation, they asked very nicely if there was something they could do,” Mr. Fox says. “They stepped up in a big way. A lot them were from the financial world and loved the entrepreneurial approach to philanthropy — looking at it like a start-up and setting a goal you want to achieve.”

Although Mr. Fox had left his regular role on Spin City by then, he says that for “practical and administrative reasons” he was not prepared to run the new charity. Through recommendations from the nursery-school parents, Mr. Fox found a chief executive officer: Deborah Brooks, a former Goldman Sachs investment banker who had left Wall Street to explore opportunities in the nonprofit arena.

While Ms. Brooks had helped start a small nonprofit group to fight eating disorders and had done consulting work for a few charities, she says this was uncharted territory for her.

“Neither Michael, or I, nor our advisers — which ultimately turned into our Board of Directors — had ever done anything like this before,” Ms. Brooks says. Mr. Fox and Ms. Brooks met with Michael Milken, the former junk-bond magnate who founded the Prostate Cancer Foundation in 1993 and who is widely credited with developing a streamlined medical-research grant process. There also were meetings with Christopher Reeve, who had started the Christopher Reeve Paralysis Foundation following his paralyzing horseback-riding accident in 1995.

“Christopher Reeve is a hero of mine,” says Mr. Fox, who knew the fellow actor before his accident. He says people often compare him with the late Mr. Reeve, adding that “it’s an easy association to make, but it’s not something I think about.”

$50-Million Distributed

While the Fox Foundation has distributed some $50-million for Parkinson’s research over the past five years, that figure is a slight fraction of what the federal government spends. The National Institutes of Health spent $230-million on Parkinson’s research in 2003 and an estimated $237-million last year.

Parkinson’s is not considered a fatal disease, but it is degenerative and can lead to immobility, significant speech difficulties, and an inability to care for oneself. The disease has no cure, and most known treatments tend to lose their effectiveness over time.

In awarding grants, the Fox Foundation looks for promising, if somewhat unconventional, areas of research that have had a hard time getting government funds. It has developed a three-pronged approach to supporting Parkinson’s research:

• A wide-open Fast Track program invites researchers to seek grants for any Parkinson’s-related work they wish to pursue.
• A “directive” grant program identifies potentially “high impact” research areas and tailors grants to meet them.
• The Linked Efforts to Accelerate Parkinson’s Solutions (LEAPS) program makes grants to groups of scientists who agree to collaborate on a project.

J. William Langston, chief executive officer of the Parkinson’s Institute, a 17-year-old research and patient-care facility in Sunnyvale, Calif., who also serves as the Fox Foundation’s chief scientific adviser, says Mr. Fox’s organization has greatly accelerated the pace of Parkinson’s-related research. “The real power the Fox Foundation has brought to the field is that they have gone in in an almost surgically precise manner to find research bottlenecks and fund specific steps to break those bottlenecks,” he says.

To help select which projects to support, the Fox Foundation brings together Parkinson’s researchers to brainstorm on the field’s needs and obstacles. In 2002, for example, the foundation started a $4-million search for a Parkinson’s biomarker, which is like a fingerprint that can identify people with Parkinson’s. Parkinson’s is diagnosed by neurologists who must rely largely on their observations of a patient’s movements and speech. Tests are used to rule out other conditions with similar symptoms. Dr. Langston says doctors misdiagnose the disease as much as 25 percent of the time, which has a negative impact on both patient care and research.

“A biomarker would be huge,” Dr. Langston says. “The National Institutes of Health agreed that it was very important, but no one was funding it.”

Quick Turnaround

The speed with which the organization reviews and awards grants has also drawn accolades. Successful grant seekers usually have money in less than six months from the time they make their request.

Janusz Suszkiw, a professor of molecular and cellular physiology at the University of Cincinnati College of Medicine, received a Fox Foundation Fast Track grant last year.

“The whole process from submission of application to grant funding took about four months, which is considerably less than the minimum 11 months it takes NIH to process and fund grant applications,” he wrote in an e-mail message. “Expeditious handling of research proposals is of great advantage to scientists who wish to investigate new ideas and promising leads, and it generates real opportunities to move Parkinson’s research forward.”

The Fox Foundation has awar-ded a number of grants in the field of human embryonic stem-cell research, a promising specialty that is not without ethical controversy.

Embryonic stem cells have the ability to develop into all manner of cell and tissue types, and some researchers say they could one day be used to replace cells damaged by diseases such as Parkinson’s. The cells are taken from human embryos that are a few days old and are destroyed in the process, which some people equate to the killing of a human being.

All told, the Fox Foundation has spent around $8-million on stem-cell research, which Ms. Brooks says represents only about 15 percent of the group’s grant money.

“Stem cells are one path to a cure that we are exploring, but there are many others,” Ms. Brooks says. “The bulk of our research isn’t stem-cell focused.”

A Funny Thing

Last year the Fox Foundation raised $18-million to battle Parkinson’s, its best total to date.

Wealthy people who made big gifts provided about half that amount, many of them people with a personal connection to Parkinson’s and its debilitating effects.

The annual gala, A Funny Thing Happened on the Way to Cure Parkinson’s, is the group’s largest fund-raising event. Last year it featured performances by Robin Williams and James Taylor, and was attended by numerous Hollywood luminaries, such as Martin Scorsese and Harvey Keitel. More than $5-million was raised after expenses.

“We structure it so it’s not so self-congratulatory and it’s not a lot of whining,” Mr. Fox says. “It’s just a party.”

The organization has done very little with direct mail or other broad-outreach methods, although it has run some print and broadcast ads. “We are very protective of Michael’s name, at his request,” says Joyce Oberdorf, the organization’s head of communications.

Mr. Fox has personally given to the organization, though he declines to say how much, adding that he “couldn’t add it all up.”

“I’ve cut a few checks to give a little kick-start every now and then,” he says. Perhaps his largest donation was the proceeds from Lucky Man, his autobiography that was published in 2002, an amount that he says has exceeded $3-million so far.

Scientific Advisers

The Fox Foundation hired its first two scientists last year, bringing the total number of employees to 21. And it is in the process of hiring a scientific director.

Staff members work in the New York office, which is across town from Mr. Fox’s personal office, while advisers and board members are spread all over the world. Mr. Fox’s wife sits on the board, and his 15-year-old son, Samuel, has started volunteering weekly at the group’s headquarters to help with a computer database.

Mr. Fox is not involved in the organization’s day-to-day operations, saying he doesn’t want to “micromanage” it. He checks in with Ms. Brooks several times a week and keeps up with what is happening in Parkinson’s research. “The best thing I can do is be willing to get out of the way,” Mr. Fox says. “But when I’m supposed to get in the way, I want to provide a meaningful presence.”

He says he is fortunate because current Parkinson’s medicines still relieve his symptoms, though he does have visible tremors on his right side sometimes.

“I’m not inventorying my symptoms on a day-to-day basis because they’re just a given,” Mr. Fox says. “It might be different if I was a brain surgeon, or still doing grueling, time-sensitive TV or film work.”

In 1998 Mr. Fox had a successful thalamotomy, an operation on the brain designed to reduce Parkinson’s symptoms, particularly certain tremors. While he detailed this experience in his autobiography, he doesn’t otherwise publicly speak about the medicines or methods he is using to combat the disorder.

“What works for one person might not work for another, so I have to be careful about perceptions that I endorse or champion one treatment,” he says.

When he testified before Congress back in 1998 seeking more funds for the disease, he made a point of not taking any Parkinson’s drugs so his tremors and other symptoms would be in full bloom. “I needed to show there was an urgency to this,” Mr. Fox says, noting that at the time he was still a regular — and healthy-appearing — presence on television. With his story and condition now better known, he no longer needs to forgo his medicines to make a dramatic point.

While plenty of other famous people have Parkinson’s — including the former attorney general Janet Reno, the Rev. Billy Graham, Pope John Paul II, and the boxer Muhammad Ali — most Parkinson’s advocates and researchers say none have been as galvanizing a force as Mr. Fox.

“There’s no question that Michael’s announcement dramatically increased awareness of what Parkinson’s is, what it does to people, and raised the level of urgency for finding a cure,” says Robin Anthony Elliott, executive director of the Parkinson’s Disease Foundation, in New York, which has an $8-million annual budget. “He made things easier for all of us. I’m sure it has resulted in a financial increase for what we’re doing. We certainly did well in the years following his announcement.”

Mr. Fox, keenly aware of how his celebrity aided his own organization’s start, says he is pleased that it has become “a respected institution with its own profile separate and apart from me.”

Looking back over his group’s five-year history, he says the accomplishment he is most proud of isn’t a specific scientific advancement or sizable donation. Rather, it is that the organization has come together so “efficiently and well.”

“I’m not fitting myself for a halo,” Mr. Fox adds. “I’m just glad I had the time and the opportunity to crystallize an idea and bring together some really capable people to execute it.”

The ultimate endgame is for the organization to work itself out of existence. Mr. Fox calls it “planned obsolescence.” He still believes that the goal he set in 2000 — to cure Parkinson’s in 10 years — is realistic and reachable.

“If we haven’t cured it by 2010, I guarantee we’ll be on the way,” he says. “And if it takes us 15 years, are we going to consider ourselves failures? No. We’re going to feel pretty good.”

MICHAEL J. FOX FOUNDATION FOR PARKINSON’S RESEARCH

History: Founded in 2000 by the actor Michael J. Fox as a grant-making charity to pay for research to find a cure for Parkinson’s disease, a degenerative disorder that Mr. Fox was diagnosed with in 1991.

Grants: The charity has distributed $50-million since its founding and has an annual budget of around $15-million.

Key official: Deborah Brooks, chief executive officer

Application procedures: The organization accepts unsolicited proposals from researchers pursuing novel approaches to improving scientific understanding of how Parkinson’s disease works and developing a cure. Through its scientific advisory board, the organization also identifies specific areas of Parkinson’s research that need investigation and offers grants to scientists who want to conduct such research.

Address: Grand Central Station, P.O. Box 4777, New York, N.Y. 10163; (800) 708-7644

Web site: http://www.michaeljfox.org