In 2000, Parkinson’s disease forced Michael J. Fox’s hand, demanding his resignation from a 25-year acting career that he loved, and calling for him to jump off a huge metaphorical cliff. Yet the years that followed have rolled out a new kind of red carpet for the actor, and evolved to become what he now calls his life’s work. While living with Parkinson’s for 21 years, he’s managed to create a foundation that funds hundreds of millions of dollars of research and produced a cutting-edge Parkinson’s trial program for which he is currently seeking participants. The Fall of 2013 holds special promise for the actor who is scheduled to return to television as a leading man.
“Anyone who’s got a better mousetrap, that’s fantastic. We’d love to talk to them,” said the actor to a roomful of tech leaders from Google, PayPal, CNN, StubHub, L’Oreal, and the viral guru Ben Huh, at October’s Media Tech Summit held in the Marriott Marquis in Times Square. Since The Michael J. Fox Foundation (www.michaeljfox.org) empowers the drug research process, and helps the community to be partners in funding and finding cures, technology is key. And Fox was on a mission.
If one were expecting to see an actor crippled by the ticks of Parkinson’s disease, they’d be surprised. Instead of wild, spasmodic twitches, Fox occasionally had a wobble. As he used his hands to animate his conversation, his PD could almost pass for normal enthusiasm. His medication carefully keeps the symptoms from shattering his countenance, and with a look of stern concentration, he focused on interviewer Marc Pollick, founder and president of The Giving Back Fund. As the interview continued, he wasn’t averse to sharing the wit and humor his audiences so enjoyed in his characters from Spin City, Back to the Future and Family Ties.
Pollick: Do you dance?
Fox: My dancing is all unintentional.
“We’ve seen him warm up the crowd. And when he speaks he has a beautiful way of simplifying his message of hope. People are certainly drawn to him,” his chief digital officer Laxmi Wordham said.
Said Fox, his slate-blue eyes full of conviction,” “I want to be careful when I do things, not to have it about me but through me. And that leaves room for collaborators and partners.” (He and Wordham were mobbed by the crowd afterwards.)
A Battle Towards Optimism
In the 21 years since Fox’s diagnosis, the actor has worked hard to create “A Department of Cures,” something that, he says, hadn’t yet existed in the Parkinson’s research community. He often speaks about “purity of motive” as if the mantle for finding a cure has been placed on his shoulders.
Fox’s Parkinson’s first revealed itself when he was 29, and awakened to a twitching pinky that fluttered against his face like a moth’s wing. After his diagnosis in 1991, he wrestled with it for years, wondering if revealing it would ruin his career. He made his public announcement in People magazine in 1998, and tried to avoid the reaction that followed.
“Once I took the genie out of the bottle, the genie’s out of the bottle. I can’t get it back in. I can’t control people’s perception of me,” Fox said. “I was avoiding TV news because they were covering it. Like, I was on MSNBC, and I was in slow motion, which means you’re either dead or under indictment.”
In his second memoir, Always Looking Up, Fox describes how difficult it was to play a character who didn’t have Parkinson’s while acting in and producing the sitcom Spin City. On set, he often focused his trembling symptoms into one extremity, and hid the shaking arm or leg behind cast and props. He expressed frustration at watching his ticks in the editing room. Other times, his ticks would cause him to freeze, and he’d need to explain what was going on to the other actors. He’d save his medications for when he was in front of the cameras, and cast and crew would often be confused by his transformation from a shuffling lackluster personality to that of the vibrant performer. His abilities to overcome his disabilities are surprising. In his very last episode, he can be seen nimbly running down the steep steps of city hall – a great fete to someone whose legs could betray him. (His new show in the Fall of 2013 will be about a father of three, living in Manhattan with Parkinson’s.)
It was by slipping into Internet Parkinson’s chatrooms under a false name that he realized he wasn’t alone. There, people were expressing the same fears over career and life and battling the same battles with doctors and medications that he was going through.
“This is the key thing: I realized I was part of a community,” said Fox.
Yet he also realized the Internet was also a great tool for education and fundraising, which became key to his Foundation.
One wouldn’t imagine an actor whose special box of tricks once included skateboarding, indoor rollerblading and counter-jumping, now to be glib with Parkinson’s. But Fox made a choice to be optimistic back in 2000 when he filmed his last episode of Spin City, and spoke before the Senate Appropriations Subcommittee on Labor, Health and Human Services. His speech was followed by Dr. Gerald Fishbach, the director of the National Institute of Neurological Disorders and Stroke of the National Institutes of Health, who reiterated that Parkinson’s could be cured, adding that, with sufficient funding, it could be defeated in five to ten years. Fox grabbed hold of the statement with both of his shaking hands as well as his heart and mind.
With an eye toward advancing research, he established the Michael J. Fox Foundation (michaeljfox.org), that has directed $304 million to Parkinson’s research in the past 10 years.
Trials and Tribulations
Fox was lucky enough not to be burdened with depression (a common symptom of PD) as part of his debilitating challenges and is able to inspire hundreds of subgroups to raise funds.
Directly after Hurricane Sandy struck New York, the Manhattan-based foundation still limped along with 20 percent of its staff back at work to plan the year’s huge fundraising Gala on November 10th. After the 2012 NYC Marathon washed away, the benched runners still raised $600,000 for “Team Fox” — the community-based fundraising arm of the Foundation. One marathon runner brought in $400,000 in three years. Another ran the 2,600-mile Pacific rim, raising $150,000. And then there are bake sales, art auctions, bicoastal galas, golf outings and just about any kind of fundraiser a person aspires to lead. Even Nike was inspired to philanthropy, creating 1,500 pairs of the sneakers Fox wore in Back to the Future 2, turning on its marketing engine, auctioning them on ebay to garner $4.7 million in matched funds.
“If you’re interested, just follow the breadcrumbs we laid out on our website,” says Fox.
Yet even with millions in funding, there are obstacles to drug research; not in the least is that neuro-medicines can take decades and billions of dollars to develop. Like most inventions, under-funded drugs in the research phase can plummet into “the Valley of Death.” Funds from the Foundation help to cut away risks from research and get more prospects through the dreaded valley.
“We’ll make a $5 million advance to multibillion dollar corporations to keep them working on a certain compound we think has promise, so we’ll de-risk that research for that company,” explained Fox.
The Foundation chaperones ideas that are most likely to have an impact on human health, according to Foundation co-founder Debi Brooks. It endeavors to get a rare, eagle-eye view of Parkinson’s research in order to have a comprehensive analysis of the entire field. One of its goals is to unite research into one stream toward a cure, instead of having a bunch of separatist efforts compete with each other.
“There are all of these silos of collected information — whether it’s academic or government or pharma or whatever — and they’re just stacked on top of each other and there’s no means forward. There are no highways to cures and therapies,” explained Fox. “And so our mission is to try to tip those silos over and get them moving in a linear way as early as possible, and then creating a thruway for this information. And that happens through collaboration.”
According to his website, his Foundation’s team of Ph.D. and MD neuroscientists and business-trained project leaders orchestrate the efforts of all the players and keep the business moving efficiently. The goal is to ensure that the best ideas are on a path to the patients who need them. This also means promoting consortiums in which researchers share their work, and listen to what others are developing.
It moves research from the laboratory into clinical trials. One of its fundees, Cynapsus Therapeutics, recently won “top ten neurology projects to watch” for the drug apomorphine, for Parkinson’s symptoms.
Progress is being made toward biomarkers and drugs that cut through the PD symptoms are in trial phases. Because each patient may suffer from different symptoms, the Fox Trial Finder collects data that allows scientists to place people into cohorts before clinical trials begin. Trial Finder (www.foxtrialfinder.org) was launched in April, and Fox was Diane Sawyer’s ‘Person of the Week.’
“On that day we actually got 1,000 patients to sign up for clinical trials,” said Wordham. Six months later they have more than 11,000 volunteers signed up.
“We’re trying to get people involved in clinical trials; to be collaborators in their own rescue …Fox Trial Finder is a way patients can find out what clinical trials are happening near them. They fill out a profile anonymously and get hooked up with researchers all over the country and it’s an amazing tool,” said Fox.
“So if you know someone with Parkinson’s please let them know,” said Wordham.
Some 35,000 data downloads have been made from the Foundation’s PPMI biomarker study, and shared internationally by scientists, who now have access to the largest repository of PD data and biological samples collected to date, according to the website.
Working with MJ
As a board member, the Canada-native is both driven and optimistic to work with, Wordham told Networking®. Fox talks a lot about purity of motive – and that purity seems to carry over into the work of everyone at the Foundation.
“We’re here to give hope, to build something people can rally behind,” Wordham said.
(Wordham has an engineering degree from Princeton, a Harvard MBA, and worked six years at Lexis Nexus, where she helped to build the popular lawyer reference site Martindale. She joined the Foundation to move “to a much smaller, more nimble organization” and to “work at an organization that was making a difference and growing” while staying in the tech world.)
“Everyone you meet in the staff, they’re mission specialists…like navy seals,” says Fox.
Day to Day
He insists his New York Times best sellers Lucky Man and Always Looking Up; The Adventures of an Incurable Optimist, are not ghostwritten.
(“A famous model came up at a party and said, “I love your book. Who wrote it for you?” And I just said, “I did. Who read it to you?”)
It can’t be as easy as the husband and father of four makes it seem. In the Always Looking Up prologue, a reader gets a sense of his own frustration and amusement as he describes his daily routine. Each morning, before stepping from bed, he painstakingly coerces his feet to twist out of their natural, curling, “praying” position. At 51, he struggles with legs that “haven’t yet earned my trust for the day” and allows pills to make some of his motor functions more reliable. He avoids clothes with buttons except his favorite Levis (“making me a fashion victim in the truest sense of the word”) strangles his tube of toothpaste to produce a thin, wobbly, line onto his toothbrush, and then clamps the brush in his shaking hand to become like “the most powerful state-of-the-art electric toothbrush on the market.” Yet, he says his parents trained him to answer his success with gratitude and service. In slowly putting one foot in front of the other, he notes, “I haven’t regretted a day I’ve invested in living that day.” At 5’4” he says he’s accustomed to making the most of “the head start one gains from being underestimated.”
Fox chased his actor’s ambition to Hollywood before graduating high school. He negotiated his first large role as Alex P. Keaton in the sitcom Family Ties from a phone booth.
A few years later, he married his sitcom girlfriend, Tracy Pollan, and describes her as the one true love of his life. (The couple has a $6.3 million house in Quogue, NY.) “Sometimes I have only the courage of her convictions, her unflinching support, and her assurance, almost matter-of-fact, that I should trust my heart, my gut and her love,” he writes.
He recognizes that he is now the face of Parkinson’s that many recognize and uses his celebrity judiciously. “It took me seven years to step up to do this,” he said. His disease has led him to touch more lives, lobby congress, play guitar with The Who, and do things that he says… unbelievably… “are almost worth getting Parkinson’s for.” An enthusiastic supporter, before each runner heads into the 26-mile marathon, Fox has been known to stand on the path and try to hug each one of them.
Yet, when asked if he had two wishes that could come true, Fox doesn’t hesitate. The first, he said, would be to streamline Parkinson’s research.
And the second?
It’s not for himself, it’s for the person in the crowd. Sometimes Fox can tell, just by the way the person moves, that they too have Parkinson’s. “There’s a moment when we hug. And I wish that I could just whisper in their ears when the answer’s coming,” he said, his voice cracking. “We’re working on it.”
The Foundation plans to fund another $55 million to Parkinson’s research this year.