Phil Hahn

Michael J. Fox: the disruptive philanthropist

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CTV News Extended: Full Michael J. Fox sit down
In this CTV News exclusive, Canadian actor and activist Michael J Fox grants a rare interview with CTV's Medical Specialist Avis Favaro. In this one-on-one sit down, the iconic actor talks about his Parkinson's and his efforts to find a cure through a new kind of what he calls 'disruptive philanthropy.'

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Seeing Michael J. Fox hold court in an interview with CTV News and then charming an audience as keynote speaker at a London, Ont. Leaders in Innovation dinner the same night -- you really believe it when he says he's feeling better than he has in years.

The 50-year-old actor (yes, he's 50 now) sat down in an exclusive interview with Avis Favaro on Monday evening before speaking at the Robarts Research Institute's 25th anniversary dinner.

  • Watch the interview tonight on CTV National News at 11p.m. And come back to this page after 11p.m. for the extended interview.

The research institute, which is amalgamated with the University of Western Ontario, studies a range of diseases including Parkinson's. Fox was diagnosed with young-onset Parkinson's in 1991, when he was 29.

A doctor then told him he had 10 years of acting left. "It felt like a bomb went off," Fox told the audience. It took 3 or 4 opinions from different doctors before he accepted his fate. He kept his condition quiet for years, admitting he was afraid of how his fans would react.

(Michael J. Fox with Avis Favaro and Rod Ellis (on sound) in London, Ont. on Nov. 21, 2011. Photo: Phil Hahn/CTV News)

Fox lives by a rule in acting called Don't Play the Result: play each scene in the moment instead of looking ahead and acting like you know what's coming next.

"I couldn't trust the audience not to play the result," said Fox.

He acknowledged publicly that he was ill during the third season of his hit sitcom, "Spin City."

"I feel great now," he said, as the peace he's achieved from accepting his condition, the constant support he's received and his advocating for research into a cure has allowed him to thrive beyond expectations.

In 2000, he created the Michael J. Fox foundation, which he says has handed out $250 million in research funds, with about $10 million going to Canadian projects.

"I am not an MD or PhD or MBA -- I am a GED with PD with high pdQ," said Fox. "So I know that what I bring to the table is hopefully inspiration and intuition."

One recipient of a grant from the foundation is Dr. Matthew Hebb, a neurosurgeon-scientist at University of Western's Department of Clinical Neurological Sciences. Hebb told CTV News he couldn't do his research if not for philanthropic support from the Fox foundation, with government funding dropping lower all the time.

"The need for philanthropy is even bigger now than it ever was," Hebb told CTV News. "Conventional funding sources are getting harder and harder to access."

(At Robarts, a 7 MRI scan showing area where neurodegeneration occurs in Parkinson's disease.)

Fox says he's reluctant to be the "poster-boy" for Parkinson's but he does try to use his profile to raise awareness and money for research. And he says with conventional research methods moving too slowly in the effort to actually find a cure, he doesn't mind if he ruffles a few feathers in his effort.

Fox said he wants to change the model of funding -- to not only find the best research but to get it funded as soon as possible. "To do it quicker than the NIH (National Institute of Health) does it and give them the money as soon as we approve their request."

But Fox said his foundation saw larger issues: "There is no department of cures, there is no secretary of cures." And while there's all kinds of research being done, he said none of it puts "patients into the equation."

"We remind researchers that at the end of the line, there are folks waiting."

He added there is no current setup to move research down the pipeline. "There are these silos of discovery but they remain silos – and they don't spill over into each other. So the order of business then became to convene these researchers, academia, pharmaceutical companies and others in government and say, ‘what can we do to move this along?'"

His foundation has even funded pharmaceutical companies, "which people think is a really radical thing," said Fox. "But if there is a compound that we want to move through the pipeline, if we de-risk it for them, if we give them 2 or $3 million and we say we want you to follow this compound to see where it goes when otherwise they might abandon it … we may stumble over something."

"We have this idea that there is a cabal somewhere, of poobahs that are throwing this stuff out and one day they will come out and say ‘here is the answer to your problem.' Well, it does not work that way -- you have kick those poohbahs in the ass and get them going."

It's a kind of "disruptive philanthropy."

Fox said he feels his Parkinson's has "plateaued," allowing him to take on more acting work.

His energy was fully on display at a recent fundraiser in New York -- in which his Marty McFly-like guitar performance during "Johnny B. Goode" went viral.

"I had no idea" it would be so popular, Fox told CTV News. "It was actually really interesting, that whole night." What most people don't know is that he was close to not going through with the performance because of tremors.

"I just wasn't feeling well. And then Tracy (Pollan, his wife) and Jeff, my guitar coach, said, ‘Just go do it, just go try it.' And I did it, and I just ripped it."

If you haven't seen it, you can watch Fox's performance here:

When told it seemed his symptoms just seemed to stop when he played guitar, Fox's response was simply: "It kind of happens that way," before sharing an anecdote about a man in Holland with late-stage Parkinson's who can't speak or move, but can still ride a bicycle.

"And these are the kind of things our foundation will hopefully will try to figure out, why that happens."

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Comments are now closed for this story

Gord Clark
said
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Thank God that PD patients have a champion such as Michael J. Fox in their corner. We can only hope that his efforts to find a cure come to pass in the near future. He makes me proud to be a Canadian.


Pete The Guy
said
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Remember when the "all knowing expert on everything" Rush Limbaugh said that Fox was playing up his Parkinson condition for the camera's?


Penny Preston, Blue Mountains, ON
said
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Thank goodness for Mivhael J Fox!! Not only is he an inspiring role model who truly lives by his motto "I have Parkinsons - Parkinsons doesn't have me" - BUT he & his MJFFoundation offer real hope to we fellow PD sufferers that soon there will be better treatment & eventually a cure. Go Michael!


Mariette West
said
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Go Michael Go!!! We love you and your efforts ARE MAKING A DIFFERENCE. We hear all about your in Australia and people there know and love you too. Please keep carrying the torch you carry so well. We are watching you, and loved ones, doing so well in spite of this annoying disease which has, I believe, met its match in you and in many others, who, like you, just do not let it beat them! Keep up your fight, you are a winner, across the board. Thanks Lisa, for sharing this touching interview, with Canadians.


Glenn (New Zealand)
said
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I remember him from when he made a movie in New Zealand with Peter Jackson. Really nice guy. Go Marty go!


Ex Coelis
said
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A great Canadian, a great actor(whether theirs any Elvis in him, or not), has THE perfect profile for almost...anything. One thing he has in spades; CLASS. Anyone who quotes or claims to follow various example of Vincent Price? CLASS! Long LIFE any many prosperous days to you Michael J. Fox


James in Calgary
said
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Rod Ellis..one of the great sound men in the industry. I enjoy his work.


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