[paula_w]

Dated today, Nov. 11 - article in USNews
From Disease, Determination
MICHAEL J. FOX | actor, philanthropist

http://www.usnews.com/articles/news/special-reports/2007/11/12/michael-j-fox.html

By Bret Schulte
Posted November 12, 2007

As an engaging comic actor, Michael J. Fox has been critically acclaimed for the iconic roles he created in the 1985 film Back to the Future and the hit NBC sitcom Family Ties. But more recently—and to Fox, more important—he has emerged as the nation's leading spokesman for Parkinson's disease, the degenerative disorder of the central nervous system.

Through the Michael J. Fox Foundation for Parkinson's Research, Fox, 46, has raised public awareness of the disease and generated $90 million for research. With his support for stem cell therapy, which could potentially lead to a Parkinson's cure, he has also inserted himself into the political debate. It is estimated that over 1.5 million people in the United States have Parkinson's disease. One of them is Fox himself.


Fox spoke recently to documentary producers Bobbie Birleffi and Beverly Kopf. Excerpts:

How is the transition from celebrity to leader?
The celebrity part of my life is hard to separate from anything else. But I think that civic responsibility and a desire to do good, especially when so much good has been done unto you, is natural. And celebrity is not what guides me. I know that people are more likely to listen when I speak. And so I take that as a privilege and a great responsibility.

It hasn't gotten in your way?

No. It's like, you know, "You're short." Yes, I am short, so now what? That's not going to change. So if you're waiting for that to change, it's not going to happen. So let's move on.

Talk about your decision to disclose that you have Parkinson's disease.

I kept my diagnosis a secret from everyone except my closest family and some key business people. But I didn't want it to influence my ability to get work or my audience. I didn't know whether they could laugh at someone they knew was ill. I found out that it didn't, but the symptoms got to the point where people knew something was up, and it was affecting my relationships at work. I couldn't say, "I'm waiting for a pill to kick in," or "That time of day isn't going to work for me." So I disclosed it. And the public reaction was a tsunami of support.

How did they demonstrate that support?

When I opened up to people, I also opened up to this community that I had shut myself off from. And once I began to see its challenges, it was this huge experience of identification—talking to people online: "Do you feel that in the morning?" or "Do you find that this reaction is common?" And then I started to [talk] about treatments and cures. I didn't want to be a caped crusader; I'm like, "I'm a song-and-dance man!" But it became clear that people were looking to me.

What is your foundation doing and how well is it reaching your goals?
Initially, our war cry was that we were going into business to go out of business. And we were very encouraged. We had information that the possibility was there for cures, or at least transformative therapies. And then we realized that we could in fact build a train, that the technology was there to build a locomotive. But then we started to say we have no tracks, so you have to start to do that.

We're pursuing things like biomarkers, definitive ways to diagnose and predict the disease, as well as prophylactic therapies. We're looking at everything from green tea to trophic factors and gene therapy. We're looking at ways to pass the blood-brain barrier and deliver new treatments.

Seven years in, do you feel you're close?

Yeah, I do. You get smarter as you go, and that's good news and bad news. It's good news because you have more information. But you also see where the gaps are that have to be filled. You have to work with biotech and [pharmaceutical companies]. We can come in and de-risk [research] for them. We can say, "We'll pick up the $3 million for that." If you were to say, "Who's in charge of finding a cure for Parkinson's?" as far as we're concerned, that's us.

How did you get involved in the controversy with stem cell research?

I was watching President Bush exercise the first veto of his presidency to knock down stem cells, and I just got ******. I just said, "This isn't right." Polling has demonstrated that Americans support stem cell research. And so I knew that people would be receptive to the message, and again, I knew I was uniquely qualified to deliver it. [In the 2006 midterm elections, Fox endorsed candidates on the basis of their support for stem cell research.] The flak that I ran into, let's face it, did us a huge favor. It turned what might have been a one- or two-day story into something that held the attention of the country for two weeks.

How do you see yourself as a leader? How do you get people to follow your ideas?

I only have to be smart enough to find people who are smarter than I am, and I've done that. Some of us don't like to accept that those people exist; I found they exist in droves. And I've happily found 30 or 40. And then you let them go, let them do what their gifts will allow them to do. And the other thing, too, is to create a culture of pride and of purpose.
I don't really think of myself as a leader, but I do know from the people that I really respect and admire historically—the MLKs or Gandhis—that I have to accept the idea that what I do may not affect me in my time. And so my responsibility is greater than to myself. And there's great joy in that on a selfish level.

What role does your family play in your optimism?

I have an unbelievable wife who has absolutely refused to be the doting, suffering wife. She's just life as usual. And we have four kids—a son that's going into college next year, my youngest just started kindergarten, and two in middle school. So we have a snapshot of the entire experience of childhood. And that's precious beyond words. [My daughters] see me in the morning while I have a hard time getting the juice up to my mouth but not making an issue out of it, and I think that gives them a sort of resiliency and a sense that you take life on life's terms. And my son struggles with what college to go to. And my littlest one, she just met a boy in kindergarten and she wrote him a note and wants to know is that allowed. I mean that stuff just keeps you alive.

You said that part of your drive is that you want to dance at your children's weddings.

It's embarrassing how blessed I am. When I was diagnosed in 1991, if you had told me in 2007 that I'd be playing tennis every day and golf and be writing a second book, I would have been amazed. So I know I'm going to be dancing at my daughters' bat mitzvahs. When I look to the future, I always look to the best version of it. If I meditate on the worst-case scenario, by the time it materializes, I'll have experienced it twice. So I find there's no point in that.

[Judith]

When I look to the future, I always look to the best version of it. If I meditate on the worst-case scenario, by the time it materializes, I'll have experienced it twice. So I find there's no point in that.

I believe that there is much we can do to cope better by choosing not to focus on the negative.

Thanks!

Judith