Name: The Michael J. Fox Foundation Continues to Work Towards a Cure for Parkinson's
Uploaded: 2019-04-03
Duration: 12 min 56 s
Description: The actor, along with the Foundations' co-founder Deborah Brooks, sits down with Fortune.

So we're incredibly honored to have Michael J. Fox, the Founder of The Michael J. Fox Foundation for Parkinson's Research, and Debi Brooks, who is the Co- Founder of the Foundation. And since it's inception in 2000, you have deployed $ 900 million or so for Parkinson's research, which is Extraordinary, that rivals the US government's spending on research. And that's really quite an unbelievable record. So the first question really is, you're a husband, a father of four, an actor, but you're also the face of a major disease. You're a face of Parkinson's disease and you're a champion for millions How do you navigate those roles and is there an overall strategy that allows you to say, okay, I'm going to go x to this moment and that? It's all be or now. It's just be in whatever role I'm playing or whatever situation I find myself in It just deal with that. And don't color it with all this other stuff. It's just, it's a way to deal with Parkinson's itself, is if I accept and I recognize and I look at it and I'm honest with it, and I just say " This is what it is ," then it's a certain size and shape and I can depend on it being that. It may expand and grow, but They can track it, keep track of it. If I don't recognize it and I don't accept it, it's just this amorphous blob of goo that just seeps into every cranny of my life and confuse things. And then I can't play the role of father or husband or actor or founder of the foundation, because I don't have any clarity. So it's just a matter of keeping things simple. One step at a time, one foot at a time and it carry's on. You talk about choices, there's this quote you said I have Parkensons that's not my choice but I have a thoussand other choices that I can make every day and I'm not going to let the one non choice weigh down the others. Right. Talk a little bit about, Well I think a lot of times my breakdown of life is choice and circumstance. And it's kind of chicken and egg what comes first. But let's say choice comes first. You make a choice, you find yourself in a circumstance. You now have other choices and they'll take you to different circumstances. And you make those choices and you hope for the best. But you gotta make the choice. You can't have the choice made for you because Because then your powerless and your drifting. But it's like one of those snake games, or Stratego of something. You put a peg here, and a peg here, and a peg here, and a peg here, and it forms a pattern. And that's your unique pattern based on choice and circumstance. When I found myself in the circumstance of I had the problems at the young age, it took me a while to absorb it and to accept it. But once I did, then [ UNKNOWN ] choice, as one of being to set the foundation and it's work out well. When you were 29 or 30 when you were first diagnosed, and it took a number of years before you felt comfortable coming out and talking about this disease Part of your challenge now, as this champion for research, is to get people to feel, hey, we need to come out right away and talk about it and be part of the research effort. How do you tell people that it's okay to talk about this? It's a really personal thing when people have it, you have [ UNKNOWN ] An Expression of the world, the disease. I noticed at 29, [ PAUSE ] I first had symptoms. I'm now 58. 58 is the age of the average First diagnosed with Parkinson's disease, so I'm now caught up with it. I'm now there. And it's no different in a lot of ways in the first day in that it is what it is. You gotta accept it and go on. But given that what We were a foundation that was cofounded by a patient. We were patient oriented. When we first started the position of Parkinson's what that it a disease of the elderly and certainly a portion of the patients that has Parkinson's are of that age. And the younger people that had Parkinson's were not comfortable coming out to their bosses, coming out, Friends and so they can be reserved, so we knew we had a job early on. To motivate patients to be agents in their own rescue. Do you find that patients are becoming more integral to the research in general? Absolutely. Parkinson patients, we're the experts on what we have. You can meet 10, 000 scientists and researchers But unless they have Parkinson's, they read all the books in the world and dissect all the brains in the world and do all that stuff they won't know what it's like to have Parkinson's. And so we have a responsibility as patients, if we expect these people to do what we need them to do, they need to be fully informed on our experience. They need to be informed on what What works with us, what we respond to. What we could contribute to the patients. Wearables that measure a certain aspects of their daily routines. Patient involvement in things and trying to find a buyer marker. So patients are a huge part of what we do. It's exciting, you know. Fortune brainstorm health is really about the intersection of biology and medicine and technology, and the idea of wearables is a new thing. Being able to identify symptoms in real time. What excites you now, what's on the agenda? We've actually had a handful of recent drug approvals, and that's been great news. They've been focused on. Treating symptoms that previously weren't really well managed by the drugs that we already have for the Parkinson's patients. But we still don't have anything that has been proven to interfere with the underlying disease itself. And a lot of that challenge comes from us really not being able to objectively say what is Parkinson's And so to be able to engage the patient community And have them be part of unpacking this very complex disease by being part of research. When you think about doing things like being able to put a wristwatch on a Parkinson's patient and a cell phone in their pocket, And then collect terabytes worth of data every day about their movements, and then add that to the patient's reported self experience. These are the kinda things that we think can really chip away at, if not break through this lack of disease understanding. And so, it's one of the ways in which We think it's really important to bring patients in but its also one of the ways that we leverage the state of science today. The state of technology today. And the state of how we engage with patients that is facilitated by things like our digital platforms and stuff. What surprises you now looking back about where we're at in Parkinsons I had such optimism and energy, and so I would wrap this up in five years, ten years, get it done. And I didn't realize that we were starting with Kitty Hawk and we wanted to build the space shuttle. And we knew that pretty early on that we had to rebuild the machine, in a sense. And We made investments in certain places and we realized their wasn't communication between the researchers and they weren't sharing information. And [ UNKNOWN ] and everybody, we just realized we needed to get a big pile of knowledge and then have people that Need it, can we get it when we need it? And be able to use it and exploit it. And that's been our big thing, and then it comes to a patient thing we have what was all this information. This clinical information, but unless we have the patients experience and the patients input it doesn't mean anything. I mean That's the match that starts the fire. You get a big pile of stuff and then you need the patient to light the fire. And to be a part of finding the answer. I'm so grateful for all the people, patients and their families, and the scientific community and pharmaceutical and everyone needs to embrace this challenge its mean so much to me. what suprises you about yourself i mean you have had parkinson since 1991 what suprises you about what you can do now >>> im still standing i found a way that To, like I said, just find a way to keep it in proportion and find ways to flourish in any areas that doesn't affect me. Doesn't reach every part of my life. It reaches certainly the way I move, the way I walk, the way I I mean a loss, [ INAUDIBLE ] there are losses but there are equivalent games whether it's in the inside or experience or exposure to people that I wouldn't otherwise meet being incredibly privileged to see progress being made and we obviously really think that if we [ INAUDIBLE ] I'm gonna be around for the moment that it That's expressed publicly, but I love to hang in as long as I can in a comfortable way and guide it along. Debbie and I were talking earlier about this challenge, because donors Always want the cure right? They always want you to push for the cure but they want it to be right on the cusp of the breakthrough. But obviously this is a marathon. I think a breakthrough we're probably gonna [ UNKNOWN ] and correct me. But an attainable goal is to identify the disease. Before its manifest. And in that way we can treat it prophylactically and it won't progress and there'll be no symptoms and no progression. So, Debby, Parkinson's is unusual in the sense it seems to be a constillation of different diseases perhaps or different Factors that create a single disease entity. I think most scientists and physicians think that Parkinson's is a broad syndrome, but it's definitely referred to as a complex disease. We know multiple ways in which people can get Parkinson's. And it presents itself in a highly varied way patient to patient people respond to medications quite, with great difference and so, we know it's complex and this is one of the challenges that we've had, is how do we think about prioritizing treatments against what part of Parkinson's Disease? And so, when I think of one of the things that's changed pretty dramatically since the foundation started Is we have a much fuller picture of what we think Parkinson's is today. We've gone from thinking about the disease as a movement disorder defined by the classic rest tremor and toughness and difficulty in walking. We see it so much more broadly today. We know that Patients are experiencing challenges with mood. We know patients are experiencing challenges with their GI Tract. We know that there can be subtle challenges with cognition and executive function. People have depression. There are just so many elements to the disease that aren't just the classic motor features. And that's really helped. Those insights have led to more drug development around managing some of these untreated symptoms. And that's been helpful. And not that long ago you discovered some genes that were associated with the disease in part because of the research money that you have deployed. We have found genes that we know can cause the disease in extremely rare cases, and of course we've found other genes that we know Dramatically increased the risks that someone can get Parkinson's disease. And so these findings have led to entirely new areas of inquiry, and that's been fantastic. The drug development landscape today has been transformed, and a lot of it is due to having found new targets. It's brought Pharma back in. And as you pointed out, we learn about these targets from studying the disease in patients. And this is still an area where there's a conversation going on with patients and families. It's kind of news to people that there can be genetic risk factors and it's still something that's working through families to understand. Do they wanna know and can they participate in research and participate In drug trials based on this news. You just got a tatto at age 57 for the first [ UNKNOWN ]. It was New Year's 1999 into 2000 and I went swimming and I saw a turtle. And it was kind of a damaged little turtle. And I followed him around for a while. And I came out and I decided to start the foundation. That's amazing. Swimming through five hoops. Five decades. Five decades? And it's just emerging, the idea of emerging and coming into something new all the time. 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The Michael J. Fox Foundation Continues to Work Towards a Cure for Parkinson's

Health

The actor, along with the Foundations' co-founder Deborah Brooks, sits down with Fortune.