Name: The Michael J. Fox Foundation Continues to Work Towards a Cure for Parkinsons
Uploaded: 2019-12-13
Duration: 12 min 56 s
Description: The actor, along with the Foundations' co-founder Deborah Brooks, sits down with Fortune.

The Michael J. Fox Foundation Continues to Work Towards a Cure for Parkinsons

Health

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 Debbie Brooks, who is the co founder of the foundation. And since its inception in 2000 you have deployed $900 million or so for Parkinson's research, which is extraordinary, that rivals of the U. S. Government spending on research and that's really quite an unbelievable record. So the first question really is. You know, your husband, the father of four, you're an actor, but you're also the face of a major disease. You're fixed 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, you know? Okay, I'm gonna devote extra to this moment that I'll be here now, just them being the whatever role I'm playing. Whatever. We're suspicion. If I myself in, just just deal with that and color it with all this other stuff. It's the way that the deal of partisans itself is. If I accepted, I recognize and I look at it, I'm honest with the energetic. This is what it is. It's a certain size and shape and independent being that in a minute may expand and grow, but I can track it and keep track of it if I don't recognize it and I don't accept it. It's just amorphous blob of goo that they even every cranny in my life and confuse things. And and then I can't play the role of father, her husband or actor or founder of the foundation, because enemy clarity. So it's just a matter of keeping things simple one step at a time. One supported him and the kid is on and you talk about choices. There's this quote. You said I have Parkinson's. That's not my choice. But I have 1000 other choices that I can make every day, and I'm not gonna let the one non choice way down the others a little bit about why I think that happens. I break down life assed choice and circumstance, and it's a chicken and egg. What comes first, But let's say choices, So if you make a choice, do you find yourself in a circle? You now have other choices and they'll take it under circumstances, and he make those traces and hope for the best, but you gotta make a choice. You can have the choice made for you because I need you. Panelist. You're drifting. But but one of the steak games see Gore's only words that put Pay here and pay your and pay your opinion and it forms a pattern and that your unique pattern based on your tuition circumstance When I found myself have apartments at a young age, it took me a while to absorb it and accept it. Once I did that, I'd made a series of choices, one of them being to start a foundation. And we get well when you were 29 or 30 when he was 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? Well, it's really personal thing, with people having having involved and how they expressed in the world it disease as I know it's 29 29. I processed symptoms. I'm now 57. 58. 58 is the age of the average first diagnosis party. So I'm not caught up with my mail now there it is no different in a lot of ways in the first day in that is what it is. You accepted it. Go on. But given the work of a nation that was co founded by a patient, every patient when we first started the possession of partisans was that it was a very elderly. And certainly that portion of people have. Partisans are that age, and the younger people had partisans were not comfortable coming out and connected bosses coming into this friends. And so they were going to 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 interval to the research agenda? Absolutely. Parkinson stations were the experts on what we have. You could meet 10,000 scientists and researchers, but if it unless they're partisans, they don't. They read all the books in the world and they kept all the brains in the world and do all that stuff. They won't know what it's like to have Parkinson's. That's what we have. We have a responsibility. Patients, if way expect these people to do what we need to do to be fully informed. And the informant, our experience. And he'd be formed. Uh, what? What? Uh, what works with us? What? What we respond to What, What, what what we contribute with wearables that measure certain that aspect of their daily routines and with patient involvement in the things that trying to find a biomarker. So patients there he is part of what we do. It's exciting, You know, Fortune brings from health is really about the intersection of biology and medicine and technology. And the idea of wearables is a new thing. And being able to identify, you know, symptoms in real time and and how, what? What excites you now? What's on the agenda? We've actually had a handful of recent drug approvals, and that's great news. They've been focused on treating symptoms that previously route weren't really well managed by the drugs that we already have for Parkinson's patients. But we still don't have anything that is improving 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 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 just terabytes worth of data every day about their movements and then add that to the patient reported self experience, these kind of things that we think can really chip away at it, not break through this lack of disease understanding. So it's one of the ways in which we think it's really important to bring patients in. But it's also one of the ways that we leverage kind of the state of science today, the state of technology to the day and 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 weary about where we're at in partner and such optimism and energy and grab something five years. Then you get a gun. And I realize that way starting with, uh, Kitty Hawk And we wanted to build a shuttle and that pretty early on that we had to rebuild the machine in a sense and we made investments in places and we realized, uh, communication between between the between researchers and they were sharing information and for mine and everybody. And we just realized we needed to get a big pile of knowledge. And and I have people that need it come and get it when they needed it and be able to use them, exploit it. And that's been our big thing. And then begin comes the patient. We have all this information, critical information, but unless we have the patients experience efficient input, it doesn't mean anything. That's a magic. It's just fire. You get a big cloud stuff, then you need to patient toh firing and and to be to be a part of part of the fun. The answer. I'm so grateful for all the people that patients and their families, and in fact, it was Indian pharmaceutical community and everyone that embrace this challenge. What's surprising about yourself. You had Parkinson's since 1991. What surprises you about what you can do now? I'm still standing. Um, it I found a way Thio have generated too keep even in in proportion and and find out find ways that's it. To flourish in any areas that it has an effect. I mean, it didn't doesn't reach every part of my life way just suddenly were moved away. I walked away, I lost cinnamon spontaneity, their losses. But but there. But there are, uh, equivalent, uh, gains and wonders on inside our experience or exposure to people that I wouldn't otherwise meet being incredibly privileged to see progress being made. And I don't realistically think that if we sure, I'm gonna be around for the moment that it expressed publicly. But I love him a Z can in a comfortable way. Guided along. Debby and I were talking earlier about this sort of challenge because donors always want the cure right. They always want you to push for the cure, but they want to be right on the cusp of the breakthrough. But obviously, this is a long This is a marathon. I think briefly, we're gonna play jump in and Correct Me. But unattainable goal is identify the bodies before before its manifest. And in that way we can treat it proper, actually, and it won't progress will be no symptoms and no progression, Debbie, Parkin says, is unusual in the sense it seems to be a constellation of different diseases, perhaps or different factors that create a single disease. And I think most scientists and physicians think that Parkinson's is abroad syndrome and so but it's definitely referred to as a complex disease. We know multiple ways in which people can be. I can get the Parkinson's and it presents itself in a highly varied way. Patient to patient people responded medications quite with great difference. And so we know it's complex and this is one of the challenges that we've had is what do we how do we think about prioritizing treatments against what part of Parkinson's disease? And so when I think of one of things that changed pretty dramatically over 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. You know, we know that patients are experiencing challenges with mood. We know patients are experiencing challenges with their G I tract. We know that they could be subtle, uh, challenges with cognition and executive function. People have depression. There's just so many elements to the disease that aren't just the classic motor features, and that's really helped it. That's let those insides of lead to more drug development around managing some of these untreated symptoms 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 increase 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 has is due to having found new targets that's brought farmer back in and As you point out, we learned about these targets from studying the disease and 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 there's still something that's working through families, Understand? Do they want to know? And can they participate in research and participate in drug trials based on this new? You just got a tattoo at age 57 for the first New Year's 99 92,000 and I'm swimming and turtle damage. Old Turtle and I followed him around for a while and and and I came out and I just had this foundation. That's amazing. Swimming through 55 decades, five decades. Uh um, and some to emerging the idea of emergency Come in. We knew all the time