WEBVTT - Beating Parkinson’s to the Punch with Laila Ali 0:00:00.040 --> 0:00:02.880 I'm Baritone Day Thurston and this is Spit and I 0:00:03.000 --> 0:00:11.640 Heart Radio podcast with twenty three in me. This is 0:00:11.680 --> 0:00:14.520 the show that explores how DNA is changing our lives 0:00:14.560 --> 0:00:17.239 and the world around us. Today we're gonna get the 0:00:17.320 --> 0:00:23.280 very latest information on Parkinson's disease. In roughly one million 0:00:23.320 --> 0:00:26.440 Americans will have been diagnosed to be living with this disease. 0:00:26.480 --> 0:00:31.200 We get about sixty new diagnoses every year. And we've 0:00:31.240 --> 0:00:35.040 gathered this conversation with a full range of people who 0:00:35.120 --> 0:00:39.839 are knowledgeable of, impacted by, and working toward the eradication 0:00:40.280 --> 0:00:43.360 of this disease. We have in the room with me 0:00:43.520 --> 0:00:48.320 right here, Leila Ali a former World Championship professional boxer 0:00:49.040 --> 0:00:53.080 twenty four and OH record twenty one knockout. She's an author, 0:00:53.520 --> 0:00:55.640 she is a television host, she is a health and 0:00:55.680 --> 0:00:59.120 wellness expert with her own product line, and she is 0:00:59.160 --> 0:01:01.800 of course the young his daughter of Muhammad Adli, who 0:01:01.880 --> 0:01:05.240 lived for over thirty years with the disease. He felt 0:01:05.280 --> 0:01:07.480 like it made him even stronger to show people like 0:01:07.520 --> 0:01:09.440 I have this disease, but I'm still gonna come out. 0:01:09.480 --> 0:01:11.880 I'm not gonna hide. Nothing's gonna stop me. We have 0:01:11.920 --> 0:01:14.200 Debbie Brooks with us. She is the co founder and 0:01:14.240 --> 0:01:18.160 executive vice chairman of the Michael J. Fox Foundation, working 0:01:18.200 --> 0:01:21.160 to deployed capital and innovative ways to move the needle 0:01:21.200 --> 0:01:24.760 on this disease. I've come to appreciate the Parkinson's patients. 0:01:25.280 --> 0:01:28.400 When this disease lands in their lap, They're likely going 0:01:28.440 --> 0:01:31.119 to have a lot of good years in front of them, 0:01:31.400 --> 0:01:33.280 but there are so many things they can start to 0:01:33.319 --> 0:01:36.600 do right away that can set that the vector in 0:01:36.640 --> 0:01:39.800 the best posture. We have. Dr Andy Singleton, a neuro 0:01:39.840 --> 0:01:44.000 geneticist senior investigator at the National Institute for Aging, which 0:01:44.040 --> 0:01:46.840 is part of the National Institutes for Health in i AGE. 0:01:47.120 --> 0:01:49.720 Just from talking with patients, you see so much benefit 0:01:49.840 --> 0:01:53.520 from the things that they pursue around exercise and dance 0:01:53.560 --> 0:01:56.880 and yoga and doing the cross world and maintaining an 0:01:56.920 --> 0:02:00.320 active lifestyle. And later on in the conversation, I'll be 0:02:00.400 --> 0:02:04.880 talking to someone currently living with the disease. Jimmy Choi 0:02:05.360 --> 0:02:09.520 three time American Ninja Warrior, an athlete, a motivational speaker, 0:02:09.840 --> 0:02:12.720 and a Parkinson's advocate. I was told that I would 0:02:12.720 --> 0:02:15.400 be in a wheelchair when I'm in my forties. I'm 0:02:15.400 --> 0:02:19.640 far from being in a wheelchair. So I'd like to 0:02:19.680 --> 0:02:22.600 start with Andy and Debbie especially to just kind of 0:02:22.639 --> 0:02:27.280 lay the foundation down of what is Parkinson's and share 0:02:27.400 --> 0:02:30.959 more numbers of who's affected, but also how how many 0:02:30.960 --> 0:02:33.280 are at risk and why this is such a threat 0:02:33.320 --> 0:02:37.040 that needs serious proactive management. Can one of you take 0:02:37.160 --> 0:02:41.440 us into the basics of Parkinson's. We believe there are 0:02:41.600 --> 0:02:45.960 around a million people affected with Parkinson's disease in North America, 0:02:46.120 --> 0:02:51.040 and estimates suggest around six million people affected worldwide, although 0:02:51.360 --> 0:02:55.519 that's probably a really gross underestimate. It's it's far more 0:02:55.560 --> 0:03:00.560 people than that. I think what's particularly concerning is, of course, 0:03:00.560 --> 0:03:05.360 our population is graying right where living longer, and the 0:03:05.360 --> 0:03:08.200 proportion of people who are over fifty, over sixty, over 0:03:08.240 --> 0:03:12.200 seven is increasing, so the number of people affected by 0:03:12.440 --> 0:03:15.799 age related disorders will also increase, and of course Parkinson's 0:03:15.800 --> 0:03:19.520 diseases an age related disorder. The biggest risk factor is 0:03:20.000 --> 0:03:24.160 his age. Can you define what Parkinson's is? Many of 0:03:24.240 --> 0:03:29.120 us have an image of tremors. We've known some world 0:03:29.160 --> 0:03:32.320 famous and celebrity figures who've suffered from it. Can you 0:03:32.360 --> 0:03:35.400 just lay down an elementary introduction to how the disease 0:03:35.440 --> 0:03:39.200 even works and what its symptoms are, so we don't 0:03:39.240 --> 0:03:41.760 really know how the disease works. When you think of 0:03:41.840 --> 0:03:43.800 the disease, you think of what a patient looks like, 0:03:43.960 --> 0:03:45.640 and I think one of the first things that you 0:03:45.720 --> 0:03:50.000 notice is that the patient looks stiff, they're slow in movement, 0:03:50.440 --> 0:03:54.040 they often have tremor, so these movement disorders the first 0:03:54.120 --> 0:03:56.560 thing you notice. But when you talk to anyone with 0:03:56.600 --> 0:03:59.080 Parkinson's disease, you realize there's so much more to it 0:03:59.120 --> 0:04:01.000 than just the movement sort of. There's lots of other 0:04:01.040 --> 0:04:05.800 things that affect p D patients. Depression, some issues with 0:04:06.120 --> 0:04:10.760 memory and thinking, other kind of autonomic and disautonomic features 0:04:10.800 --> 0:04:14.000 that affect all sorts of activities of daily living and 0:04:14.080 --> 0:04:17.840 quality of life. The diseases and age associated disease. So 0:04:18.400 --> 0:04:21.080 the older you are, there your risk. And with a 0:04:21.120 --> 0:04:24.560 typical onset in the fifties or sixties something like that, 0:04:25.160 --> 0:04:28.760 it's a slowly progressing disease typically, so patients will begin 0:04:29.360 --> 0:04:32.560 with some kind of feature like a tremor or something 0:04:32.600 --> 0:04:35.280 that can seem quite benign at first, but it's an 0:04:35.279 --> 0:04:38.039 insidious disease and that it will just continue to progress. 0:04:38.240 --> 0:04:42.320 There are some treatments that help to deal with the symptoms. 0:04:42.360 --> 0:04:45.839 So they helped to mask or affect some of the 0:04:45.839 --> 0:04:48.359 symptoms that you most commonly see in Parkinson's disease. But 0:04:48.680 --> 0:04:52.080 there's no disease modifying treatments that the disease will march on. 0:04:52.120 --> 0:04:55.560 There's no treatment yet to halt or slow the disease. 0:04:56.800 --> 0:05:01.880 And Debbie, what is the Fox Foundations perspective on Parkinson's 0:05:01.920 --> 0:05:04.360 and where the disease is today and where the battle 0:05:04.400 --> 0:05:07.440 against it stands well. I think one of the things 0:05:07.440 --> 0:05:10.039 that Andy mentioned, which is we don't have treatments that 0:05:10.120 --> 0:05:14.520 really address the underlying disease course that remains the greatest 0:05:14.560 --> 0:05:17.360 unmet need for patients, and so our organization is really 0:05:17.400 --> 0:05:21.920 focused on how can we, in partnership with patients work 0:05:21.960 --> 0:05:25.280 together to accelerate progress. And even though the disease is 0:05:25.320 --> 0:05:28.640 slow moving over time, patients are really struggling with more 0:05:28.640 --> 0:05:32.520 and more unmanaged elements of the disease and it becomes overwhelming. 0:05:33.000 --> 0:05:35.279 If you know one person with Parkinson's disease, you know 0:05:35.360 --> 0:05:39.039 one person with Parkinson's disease. It's really highly variable from 0:05:39.080 --> 0:05:42.560 person to person, and so how do you bring together 0:05:42.839 --> 0:05:45.080 a package of needs for one patient versus the next 0:05:45.120 --> 0:05:47.600 and put an organizing principle around these things so that 0:05:47.640 --> 0:05:50.600 you can advance progress. I want to talk a bit 0:05:50.600 --> 0:05:54.640 about what that experience is, and Leila would turn to you, 0:05:54.760 --> 0:05:57.599 because Debbi mentioned is a slow moving disease and it 0:05:57.640 --> 0:06:00.680 progresses over time, and your father lived this disease for 0:06:00.720 --> 0:06:04.760 just over thirty years. What do you remember of the 0:06:04.800 --> 0:06:08.799 moment from your life where you were aware that something's 0:06:08.839 --> 0:06:10.720 happening with your father. It's all a bit of a 0:06:10.720 --> 0:06:13.960 blur in terms of when I first knew that he 0:06:14.040 --> 0:06:18.280 had the disease. I remember probably being about seven years 0:06:18.279 --> 0:06:20.680 old when I noticed a change in him with the 0:06:20.680 --> 0:06:23.919 tremors and a little bit of a slurred speech. And 0:06:24.600 --> 0:06:27.200 you hear kids in school saying, oh, your father has 0:06:27.240 --> 0:06:29.400 brain damage and things like that, but I didn't really 0:06:29.480 --> 0:06:33.120 understand whether he did, he didn't. He had a disease. 0:06:33.240 --> 0:06:34.800 You know, as a kid that young, you don't really 0:06:34.880 --> 0:06:37.559 understand even what a disease is. But I do remember 0:06:37.600 --> 0:06:40.320 getting older, maybe when I was twelve thirteen, when I 0:06:40.320 --> 0:06:43.680 really started to understand that he had a progressive disease Parkinson's, 0:06:43.760 --> 0:06:47.440 and that he started changing more and more over the years. 0:06:47.680 --> 0:06:50.080 I just remembered him always never wanting us to feel 0:06:50.120 --> 0:06:52.680 sorry for him and explaining to us like he would 0:06:52.720 --> 0:06:54.840 just say, oh, it's just my hand, it's just shaking, 0:06:54.880 --> 0:06:57.520 but I'm fine. You know, everything else is fine. And 0:06:57.560 --> 0:07:00.560 in terms of how your family operated and his role 0:07:00.600 --> 0:07:04.520 in the family, over time, as the disease made progress 0:07:04.560 --> 0:07:06.760 in his body, did that further effect, like how did 0:07:06.760 --> 0:07:09.039 it show up in the family. Well, my parents divorced 0:07:09.200 --> 0:07:11.400 when I was young, so I didn't actually live with 0:07:11.440 --> 0:07:15.160 my father, but I would see him probably every three months, 0:07:15.680 --> 0:07:18.040 so you notice changes even more when you're not there 0:07:18.080 --> 0:07:21.120 every day. I would see him and say, okay, seems 0:07:21.120 --> 0:07:23.640 a little worse as the years went by. And for 0:07:23.680 --> 0:07:26.160 your own children, did they get a chance to interact 0:07:26.160 --> 0:07:28.400 with him, did they have any observations they did? My 0:07:28.520 --> 0:07:31.920 daughter Sydney had a really special connection with my father. 0:07:32.440 --> 0:07:36.280 Sydney is eight years old, and ever since she was 0:07:36.280 --> 0:07:38.240 a baby, she used to go to him and he 0:07:38.280 --> 0:07:40.720 would hold her. And a lot of times children were 0:07:40.760 --> 0:07:44.600 scared of my father because his energy was just so strong, 0:07:44.720 --> 0:07:47.760 and then his hands were trembling tremors. He has big hands, 0:07:47.760 --> 0:07:51.000 the big man, and she just was glued to him 0:07:52.280 --> 0:07:54.960 at all and she would like touch his face and 0:07:55.000 --> 0:07:57.320 he noticed too, like wow, she's not afraid of me. 0:07:57.360 --> 0:07:58.880 But she would kiss him and hug him. So they 0:07:58.880 --> 0:08:00.880 really had this spiritual connect. And I remember one day 0:08:00.920 --> 0:08:03.400 we came to his house and he was having acupuncture 0:08:03.400 --> 0:08:04.720 and we were like, wait, wait, don't go in there 0:08:04.800 --> 0:08:06.680 right now. He's got all these needles, like that's gonna 0:08:06.720 --> 0:08:08.360 be scared. But she ran in there and didn't care. 0:08:08.560 --> 0:08:10.000 She hopped right on in the bed with him. And 0:08:10.000 --> 0:08:13.200 I was like, okay, this one special that was It 0:08:13.240 --> 0:08:16.120 was great to see. Can you describe how you fit 0:08:16.200 --> 0:08:19.200 into the family? And so the trade you from him. 0:08:19.600 --> 0:08:22.880 So I'm the youngest girl in the family and I'm 0:08:22.920 --> 0:08:25.720 the only one that decided to become a boxer. Now, 0:08:25.840 --> 0:08:28.800 my family was not surprised when I announced to them 0:08:28.800 --> 0:08:31.520 that I was gonna go pro. My father didn't like it. 0:08:31.680 --> 0:08:33.600 We tried to talk me out of it because it 0:08:33.640 --> 0:08:36.000 wasn't antil I was about seventeen that I saw women's 0:08:36.040 --> 0:08:38.400 boxing for the first time. I was like, had this 0:08:38.520 --> 0:08:40.880 plan and I saw women's boxing, and I was like, 0:08:40.920 --> 0:08:43.720 how did I not know women boxed? And that's when 0:08:43.720 --> 0:08:45.760 I first realized that it was in me. I hadn't 0:08:45.800 --> 0:08:48.520 even participated in sports up until that point, and I 0:08:48.600 --> 0:08:51.200 remember thinking like, oh, was everyone going to think? And 0:08:51.280 --> 0:08:53.640 a year later, I was training kind of in secrecy 0:08:53.760 --> 0:08:56.440 after school after work, and I told my dad and 0:08:56.440 --> 0:08:57.880 he was just like trying to talk me out, and 0:08:57.960 --> 0:08:59.480 he's like, what's gonna happen if you get in the 0:08:59.559 --> 0:09:01.559 ring and knocked down or you get knocked out or 0:09:01.600 --> 0:09:02.880 I was like, well, I'm gonna do what you did. 0:09:02.880 --> 0:09:05.360 I'm gonna get back up. And then if he finally 0:09:05.360 --> 0:09:07.079 got frustrated and said what was really on his mind? 0:09:07.080 --> 0:09:08.679 He says, not for women, it's not for you. It's 0:09:08.720 --> 0:09:11.320 too hard. And I said, you know, I understand that, Dad, 0:09:11.360 --> 0:09:13.000 but this is what I've decided to do. So he 0:09:13.040 --> 0:09:14.840 supported me throughout my career. But I knew he was 0:09:14.880 --> 0:09:18.680 afraid because he always said that Parkinson's he didn't feel 0:09:18.760 --> 0:09:21.440 came from boxing. But I think that he still was 0:09:21.480 --> 0:09:23.839 afraid of just me getting hurt in general, or who 0:09:23.840 --> 0:09:25.360 knows what was really in the back of his mind, 0:09:25.840 --> 0:09:29.640 and that persistence it seems evident in how he continued 0:09:29.679 --> 0:09:32.280 to live with Parkinson's in terms of continuing to travel 0:09:32.600 --> 0:09:36.200 doing his humanitarian work. From your experience and exposure to him. 0:09:36.240 --> 0:09:38.760 Was that a conscious choice to get back up off 0:09:38.760 --> 0:09:41.200 the floor and kind of keep pushing. Absolutely everything he 0:09:41.240 --> 0:09:45.480 did was conscious and intentional and had purpose. So he 0:09:45.880 --> 0:09:48.320 was adamant about the fact that boxing was just his 0:09:48.360 --> 0:09:50.640 platform to do what he was really put on this 0:09:50.679 --> 0:09:52.920 plan to do his humanitarian work, and he felt like 0:09:53.200 --> 0:09:55.080 it made him even stronger to show people like, I 0:09:55.160 --> 0:09:57.120 have this disease, but I'm still gonna come out. I'm 0:09:57.160 --> 0:09:59.679 not gonna hide. Nothing's gonna stop me. This is obviously 0:09:59.679 --> 0:10:02.600 a part the plan. He never sat around and felt 0:10:02.800 --> 0:10:04.880 pity for himself. He didn't want other people too, because, 0:10:04.880 --> 0:10:07.840 trust me, it was hard. It was hard traveling that way, 0:10:08.200 --> 0:10:10.920 having hundreds of people crowding around you all the time 0:10:11.360 --> 0:10:14.120 signing an autograph. How much more energy that took him 0:10:14.160 --> 0:10:15.760 to do and look everyone in the eye and make 0:10:15.840 --> 0:10:18.600 them feel special, picking up babies, doing all of that 0:10:18.880 --> 0:10:21.199 all while having this disease. And I know it was tiring, 0:10:21.200 --> 0:10:22.800 but it just showed me the will of a man 0:10:23.280 --> 0:10:25.520 to get through all of that and to continue traveling 0:10:25.520 --> 0:10:28.880 and doing his humanitarian work. He literally signed his own 0:10:29.400 --> 0:10:32.280 fan mail, but he would get thousands of pieces of 0:10:32.320 --> 0:10:35.040 males and he would love to stead at this big 0:10:35.120 --> 0:10:38.120 large table in his office and sign each piece of mail, 0:10:38.320 --> 0:10:40.520 just watching that how much he loved people, he loved 0:10:40.559 --> 0:10:43.320 to give back, and he's just like, Wow, Yeah, I 0:10:43.360 --> 0:10:46.240 was so proud of him in so many ways. I 0:10:46.280 --> 0:10:49.360 want to bring Indian Debbie back in What do we 0:10:49.520 --> 0:10:54.280 know about the origins of this disease, about his genetic origins, 0:10:54.320 --> 0:10:56.719 about its environmental or at least what hence do we have. 0:10:57.400 --> 0:11:00.800 We know so much more than we did really. When 0:11:00.960 --> 0:11:05.600 genetic investigation started in this disease, which was back in before, 0:11:06.280 --> 0:11:09.120 we thought there was no genetic component to the disease whatsoever, 0:11:09.600 --> 0:11:13.560 or if there was, it was incredibly rare. That's changed 0:11:13.679 --> 0:11:16.679 completely over the last twenty years. First of all, with 0:11:16.960 --> 0:11:20.160 the discovery of of mutations that cause disease. You know, 0:11:20.200 --> 0:11:21.880 if you carry them, you're going to get disease. Those 0:11:21.920 --> 0:11:26.240 are generally pretty rare. But with the understanding in the 0:11:26.320 --> 0:11:30.240 last ten years or so that there are myriad genetic factors, 0:11:30.600 --> 0:11:33.760 common factors that we all carry that change your risk 0:11:33.840 --> 0:11:38.240 for disease. So we know Parkinson's is a genetic disease, 0:11:38.280 --> 0:11:43.239 but we also know it's an environmental disease because genetics 0:11:43.240 --> 0:11:46.439 isn't deterministic genetics doesn't drive all of your risk for 0:11:46.440 --> 0:11:50.120 a disease, and what else is there apart from chance 0:11:50.360 --> 0:11:52.760 and the environment. So we really think of it as 0:11:52.800 --> 0:11:56.959 a typical complex disease where your risk is brought about 0:11:57.000 --> 0:12:00.280 by a combination of genetics and how you live your life, 0:12:00.559 --> 0:12:03.280 and what other questions are we asking to try to 0:12:03.400 --> 0:12:06.120 narrow that set of genes we're looking at, or that 0:12:06.160 --> 0:12:09.240 set of environmental factors that may trigger those genes to 0:12:09.280 --> 0:12:12.040 flip the switch onto the disease. As it turns out, 0:12:12.080 --> 0:12:15.160 I think genetics is a lot easier to investigate than 0:12:15.400 --> 0:12:19.199 the environment. I think our genomes huge, three billion base pairs, 0:12:19.200 --> 0:12:22.520 but it's finite, it's three billion. Whereas your environment. You 0:12:22.520 --> 0:12:24.360 think about all of the things that happened to you 0:12:24.920 --> 0:12:27.760 during your life and how much of them happen, and 0:12:27.840 --> 0:12:30.480 that's so much more complex and so much harder to 0:12:30.520 --> 0:12:34.160 measure actually than genetics. So I think that a lot 0:12:34.160 --> 0:12:37.560 of us are trying to take hints from genetics, from 0:12:37.600 --> 0:12:41.480 the biological processes that we see affected by genes that 0:12:41.520 --> 0:12:44.280 confer risk for disease, and ask the question do those 0:12:44.280 --> 0:12:46.760 tell us anything about environment? And of course there are 0:12:46.840 --> 0:12:50.200 lots of things that have been associated with environment and 0:12:50.320 --> 0:12:54.640 risk for disease over the years, narrowing down that complexity, 0:12:54.720 --> 0:12:57.480 trying to bring some order to it. I think, Debbie, 0:12:57.480 --> 0:13:00.280 that's what the Michael J. Fox Foundation has been trying 0:13:00.320 --> 0:13:03.600 to accelerate in terms of how you're using your money 0:13:03.640 --> 0:13:06.719 and how you're operating in the philanthropic space. Can you 0:13:06.960 --> 0:13:10.160 talk about first how you came to this world and 0:13:10.160 --> 0:13:13.040 then and give us an introduction to what the Foundation's 0:13:13.040 --> 0:13:15.840 approaches and how it's different. Sure, of course we're started 0:13:15.840 --> 0:13:19.160 by a patient also, Michael Fox, who himself has now 0:13:19.200 --> 0:13:23.000 been living with the disease for twenty nine years, and 0:13:23.040 --> 0:13:25.679 when he was public and was called into action and 0:13:25.720 --> 0:13:27.920 just was motivated by the way one of the first 0:13:27.920 --> 0:13:31.280 people he spoke with was Mohammed and so they weren'tindered 0:13:31.400 --> 0:13:35.679 spirits around this. And but Michael's sense was as a patient, 0:13:36.000 --> 0:13:38.160 what could he do and what could more people do 0:13:38.559 --> 0:13:43.280 to galvanize an effort to elevate Parkinson's as a field 0:13:43.280 --> 0:13:46.640 of study and to just bring greater awareness. And so 0:13:47.600 --> 0:13:49.880 we didn't really have much more of a roadmap than that, 0:13:50.000 --> 0:13:51.960 what's the greatest on met need and what can we 0:13:52.040 --> 0:13:55.360 do to move the dial in that regard, and so 0:13:55.400 --> 0:13:57.640 what we started out with was, well, let's try to 0:13:57.679 --> 0:13:59.079 raise some money, and then we got to figure out 0:13:59.080 --> 0:14:01.960 the smartest way to spend end it. And my background 0:14:02.080 --> 0:14:05.680 was more from business and finance, and that was a 0:14:05.679 --> 0:14:08.480 good fit for me. I was practiced at thinking about 0:14:08.480 --> 0:14:10.520 how to use capital, how much risk to take, and 0:14:10.559 --> 0:14:12.560 so we really set out at the beginning saying, no 0:14:12.600 --> 0:14:14.800 matter how much money, how are we going to decide 0:14:14.840 --> 0:14:18.400 the smartest way to spend it. The philanthropy in disease 0:14:18.440 --> 0:14:21.520 space is minuscule in some ways in comparison to what 0:14:21.560 --> 0:14:25.000 the government spends and what pharmaceutical companies spend. If you're 0:14:25.000 --> 0:14:26.960 going to have a smaller relative amount, you have to 0:14:27.000 --> 0:14:29.880 really think about what's the most exponentially impactful way to 0:14:29.920 --> 0:14:32.800 spend it. As we've raised more and more money, we've 0:14:32.840 --> 0:14:36.040 put it to work aggressively, mostly trying to do the 0:14:36.080 --> 0:14:39.200 things that other money won't do. And that's often trying 0:14:39.280 --> 0:14:42.360 to see all these things are being tried, but what 0:14:42.480 --> 0:14:45.080 makes us keep coming up short? And some of the 0:14:45.120 --> 0:14:47.280 things are to take ideas that are kind of an 0:14:47.280 --> 0:14:51.000 early stages and help move them over the kind of 0:14:51.120 --> 0:14:55.040 complications of getting out of this is interesting science to 0:14:55.360 --> 0:14:57.640 what kind of science and what's the last bits of 0:14:57.720 --> 0:15:00.120 data we need to know that this actually can be 0:15:00.320 --> 0:15:04.320 turned into a treatment. That's an uncommon place for capital 0:15:04.400 --> 0:15:07.080 to be available when it comes to taking aha moments 0:15:07.840 --> 0:15:10.160 in a lab all the way to the drug store shelf. 0:15:10.200 --> 0:15:12.760 And so we did pick that sweet spot. How do 0:15:12.800 --> 0:15:15.400 you pick up things when they're ripe and make sure 0:15:15.800 --> 0:15:18.600 there's enough additional data around them so a pharmaceutical commony 0:15:18.600 --> 0:15:20.560 you will pick it up. And then the second thing 0:15:20.680 --> 0:15:23.840 is we'd like to really understand how people get this 0:15:23.920 --> 0:15:26.240 disease and what the disease really is. And even though 0:15:26.240 --> 0:15:29.360 it's been described for over two hundred years, we really 0:15:29.400 --> 0:15:32.000 just describe the symptoms. We don't really know enough about 0:15:32.000 --> 0:15:34.760 what's going on underneath. One of our beliefs has been 0:15:35.000 --> 0:15:37.080 let's do what we can't actually study it in the 0:15:37.080 --> 0:15:40.360 patients themselves. It's not that nobody thinks to do that, 0:15:40.440 --> 0:15:43.160 it's just it's very expensive and it's hard. We've built 0:15:43.160 --> 0:15:46.080 as a platform to engage with hundreds of thousands of 0:15:46.080 --> 0:15:50.480 patients to really bring them into the research process as 0:15:50.520 --> 0:15:54.920 participants in research by providing information, including in some cases 0:15:55.000 --> 0:15:58.600 their genetic samples, but also to be part of the 0:15:58.640 --> 0:16:01.840 living body of knowledge around what does this disease look like? 0:16:01.960 --> 0:16:04.680 And that's particularly important when you have a highly variable 0:16:04.720 --> 0:16:07.960 disease like Parkinson's. You need a lot of people, need 0:16:08.040 --> 0:16:12.080 scale to really gather the insights you're hoping for. You know, 0:16:12.160 --> 0:16:15.920 there's a principle that's underneath that approach that I've heard 0:16:15.920 --> 0:16:19.040 in other circles and more activist circles that says people 0:16:19.120 --> 0:16:21.600 closest to the problem should be closest to the solution. 0:16:22.080 --> 0:16:26.080 So congratulations on making the simple scalable in that sense, 0:16:26.440 --> 0:16:28.880 she'd work in advocacy for health and wellness in general. 0:16:29.400 --> 0:16:32.320 Where does that come from for you and what exactly 0:16:32.360 --> 0:16:36.000 are you doing well? When I decided to become a boxer, 0:16:36.680 --> 0:16:38.240 I went on this journey and I was like, Okay, 0:16:38.240 --> 0:16:39.880 it's about what I put in my body hot I 0:16:39.920 --> 0:16:42.560 think the rest that I get everything my mental state. 0:16:43.120 --> 0:16:45.520 That's what inspired me because I saw the change I 0:16:45.560 --> 0:16:48.360 transformed my body in my mind. I became an elite 0:16:48.400 --> 0:16:50.760 athlete just by making my mind up to do so 0:16:50.880 --> 0:16:53.840 and being consistent. Then when I had children, I started 0:16:53.880 --> 0:16:57.000 just doing more research on organic food and na GMOs 0:16:57.040 --> 0:17:00.400 and just really immersed myself in that world then a course, 0:17:00.560 --> 0:17:04.080 knowing that we have all these epidemics that are heart 0:17:04.119 --> 0:17:07.200 disease and diabetes and all these things that come from 0:17:07.280 --> 0:17:09.800 lifestyle choices a lot of the time, so people really 0:17:09.840 --> 0:17:13.960 need information, and they're just overwhelmed by supposed to eat 0:17:13.960 --> 0:17:16.040 this or don't eat that, or this is healthy soil 0:17:16.200 --> 0:17:19.719 that's not. In Every season there's a new trending diet 0:17:19.920 --> 0:17:24.120 or workout, and you gotta filter through it. But I 0:17:24.160 --> 0:17:27.520 try to encourage people to keep it simple. Nobody ever 0:17:27.680 --> 0:17:29.919 argues that you shouldn't need more vegetables, you shouldn't need 0:17:29.920 --> 0:17:31.720 clean you know, I don't care if you're vegan or 0:17:31.760 --> 0:17:35.560 if you're doing keto or paleo, whatever it is, because 0:17:35.600 --> 0:17:38.600 our bodies are always constantly working on our behalf to 0:17:38.600 --> 0:17:41.639 try to keep up with everything that we're doing. I 0:17:41.720 --> 0:17:43.800 just encourage people to go on a journey with me, 0:17:43.880 --> 0:17:45.600 and I know that a lot of people just aren't 0:17:46.080 --> 0:17:49.080 educated about what they should and shouldn't beating. I fear 0:17:49.280 --> 0:17:52.600 in life is to feel like I didn't do the 0:17:52.640 --> 0:17:54.400 best that I could to take care of myself, because 0:17:54.400 --> 0:17:56.440 we only have one life to live one body. Of course, 0:17:56.760 --> 0:17:59.199 I'm not in control of outcome of everything, but I 0:17:59.240 --> 0:18:01.000 am in control of I put in my body and 0:18:01.040 --> 0:18:03.840 what I choose to have in my environment. The role 0:18:03.880 --> 0:18:07.879 of well being healthy exercise has come up in some 0:18:07.960 --> 0:18:11.040 of the research. I'm talking with Jimmy Choy later about that, 0:18:11.600 --> 0:18:15.479 doctor Andy or debbut or both. What do we know 0:18:15.600 --> 0:18:19.160 about this, the role of exercise and overall healthy lifestyle 0:18:19.240 --> 0:18:22.200 choices that technically help slow the disease or at least 0:18:22.200 --> 0:18:24.800 help people live with it with a bit more comfort 0:18:24.960 --> 0:18:27.280 and confidence. I think you hit on it there at 0:18:27.320 --> 0:18:29.119 the end, which is I think that it helps people 0:18:29.200 --> 0:18:31.600 live with it in a more functional way, helps them 0:18:31.600 --> 0:18:35.000 be more comfortable with the disease. I think that exercising 0:18:35.040 --> 0:18:38.600 your body, exercising your mind, they have to be good things. 0:18:38.640 --> 0:18:41.520 They have to help you deal with the problems that 0:18:41.520 --> 0:18:44.640 you're facing with a complex disease like this. I think 0:18:45.000 --> 0:18:48.280 the amount of research that's in this area is small, 0:18:48.680 --> 0:18:50.199 It's not as large as we like it to be. 0:18:50.320 --> 0:18:52.760 But just from talking with patients, you see so much 0:18:52.800 --> 0:18:56.480 benefit from the things that they pursue around exercise and 0:18:56.600 --> 0:18:59.960 dance and yoga and doing the cross word and maintaining 0:19:00.200 --> 0:19:05.080 an active lifestyle. There is a component to Paarlkinson's disease 0:19:05.080 --> 0:19:08.440 that affects the way that a patient thinks and processes information. 0:19:08.440 --> 0:19:11.159 And I think if you practice the skill of thinking 0:19:11.160 --> 0:19:14.159 and processing information, you're protecting yourself to a certain degree. 0:19:15.040 --> 0:19:19.160 I've come to appreciate the Parkinson's patients when this disease 0:19:19.480 --> 0:19:22.080 lands in their lap, They're likely going to have a 0:19:22.240 --> 0:19:24.600 lot of good years in front of them, but there 0:19:24.640 --> 0:19:26.600 are so many things they can start to do right 0:19:26.640 --> 0:19:30.920 away that can set that the vector in the best posture, 0:19:30.920 --> 0:19:34.679 and so things like healthy lifestyle choices, and they're not 0:19:35.119 --> 0:19:38.800 super specific, as Laylis speaking, it's simple things. A good 0:19:38.840 --> 0:19:43.600 heart healthy diet is a good brain healthy diet. Maintaining 0:19:43.600 --> 0:19:46.920 a social network is also helpful for mental acuity. There 0:19:46.920 --> 0:19:49.320 these things really come together, and I've been appreciating more 0:19:49.320 --> 0:19:52.399 and more that any disease of aging, it's almost the 0:19:52.400 --> 0:19:54.359 time of life where you need to be the healthiest. 0:19:55.240 --> 0:19:57.320 We think of that as oh, in our thirties or 0:19:57.600 --> 0:19:59.359 in our forties, we really want to be healthy, but 0:19:59.520 --> 0:20:02.400 actually have come to appreciate it when you turn sixty, 0:20:02.600 --> 0:20:04.639 and that's when you really need to get serious about 0:20:05.240 --> 0:20:09.879 a really holistic sense of what healthiness is. And it's sleep, exercise, 0:20:10.520 --> 0:20:14.960 functional diets, social worlds, even frame of mind, optimism. These 0:20:15.000 --> 0:20:17.440 things they can make a big difference, Leila. I'm thinking 0:20:17.480 --> 0:20:19.600 about your father's experience from what I could see from 0:20:19.600 --> 0:20:22.000 a very distant outside, and he seemed to have some 0:20:22.040 --> 0:20:25.520 of those elements, the optimism, big family, and a lot 0:20:25.560 --> 0:20:27.080 of people around the world who loved him, and he's 0:20:27.160 --> 0:20:30.320 staying engage in the world. Could you, from your closer 0:20:30.359 --> 0:20:32.680 perspective see the effects of that on how he approached 0:20:32.680 --> 0:20:35.520 this disease. Definitely, my father, it really helped all the 0:20:35.640 --> 0:20:38.760 love that he had around him. Obviously, just everywhere he 0:20:38.760 --> 0:20:41.560 went he got a standing ovation. People would come to 0:20:41.600 --> 0:20:43.520 tears and he loved it. Trust me. We'll be driving 0:20:43.560 --> 0:20:45.320 down the street and he's like watch this. Watch this. 0:20:45.400 --> 0:20:47.320 They roll down the window and just wait for the 0:20:47.359 --> 0:20:49.440