WEBVTT - Dan Doctoroff 0:00:03.320 --> 0:00:05.600 Dan doctor Off is a former Deputy Mayor of New 0:00:05.680 --> 0:00:08.520 York City and a former CEO of Bloomberg. I came 0:00:08.560 --> 0:00:10.680 to know Dan reasonably well a few years ago when 0:00:10.680 --> 0:00:13.040 he created Target a l S, which was designed to 0:00:13.119 --> 0:00:15.960 raise funding to help cure A l S, a disease 0:00:16.000 --> 0:00:19.919 which killed his father and his uncle. Recently, sadly, Dan 0:00:20.040 --> 0:00:22.919 was also diagnosed with a l S. I sat down 0:00:22.920 --> 0:00:26.279 with Dan at Bloomberg recently and talked about his life, philanthropy, 0:00:26.560 --> 0:00:28.800 and his desire to now do what he can help 0:00:28.880 --> 0:00:31.880 cure a l S. Dan recently, about a year ago, 0:00:32.000 --> 0:00:34.519 you were diagnosed with a l S, which is a 0:00:34.640 --> 0:00:38.320 very sad tragic disease. What was your reaction when you 0:00:38.360 --> 0:00:42.920 heard about this. Well, I was actually shocked, despite the 0:00:42.960 --> 0:00:46.520 fact that my father and uncle died of the disease, 0:00:47.440 --> 0:00:51.880 and I didn't expect it at all. Um. I really 0:00:51.960 --> 0:00:56.680 hadn't felt many symptoms. Um. But I went away on 0:00:56.720 --> 0:01:00.560 a trip to Iceland with my wife, and I had 0:01:00.640 --> 0:01:05.960 breathing problems and I couldn't climb rocks. I got exhausted 0:01:06.080 --> 0:01:08.840 climbing hills, which is really weird because I was in 0:01:08.920 --> 0:01:11.640 pretty good shape, and so I decided to go see 0:01:11.680 --> 0:01:15.360 a doctor not thinking it was a l S, and 0:01:15.480 --> 0:01:19.640 he noticed my muscles twitching and brought in the head 0:01:19.640 --> 0:01:23.480 of neurology um at the hospital that I went to, 0:01:24.200 --> 0:01:27.920 and he almost immediately declared I probably had a L 0:01:28.160 --> 0:01:31.960 S given my family history. So then I reached out 0:01:31.959 --> 0:01:34.920 to other doctors who I knew in the A L 0:01:35.120 --> 0:01:40.560 S field, and they basically confirmed it with a series 0:01:40.640 --> 0:01:44.120 of tests. But your father who died of a LS 0:01:44.240 --> 0:01:46.319 and your uncle who died of LS, they had a 0:01:46.400 --> 0:01:48.880 gene which is kind of an A L S gene. 0:01:49.280 --> 0:01:52.360 You had earlier been tested for that gene years ago 0:01:52.520 --> 0:01:54.280 and we were told you didn't have it. No, I 0:01:54.320 --> 0:01:58.000 had never been tested. I never wanted to be tested 0:01:58.320 --> 0:02:00.560 because I didn't want to have to tell my kids 0:02:01.360 --> 0:02:06.840 if I tested positive. So everyone sort of assumed I 0:02:06.960 --> 0:02:10.720 had a LS based on my results and my family history. 0:02:11.240 --> 0:02:14.720 But when the genetic testing came back, I did not 0:02:14.960 --> 0:02:19.000 have the same genetic mutation that my dad and my uncle, 0:02:19.120 --> 0:02:22.840 and by the way, their first cousin had, so it's 0:02:22.880 --> 0:02:26.720 throughout my family. But I didn't have the gene, which 0:02:26.760 --> 0:02:31.240 has happened like A five times in history. So for 0:02:31.360 --> 0:02:33.480 people who were not familiar with a l S. It 0:02:33.600 --> 0:02:36.440 first became well known to the public when lou Garic, 0:02:36.520 --> 0:02:40.639 the famous baseball player, contracted it and died relatively quickly thereafter. 0:02:41.120 --> 0:02:42.880 He was in his thirties. I believe at the time 0:02:43.760 --> 0:02:46.840 since that time, since the nineteen thirties, have we made 0:02:46.880 --> 0:02:50.560 that much progress in diagnosing or treating a LS. So 0:02:50.880 --> 0:02:55.280 there had been virtually no progress for a hundred and 0:02:55.360 --> 0:03:00.960 forty years from the time it was discovered in eighteen seventy. 0:03:01.800 --> 0:03:05.000 My uncle died in two thousand and ten, and in 0:03:05.040 --> 0:03:08.040 two thousand and ten I decided, you know, look in 0:03:08.120 --> 0:03:10.959 my family, it's hereditary. My dad had died in two 0:03:10.960 --> 0:03:15.160 thousand and two. I gotta do something, and so I 0:03:15.280 --> 0:03:18.960 hired a team of scientists to understand why there was 0:03:19.040 --> 0:03:23.880 so little progress made in the disease, and we came 0:03:23.919 --> 0:03:27.799 up with a set of theories and created an organization 0:03:28.560 --> 0:03:34.920 around those theories. Um that included, you know, funding of consortia, 0:03:35.640 --> 0:03:40.720 funding of core scientific resources that anyone in the world 0:03:40.800 --> 0:03:46.360 could draw on, bringing in biotech and pharma into the process, 0:03:47.040 --> 0:03:50.800 and there's been an explosion of progress over the last 0:03:50.840 --> 0:03:55.240 ten years. I'm really proud that Data Organization Target a 0:03:55.400 --> 0:03:59.640 LS has has played a major role in catalyzing the 0:03:59.680 --> 0:04:03.000 product dress. Now, when you were told recently you have 0:04:03.160 --> 0:04:05.920 about a year ago a LS, you didn't say I'm 0:04:05.960 --> 0:04:08.680 now gonna just take life very easy. You decided you're 0:04:08.680 --> 0:04:11.840 gonna go raise another two fifty million dollars for target 0:04:11.880 --> 0:04:14.360 a LS. Why did you say you wanted to put 0:04:14.360 --> 0:04:17.000 the energy and effort into that, knowing it probably really 0:04:17.000 --> 0:04:24.280 wouldn't help you. Because first of all, this affects my family. UM. 0:04:24.360 --> 0:04:27.400 You know, even though I don't have the same genetic 0:04:27.520 --> 0:04:31.440 mutation that my dad and uncle did, I may have 0:04:31.480 --> 0:04:37.000 another genetic mutation that has not been discovered yet. UM, 0:04:37.200 --> 0:04:43.000 and my cousins, my brothers might have a l S. 0:04:43.600 --> 0:04:47.560 So it's very personal for me. But the other thing is, 0:04:47.600 --> 0:04:51.520 and most people don't recognize this, one in four hundred 0:04:51.640 --> 0:04:56.320 people who are alive today will die of ALS if 0:04:56.360 --> 0:05:01.039 we don't come up with treatments. And so target ALS 0:05:01.080 --> 0:05:04.760 has been amazingly successful over the last ten years, and 0:05:04.800 --> 0:05:08.400 I thought there was nothing more important that I could 0:05:08.400 --> 0:05:13.839 do than to scale up target ALS and hopefully see 0:05:14.520 --> 0:05:19.480 real treatments that saved people's lives within the next five 0:05:19.560 --> 0:05:22.559 to ten years. And hopefully we'll be at a point 0:05:22.600 --> 0:05:27.039 within ten years that we can see a day when 0:05:27.080 --> 0:05:31.960 everybody's lives get extended and saved. A number of years ago, 0:05:32.040 --> 0:05:35.560 there was so called ice bucket Challenge and where I 0:05:35.600 --> 0:05:39.520 think people were having water dumped on their heads and uh, 0:05:40.279 --> 0:05:43.320 it was designed to raise money for a LS. I 0:05:43.360 --> 0:05:44.920 think it did raise a fair amount of money, over 0:05:44.960 --> 0:05:47.880 a hundred million dollars, but that was not for research. 0:05:48.000 --> 0:05:50.560 That was for care of those who already have a 0:05:50.720 --> 0:05:53.000 l S. Is that right. Some of it went to research, 0:05:53.440 --> 0:05:56.799 but most of it went to patient care, which is important. 0:05:56.880 --> 0:06:00.480 I mean, this is a devastating disease. UM. You know 0:06:00.520 --> 0:06:04.160 what happens in a LS is the signals that get 0:06:04.240 --> 0:06:08.640 sent from the brain to the muscles to move die 0:06:09.080 --> 0:06:12.880 and when that happens, people get paralyzed, and it's just 0:06:13.080 --> 0:06:19.400 a progressive disease where you lose more and more control UM. 0:06:19.880 --> 0:06:24.360 So patient care is really important. We have to always 0:06:24.360 --> 0:06:29.360 find the right balance between patient care and research because 0:06:29.400 --> 0:06:31.200 at the end of the day, the thing that is 0:06:31.240 --> 0:06:34.440 going to save the lives of those one in four 0:06:34.960 --> 0:06:40.520 people UM is treatments, and we need a lot of 0:06:40.680 --> 0:06:44.880 effort to actually come up with effective treatments. Now today 0:06:45.080 --> 0:06:47.640 we still do not know what causes a LS. Is 0:06:47.680 --> 0:06:50.640 it a genetic thing completely or is it environmental or 0:06:50.720 --> 0:06:53.239 is there some combination. What do we really know about 0:06:53.240 --> 0:06:56.480 what causes a LS? Well, there are certain genetic causes 0:06:57.120 --> 0:07:01.560 that we know our respond table for a l S, 0:07:02.120 --> 0:07:05.719 but that's only about ten of the cases. The other 0:07:07.240 --> 0:07:10.800 we don't really know. We know now what the biological 0:07:10.880 --> 0:07:15.760 pathways are UM, so we have a much better understanding 0:07:15.880 --> 0:07:22.040 of the science and that is leading to UM potential treatments, 0:07:23.520 --> 0:07:29.560 But the really understanding the cause, I think we're still 0:07:29.800 --> 0:07:31.760 got a long way to go. We to talk about 0:07:31.760 --> 0:07:33.760 a little bit more about a l S in a moment. 0:07:33.920 --> 0:07:37.560 Let me talk about your background. Where are you from? 0:07:37.360 --> 0:07:41.480 I grew up in Birmingham, Michigan, a suburb of Detroit, Okay. 0:07:41.560 --> 0:07:45.400 And your father was My father was a lawyer who 0:07:45.440 --> 0:07:49.040 became the chief judge of the Michigan Court of Appeal. 0:07:49.200 --> 0:07:52.600 And at what age did he contract a LS? Sixty 0:07:52.680 --> 0:07:57.800 six years old. My mother, who was a psychologist, had 0:07:57.840 --> 0:08:02.400 just died of a rare net cancer at sixty four, 0:08:02.880 --> 0:08:07.920 and literally within weeks of her dying, he started to 0:08:07.960 --> 0:08:12.040 show symptoms UM that would later be diagnosed as a 0:08:12.240 --> 0:08:15.200 l S. He started a limp. Basically, you weren't what 0:08:15.320 --> 0:08:19.200 age now and that today I'm sixty four, so about 0:08:19.200 --> 0:08:21.960 the same age your father, A little bit a little 0:08:21.960 --> 0:08:25.600 bit less. Where'd you go to college Harvard? And what 0:08:25.680 --> 0:08:27.360 did you study there? And what did you want to be? 0:08:27.680 --> 0:08:32.600 I didn't know what I wanted to be. I studied government, um, 0:08:33.160 --> 0:08:37.559 because I didn't know anything better. Um. But my biggest 0:08:37.600 --> 0:08:42.320 achievement in college was meeting my wife freshman year. We've 0:08:42.320 --> 0:08:47.080 now been dating or married forty five years, so that 0:08:47.200 --> 0:08:51.000 was my biggest achievement. Achievement. So after college? Who went 0:08:51.040 --> 0:08:53.520 to law school at the Universit Chicago? Before I did that, 0:08:53.600 --> 0:08:57.120 I was a political pollster for a firm called Market 0:08:57.120 --> 0:09:00.360 Opinion Research, and I'd be flying all over the country 0:09:00.400 --> 0:09:04.240 as a twenty two year old advising candidates. And the 0:09:04.280 --> 0:09:07.880 fact that they listened to me discouraged me so much 0:09:08.360 --> 0:09:10.440 that I decided to go to law school. The fact 0:09:10.480 --> 0:09:14.360 that they were listening to a year olds exactly, all right, 0:09:14.400 --> 0:09:16.160 she went to law school the universe Chicago. And what 0:09:16.160 --> 0:09:19.560 did you do after you graduated? Um? I went to 0:09:19.679 --> 0:09:23.000 work for Lehman Brothers. So you were an investment banker? 0:09:23.640 --> 0:09:26.040 And how long did you do that three years? And 0:09:26.080 --> 0:09:29.120 then you went into the calling of private equity right 0:09:29.160 --> 0:09:33.800 to the firm that became partners. Okay, and so you 0:09:33.840 --> 0:09:36.840 did that for how many years? Fourteen? All right? So 0:09:37.000 --> 0:09:39.679 how did you become close to or get to know 0:09:39.880 --> 0:09:43.600 Mike Bloomberg. It's it's actually a funny story. So back, 0:09:45.440 --> 0:09:48.400 I was sitting in the stands of the World Cup 0:09:48.520 --> 0:09:52.439 semi final game out at the Meadowlands in New Jersey, 0:09:52.800 --> 0:09:58.400 was Italy versus Bulgaria. A friend literally dragged me um 0:09:58.400 --> 0:10:01.160 to the game. I didn't want to go. It was 0:10:01.240 --> 0:10:04.559 like a hundred degrees. We took the bus. It took forever, 0:10:05.360 --> 0:10:08.480 but I walked into the stadium that day and I 0:10:08.520 --> 0:10:11.559 thought it was the most amazing sporting event I had 0:10:11.600 --> 0:10:19.080 ever seen. Um. Everyone was painted in Bulgarian and Italian colors. Um, 0:10:19.320 --> 0:10:22.680 you couldn't sit down. So I was standing there through 0:10:22.720 --> 0:10:27.440 the match thinking to myself, Um, you could play this 0:10:27.600 --> 0:10:31.400 game in New York with any two countries in the 0:10:31.400 --> 0:10:36.160 world and it would feel exactly the same. And then 0:10:36.200 --> 0:10:38.840 I started thinking about the Olympics, which had always been 0:10:38.880 --> 0:10:42.559 a fan of, and saying, why has the most international 0:10:42.640 --> 0:10:47.319 city in the world never hosted the most international event. 0:10:47.880 --> 0:10:50.880 And I left the stadium that day with this vague 0:10:50.920 --> 0:10:54.400 notion that New York got to host the Olympics. And 0:10:54.520 --> 0:10:59.520 so I built a plan with advisors about how New 0:10:59.559 --> 0:11:03.280 York could host the Olympics, and eventually I showed it 0:11:03.280 --> 0:11:06.040 to Mike Bloomberg. When he was running the company, he 0:11:06.120 --> 0:11:10.360 wasn't contemplating running for mayor. He gave some money, he 0:11:10.440 --> 0:11:14.199 went on the board UM, and then when he shockingly 0:11:14.480 --> 0:11:18.559 won to be mayor, he asked me to join him 0:11:18.559 --> 0:11:21.320 in City Hall. And what did you do at City Hall? 0:11:21.440 --> 0:11:23.760 For Mike Bloomberg? In the city so, I was responsible 0:11:23.840 --> 0:11:29.559 for everything economic and financial. So my title was Deputy 0:11:29.559 --> 0:11:33.920 Mayor for Economic Development and rebuilding. First task was rebuilding 0:11:33.920 --> 0:11:38.120 the World Trade Center site. But then we really rethought 0:11:38.720 --> 0:11:43.800 the future of New York physically and financially UM by 0:11:43.920 --> 0:11:48.720 having a five borough economic development strategy. Now, after serving 0:11:48.760 --> 0:11:51.320 as Deputy Mayor of New York for development and other 0:11:51.360 --> 0:11:54.640 projects dealing with economic development, you left after how many years? 0:11:55.440 --> 0:11:58.760 I was there for six years and then Mike. One day, 0:11:58.840 --> 0:12:03.000 Mike Bloomberg, we sat in this bullpen in City Hall. 0:12:03.040 --> 0:12:09.160 It's an open space, UM, and I sat basically behind him. 0:12:09.200 --> 0:12:17.720 One day, he wheeled around and he UM said, Uh, 0:12:17.760 --> 0:12:20.400 what would you think about going over and running Bloomberg? 0:12:21.559 --> 0:12:26.040 And I said to him, what are you talking about? UM, 0:12:26.080 --> 0:12:29.240 in the six years that we have sat here together, 0:12:29.960 --> 0:12:36.160 we have discussed the company for one hour total, and 0:12:36.200 --> 0:12:39.760 he said, no, I think you'd be really good. UM. 0:12:39.840 --> 0:12:44.000 I'd never run a big company before. UM. I didn't 0:12:44.000 --> 0:12:47.120 know anything about Bloomberg. When I was in private ectuity, 0:12:47.160 --> 0:12:51.000 I was a light user of Bloomberg. I knew one 0:12:51.160 --> 0:12:54.400 person at the company and he said, no, I think 0:12:54.400 --> 0:12:57.040 you'd be really good. So I said, okay, I'll think 0:12:57.040 --> 0:13:00.520 about it. So I came back the next day said okay, 0:13:00.559 --> 0:13:03.040 I'm gonna do it. I'm not going to do it 0:13:03.080 --> 0:13:05.520 for the same salary I was getting paid in government, 0:13:05.760 --> 0:13:12.520 which was one dollar UM. And I started UM about 0:13:12.640 --> 0:13:17.000 six weeks later, and after it was announced publicly that 0:13:17.040 --> 0:13:20.360 I was going to go run Bloomberg. UM, I said 0:13:20.400 --> 0:13:23.000 to Mike, Okay, I'm doing it. What do you want 0:13:23.040 --> 0:13:26.520 me to do? UM? He said, I don't know. I 0:13:26.559 --> 0:13:29.480 haven't been there for six years. You go figure it out. 0:13:30.240 --> 0:13:34.480 And I did so. How many years did you run 0:13:34.520 --> 0:13:37.760 bloom Seven? Seven years? And the company grew pretty nicely 0:13:37.840 --> 0:13:41.080 during that period. Yeah, I mean we as soon as 0:13:41.080 --> 0:13:45.079 I got there the financial crisis happened, UM, but we 0:13:45.120 --> 0:13:49.000 grew from I think five point four billion in revenues 0:13:49.800 --> 0:13:52.520 UM to nine in the seven years that I was there. 0:13:53.040 --> 0:13:55.560 After Mike finished his third term as mayor, he came 0:13:55.600 --> 0:13:58.600 back and being resumed the position of being Shio. You 0:13:58.760 --> 0:14:02.600 left the company and you still another company called Sidewalk Labs. 0:14:02.679 --> 0:14:06.320 What was that? That was a company I formed with 0:14:06.720 --> 0:14:13.280 Larry Page and Google became alphabet UM that was focused 0:14:13.280 --> 0:14:17.800 on urban innovation. And what we wanted to do was 0:14:17.880 --> 0:14:21.320 built up the most innovative place in the world. But 0:14:21.560 --> 0:14:28.200 also by focusing on building a place, UM developed ideas 0:14:28.960 --> 0:14:37.480 urban innovation ideas that could UM dramatically transform UM the cities. 0:14:37.800 --> 0:14:41.000 So you're running that company, and then when you got 0:14:41.040 --> 0:14:44.400 the news that you had a LS, you decided, I'm 0:14:44.440 --> 0:14:47.000 out of this. I'm gonna go throw myself to target 0:14:47.000 --> 0:14:50.040 A LS. Is that right, basically? And I still over 0:14:50.840 --> 0:14:52.680 on the board of a couple of the companies that 0:14:52.840 --> 0:14:56.440 we created, But yeah, my focus was definitely on a 0:14:56.640 --> 0:14:59.680 l S. And you know, I also wanted to spend 0:15:00.480 --> 0:15:06.400 much more time with my family with friends, travel, UM, 0:15:06.960 --> 0:15:12.000 do things that I had always wanted to do, and UM, 0:15:12.040 --> 0:15:15.000 it's actually worked out amazingly. Well, you've been around young 0:15:15.040 --> 0:15:17.320 people for much of your career as well, and you've 0:15:17.440 --> 0:15:21.800 hired many young people at Bloomberg New York City sidewalk Labs. 0:15:22.200 --> 0:15:25.200 Somebody says I want to be a person has an 0:15:25.240 --> 0:15:28.240 impact on society. What would you recommend that somebody do 0:15:28.360 --> 0:15:30.960 to train themselves and to work their way up to 0:15:31.040 --> 0:15:34.640 be somebody that's impactful on society. Well, I think the 0:15:34.720 --> 0:15:39.360 first thing, you've got to believe in something that you 0:15:39.440 --> 0:15:43.120 really care about. You know, I've been fortunate that over 0:15:43.200 --> 0:15:46.240 the course of my career, I've come up with things 0:15:46.320 --> 0:15:51.360 that have mattered to me. UM, and I've pursued them. Um. 0:15:51.400 --> 0:15:55.720 You know the best advice I ever got, UM was 0:15:55.880 --> 0:15:58.800 from Mike Bloomberg, and he said to me at one point, 0:15:59.480 --> 0:16:03.880 he said, and UM, show me somebody who's never lost, 0:16:04.560 --> 0:16:08.440 and I'll show you a loser. UM. And I believe 0:16:08.520 --> 0:16:13.200 that that if you believe in something, go after it. 0:16:13.520 --> 0:16:18.800 Take risk. Obviously they should be smart risks, but they 0:16:18.840 --> 0:16:21.960 should be around things that you really care about. So 0:16:22.160 --> 0:16:25.160 you would see your legacy as being actually target als 0:16:25.240 --> 0:16:28.240 and helping to moderate the impact of the LS, if 0:16:28.240 --> 0:16:31.560 not curing it. That's my final legacy. I'm proud of 0:16:31.720 --> 0:16:35.560 some of the other stuff that I've done as well, Um, 0:16:35.600 --> 0:16:40.600 you know, the transformation of New York after nine eleven. 0:16:40.920 --> 0:16:43.240 I'm also incredibly proud of a lot of the companies 0:16:43.280 --> 0:16:46.800 we created, it Sidewalk, I'm proud of the Chad. I'm 0:16:46.800 --> 0:16:49.280 proud of a lot. But I feel like i've I've 0:16:49.960 --> 0:16:52.200 I've done a lot. How do you think New York 0:16:52.240 --> 0:16:54.960 City is doing today? Mike Bloomberg is no longer mayor. 0:16:55.160 --> 0:16:57.480 There's been mayor after him, and now we have new 0:16:57.480 --> 0:17:00.480 Mayor Eric Adams in New York. Um, it's New York 0:17:00.480 --> 0:17:02.720 as as safe as it was when you were in 0:17:02.720 --> 0:17:05.440 the government, It's not as safe as it was. Crime 0:17:05.600 --> 0:17:08.879 is clearly rising. I mean, it's not back to the 0:17:09.000 --> 0:17:13.359 dark old days of you know, pre Juliani in the 0:17:13.440 --> 0:17:17.000 not early nineties. But we've got to be careful because 0:17:17.200 --> 0:17:23.080 safety is a foundation of everything. And so I know 0:17:23.359 --> 0:17:28.080 the current mayor is committed to reducing crime. Um, but 0:17:28.280 --> 0:17:31.520 we're gonna have to be incredibly aggressive in making sure 0:17:31.640 --> 0:17:34.040 that crime does not in you involved any longer in 0:17:34.040 --> 0:17:37.400 New York City matters or your advice. Theyor and governor 0:17:37.520 --> 0:17:42.440 actually asked me to co chair a panel or a 0:17:43.160 --> 0:17:48.119 task force on reviving the commercial districts throughout the city. 0:17:48.240 --> 0:17:50.720 So I've been in the middle of that well that 0:17:50.880 --> 0:17:54.840 later this fall will produce the report that hopefully, you know, 0:17:55.040 --> 0:18:01.320 will be pretty um inspiring here and in other places. 0:18:01.520 --> 0:18:04.560 One of the other projects you conceived of is the Shed, 0:18:04.840 --> 0:18:06.600 and you were for a while the chairman of it 0:18:06.640 --> 0:18:08.080 for a long time. You got it off the ground. 0:18:08.119 --> 0:18:10.480 What is the Shed? We want to put a cultural 0:18:10.480 --> 0:18:14.159 institution on the far west side of Manhattan. And so 0:18:14.240 --> 0:18:17.280 what we decided to do was create a new kind 0:18:17.280 --> 0:18:22.840 of cultural institution that would be remarkably adaptable. Um. The 0:18:23.000 --> 0:18:27.199 spaces could be adapted to anything. Um. They could accommodate 0:18:27.280 --> 0:18:35.159 virtually all forms of artistic expression. UM. There's many different 0:18:35.240 --> 0:18:39.679 venues in it. The building literally moves back and forth. 0:18:40.119 --> 0:18:45.159 It is so flexible. It's sort of an architectural marvel. Um. 0:18:45.200 --> 0:18:47.680 And I'm really proud of it now. Perhaps the most 0:18:47.760 --> 0:18:50.480 famous person who had a LS was Luke Garrick, where 0:18:50.560 --> 0:18:53.160 some people still call it glu Garrick's disease. But another 0:18:53.200 --> 0:18:55.880 famous person had it with Stephen Hawking, and he lived 0:18:55.920 --> 0:18:58.119 for some thirty plus years with it. How do you 0:18:58.160 --> 0:19:01.080 explain that sometimes people can live for thirty years plus. 0:19:01.240 --> 0:19:05.800 A couple of people live beyond ten years. One of 0:19:05.840 --> 0:19:10.359 the decisions that I'm going to face, because my major 0:19:10.440 --> 0:19:16.840 symptom is respiratory and that's why people ultimately die, is 0:19:16.920 --> 0:19:23.760 to get a tracheostomy um, which means that you can't 0:19:24.000 --> 0:19:28.639 breathe independently. You also can't eat, and you also generally 0:19:28.720 --> 0:19:32.960 cannot talk, so you communicate by looking and spelling out 0:19:33.000 --> 0:19:37.800 words on a computer screen. And you know a lot 0:19:37.840 --> 0:19:42.480 of people I don't want to live that way. UM, 0:19:42.640 --> 0:19:47.920 I think I probably would. UM. I want to see 0:19:48.240 --> 0:19:52.440 my grandchildren grow up. UM. I still think I could 0:19:52.440 --> 0:19:57.040 be engaged in things. Again, that's sort of my optimistic nature, 0:19:57.800 --> 0:20:02.760 that it's not just about believing there's a cure, um, 0:20:02.800 --> 0:20:08.520 but it's sometimes about believing that the better of too 0:20:08.560 --> 0:20:14.560 bad alternatives UM is something worth doing. So you know it, 0:20:14.720 --> 0:20:18.760 faced with that choice, I think that's what I would do, 0:20:19.080 --> 0:20:21.679 And you know I'll need a lot of help, but 0:20:22.520 --> 0:20:25.399 fortunately I can afford it. The word progressive is a 0:20:25.440 --> 0:20:28.000 word used for a l S and other diseases as well. 0:20:28.119 --> 0:20:31.600 Progressive is a euphanism for it's never going to get better, 0:20:31.600 --> 0:20:34.880 it's going to get worse. So progressive in the case 0:20:34.920 --> 0:20:37.160 of a l S means you're going to die much 0:20:37.200 --> 0:20:41.000 sooner than you would otherwise die absence some sort of 0:20:41.520 --> 0:20:49.119 miracle progress, which I don't really expect for of a 0:20:49.280 --> 0:20:52.520 l S. Patients die within three to five years. Many 0:20:52.560 --> 0:20:55.280 people when they face death and the certainty of death, 0:20:55.280 --> 0:20:57.879 and everybody's going to die at some point, but people 0:20:58.040 --> 0:21:00.480 generally think it's way down the road or over the horizon. 0:21:00.880 --> 0:21:03.640 You know that within three to five years it's more 0:21:03.720 --> 0:21:06.239 likely than not that you will not be alive. So 0:21:06.320 --> 0:21:07.800 how do you deal with that every day when you 0:21:07.840 --> 0:21:12.560 get up? You Know, the interesting thing is I have 0:21:12.760 --> 0:21:18.640 been in an amazing mood ever since I've been diagnosed. 0:21:19.600 --> 0:21:25.600 I've had maybe one down hour communatively in the last year. 0:21:26.640 --> 0:21:31.160 Um and I've got many theories to try and explain it. 0:21:31.920 --> 0:21:37.520 The biggest one is when I was diagnosed, I stopped 0:21:37.560 --> 0:21:41.119 thinking about the future. It was not something I tried 0:21:41.160 --> 0:21:44.400 to do. I think it was sort of my optimistic 0:21:44.560 --> 0:21:48.640 nature protecting me. And it's not like I'm in denial. 0:21:48.760 --> 0:21:51.879 I know the statistics. I spend lots of time with 0:21:51.960 --> 0:21:55.560 a l S patients. I've lived with it with my father, 0:21:55.880 --> 0:22:00.360 my uncle, my college roommate died of a l s UM. 0:22:00.520 --> 0:22:05.280 So I know what's going to happen. UM. But I 0:22:05.359 --> 0:22:09.359 stopped thinking about the future, and that has been just 0:22:09.480 --> 0:22:12.760 an enormous benefit for me. I have a lot of 0:22:12.800 --> 0:22:17.880 other theories to explain why I've been so unfazed by 0:22:17.920 --> 0:22:22.640 the disease, why I've been so happy. UM. That includes 0:22:23.400 --> 0:22:27.520 I've had a great life. UM. I have a wonderful family, 0:22:28.200 --> 0:22:33.560 I've got great friends. I've done what I wanted career wise. UM. 0:22:33.560 --> 0:22:37.080 I've done outside things like the Shed or the Olympics 0:22:37.160 --> 0:22:42.600 that I wanted to do because I was passionate about them. Um. 0:22:42.640 --> 0:22:45.600 I've had a great life, and obviously I wanted to continue. 0:22:46.440 --> 0:22:49.119 But if it doesn't, I'm grateful for the life that 0:22:49.200 --> 0:22:53.000 I've had. And then you know, I've been bathed in 0:22:53.200 --> 0:22:57.199 sort of like the love and support of so many people. 0:22:57.800 --> 0:23:02.320 When I announced that I had a l s UM, 0:23:02.359 --> 0:23:06.119 I got at thousands of notes, you know, lots of 0:23:06.119 --> 0:23:10.439 people talking about the impact that I've had on their life, etcetera. 0:23:10.720 --> 0:23:14.640 I literally felt like I died and witnessed my funeral. 0:23:15.520 --> 0:23:19.240 But then the last part of it is UM, I 0:23:19.320 --> 0:23:24.679 feel like I've got purpose. UM with target A ls UM, 0:23:24.720 --> 0:23:30.760 I feel like I can contribute to saving people's lives, 0:23:32.200 --> 0:23:37.040 maybe my own, unlikely my kids, my family, but those 0:23:37.040 --> 0:23:41.240 one in four people, and there's nothing more important than that. 0:23:41.680 --> 0:23:44.439 So I feel like I'm on my last mission and 0:23:44.520 --> 0:23:48.679 it gives me a real sense of purpose. Thanks for 0:23:48.720 --> 0:23:51.560 listening to hear more of my interviews. You can subscribe 0:23:51.560 --> 0:23:55.399 and download my podcast on Spotify, Apple, or wherever you 0:23:55.480 --> 0:24:02.960 listen Meann