The Tim Ferriss Show - #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously)

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Starting point is 00:03:12 and I'm feeling great. Thank you for asking. This show is about deconstructing world-class performers of all different types. And that can range from entertainment to chess, to military, to entrepreneurship, billionaires, the big B club, those guys, pretty interesting cats, and all over the show, as they say, across the pond, athletes, you name it. And the guest today is, I would say a combination of almost all of that, John Crowley. And you will have to listen to his story to believe it. And we're going to get really deep into a lot of the details. It is moving. It is incredible. It is hard to believe. It is miraculous. It is all of the above. And I call John, who's been a friend for a long time now, the real life Captain America. That's not just a label that

Starting point is 00:04:03 I use. So the real life Captain America, but he's also the real life Bruce Banner. So allow me to explain. John Crowley, what does his bio sound like? He is the chairman and CEO of Amicus Therapeutics, a publicly traded biotechnology company, which he helped to found in 2005 and which is now a 300 plus person company in 22 countries. Okay. That is the current day, but his involvement with biotech stems from the 1998 diagnosis of two of his children with Pompe disease. So he was surprised with this unexpected diagnosis of a severe and often fatal neuromuscular disorder in his drive to find a cure for them. He left his job at the time, became an entrepreneur, then became the co-founder and president and CEO of Novazyme Pharmaceuticals in 2000. I was going to add something to that, but that was in 2000. A startup conducting research on a new experimental

Starting point is 00:04:55 treatment for Pompe disease, which he credits as ultimately saving his children's lives. In 2001, Novazyme was acquired by Genzyme Corporation for nearly $200 million. John and his family have been profiled on the front page of the Wall Street Journal and are the subjects of a book by Pulitzer Prize winning journalist Gita Anand. The title is The Cure, How a Father Raised $100 Million and Bucked the Medical Establishment in a Quest to Save His Children, which he did. A major motion picture is made out of that or based on that. The story called Extraordinary Measures, starring Brendan Fraser and Harrison Ford. John is the author also of a memoir called Chasing Miracles, The Crowley Family Journey of Strength, Hope, and Joy. But that's not all. That is just the tip of the iceberg, folks. John also served as a commissioned intelligence

Starting point is 00:05:41 officer in the U.S. Navy Reserve from 2005 to 2016. He was assigned to the Joint Special Operations Command, JSOC. For those of you who have listened to my episode with retired four-star general Stanley McChrystal, you'll be familiar with JSOC. And he is the veteran of the global war on terrorism with service in Afghanistan. Graduated with a BS in foreign service from Georgetown and earned a JD from the University of Notre Dame Law School and an MBA from Harvard. He previously served for two years, 2014 to 2016, as the national chairman of the Make-A-Wish Foundation of America and is a founding board member of the Global Genes Project. John is a Henry Crown Fellow at

Starting point is 00:06:22 the Aspen Institute, which is where i met him i was also a henry crown fellow and ended up in his class this guy is amazing i am constantly impressed he is jacked ripped intelligent effective has perfect hair which i'm of course very jealous of we'll get into that so please enjoy my very moving very powerful and very wide-ranging conversation with the one and only John Crowley. John, welcome to the show. Tim, great to be here. It is so great to see you. Yes, my friend.

Starting point is 00:06:54 And every time I see you, I think your shoulders have grown larger. You're bursting out of... At 49 years old, I assure you it's an illusion now. Just, you just have to start shopping at Gap Kids. And I guess that's, that's what I do whenever I want to look huge. I thought we could start, we were chatting a little bit before we started recording about, you were educating me on fast roping drills and making my hands sweat. Could you please explain? And I said, you know what, actually pause. Let's talk about this when we record. Could you retell what you were describing to me, please?

Starting point is 00:07:27 Yeah. And if you remember, this came up in the context of describing kind of fears of heights. Yes. And I said, you know, despite having served in the military and work with some amazing people and done some things that I probably shouldn't have ever been doing, at least at that age, talked about fast roping. So with a fear of heights, I was being trained as a Navy intelligence officer working with a SEAL team. So I had the Navy SEALs teaching me how to fast rope. So, okay, great. And give you the basics. And then you go up in this tower. So we end up going up, you climb up these ladders 40 feet, and then there's a plank and there's a real salty looking

Starting point is 00:08:01 SEAL chief petty officer hand in the rope. And it's a really uneasy feeling to step out on a plank and grab a rope, even though you think you're strong enough to hold it and you know the basics and can kind of slide your way down. Just that thought of my life is now literally in my hands. Literally. You're untethered. You are untethered. You step out on a rope off away from the platform. You grab the rope and you slide down fast. And it better be fast because the next guy is above you. And if you go too slow, he's going to come crashing down on you. So you're terrified. You do it. So I do it.

Starting point is 00:08:34 And 40 feet. I mean, if you fall and I'm sure people do fall. I was talking to a friend of mine. I won't mention by name, but he was practicing with the West Coast Seals and he was telling me about accidents on ropes courses. Oh, sure. And I'll be involved. So, all right. So you do the 40 feet. So we do that.

Starting point is 00:08:50 You do it once, you do it three times. So, and it's a quick evolution. You finish, they check the box, training certified at 40 feet. Okay. So you think you've accomplished something and then chief petty officer chief says, all right, we're going up.

Starting point is 00:09:03 So then you climb up to 90 feet. That's a long way up. And now you're looking at a plank and they're just handing your rope and I'm hesitating and I'm thinking, I can't hesitate. Or it's, you know, this isn't what you do in the special operations world, of course. And I don't want this, this chief petty officer seal getting all, all angry with me. So he hands it to me. So I'm thinking I got to come up with something to say to, to say to try to defer this at least a few moments. I said, Chief, quick question. I said, any difference between up here versus down there, 90 feet versus 40 feet? And, of course, I meant difference in technique.

Starting point is 00:09:37 And I was just trying to make conversation at that point. And he says, oh, yes, sir. Yes, sir. I said, Chief, what is it? With all of his wisdom, he said, if you fall down there, you get an open casket. And he hands it to me and he goes, go. So thanks coach. Yeah. Thanks. And thankfully, of course I survived. So I had great teachers. Good God. I mean, I, we were, we were discussing a number of things. Everything is fine. It's safe So I had great teachers. hands. I don't know what it says about me. Maybe I'm bad at thermal regulation, but I'm just pouring sweat. I'm very sensitive to heights. And it's part of the reason that I took up

Starting point is 00:10:29 bouldering and belay rock climbing sometime ago to try to therapeutically fix that. I haven't yet succeeded. How do you, I was going to say, how did that work? It actually helped quite a bit. I just had to use copious amounts of chalk. It addressed my perception of danger, but it did not affect the hand sweating. So I just used disgusting amounts of chalk, which is true when I deadlift too. Maybe I just sweat a lot in general. Let's start way back in the beginning. And I love speaking with my friends in this somewhat unnatural interview format because I get to do the 20 questions that would seem so odd if I did it at dinner or something like that. Sure. Sure. Or that I wouldn't answer.

Starting point is 00:11:10 Or that you wouldn't answer. Right. So now compelled by the recorder in front of us, what was your childhood like? Could you describe your family and upbringing? Sure. So I grew up in Northern New Jersey and my mom's family was from Italy. My dad's family was from Ireland. They were both first generation. They met when they were young and I was born in 1967. My dad had served in the Marines and was a cop in northern New Jersey. We lived in Englewood, New Jersey, just kind of right by the George Washington Bridge. And, you know, from what I remember the early years, it was pretty nice, fun. We lived in small little garden apartments. And in these garden apartments, my dad's brother lived, who was also a cop. My grandfather, the Italian from Naples, was the superintendent of the apartments. All my cousins lived there. It was, you know, it was kind of like a commune, if you were, for the family. And things were good. But, you know, it was kind of like a commune if you were for, for the family, uh, and things were good, but I, you know, there was an, I think there are those things in life that, that change you or, or have an impact. And for me, it was in January 1975, when I woke up

Starting point is 00:12:19 one morning and learned that my dad, who was a cop, my hero, had died on duty the night before, was killed in a tragic car accident. It was Super Bowl Sunday. And life changes a lot. You know, by that point, we very quickly moved in with my grandparents who lived the next town over. They had a 900 square foot home that my grandfather built after World War II, two bedroom, one bath. Grandma, grandpa, and my then 20 or so year old aunt in one bedroom. And me, mom, and my then four year old brother, I was seven, four year old brother in the other bedroom right after dad died. So things change, yeah. And I think in those, you know, was surrounded by lots of love. And, you know, I think what my mom did to keep us together, what my grandparents did, everybody, what the police community did for us was really remarkable. And those are things you never forget. I'm so ashamed that I somehow didn't know that. I feel like I should have known that and I

Starting point is 00:13:25 didn't. How is that, if it has, I can't imagine that it hasn't affected the person you are today. I mean, how did that change you? You know, obviously, you know, you miss your dad a lot, but I think it forces you to grow up really fast, Tim. And for me, it really, I think, was probably two lessons. One, that a lot of people, you know, may rely on you in life. You know, for me, it was my then four-year-old brother, even my mom, in a way. She had to go to work, and she went to work, you know, she'd been a professional administrative assistant earlier in life, then was raising us, and then had to become a waitress in northern New Jersey. So a lot of people, I realized at an early age, may rely on me for whatever that may be. That was one really, really important lesson.

Starting point is 00:14:21 And number two is it's okay to rely on others. It's okay to ask for help. And we did, I did a lot. And, you know, those things change and you move on and it stiffens, you realize you got to be independent. You know, the world is full of setbacks. I had a friend years ago whose dad once told me, life is a series of challenges and your happiness in life is directly related to how well you deal with those challenges. And that was one really big challenge really early on. So we, I think this is going to be a recurring theme that we'll come back to quite a bit in this conversation. But before we, we go down that route, what were your strengths and weaknesses as a kid or quirks? I have this picture of like a mini Captain America.

Starting point is 00:15:12 Really mini. That's how I think about it. Never got past five foot six, right? But what were you like at, let's say, 10 years of age? What were your strengths, weaknesses, or any defining behaviors, characteristics were your strengths, weaknesses, or any defining behaviors, characteristics, good student, bad student? Yeah, I was a good student. I worked hard. I learned early on in life, you know, to study is a road to success. My grandfather didn't finish the seventh grade. And even before

Starting point is 00:15:40 my dad died, we'd spend a lot of time with him. You ever been to Fort Lee, New Jersey, and you see those big apartment buildings that rise across the George Washington Bridge on the Jersey. When I was a little kid, they weren't there. That was an amusement park, Palisades Amusement Park. So one of the first buildings that went up,

Starting point is 00:15:56 my grandfather was a superintendent. He was a handyman. He can fix anything. But my mom was working and somebody had to watch me. So I was, I don't know, four or five years old. And I used to go to those apartment buildings with my grandpa and he'd show up with his toolbox. And I said, grandpa, I want a toolbox too. He said, oh, absolutely. And he gave me a toolbox with a couple of real tools in it. And I'd go around with him all day long and he'd be

Starting point is 00:16:19 fixing dishwashers or door jams or whatever. And I'd bang a hammer, try to help because boy, this grandpa, but I want to either do this or I want to be a cop like that. And what grandpa did, and I didn't realize it till many years after, was over the course of that year, he would slowly take the tools out of the toolbox and put books in. And after I got bored with swinging a hammer, and when I realized even at four or five years old, I wasn't very good at swinging a hammer, I just start reading the books. So, you know, I tried to be a good student.

Starting point is 00:16:54 I think I was a pretty decent student. Again, a lot of good teachers along the way. Tried to be an athlete, and I was a perfectly mediocre athlete. Good enough usually to make the team and never nearly good enough to stand out on that team. What were your sports? I played baseball and by high school wrestled as well. So, you know, sports that a guy who's

Starting point is 00:17:17 five foot six and 155 pounds as an adult could play as a kid. Football I played. I was, you know, I think in fourth grade, I went out and made the football team. I started as a kid. Football I played. I was, you know, I think in fourth grade, I went out and made the football team. I started as a lineman. I was about average size maybe in fourth grade. And then everybody kept growing. And I wasn't growing quite as fast as everybody. So by, you know, fifth, sixth grade, I was a linebacker.

Starting point is 00:17:39 Then I was a running back. Then I was a free safety. And by ninth grade, I went to Bergen Catholic High School in New Jersey, football powerhouse. My sophomore year in high school, they were ranked number two in the nation. So freshman year, I'm going out for the football team. That lasted about five days. I realized this, I love football.

Starting point is 00:17:58 This is not a sport in which I should participate safely. No matter how calm I tried to be, I should not participate. So you look, a decent student and, you know, mediocre athlete, you know, always tried to, you know, friends always made fun of me. I always seemed to have the hair kind of parted and combed right. You still do. Well, you know, it's funny. My daughter, Megan, pointed that out over Christmas. I know we were talking about something or other and it was really windy. I came in and she goes, oh my God, it can move. I said, what? She goes, your hair. She said, my options are limited these days. Jason Statham or bust is sort of my, my motto for, for styling. But what did you think you were going to be when

Starting point is 00:18:54 you were in high school when you grew up? What did you, what did you think you were going to be or hope to be? For, yeah, you know, I, I always had been focused on on the military i think with my dad being in the marines and and my uncle in the navy and and there being police officers there was always that sense of um you know patriotism and responsibility and and wanting to serve the country so i spent a fair amount of time thinking about you, going in the military in high school. And I also thought about being a lawyer, even in high school. And how did you decide on college? And actually, before I get to college, did you have any particular, I'll ask the same question for college. So if you want to just skip ahead, you can do that. Did you have any particularly impactful mentors or people who left a mark on you in those high school years?

Starting point is 00:19:50 Yeah, you know, so I went to Bergen Catholic High School. It's taught by the Christian brothers or, you know, they were founded in Ireland, the Irish Christian brothers. They were a good order. You know, I think they taught us well. I really can't point to any one particular person in high school. I think, you know, in terms of a mentor, somebody who taught me about life, for a male role model, it would certainly be my grandfather. How did you choose where to attend college or how did you end up attending the school you did? So I actually spent the first couple of years of college at the Naval Academy and got an appointment from our senators. And that kind of took me on the course in the military. And then again, you know, we make our plans and God laughs.

Starting point is 00:20:34 So I got to my second year at the Naval Academy. And after the first year, you go through the physical and they actually check the box. I couldn't. My eyes weren't 20-20, check the box, not qualified to fly. Because by then at 18, 19 years old, I was going to be the world's greatest F-14 pilot. And then boy, that was a real setback. It's been thinking, you know, I was going to do this, now I can't do it. Well, maybe I'll be a Marine out of the Naval Academy or something else. And then just started to think about, you know, was that the right fit for me and the 19 year old struggling and finally made the decision that I was going to voluntarily resign from the

Starting point is 00:21:10 Naval Academy. It took me months to come to that decision. By that point, I'd been accepted to the School of Foreign Service at Georgetown and loved the academics, the curriculum. Eileen was also then in college. It was my high school girlfriend and now wife. So the thought of living in Washington was attractive, and I did, with a good degree of hesitation, sign that letter of resignation. I did put in that letter that someday I would like to wear a uniform again,

Starting point is 00:21:40 and someday I would like the honor to serve our country. And I left it at that in whatever that was 1987 or so, and went to Georgetown, finished Georgetown. What did you study at Georgetown? So I was in the School of Foreign Service at Georgetown. Yeah, you know, I'm going to plead ignorance here. I should know what that entails. And I just don't. So what's the curriculum? What is done at such a place?

Starting point is 00:22:09 So it's one of the four or so colleges at Georgetown. Bill Clinton graduated from the School of Foreign Service many years before me. So SFS, it stands for School of Foreign Service. We used to say it stood for Safe from Science. So it had no math and no science requirements. Years back, it was a school set up to train diplomats. It's since become a liberal arts college with a strong emphasis on international relations. I majored in international economics. Excellent program. I mean, I had phenomenal teachers, people like Madeleine Albright, Jean Kirkpatrick, William Colby, who had been director of the CIA. I mean, Gene Kirkpatrick, William Colby, who had been director

Starting point is 00:22:45 of the CIA. I mean, remarkable people. Great, great school. And then from there, I thought, well, okay, maybe I will be a lawyer after all, and applied to law schools. I was accepted to a couple, one of which was the University of Notre Dame. Now, I'd thought about Notre Dame as a college, but Naval Academy trumped it, and then Georgetown, for a whole bunch of reasons, made sense. And I'll share this with you. So I talked about my dad passing away. So the first time I ever watched it, so people think Notre Dame, they think, ah, college football or sports. And yeah, we have great sports and athletics programs at Notre Dame and certainly great academics. I didn't know anything about Notre Dame beyond that. So as a little kid, the first time I ever watched a football game, I was seven years old. My dad said, oh, we got to watch a football. I said, dad, I don't want to watch a football game. He goes, no, no, it's Notre Dame. I'm like, what is that? He's like, watch. Now my dad was one of the subway alums, meaning he never went to Notre Dame, never went to college, never even went to South Bend, Indiana, But he just loved the

Starting point is 00:23:45 school, loved the spirit, tradition, all of that. So, all right. So I kind of whined and complained and I watched it. It was the Sugar Bowl, 1975, Notre Dame versus Alabama. So we're watching this game and all of a sudden I'm cheering. By the end of it, I'm totally taken in with the mystique of Notre Dame and the gold helmets. I just love these gold helmets. Notre Dame wins the game 13 to 11 over Bama. So I said to my dad, I said, dad, this is great. And he smiled. I said, yeah, I'll never forget this. I said, dad, I want one of those gold helmets. He said, tomorrow we're going to Sears and Hackensack, New Jersey, and we're going to get the gold helmet. I said, great. So we go the next day, go to the football helmet section in the athletic department there. And I'm looking at him, dad, there's no gold helmet.

Starting point is 00:24:26 He said, no, no, this is how you do it. So he takes a generic helmet off the shelf, goes to the hardware section, gets a can of gold spray paint. And he says, we're going to spray paint it. That's how you make a Notre Dame helmet. So we go home, we spray paint it together. And I had my Notre Dame helmet. That was January 2nd, 1975.

Starting point is 00:24:46 My dad died 10 days later. Oh my God. And I still have that helmet, Tim. And that memory and the affection, affinity, respect for a place like Notre Dame carried with me. But I came down to, you know, I had a couple of schools to choose from. Notre Dame was one of them. I'd never been to South Bend. I didn't have the money to go visit by the end of college, literally. So I said, well, it's now or never. So I checked the box, sent in a hundred dollar

Starting point is 00:25:14 deposit and said, well, I'm going to Notre Dame law school. And, uh, and I did. And I should point out also that your fondness for Notre Dame extends to our selection of cable colors for today's interview. I have a blue shirt on. You asked, do I want green, orange, or yellow? I said, well, yellow looks like gold. I'll take blue and gold. Now I really got to love Notre Dame. My daughter Megan's a sophomore there.

Starting point is 00:25:42 So we'll talk more about Megan a little bit. So it was great. And then I, you know, practice law for a few years after that at a great firm in Indianapolis. I get bored sometimes really easily with things. What type of law were you practicing? I was a litigator. I was a trial attorney. So I did that for a couple of years, great people, great firm. I was just kind of itching for something else. And on a lark, I applied to business school and the people up at Harvard, I still think it was a clerical error, but they were, you know, accepted us. We were married, Eileen and I, we had a one-year-old, a nice house, nice life in Indianapolis and picked it all up to move to Boston. And it was one of the best decisions we ever made. Why was it such a good decision?

Starting point is 00:26:26 We made some of the greatest friends that we still have today. And what was neat about the business school up there, what's I think very different about business versus law in terms of the education, we spent a lot of time on understanding through the case study method, of course, in business school, how do businesses really work at least as best as you can in a case study method. Can you describe that?

Starting point is 00:26:51 Because I had a professor at Princeton, Ed Schau, who had a huge impact. Oh, Ed's great. Wonderful. Yeah. Ed.

Starting point is 00:26:57 So for those people who don't know the names, he is just a phenomenal human being and, and a very eclectic character, which I love. So former competitive figure skater, former congressman, took at least one company, I think a few companies public, was the first computer science professor at Stanford, I believe, because somebody didn't show up to teach it. And he said, sure, I'll figure out how to teach that course. And he taught a class at Princeton in high-tech entrepreneurship after leaving Harvard Business School. And he used the case study method, or yeah, it was a case study. Am I saying that

Starting point is 00:27:32 correctly? Could you describe what that looks like in practice? Right. So you show up at most colleges, most schools. What do you do? You go get all your textbooks, right? At HBS, our first year at the business school, we didn't have any textbooks. You instead go to the case distribution office. And I don't know how they do it now, but 20 years ago, every class was one case. In your course of two years study, you will do 800 case studies. So I'll give you an example. So first day, first class, it was technology and operations management, kind of a tech ops manufacturing type course. Now, having been a lawyer and spent most of my life avoiding math and science, I get this case. I'm like, all right, I got to do this. I got to get it together.

Starting point is 00:28:15 So it was a case called Donner Drilling. Never forget about it. Company, they're manufacturing widgets or whatever they're making. And we had to calculate the optimum throughput for manufacturing for the most cost-effective and efficient manufacturing process. So I'm excited. I'm like, this is real business. This is what I came here for. And I'm looking at it, and the first thing I look, oh, my God, I'm looking at the math that I got to do on this. So you study this, and it's real life, it's an actual case study that a professor, usually with a research assistant, has gone out and interviewed the business person entrepreneur and taken the issue that they had and distilled it down to a case study for students. So now you're prepared, you go into the class.

Starting point is 00:28:56 80 of us, first year section, Steve Wheelwright, never forget the name, great guy, professor out there, the dean of the MBA program is teaching it. Just a legend at HBS. Brilliant, brilliant man. Now what they do is they begin with a cold call. So you don't know. Somebody's going to get called on. But unlike in law school, it's not a quick give and take and multiple cold calls.

Starting point is 00:29:19 Every class, one person is selected randomly to begin the case and for a good 20 minutes, lay it out before the class then participates. So one of the great things about business school and especially how they taught it up at HBS is the students are in many ways teaching each other. And it's a discussion. So I get, of course, first class, first case. Why don't we have start us off, John Crowley. John, are you here? And I'm in the top deck and I'm like, oh God. Professor, yes, I'm here. I'm like, he's like, John, what do you think Donner Drilling should do? So I start laying out a strategy, a plan. And he's up there and now I got to get to the math. So the equation, he's putting it all up there on the board. He's laying it out.

Starting point is 00:30:08 And it just makes no sense. And he's a nice guy, very patient. He starts looking back at me in the class. Uh, okay. And whenever a professor says, uh, okay, you're probably not going down the right path. Not okay. So then finally he starts writing the equations I'm giving him down. And then he just puts the chalk down and turns around and just looks at me. And then I just looked at him.

Starting point is 00:30:28 It was this kind of awkward moment. He just smiles in kind of a fatherly way. And I just said, well, professor, when I applied, I was told there would be no math. And there's this awkward moment. I'm like, nobody's laughing. And then everybody burst out. And it really diffused the tension. but it's a great way to learn. And oftentimes, you know, we'd have the real executives or entrepreneurs in the class, uh, to teach us. I, a couple of years after I graduated,

Starting point is 00:30:56 they actually wrote an HBS case study about our journey in life. Um, so called it's called a father's love. So let's, let's jump into that and we can fill in gaps if and as needed. What does that case study cover? Why did they do a case study? So we, uh, I graduated business school then in 1997. By that point, our son, John was, um son John was about three years old. Our daughter Megan, John was actually, Tim, two and a half. Megan was six months old. So we had Megan when we were in business school.

Starting point is 00:31:38 About six months after we graduated, we realized by a year of age, Megan, we had moved out here to the Bay Area in California. You know, life was great. I had a lot of student loans, but we had a great job. We had a life. And this is, you know, starting the American dream, if you will. What were you doing for work at the time? I worked with a consulting firm out here in the Bay Area doing, you know, business strategy, consulting, a lot of hours.

Starting point is 00:32:07 But great people and, you know, it's kind of what I signed up for. What we didn't sign up for is by a year of age, we realized our daughter, Megan, who was born seemingly perfectly healthy, born in Boston at the Brigham, wasn't doing the things that a kid typically should do by nine or 12 months of age. She wasn't pulling up in the crib. She wasn't taking her first steps. So from pediatrician to neurologist to next neurologist to blood work to biopsies. And by this point, early 1998, Eileen is pregnant with our third child, Patrick. Patrick is born March 6, 1998. Seven days later, we're asked to come to the neurologist office at Oakland Children's Hospital across the bay here. And we're told all the tests came back on Megan,

Starting point is 00:32:57 who was then 15 months old, and that she had a rare neuromuscular disease called Pompe disease. I'd never heard of it. There's no history of it in the family. Eileen and I were silent carriers. You know, any person is a carrier generally for maybe a dozen or so serious genetic diseases, but you don't, doesn't manifest until you happen to make a baby with somebody else who

Starting point is 00:33:20 has that. And even then, oftentimes just a one in four chance. So no health history in four chance. So no health history in our families. And then we, you know, I asked the doctor, is it serious? He says, yes, it's very serious. And his hands are shaking. And he's reading, basically reading a textbook to us describing the disease. And he tells us, Megan has a genetic defect where she can't make a certain enzyme. And without that enzyme, she can't break down glycogen stored in the muscle, which as you know, is stored until it's converted to glucose and used as muscle energy.

Starting point is 00:33:56 Because of that, it's ravaging her muscles. And now we're just, you know, we're just in shock. And then I said, Doc, how serious? He said, I don't think she'll live another year. And then he said, we had Patrick with us. He was seven days old. He was in the car carrier. He said, and your son Patrick should be tested too. There's a 25% chance he may have the disease as well.

Starting point is 00:34:28 And I got to tell you, we went through that car ride, Tim, home. Back, we were living in Walnut Creek near Oakland at the time, just in stunned silence. You know, we then, even just that night, we went through, I got to walking through the door at the house, seeing Megan sitting there in her high chair. I couldn't even look at her. We went through that night, the shock, up late. You know, Google wasn't even around, but I did some internet searching. And I found that there was a doctor at Duke University. There's a little bit of research being done. In fact, he had just published a month earlier a paper showing that he could correct the disease in some animal models of the disease. And I was so excited and I woke Eileen up.

Starting point is 00:35:23 And I'm explaining, I'm rattling off this science. I don't know anything about science. And she looked at me like, what are you even talking about? And what does it mean? I said, I think Eileen, it means there may be some hope. So that was a long day. It was a Friday the 13th. Never forget. Can I even imagine that is sounds like the longest of days. It was the start of many long days, but it was a long day. So I don't want to interrupt. Why don't you tell us the story in a way that makes sense to you to tell it? And of course, this is something that would follow as well. That as well has been turned into a book. It has been turned into a movie.

Starting point is 00:36:11 But for those people who don't know the context, what happened after that? So, you know, Tim, right at that day, after that Friday the 13th, after Megan was diagnosed, I took the next couple of weeks and really dug deep into, you know, what was this disease, this Pompe disease that we had never heard of? It is one of 50 or so muscular dystrophies, started to figure out who are the leading scientists working in it. There were very few, a couple here in the States, principally one at Duke University and a team over in Rotterdam in the Netherlands. And I began to reach out to them, began to take Megan to see them. That was hard, too, because we had a newborn at home. We had a three-year-old at home.

Starting point is 00:36:49 And I had a job a year out of business school that was expecting me to work 100 hours a week, you know, on an easy week. But this, you know, had to take priority. This was the most urgent matter, as you can think about, that you could imagine. So, you know, look, I'll give you the somewhat brief version of it. We go through all of this. We find some of the doctors. We help raise money for some not-for-profit foundations to bring some more research money in, raise about a million dollars in not-for-profit money in about a year. In the course of that year, though, from Megan and then Patrick's diagnosis, which came about a month later, confirmed that he had the disease, even though there was only a one in four chance that he would. You know, we were just determined.

Starting point is 00:37:33 I had mentioned that we went through the shock, the grief, the denial, all of that very quickly. We very quickly settled on determination. We didn't know that we could ever change the course of their disease, but I didn't want to have to live the rest of our lives wishing that we had tried. So we said we would try. And we tried through the not-for-profit world. We raised money, eventually found a researcher with some very exciting science at the University of Oklahoma, a medical research center out there. He couldn't get any traction raising money, wanted to start a small company. I tried to introduce him to entrepreneurs, funders, nothing. By that point, we had already moved back to New Jersey. I was working for a big pharmaceutical company, Bristol Myers Squibb, position in marketing, good health

Starting point is 00:38:19 insurance. I had some great mentors there. I did not go to Bristol Myers to learn kind of a boot camp of how do you run a biotech or biopharma company. I did it because it was in New Jersey. It was a good job, good health insurance, good people. But at nights and on the weekends, kept raising money for the not-for-profit, raising awareness of the disease. And in the midst of that, struggling to keep Megan and Patrick alive. Megan first and then Patrick, her ability to eat went away within a few months. She had to be tube fed. Her ability to breathe went away by the fall of 98. She had small pneumonia.

Starting point is 00:38:57 She almost died in the hospital. Had to be ventilated. And six months later, we went through all the same thing with Patrick. And he had to be ventilated. Then six months later, we went through all the same thing with Patrick and he had to be ventilated. So within a year, we went from kids that were perfectly healthy, normal to two little kids who were ventilator dependent and wheelchair bound.

Starting point is 00:39:16 Science was beginning to show some promise, but we realized early on that it was gonna be a race against time as much as it was gonna be against nature. So after two years of doing that by 2000 and then working at Bristol Myers, I had a choice. Either we could do this full time or we could, you know, let nature run its course. And again, we were so determined. So I quit my job at Bristol Myers, joined forces with that scientist in Oklahoma.

Starting point is 00:39:45 We started a tiny little biotech company. I still had all the student loans, but we had had a house, had a little bit of equity. The real estate market in New Jersey was doing well at the time. So of course, what do you do? You took a home equity loan. So the first money into the company, we took $100,000 home equity loan. All the equity in our house. Thought that would last a long time.

Starting point is 00:40:07 It didn't. Then met payroll with a Visa and a MasterCard. Very prestigious venture firms, a Visa and MasterCard. Tier one. Yeah, yeah, tier one. Oh, yeah, top tier. NEA came in right after them. So what ended up happening, we started this little company.

Starting point is 00:40:24 And we started that in March of 2000. Within a year, we had some early success. Yes, I put the early money in. We then raised angel money, raised $1.2 million from 37 individuals. I mean, literally knocking on doors of people who I thought might be qualified investors. In Oklahoma and New Jersey, it was family, it was friends. We did that, probably the toughest money I've ever raised, but it gave us breathing room, gave us room to do some research. We began discovering a treatment. What we had to do was to make an enzyme therapy to basically replace the enzyme that Megan and Patrick and people living with Pompeii couldn't make. That company ended up becoming very successful, attracting within a year the attention of a lot

Starting point is 00:41:09 of people. And I think it was successful, Tim, because we literally did not know what we were doing. I was 30, 32 years old. Yeah, I had some good degrees and an education, but I had no idea how to be an entrepreneur. Certainly had no idea what you do as a biotech CEO. So I made it up. And because of that, we broke so many of the conventional rules. I think that's why we were able to beat time as well as nature.

Starting point is 00:41:35 So by the fall of 01, we said, I need more money and I need more manufacturing capabilities to actually make this drug. It was starting to show some promise in some early science results in the labs. manufacturing, capabilities to actually make this drug. It was starting to show some promise in some early science results in the labs. And so made the decision that we would sell the company. We sold it to Genzyme, at the time, the largest rare disease biotech company in the world, founded by Henry Tremere, a magnificent entrepreneur with a real passion for people

Starting point is 00:42:02 living with these diseases. But but still it was a big company and it was our competitor that is what the case study was about so the hbs case study a father nova's i am a father's love was the choice that i had presented to our venture investors one year into that business do we sell the company to genzyme or do i do a large partnership with a deal that we had negotiated with Genentech, which would have brought them into the rare diseases, decided to sell the company to Genzyme? Because I knew at Genzyme, as much as I respect Genentech,

Starting point is 00:42:35 at Genzyme, this program had to succeed. So what we ended up doing is- Why is that? Because for them, rare diseases were their business. They knew this would become, and it did become, their most expensive development program ever. The thing is, because for them, rare diseases were their business. They knew this would become, and it did become, their most expensive development program ever. Hundreds of millions of dollars. A very difficult program.

Starting point is 00:42:55 Very difficult drug to make, medicine to make. Lots of challenges when I was at, I stayed at Genzyme. I was Senior Vice President of Therapeutics at Genzyme. Can I interject for a second? By all means. At this point, were your children already, were they already being treated? No. Got it.

Starting point is 00:43:12 So by the time we came to Genzyme, Genzyme had other Pompe drugs in development. We brought our technologies in. We had a choice of drugs and technologies. We ran a series of experiments and we backed one. It was one that came from the Genzyme Science Labs. Children began to be treated. We saw some remarkable results early on. So in Pompe disease, not only are those skeletal muscles weak, the cardiac muscle is very

Starting point is 00:43:37 weak. By that point, Megan and Patrick, who were four and two or so years old, not only were their muscles weakening, not only did they need ventilators to breathe, their hearts were so enlarged that that was the most life-threatening aspect of the disease. Just a quick question. So glycogen is also stored in the liver,

Starting point is 00:43:57 if I'm thinking correctly. It is, glycogen is stored in many places in the body. So does it also cause problems in organs like the liver? Yes, so what you see in the livers, their livers became enormously enlarged. That wasn't actually a life, immediate life-threatening aspect. The cardiac. It was the cardiac and then the pulmonary, the breathing. And then obviously quality of life with the loss of skeletal muscle strength. So when we were at Genzyme, we were moving full steam. We had lots of resources, great people. We had manufacturing facilities, all the ingredients for success, beginning to

Starting point is 00:44:30 treat kids, seeing that their cardiac disease was reversed, in some cases, even seeing strengthening of muscles. But I couldn't get my own kids treated. The protocols that the teams had developed were for younger children. I got to tell you, one of my toughest days, Tim, was August of 2002. We were doing a family vacation down at the Jersey Shore, still working away like many people do on vacation. The day before, we took the kids to the doctor. They did echocardiograms. The doctors told us that at that point, Megan had about a year to live, Patrick maybe six months. We had a drug. It was in kids. It was reversing their heart damage.

Starting point is 00:45:14 But my kids weren't yet on that drug. The next day, I got a call from a colleague at Genzyme who said that a decision was made. The next study with the next material would be in Pompeii infants. And he knew my kids wouldn't qualify. That was a really, really tough day. Thankfully, a lot of good doctors, good people at Genzyme and eventually a small Catholic hospital in New Jersey agreed, St. Peter's University Hospital in New Brunswick agreed that they would treat our kids. But that was months and months of back and forth discussion, negotiation. It makes for some very dramatic scenes in the movie. Gita

Starting point is 00:45:58 Anand captures it in her book very well. And then by January of 2003, January 9th, what would have been my dad's birthday, my kids were treated. They became the 27th and 28th patients in the clinical study. And that was a great day. So much, so many things I'd like to ask. So let's start with what comes to mind, critically important in that period and how did you handle them? There were many and I handled them poorly. So I looked by that, that was the most desperate I ever have been in my life, Tim. Literally our kids' lives were on the line. At that point I could care less about our career. We were blessed to have actually made some money so that we had a financial future that was secure for the kids. And that was wonderful.

Starting point is 00:47:12 But obviously, the focus was on how do we get the kids treated. I was so frustrated that at one point, by September or so, I reached out to doctors who I knew who were going to be at a, going to be a clinical site for the study, asked them to treat my kids, to set up a protocol for them. I went down, I did it. It was at the University of Florida and made great sense, scientific sense, but it didn't follow the protocols within the company. And I thought at that point, you know what, better to ask forgiveness than permission. Let's just get it, set it up, take the heat. Heck, they could fire me. I don't care. When people found out, it was a very, very difficult day and made for a lot of

Starting point is 00:47:58 tension. Any trust that was there was then broken. For me, I felt it was worth the risk. I took the risk and I lost. We weren't allowed to do it. There was a lot of conversations in the company. And ultimately, I fought it for a week or so and then realized at that point, I've taken this as far as I can. Now it's out of my hands. And so I stepped back.

Starting point is 00:48:28 They went to a hospital. That hospital then actually said, okay, I'm not going to run this. We'll let others run it. Then the FDA was comfortable. Genzyme the company was comfortable. This large academic teaching institution, their institutional review board that approves clinical studies would not approve it

Starting point is 00:48:50 because the study included executives, children of an executive of the company whose drug was being studied. So now I'm like, you've got to be kidding me. That was then became not only a hard day for me and Eileen and the family. Now it was a hard day for my colleagues at Genzyme because they were fighting very hard

Starting point is 00:49:10 to get our kids treated at that point. And by that point, I had really just, I don't want to say given up, but prayed a lot, thought a lot, spent a lot of time with the kids. And then right around Thanksgiving, we learned that they were able to meet with an expert who knew the disease, who was at St. Peter's Hospital in New Brunswick, New Jersey,

Starting point is 00:49:34 and that they were going to present it to their institutional review board for approval. I learned about it, was thankful, hopeful, prayerful. But just to make sure, I resigned. I quit. So that I did that the day before the hospital review board met. I didn't think it would be an issue. It wasn't an issue, but I wanted anybody to make an issue out of it. So I quit and I waited to hear.

Starting point is 00:50:02 We got a card, a letter, first a phone call, and then a letter came Christmas Eve. And it was a Christmas card, a beautiful picture of the Blessed Mother on the cover with a copy of the hospital letter approving the study for Pompe disease at their center that would include our kids. That was the best Christmas present we've ever gotten. How did you respond to that? How does one, I can't even fathom. I mean, so I got the mail that day, it was Christmas Eve. And I looked at it and I read it. I cried. And I wanted to run in and share it with Eileen. I wanted to share it with Megan, with Patrick.

Starting point is 00:50:47 And I said, you know, I'm going to wait a little bit. We had family. We had Eileen's family, her mom and dad, my mom coming over for Christmas Eve dinner. So they came over, and we had a glass of wine and celebrating a nice Christmas. And Poppy, the kid's grandfather, read Twas the Night Before Christmas.

Starting point is 00:51:04 And I was just dying to share this. I was in really good mood. I didn't even know why I was in such a good mood. I figured it was the Cabernet maybe. And then we sat down at dinner. We said grace. And I said, I have something else to share. And I read the card and the letter.

Starting point is 00:51:19 So it was a good Christmassy. That's a good night. That was a good night. That is a good night. All right. I'm going to backtrack for a second and you mentioned something i'd love to get just a few examples of you said we we broke a lot of conventional rules because in a sense you didn't you didn't know any better that's right what were what were some of the conventions that you broke are the things you did differently so when you're a drug, one of the things you need to do is you kind of go through

Starting point is 00:51:48 these rigorous series of experiments to show in animal models of the disease that it's safe and that it's actually working. Is it getting to the muscles in this disease? Is it breaking down the glycogen? Do the animals get stronger? Typically, you'll do that at outsourced companies that these are the experts, takes quite a bit of time and done again in a very rigorous fashion. Once we had made a little bit of that enzyme in the lab, I was just dying to see, is this going to work? So we had genetically, actually the NIH had genetically engineered mice to express or not express the protein to give them the Pompe disease, which my daughter Megan still thinks is the meanest thing imaginable. And, you know, it's done very ethically.

Starting point is 00:52:32 And we had these animals. I had the enzyme. So I was with one of my colleagues who is a senior vice president in my then 11-person company because you're either a VP or you weren't in the company. And he said, well, I used to be a hospital tech. He said, I could do this. I said, well, yeah, let's try it. So when you do this, you've actually got to hit a really narrow vein in the tail of these animals to give it the injection. That's a really tough stick. So my buddy who hasn't drawn blood in about 10 years, he's there. We do put gloves on in the lab.

Starting point is 00:53:09 And he puts a little bit of the enzyme into the mouse. And I look at him and he looks at me and he goes, I think I got it in. I'm like, okay. So we do that once a week for four weeks. And then our scientists sacrifice, grind up the tissues. That's not how you do animal experiments. And I can assure you that that study failed and I can give you a whole bunch of reasons why it failed. So those are the hard lessons of things you shouldn't do.

Starting point is 00:53:32 There were things though that we did that were successful. So one of the things we did, I knew I had to make this drug in a way that we can deliver it to humans. So it's known as a GMP facility, good manufacturing practice. Exactly, so you're familiar. So we actually invested and made a plant. I couldn't build a greenfield plant, cost too much, takes forever. I met some entrepreneurs who had just begun

Starting point is 00:53:56 to develop a system of basically building a building within a building, a clean room. And we could do it for a couple of million dollars. And we had raised about 27 million at that point. So we did that and we did it at risk. We didn't have the definitive proof of concept in animals, but we did it very smart, very fast and very effectively. And although we never made the enzyme in that plant, because by that point I realized I probably need a bigger plant given the scale of what we needed to manufacture.

Starting point is 00:54:27 Had we done it, it could have gotten us in the clinic. And where that was successful is it gave me a fallback if any of these partnerships or the acquisition didn't work. And when I negotiated the deal, instead of the big company on the other side saying, well, you need us because you can't make it, I could take him and I said, yes, I can make this. Look at this. And that was pretty unusual.

Starting point is 00:54:46 People usually don't make those levels of investments and do it in a very unconventional way. So that was a good decision. Lots of bad decisions, but that was a good one. And now your children are healthy? So Megan and Patrick began receiving that enzyme therapy. It's an every other week IV administered therapy designed to replace the enzyme that they're missing. So they started that in January of 2003, and then we waited.

Starting point is 00:55:13 We got the first results back in early April. And the doctor came in with a smile, and Megan was sitting up in bed. And before she even got to the echocardiogram reports, she turned on the x-ray, you know, the light box had two x-rays, one of Megan of her upper body. And you saw this, you didn't need to be a cardiologist. I mean, you saw this enormously enlarged heart that was before her treatment 12 weeks ago. Then she put up the one that was taken earlier that day and it was night and day, her heart had shrunken back to normal. And I took it and I pointed, you know, took it to Megan's

Starting point is 00:55:50 bedside, showed her, explained. And she was all of, you know, what, six, six, five, six years old at the time. Explained to her she's a kindergartner. And I said, Megan, this means you're going to live to be an old lady. And she looked at me and put her arm around me and gave me a big hug and a kiss and just said, thank you. Biotech is a really tough business, Tim, and almost everything we try, it doesn't work. But when it does work, it really is the best job you can have. So the medicine fixed the kids' hearts. For a while,

Starting point is 00:56:26 it made them stronger, particularly Megan. But after about a year or so, the strength improvements plateaued and then slowly began to regress. So a year into treatment, they were much better. Their lives were saved. We realized it was an effective first- generation treatment, but it wasn't a cure. So what I realized then at that point, okay, I think we just bought a lot of time and some quality of life for the kids. They're still on ventilators, still in wheelchairs, but it helped them enormously. So I realized then, okay, I think we have to go do this again. We need to find next generation therapies, newer, potentially better medicines. And that's what led me to found this company Amicus in 2005. Do it again. And how are your kids today? So the kids today, Megan just turned 20.

Starting point is 00:57:20 Patrick is 19 in March. They're 15, 15 months apart. Patrick is a senior in high school, and Megan is a sophomore at Notre Dame. Have many people like her gone through Notre Dame before? So, you know, with Notre Dame's mission, it's certainly welcoming of people who are intellectually capable of the rigorous academics, but who have disabilities. So we've at Notre Dame, we've had kids go through, we've had blind students, deaf students. There was a young man, Matt Swinton, who graduated with spinal muscular atrophy a number of years ago, Duchenne boys. So people with severe difficulties. Megan is the most physically challenged student ever to go through Notre Dame.

Starting point is 00:58:02 She's the only student to have to live in a wheelchair on a ventilator with 24 seven nursing. So after she was admitted and she was hesitant to go so far away to school, I said, Megan, if that's where you think you want to go, we will make this happen. So then I called folks at Notre Dame. I know I said, okay, Megan's coming. What are we going to do? And they said, don't worry, we'll do whatever we need to do. And I got to tell you, Tim, they stepped up. The ladies dorm that she lives in, Ryan Hall, was designed to be handicapped accessible. It had handicapped accessible suites. They combined suites for Megan. They made every door of every building that she needs access to across campus accessible on her key fob. They've adjusted her class schedule.

Starting point is 00:58:46 They've provided aides and tutors. It was still a big show getting her out to South Bend. Where I was most proud, you know, I told Megan, I said, Megan, if you get in, we'll get you there and we'll make sure with the university's help that we get you through. When we showed up, lots of getting used to. The nurses who came out

Starting point is 00:59:05 to help, you know, they were all going to college again and, and, you know, they were excited, but, but, but apprehensive. We had planned for almost everything we could. And we had the nursing schedule, the hospital supply, they had the hospital bed moved in. Megan wanted to live a full, wants to live a full college life. So she wants to be in the dorms. So she was in the dorms. One thing we hadn't thought about is Megan's, you know, 20 year old young lady now weighs about 100 pounds. While you only need one nurse there to care for her, it takes two people to transfer her in and out of her wheelchair. I hadn't thought about who that second person is going to be. When I was in her dorm that second weekend, I was looking.

Starting point is 00:59:46 I didn't even think about it. I saw the nursing schedule on the board, and then I saw a schedule next to it. It was students who had signed up in her dorm to be there seven times a day at specific times to get Megan in and out of her wheelchair. Wow. That gives me some hope for humanity. There are some great kids, indeed. How have you raised your kids? Specifically, you can make it more generic if you'd like,

Starting point is 01:00:15 but what do you think the principles of good parenting are? So I would say that we raised our kids, and my daughter Megan would say that she raised us and somewhere in between lies the truth. I, you know, some of the basic rules in life you want to teach them. So, you know, you try to teach them about hard work, about independence. One thing that's remarkable though I've learned with kids with needs, and I've seen it not just with our kids, with lots of kids we've met over the years, is, and different from adults I've known who suffer with some awful diseases. These kids who live with these rare diseases, kids who live with cancers, they never feel sorry for themselves. And that's something I, you know, Eileen and I as parents could

Starting point is 01:01:05 never teach them. That just has to be part of who they are. And I've seen that measure of resilience in these kids. I've seen it in our kids in spades. And I've certainly seen it in many, many other children with a lot of rare and devastating diseases. And because of that, you know, I kind of kid around the, you know, Megan says she raised us, but I have to tell you for the things that we've tried to teach our kids about working hard and independence. And, you know, one of the lessons I try to teach our kids is that it's bigger than you, whatever it may be, whatever you're working on, it's bigger than you. Could you give me an example where that might apply? Or just describe what you mean by that?

Starting point is 01:01:49 Yeah. So, you know, we often kind of get enveloped in our own little universes. And even when we think we're helping others, sometimes we think a little bit too much about ourselves in the process. I try to teach our kids that, you know, there's a bigger purpose to life. I give an example. We took my son, John. Now, John does not have Pompe disease, but John has Asperger's. John has his own challenges. We tried to raise him with a spirit of, you know, that sense of faith and community and a bit of giving back to others. You know, many, many, most parents do that. I took him down when he was little every year to Washington, D.C. We do a father-son trip. And I'd take him to the memorials and the monuments.

Starting point is 01:02:32 And every year I'd always take him to Arlington National Cemetery. We were there one year and they were doing a special service. And it was to recognize wounded warriors. And it was right at the start of the Iraq War. It was 2003. And it was right at the start of the Iraq war, it was 2003. And there was a young man there had lost both his legs, a 19 year old corporal in the Marine Corps. And they were giving a speech and people going on. And I looked at John and his eyes were wandering, he's got ADHD. And I'm just wondering, is he getting it? And I just looked at him, I said, John, do you know what they're talking about? He said, yes, daddy. What are they talking about? He said, that young man fought for our country. He lost his legs and all these people in the cemetery lost their lives. He is a hero and

Starting point is 01:03:19 they are heroes. And I just thought of like, okay, he got it in his own way with, who will have kids with special needs. What would you say to them? What would your advice or otherwise be that you'd want to convey to them? So we've, we tried really early to be a so-called normal family. And I could tell you there was a lot of times early in life where we wanted, I wanted to have, you know, air quotes, normal kids. And sometimes I was mad and angry and frustrated. And sometimes I behaved very irresponsibly because I wanted a normal family, wanted to do normal things, wanted to just be able to take the kids and go to Burger King at night, go to the movies, things that, you know, all of our friends and many of our friends

Starting point is 01:04:23 are doing. And then I realized that, and I tried teaching this to the kids, you know, we're all different. We're all special. You know, Megan and Patrick, people may look at the two of them and I tell them, I said, yes, people can look at you and realize you're different. But look, it's these differences in life that make us so special. You know, we talk about, you know, obviously racial diversity and sexual orientation, whatever it may be, that's part of the richness, the fabric of life. But it took me a while, even as a parent

Starting point is 01:04:54 of actually three special needs kids, to realize that that's a gift in itself and it adds to the diversity in life. I'll tell you, so we talked about 2002, how that was a really tough year. Right after that beach trip, after the kids were diagnosed, I thought, my God, Megan's only going to live a few months. What do we do? And Eileen said, here's what we're going to do. We're going to send her to kindergarten because that's what kids do when they're five years old.

Starting point is 01:05:21 And I pushed back and then finally said, well, okay, let's see. So we called the local school. We had just moved to Princeton. Said, well, okay, let's see. So we called the local school. We had just moved to Princeton and said, hi, we're the Crowleys. We're here and got to register our daughter, Megan, for kindergarten. And oh, by the way, she's got this little issue you should probably know about. So they're like, okay. So they came and they visited the principal, the child study team. They met Megan and they came back. The principal called me a day later, said, John, great young lady. I just don't think our school, our public school is equipped for Megan. We've never had a kid on a ventilator with a nurse and in a wheelchair, especially a kid. I didn't Bob, I said, I really think that she thrives around being with kids, with people. And I don't know how long she's going to live. I hope a long time, but I don't know.

Starting point is 01:06:12 Would you please give it a shot? And he said, okay. Thought about it. Called me back, said, okay, Megan can come to kindergarten. But John, would you do me a favor? Would you come in and talk to all the parents of the incoming kindergartners? Dispel any myths, rumors, whatever. So I did that, came in, told them what Pompe disease is, told them you kids can't catch it. And everybody kind of looked at me and shrugged and kind of half smiled.

Starting point is 01:06:35 So I figured, okay, I bored them, but I did my job. So Megan started kindergarten. Kindergarten year was great for Megan. I mean, she loved it. She was the gym teacher, made up special routines for her in wheelchairs. She was going to the birthday parties. In the middle of that kindergarten year, she started getting that medicine, such that by the second half of kindergarten, she was so much stronger. So then you go to kindergarten graduation. We get there, and these kids, they get the little hats and diplomas, and it's really cute.

Starting point is 01:07:04 It's fun for any parent and special for any little kid. And then Megan was called to get hers and she got a lot of extra applause. And I was really proud. And then the principal came over to me and said, John, can I talk to you? I said, sure. He goes, you know, Megan had a great year. You were right. I said, yes, thank you so much.

Starting point is 01:07:21 What you did was remarkable. And it really was. He said, but I want to share something with you. He said, right after you gave that talk eight months ago, he said, I got a lot of phone calls and letters and emails from those parents. And the message was all the same. And it was basically, look, I beautiful young lady, we feel so sorry for her, but boy, kindergarten is such an important year. And my son or my daughter just won't be able to learn in that environment. Could you please not put my child in that girl's class? And I'm looking at him and I'm thinking, first of all, you know,

Starting point is 01:07:58 your feelings are hurt. And then you feel sorry for your kid that somebody would think that of them. And then he looks at me, he says, John, and I tell you this for a kid that somebody would think that of them. And then he looks at me and says, John, and I tell you this for a reason. He said, in the last few weeks, I've gotten an awful lot of letters and calls and emails. And now I'm thinking, how's he going to tell me that she can't go to first grade here? And he said, the message is all consistent. It's all the same. And it's, you know, Dr. Ginsburg, look, we know it's difficult and this is hard to ask,

Starting point is 01:08:37 but our son or our daughter learned so much and had such a great time with Megan in kindergarten. If there's any way that they can be in her first grade class, we'd owe you the world. And I thought, and then, you know, you get emotional thinking about it. And then I thought about, you know, Megan was just trying to be a normal kindergartner and she didn't have to teach those kids. What I found is first day kids asked, came up and said, you know, kind of looked at her funny. So what's wrong with you? And she said, oh, I have a disease. My legs and arms don't work, but my mind does. And they'd look, they'd shrug their shoulders, say, okay, you want to go play a game? Kids get over it in like 30 seconds. The parents were the ones who had the problem. So think about it. What ended up happening

Starting point is 01:09:13 was Megan, without ever knowing it, by her example and by just being a kid, taught those big people a really important lesson. And I think it was a real lesson about the importance of diversity and what people with special needs and physical disabilities, whatever the challenge in life physically or medically may be, can bring such a richness to the life of others. And for me as a parent, that was a real lesson that, you know what, little people can teach us big people an awful lot if we just listen. So maybe it is true that everything you needed to learn in life, you needed to learn in kindergarten. I was at the bad table a lot in kindergarten. Well, actually, you know, I got,

Starting point is 01:09:54 I got in a fight and I had to write a letter, which was apologizing for punching some other kid in the privates. My mom kept this letter and I was put at the bad table and then I didn't do anything bad, but the teacher forgot it was the bad table. So I just sat there all year. So you can say psychoanalyze that who knows where that has led. Yeah. This explains a lot. It clears up a lot for a lot of listeners. It was Dennis and myself were the two kids isolated at the bad table. The teacher forgot it was the bad table, but I wanted to ask you about the challenge perhaps of trying to help kids with rare diseases. And I ask because here we are sitting in Silicon Valley, San Francisco right now. And the first thing many

Starting point is 01:10:37 entrepreneurs do is, or one of the first things they think about their total addressable market for a given product or service. How does one create a company that is economically viable when trying to develop drugs or treatments for rare diseases? Is it a matter of having a large portfolio of different diseases? How does that work? Sure. So there are 7,000 known rare diseases that together just in the United States affect about 30 million people. So individually, by definition, rare taken together, they're actually more prevalent than all HIV and all cancers combined. The challenge, of course, is they're all unique and they all need their own unique medicines.

Starting point is 01:11:22 So what we typically do is we'll begin with, okay, is it a rare disease? If it is, how rare is it? When we first got into this, it used to be if a disease was below 5,000 or 10,000 prevalence, it was just too small. There was no economic model to sustain it. It's now come down though, I think with the advancements in technology, with regulatory science, just beginning to understand faster paths to approve these medicines, that now is coming down to probably around 500 or 1000. You have a disease with call it 500 or 1000 or more patients, you can build an economic model to support that. So for us, when we look at, you know, will we work in a rare disease?

Starting point is 01:12:09 It's, is it devastating? Do we have a technology that can apply? Can that technology make a meaningful difference for these patients? And the last thing we look at is, and how many patients have the disease? So with that model, you can get to many of these diseases, not all. We can't figure out yet, what do you do with these rare diseases that affect 5, 10, 100 patients? There, NIH, other areas could fill in the gap perhaps, but we can make a big dent in it. What keeps you going at this point? What are your main drivers?

Starting point is 01:12:51 So it's not a lot different than it was 10 or 20 years ago. So in business, you know, now that we've got amicus and the whole notion there is that we were going to make medicines for rare diseases, devastating disorders. How did you choose the name? So amicus in Latin, of course, means friend. We wanted the company to be the most patient-centered biotech company in the universe. we thought friend biotechnologies just sounded a little too cute. But if you, if you Latin it up a little bit, all of a sudden amicus, it's got some weight,

Starting point is 01:13:30 some gravitas. It's very highbrow. But yeah, yeah, yeah, yeah. It's very sophisticated. But if you look at it, it just means friend.

Starting point is 01:13:37 Got it. I took you off your train of thought though. Not at all. And you're, you're just describing, let me try to rewind my brain here. You think about, you know, you ask what keeps me going and. Right.

Starting point is 01:13:47 And you said it hasn't changed much. Hasn't changed much. So for me, it was a focus on, you know, how can you as an entrepreneur, because I'm not a scientist, I've learned a lot of science over the years. Years ago, hired tutors at night to teach me science. So in being immersed in the field, you have to learn it. So for me, it's how can you use the vehicle of entrepreneurship to drive medicine? And I've always believed if you make great medicines, push science as far and as fast as you can, you'll figure the business model out. You'll make great value. You look at the great biotech companies today, the Genentechs out here, the Amgens, Genzymes, they all started the same way. They started with a couple of scientists, a couple of venture capitalists, and some entrepreneurs. Every great biotech company, you can't point to one that was a spin out or a bunch of mergers. They started that way. And that's what I've tried to do. And that's what we're trying to do at Amicus now. One difference is early in my career with the first company at Novazym, I thought it was a

Starting point is 01:14:50 sprint. And in some respects it was. Now that the kids have a medicine, even though it's not a cure and not, I don't think the best, most effective treatment, it's now enabled me to change my view, Tim, that it's a marathon. So with that, yes, we can move incredibly fast, but we can look for the best science and push it for Pompe disease or for any disease that we're looking at. And if we do that, we can do some and have done some really great things. How and when did the military reenter the picture? Yeah, September 11th. After 9-11, I thought, you know, maybe I have some skills and certainly have a lot of passion and two hands that I can contribute.

Starting point is 01:15:34 So went through the whole process and was commissioned an officer in the Navy Reserve a couple years after September 11th. Actually was sworn into the Navy by my Naval Academy roommate, Ed Deviney, who was a Navy commander at the time. It just so happened, I didn't realize it, but they told me the office after I went through the two-year application process and because I was becoming an intelligence officer,

Starting point is 01:15:59 a year-long background check. So I miraculously passed the background check and they gave me all the top secret and other clearances. And then I got this letter saying, report on such and such date for your swearing in. I called the officer in charge. I said, hey, would it be okay if Commander Devaney, now he's pretty high ranking in the Navy at this point, was there to swear me in? And this young officer said, well, yeah, of course. Gave me the address some street, lower Manhattan. I didn't realize it was a Navy Reserve recruiting office overlooking the World Trade Center site.

Starting point is 01:16:31 Wow. And that was pretty emotional. Now, I'll try to tread carefully here. I don't want to get in territory that you can't talk about, but you've had experiences with elite units. Would that be a fair phrase to put it, a fair way to put it? I'm wondering what you think the characteristics are, because if we look back to, say, baseball and so on, you're like, well, you know, I was five foot six, 150 pounds, I wasn't the super athlete. What are the characteristics do you think that have made you successful in that world as well and capable? You know, I was fortunate in the military. In the 11 years I spent in the Navy Reserve, Tim, as an intelligence officer, I was assigned for most of that time to the Joint Special Operations Commander, JSOC. So I got to work with some of the most elite units in our military. And

Starting point is 01:17:23 you know, you talk about serving in the company of heroes. I mean, these men and women, just remarkable. And I was fortunate enough to have coworkers at Amicus as we started that. And then even as a public company, there was a time I was told I was the only public company CEO who was an active duty reservist in the country. I served three periods of active duty in addition to the reserve duty, including a deployment to Afghanistan. There I served as a deputy chief of intelligence for a counterterror task force. So I got to put a very small dent in the universe in terms of things that were important to me to contribute to. And one thing, you know, what carries over from life, from business to the military, for me, certainly in biotech, you've

Starting point is 01:18:11 got to be persistent. It's that resiliency that, you know, in biotech, again, almost everything we try doesn't work. And you've got to have the stomach for that. You've got to have that sense of this has to work. In biotech, for me, it certainly had to work because our kids' lives depended on it. That was something anybody who's been in the military knows. And especially when you're deployed, it has to work. You cannot fail, not just because the mission is so important, but because, you know, you've pledged your lives to the people around you. And that is a very, very sacred commitment and oath and something that it during the course of war, wartime. And the people who I served with, what they sacrificed, many of whom lost their lives, is something I will certainly never forget and was an honor for me. could be in the civilian sphere in business or elsewhere, but when you are feeling

Starting point is 01:19:26 uncertain of what to do next, or perhaps are overwhelmed in some way, a lot of inputs or otherwise, what's your process for figuring out what to do? I try to think about, okay, what's the situation when, and what are my options? So take it to business. When we started Novozyme, when I started Amicus, I didn't build the business plan from kind of the bottoms up. What I've always started with is, you know, what's the vision? What do we want to look like in five years, in 10 years? And work backwards from there. So if you set the

Starting point is 01:20:05 vision, then think about, okay, big vision, what are the barriers to get there? And for me early on in Novozyme, for instance, there are a lot. It was money, it was recruiting talent, it was facilities, all of that. And just slowly think about and process, how do I break down these barriers? So now you can take that from a big venture, like, you know, building a company from scratch all the way into a situation in a combat zone and what you're trained for. Okay. This is the objective and things will invariably go wrong in the fog of war. If, and when they go wrong, what are my options and what's the optimal path through that? What books have you, besides your own, gifted to other people, book or books?

Starting point is 01:20:54 I'm a big fan of history, Tim. American history, revolutionary history, living now for almost 20 years in Princeton, surrounded by revolutionary history. Even as a kid, I was. So there's a great book by an author named Benson Bobrick called Angel in the Whirlwind. And it's a history of the American Revolution. Obviously, countless histories of the American Revolution have been written. This one's pretty special in that great storyteller. There is a great hero in the

Starting point is 01:21:27 book. You want to guess who the hero of the American Revolution is? It's not a trick question. I don't even want to, I'm afraid to embarrass myself. George Washington. There we go. Okay. So George, easy answer. I was going to go for the layup, but I was like, I might flub it. And he picks a villain and it's Benedict Arnold. Now, he tells the whole story in very rich detail about the American Revolution, very character-centric.

Starting point is 01:21:51 And you've got to realize what they did, you know, and it's told in that book, is just so extraordinary. And it's never happened before or since in the history of the world of people coming together for that cause. And within the American Revolution, realizing, you know, they fought for this great ideal, lots of sacrifice, you know, they mutually pledged their lives, their fortune, their sacred honor. Every single person who signed the Declaration of Independence died peacefully in their own bed. Where else has that happened in the history of the world? So great lessons in life. I think it's a great book. It's a great way to learn history.

Starting point is 01:22:32 Who are some underrated or lesser known leaders you think are worth, who inspire you or are worth studying? You know, we talked about the importance of persistence and resilience. You can go back to the founding of the biotech industry only goes back 41 years, 1976. Isn't that crazy? And it was founded here in San Francisco in the Bay area was a young venture capitalistic Kleiner Perkins, Bob Swanson, he was looking at ideas, came across some papers written by a University of California at San Francisco UCSF professor named Herb Boyer. And the papers talked about protein engineering and DNA sequencing and expression of proteins in animal-based cells and maybe someday making medicines out of this. So Swanson took a drive up, knocked

Starting point is 01:23:26 on his door, started asking questions, started putting stuff on a board, literally went across the street to a bar, started putting it together on a cocktail napkin. And think about it. So you talk about in building business, the importance of vision and risk taking all of that. But think of what those guys did. Not only did they have to take a chance on a technology with all those challenges, they had to start a company. Okay. They had to start an industry that didn't even yet exist. Sell it to the partners at Kleiner Perkins.

Starting point is 01:23:55 Boyer had to leave the academic world, but they did that. And think of, you know, what would the world look like? What would our industry at least look like? Biotech without Genentech. It would be very different. I've never, biotech, without Genentech? It would be very different. I've never visited Genentech, but is it true? You've got to go. I heard a story, and maybe you can confirm or reject this, that when they were expanding or building the headquarters and expanding the facilities, there was a donut shop and the donut shop would not sell its real estate.

Starting point is 01:24:27 So they built their campus or their buildings around the donut shop. Maybe urban legend, but I hear that. I've been to Genentech. I've not. You've never seen the donut shop. Never been to the donut store. Well, I guess that would be a good one to tell Tim Ferriss so he'd embarrass himself on a podcast because if I haven't been there, clearly I can't know that it is an outright lie.

Starting point is 01:24:47 But, you know, you look like people, you know, outside of our industry and probably most in biotech have never heard of Bob Swanson and Herb Boyer. Swanson ended up dying in the 90s of a brain tumor. So, but, you know, the vision that they had, the risk taking, those are real heroes. Another one is you go back to probably the earliest biotech entrepreneur who never even knew he was an entrepreneur, is Jonas Salk. So polio was the scourge of the society from a healthcare standpoint in the 40s, 50s, obviously, FDR affected by it. A young researcher at the University of pittsburgh medical center named jonas sock had an idea that he could develop a vaccine for it got some funding form

Starting point is 01:25:33 from the infantile paralysis foundation what we now call the march of dimes developing a vaccine worked on it tirelessly his whole lab well funded-funded, put it together, tested it. I mean, tested it on himself, on his coworkers, his family, did a large series of experiments and it didn't work. And there was a great interview years later that I've read. It was a magazine, ironically called Wisdom. And they talked to Dr. Salk about that because of course he then went on to invent the vaccine that saved countless lives and effectively eradicated polio from the world. They asked him though, after years of effort and a big experiment that failed, what did you do? And he said, I thought about it. I thought about how I'm going to tell

Starting point is 01:26:23 my family, my coworkers, the people that put the money into this, that it didn't work. So I walked, I went to a park, he said, and I thought about what I was going to say. And I read it in this article, Tim, he said, and I looked out in the park and I saw dozens of children at play. And I realized without a vaccine, many of them would develop polio, would suffer, and may die. And he said, at that moment, I realized the enormity of my work, and I went back to it with a renewed vigor. And I've always tried to think about that. What if Salk didn't go back to try it again? And that's when I've had plenty of failures in biotech, plenty of drugs that haven't worked, studies that were delayed, every setback you could imagine. And I try to think about that. If you were to develop a training curriculum for civilians, you could certainly have elements borrowed from any sphere. But if you wanted to develop a course or training of some type to make people more resilient, how would you go about doing that? I've thought a lot about this because

Starting point is 01:27:32 I've wanted to, over time, make myself more resilient and thought of all sorts of different voluntary suffering, whether it's excruciating physical training, cold exposure, fasting, exercises of those types. But is there, what might you add to that? Or how would you go about it? Because I think that people listening would, everyone who's listening to this episode probably wants to become more resilient and to be the one who perseveres. How can you develop that? So look, the old adage is, you know, trial adversity builds character. And I think that is true for most people. The trouble is it's very hard to create artificial adversity. Now we can do it, and certainly in your books and your lectures,

Starting point is 01:28:27 you talk about different ways that you've tried to do it, that you've taught others to do it. You could do it through rigorous physical training. You could do it through a discipline. You can do it through a focused more on certain activities in life that require sacrifice. And that's all true, and I think that's all an element of it. But what I've come to realize is there is no way to substitute pure experience. Now,

Starting point is 01:28:52 we will all go through adversity in life. So you don't have to worry about, oh my God, I'm never going to get the experience of adversity. Believe me, you will, sometimes more than you ever thought you would. and the thing that makes it better is to realize take that step back and think about what matters in life and to me it comes down to time we uh in gita's book the cure about our family in the epilogue to that book after having spent two years writing it and spending a lot of time with our family and the epilogue to that book, after having spent two years writing it and spending a lot of time with our family and researchers, a lot of time with our kids, she wrote something, Tim. She wrote that at the end of the day, we're all just searching for time,

Starting point is 01:29:37 time with the people we love. And we treasure it, we hold on to it, and we hope and pray for another, even as we continue into the unknown and the unknowable that we all call life. And that's it. To me, it's all about time. What did we do with our medicine? Why did we do that? We did it to buy time, time in life. And so far, Megan and Patrick now have lived 13 years longer than they otherwise would have. Now it's given them time, given us time together. It's given them better quality of life and quality of life, of course, is so important. But again, it's given me as an entrepreneur and our scientists time to come up with maybe the next best medicine and new technologies. So that cycle of innovation, that virtuous circle of healing

Starting point is 01:30:23 that can happen with great medicines gives us time. Somebody, I want to say it was Anna Quinlan once wrote in one of her books that life is a fatal illness. Life is a fatal illness? Life is a fatal illness. And I think, you know, I think about that. What if you went to the doctor tomorrow, God forbid. And he said, I've got your test results back and you're only going to live six more months. Which could happen, right? It could happen. It happens every day to people.

Starting point is 01:30:53 So that could happen. So what do you do? You forget about work. You focus on family, love. All of a sudden life becomes very sharply in focus. What if you went to that doctor and he said, look, you've got some illness. You've only got five years to live. Still very serious. very sharply in focus. What if you went to that doctor and he said, look, you've got some illness,

Starting point is 01:31:10 you've only got five years to live. Still very serious. Life comes pretty sharply in focus. You may not walk away from your job that day, but take some time, maybe start to think about therapies. What if you went to the doc and you're 30 years old and had your physical and the doc goes through everything, blood work, everything looks great. You're following the Tim Ferriss regimen, your great physical shape. But I have to share this with you. You're going to die. Now somebody, they turned white. Oh my God. Yes. And I'm virtually certain. I can't predict exactly when, but on average, if you want time, you want to know, I think you've got 49 years left. That's it. You're going to live to be 80, right? 79.9, I think now is the average life expectancy. So we're, you know, we're all going to pass away from this earth. So what do you leave? And what did you do in the meantime? But also what are you fighting for? And you're fighting for time.

Starting point is 01:32:02 And what do you do with that time? You are probably a perfect person to ask the following. It's something that I've grappled with and continue to grapple with. And that is the notion that you should live every day like it's your last. But in practice, that's very difficult to do. It would seem because if it's your last day or your last month, which it could be, you never know. I mean, you take a wrong turn or not the wrong turn. You just take a left turn instead of a right turn. You get hit by a bus. Anything could happen. If you do have years ahead of you, then there will be periods of postponing certain gratifications, certain things you enjoy. There will be long-term planning. How do you balance or think about those two for yourself? Because I'll read, for instance, I'll read a bunch of Stoicism

Starting point is 01:32:51 and then I'll go in one direction and I'll read a bunch of, who knows, whether it's Rumi or Zen Buddhist thinking or just, you know, maybe it's a non-philosopher, but nonetheless, someone who has a strong position and perspective on how to treat time. And I haven't resolved it for myself. How do you think about it if you do think about it? It is the one thing that I struggle with most. It is finding that balance in life.

Starting point is 01:33:20 And many times in life, I've gotten it wrong. And I probably still don't do it very well. So, look, you've got to work hard. Hard work is the price of success, but you've got to find those times to step back. And if you, even if it can't be the quantity of time that you want with friends, with family, treasure the moments that you have. For me, the toughest decision years ago in starting that first biotech at Novozyme was realizing that I was going to be every Monday morning flying to Oklahoma City and flying around the world and that my kids may live a very short time and I was going to miss most all of it. But Eileen and I, she said, look, you go out and search for the cure. I'll take care of the kids. So we had a great division of labor.

Starting point is 01:34:07 But I still felt badly for the kids. I felt badly for myself that I was going to miss that time. That was a conscious decision we made. And it was a bet that paid off for us. But I still struggle with that, Tim, you know, finding the right balance. When we share a brief story with you, when we went public, Amicus went public in May of 2007. We'd only been around for a couple of years. It was an IPO with a lot of fanfare that people were throwing money at us.

Starting point is 01:34:32 You know, you go out in these investment banks, you do this roadshow. Sounds pretty sexy. It's grueling. You know, it's like, you know, Groundhog's Day, 80 of the same meetings around the world. Now, the cool thing is the banks will get you a Gulfstream 5 or whatever to fly around in. I'd never been in a private plane, although it was pretty cool. So you go through, we had a great IPO, eight times oversubscribed. Wall Street on now the second company, Amicus, gave us a $300 million pre-money valuation.

Starting point is 01:35:00 We raised $75 million. We go to New York. We close the deal. Lots of back slapping at the board level. The next morning we're there. We, you know, we close the stock exchange. I'm on CNBC. We're being interviewed. For an entrepreneur, that's about the height of success. You feel pretty darn good about yourself. People couldn't, what, six years, seven years before that, I was knocking on doors trying to raise money, just a little bit to pay the rent for our company. Now people were begging me to take tens of millions of dollars. So you feel pretty good. I had the company in, we did a big celebration, a party, but I was pretty tired. It was two weeks on the road, pretty grueling.

Starting point is 01:35:38 So I went home that night and I went in like, you know, most moms and dads who travel, you go in, check on the kids. So I went in, the moms and dads who travel. You go in, check on the kids. So I went in. The boys sleep pretty soundly. So John and Patrick were sleeping, gave them a kiss. They didn't stir. I went into my daughter Megan's room.

Starting point is 01:35:54 She was 10 years old at the time. You know, still hooked up to a ventilator, laying in bed, sleeping quietly. She's a pretty light sleeper. So I gave her a kiss and her eyes opened up. And she said, daddy. I said, Megan. She threw her arms open. Give me a hug. I gave her a kiss and her eyes opened up. And she said, Daddy, I said, Megan, she threw her arms open. Give me a hug. And I gave her a hug. And she said, I missed you. I said, Megan,

Starting point is 01:36:11 I missed you too. She said, Daddy, how was your big business trip? I said, well, and I had my suit on and all of that standing above her. And I said, well, Megan, I said, the trip was good. You'd be pretty proud of the old man. And she said, I know, daddy, I saw you on TV today. I said, well, really? I said, so how'd I look? And she said, well, daddy, you looked really, really, now I'm thinking, I don't know, powerful or what? She said, daddy, you looked really, really kind of short. And so I'm standing there. Now there's this awkward silence. Now, Megan is also the master at how to damn with faint praise.

Starting point is 01:36:51 So she looks at me. She goes, but but daddy had this yellow power tie on. She goes, but daddy, that tie looks really good on on TV, on camera. So I'm like, oh, OK, thanks, Megs. And then she said to me, though, she says, Dad. She's giving you a criticism sandwich. Oh, yes, always, all day long. And she said to me, she said, are you going to be here in the morning?

Starting point is 01:37:12 I said, yeah, I'll be here. She said, would you take me to school? I said, yes, honey, I'll take you to school. And she said, good night, I love you. I said, good night, I love you. And I walked out, and I realized in that moment, Tim, the humility that has to come with any degree of success. Success is pretty fleeting, of course. that I was on TV, that we flew around on a private plane. What she cared about was that her dad was gone for two weeks on a really long business trip and that she missed him and that he was home and was going to take her to school. And I think in that moment, I realized, you know what,

Starting point is 01:37:59 that's why we're doing this for those moments. You mentioned earlier your criteria for selecting a disease to potentially develop a treatment for. I may get the exact word wrong, but it was something along the lines of magnitude of impact or significant. Sure. Can we have a meaningful impact on a disease? What I'd love to ask, because I think about this from even a philanthropic standpoint, or for anyone who's trying to give back, how do you think about doing the greatest good for the greatest number of people? If you have, say, an impact of zero to 10, I know this might come out a little unformed because no, no, I hear where you're going, but go, go, go, go ahead. Is it,

Starting point is 01:38:49 is it better to go, you know, an inch wide and a mile deep or the opposite in a sense, right. And, and hit a large number of people. And I, I struggle with this because there are times when I want to, for instance, and I've done, I have taught classes in a number of places like Oakland, for instance, where you're hitting 10 or 20 students and you might be able to impact them very, very deeply. And then there are other people who say, well, if you look at effective altruism, what you really should do is just take this amount of money and invest it in malaria nets that are going to go to Africa because dollar for dollar, you're going to save the greatest number of lives doing that. And I struggle with, and it certainly doesn't have to be a false dichotomy, right? It's not, doesn't have to necessarily be either or, but we only have so much time and energy to allocate. How do you think

Starting point is 01:39:43 about that? So, you know, again, so you take these 7,000 rare diseases, I mean, the essence of your question is why rare diseases and why not put the money into much more broadly prevalent? No, it's not even that, because this is a purely selfish question, where I'm trying to understand how you think about, I'd like to get advice, quite frankly, as to how I should use my own time.

Starting point is 01:40:04 I'm not going to be necessarily, well, I'm almost certainly not going to be developing any biotech companies. But I think that many people listening to this want to do good in the world. And they have, there are many compelling arguments for seemingly incompatible approaches, whether it's say doing, going the effective altruism route or people who say, you know, should you, let's focus on helping the, let's say the lowest decile of performers in a school versus the top decile of performers in say an economically disadvantaged location. How, because you've, you've done a lot of work with the Make-A-Wish Foundation, which is a massive understatement, obviously, but for those people listening in for me, how would you encourage them to think about giving back or

Starting point is 01:40:59 altruism or creating a for-profit company that does good for that matter i know that's a gigantic multi-faceted question but look i i'm a big believer in going deep don't go wide have the impact even if it's on a single individual because think about the ripple effects of meaningfully changing somebody's life even one individual tim so you mentioned the make-a-wish foundation such a great example so make-a-wish back in 1980 there's a little boy named chris mentioned the Make-A-Wish Foundation. It's actually a great example. So Make-A-Wish back in 1980, there's a little boy named Chris Gracious, a seven-year-old. Chris had advanced leukemia, was in Phoenix, Arizona, receiving some treatments. Chris was going to die. And some nurses, family members, and then police officers heard about it, that Chris always wanted to be a cop when he grew up.

Starting point is 01:41:46 So these cops heard about it. They said, well, let's help this kid be a cop. They actually made him a little uniform and got the doctor's permission to take him out of the hospital for the day. And they made him a cop. They deputized him with a judge, put the uniform on him. They took him up in the police helicopter. I mean, just a true cop police officer experience. And he went back to the hospital after that day. It was on the local news in Phoenix. It was great. And two days later,

Starting point is 01:42:10 Chris Gracious died. He was actually flown back to Illinois, where his family was from, was given a police officer funeral. That made the news as well. About a month or two later, his mom, Linda, got together to thank those police officers who made it happen. They started to think about, you know, God, he didn't live long and how tragic it was, but boy, he sure loved that day and that experience. And they were so happy and they realized it made their lives better. The people who gave him that gift, that wish. And then they said, well, why stop? Maybe we can do this for other kids. And that's how the Make-A-Wish Foundation came to be. Because a couple of people just wanted to help one sick little boy. Now fast forward 36, 37 years, Make-A-Wish Foundation has granted over a quarter of a million wishes to children that have fundamentally changed their lives, brought joy to people with life-threatening illnesses and the communities that's affected.

Starting point is 01:43:12 So you can do a lot of good by touching one life. In the rare diseases, what's so rewarding about working here is that not only are you working devastating diseases where yes, you can save people's lives, you can potentially even one day cure them. That in itself is meaningful. Beyond that, I really believe that by understanding human genetic medicine, understanding what's causing these diseases and how they may be treated, we're going to unlock

Starting point is 01:43:42 the secrets to treat much more prevalent disorders. You look at a disease like a Parkinson's and Alzheimer's, many of the cancers, they're really just human genetic diseases that we don't completely yet understand. So one person with one, you know, think about it. When we started out, we wanted to help our two children. With a lot of people's help, we were able to affect everybody living with Pompe disease. Now at Amicus, we're working on multiple rare diseases. Hopefully we'll be able to develop treatments that'll help people with all of those rare diseases. And in the meantime, my big vision for the company is

Starting point is 01:44:17 I wanna be at the forefront of human genetic medicine, which I believe in the years ahead means that we're gonna be at the forefront of human health. That's pretty exciting. It is exciting. And we were chatting before we hit record, and you mentioned that it's entirely, these are my words, not yours, but that it's entirely feasible that we might find ourselves living to, say, 200, something like that. And there are certainly a lot of people here in Silicon Valley who are pursuing that with all of their energy and resources.

Starting point is 01:44:57 What are some of the breakthroughs or potential breakthroughs, things you think have, say, 50% or higher likelihood of happening that most excite you in the next 10 to 20 years? Yeah, I really think, Tim, that we are on the cusp of a golden age of medicine. So we've come a long way. In the last century, we've almost doubled the life expectancy here in the United States. And we did that with, you that with better hygiene, better nutrition. But the greatest single contributor to expanded life expectancy is medicines.

Starting point is 01:45:32 Medicines that are extending and enhancing life. So we've come a long way. The average life expectancy is almost 80 years now. Why are we programmed to die now at 80 when we were programmed to die at 47 a century ago? We're not. We intervened. What we've effectively done is begun to change the slope of human evolution. We now have tools that not only can we provide drugs that can cure an infection or drugs that might prevent or treat heart disease or rare diseases or cancers

Starting point is 01:46:05 we're now to the point where you look at the gene therapies that are being developed you look at a new technology of gene editing actually being able to go in and manipulate human the human genome in an individual and fundamentally change their health course and do so very inexpensively in some cases in fact and do so in aly in some cases. that 10, 20 years from now, we can alleviate an enormous amount of human suffering. Now, can we unlock the secrets of aging? Is the aging process itself a disease? In many ways, it really is more. What happens in aging is more and more

Starting point is 01:46:58 of these little mistakes in our DNA happen. And over time, they accumulate. And over time, they lead to cellular inefficiencies, they lead to a lot of misfolded proteins in our body. What if we were able to change that course and do so where you have good quality of life? Are we getting to this concept of a singularity of man and machine becoming as one? Obviously, many books and some movies written about this, and it can be scary, but to me, it's actually unbelievably exciting. You know, if we can do it for the right reasons in the right way to extend and enhance human life, I mean, that's, that's

Starting point is 01:47:37 what it's all about. Kind of gets us back to time, time and quality of life. And that's, that's pretty darned exciting. On the quality of life front and just a few more questions, but on the quality of life front, what is, what does a, I could pick a single day of the week, but I, what does the, and I'm not in any rush at all. I just, I just want to be cognizant of your time that an ideal day, this is a weekday. So ostensibly there's some business to be done, but what is your schedule look like for that day? And what I'm very curious about is routines,

Starting point is 01:48:16 things that you do habitually. So I try to get up early, usually not early enough. I'll try to get up by six o'clock in the morning. And with that, I've always got a plan, things I'm gonna do, maybe I'll try to get up early, usually not early enough. I'll try to get up by six o'clock in the morning. And with that, I've always got a plan, things I'm gonna do, you know, maybe I'll try to exercise or do that. I don't always have a set plan every morning. What I find inevitably is that I'm rushing out the door,

Starting point is 01:48:36 whether I get up at five, six, or seven o'clock. So it's a little bit different now too with the kids, John and Megan in college and Patrick, a senior in high school. I've got a little bit more time in the morning. It used to be just a flurry of activity, getting kids ready, nurses coming and going. In between it all, we decided it would be great to get two Jack Russell puppies because we didn't have enough activity in the house. I'd say a typical day though for me, Tim, is, you know, wake up at six, shower, get ready, catch up maybe 30 minutes on the elliptical,

Starting point is 01:49:08 read the headlines of the news, what happened the night before. I've got now seven offices in Europe, so catch up on the emails coming in from Europe. You do this on the elliptical? I'll do it on the elliptical. Do you use a phone, iPad? What are you using? I use my iPad. Prop it up and just flip through, you know, download the wall street journal, look at the journal, look at the New York times, flip through emails, get through that and then get ready and head off to work. What time is that roughly? I'll try to leave the house around 7.15 or so. So 7.15, try to beat the school traffic of all the schools in Princeton. I'll do that.

Starting point is 01:49:47 Get in the office. Try to have about an hour of downtime. I try to not run the company by email. I think it's too easy to get in and say, okay, what emails hit since I got off my elliptical? Let me respond to those. I try really hard to limit the email time. Set a block in the morning on the elliptical, a little bit more when I get in the office, and then spend the time with the team, the people. We try really hard in our company with that patient-centric view to bring patients in

Starting point is 01:50:16 living with the disease. If you come to our company, you'll see we've got portraits and pictures and paintings of all people living with rare diseases and their stories around. We try to bring them in and just be absorbed in that. Now, we're also a public company with a billion dollar market cap and 300 employees. So invariably there's the details and what I'll call the grind of the business that you've got to get through. And there's the invariable demands on your time. I do try and I don't succeed more than 50% of the time, but I try and it's on my calendar every day, one hour of thinking time. When is that usually scheduled? Usually early afternoon.

Starting point is 01:50:55 So post lunch? Post lunch, one, two o'clock. It'll have to vary by certain other commitments, but it's always on there. And I do try to take it as a time to step back and to think, where are we? What have I learned halfway through my day? What do I need to complete by the end of the day? And what happened unexpectedly that I have to pivot around? What I also find though is about 50% of the time,

Starting point is 01:51:19 there is such demands on my time that I've got to use it for something else. There's, John, you got to get on the call with this clinical site or John, these investors need to talk to you. Do you have time? And that's okay because, you know, rather than every day pivoting things around, at least I know I've always got a little bit of flexibility built in. So if the kids are home, I try to get home at a decent hour, spend time with them. I get a more intense workout in when I go home, either go to CrossFit or do something in our basement, try to do more of a kind of weightlifting workout, get out the frustration of the day. And what might that look

Starting point is 01:51:54 like specifically in your basement? What would a, what would a, a Crowley evening workout look like? If, uh, if I've got limited time, 30 minutes, push-ups, pull-ups, sit-ups, and dips. Lots of push-ups, pull-ups, sit-ups, and dips because you can fly through them. Great workout and it's hard to get hurt. If I've got more time, I'll build in some of the bench press, some of the shoulder press. I'll do kettlebell swings, those types of activities. Try to mimic a CrossFit workout. And if I can find the time, at least three days a week, I try to get out to CrossFit when I'm not hurting myself.

Starting point is 01:52:33 Just to increase your injury potential. I find as I get older, my strength is about the same as when I was young. My endurance is about the same. I'm much slower and I get hurt way, way more easily. So then a little bit of dinner, time with the family, wrap up a little email. Um, and the last thing I do before I go to bed every night, I pray. What do your typical, what are your typical meals? Do you have, do you have default breakfasts and lunches that you have? Uh, peanut butter, uh, I'm sorry, almond butter and bananas in the morning. If I can,

Starting point is 01:53:06 I'll take a frozen egg white and throw it in. And you blend that? No, no, no. They're either, either or. Either or. Yeah, no,

Starting point is 01:53:14 that would actually, it sounds like it'd be kind of gross. What do you do with the frozen, how do you eat the frozen egg white? You put it in a microwave.

Starting point is 01:53:20 Oh, all right, all right. Good God. I thought you were just gnawing on some ice cube of egg. It sounded terrible. I only eat things that are frozen, Tim. And then what does lunch look like?

Starting point is 01:53:32 Lunch, I try to eat light. You know, we try a salad, soup, something like that. My big meal is dinner. What is meal? And then what is dinner? So we try to eat healthy when we stay home. You know, The chicken, fish, steaks. Eileen's been trying some of these prepared meals, the plated, if we can with family, uh, kind of a, you know, uh, an effective growing up in a big half Italian family and the Irish side that loved the pasta too. Do you ever, have you ever struggled with, well, I'm sure everyone has at some point, but do you have trouble sleeping? Do you have any insomnia? Does your mind keep going? Yes.

Starting point is 01:54:27 What have you found to help with that if anything yeah I try to stop the email by 9 p.m. when and sometimes you can't but try to stop it by 9 p.m. now we do you know we've had operations in Asia as well so Asia United States Europe there really is no downtime anymore but I try to stop it and then I try not to use electronics after 10. You know, no TV, no iPad, no iPhone, try to read. For me, reading helps. And then as I said, I, you know, I don't meditate, but I pray. Do you have, is there a set prayer or a go-to prayer that you have, or is it different every night? I always start with the Hail Mary. So for, for me, it's the Hail Mary and the Our Father. So

Starting point is 01:55:13 having grown up in a Catholic family and many Catholic schools, um, that's, that's my, my prayer, my peace time. I, as I've gotten older though, I've, I've stopped praying for things. I don't mean material things, never that, but help me with this, help me with that, intervene. Sometimes, yes. Pray for others, yes. What I really try to pray for is what I guess I'd call, Tim, kind of peace, grace, strength, and thanks. And to me, that's always a nice way to try to fall asleep. What is grace to you?

Starting point is 01:55:54 I think it's the, you know, I always ask my kids. I said, I asked them, are you happy? Are you safe? Are you fulfilled? So to me, it's maybe a combination of all of that. Happy, safe, fulfilled. If you had a gigantic billboard and you could put a short message on it or image,

Starting point is 01:56:15 nothing commercial, to impart to millions of people, what would you put on that? It's bigger than you. It's bigger than you. John, it's always so fun to hang out. Tim, you're awesome. We could go for hours and hours.

Starting point is 01:56:31 This is our longest conversation without beer. Ever, ever. I know. It is absolutely the longest. And I think many more ahead. Is there anything, any request you'd like to make of my audience, a suggestion, a recommendation, parting thoughts or comments?

Starting point is 01:56:50 I think, you know, in the scope of, you know, healthcare, because it's the one thing we all deal with, always realize that you have got to be your greatest advocate. No matter how awesome your doctor is, how wonderful your healthcare system is, nobody's going to wake up thinking, how can I make this person better, healthier, safer, happier, whatever it may be. So that importance of being your own patient advocate is just so critically important. And one thing I would ask, my daughter Megan asked for this, she's just such a remarkable kid as my boys are too, But Megan is just a really special person. I've learned an awful lot from her. Many people have been touched, just a special human being. And I've asked if

Starting point is 01:57:31 she'd share more of her life perspectives with people because she lives, you know, most people would look at Megan and think, God, this poor little kid, this, you know, this pity on this young lady. And she doesn't feel that way. She feels so blessed and she's so happy and so inspiring and funny as, as you, as could be. Seems very good at busting your balls. She certainly does. Certainly does. Every day. She started a blog just last week. Great. So it's called High Heeled Wheels. High Heeled Wheels.

Starting point is 01:58:02 So take a look at it. She's a remarkable young lady. And to gain some of the insights from Megan, I find valuable and am just blessed to be able to share with others. High Heeled Wheels, the way we would think it to be spelled. That's exactly right. Okay, great. Megan loves high-heeled shoes, even though she's never walked a day in her life. And that says something about her. So thank you, Tim.

Starting point is 01:58:25 This is awesome. Absolutely. And so thank you, John, first and foremost. And to everybody listening, you can find links to everything we've talked about, including High Heeled Wheels in the show notes for this episode and every other episode at fourhourworkweek.com forward slash podcast.

Starting point is 01:58:43 John, we have to have more conversations and spend more time together. Yeah, for sure. Tim, I will cure a few more diseases. Then let's come back and talk. Absolutely. And,

Starting point is 01:58:52 uh, as always to everyone listening, thank you for tuning in and keep experimenting, work smart and play often. Hey guys, this is Tim again. Just a few more things before you take off. Number one, this is Five Bullet Friday. Do you want to get a short email from me?

Starting point is 01:59:16 Would you enjoy getting a short email from me every Friday that provides a little morsel of fun before the weekend? And Five Bullet Friday is a very short email where I share the coolest things I've found or that I've been pondering over the week. That could include favorite new albums that I've discovered. It could include gizmos and gadgets and all sorts of weird shit that I've somehow dug up

Starting point is 01:59:37 in the world of the esoteric as I do. It could include favorite articles that I've read and that I've shared with my close friends, for instance. And it's very short. It's just a little tiny bite of goodness before you head off for the weekend. So if you want to receive that, check it out. Just go to fourhourworkweek.com. That's fourhourworkweek.com all spelled out and just drop in your email and you will get the very next one. And if you sign up, I hope you enjoy it.

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The Tim Ferriss Show - #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously)

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The Tim Ferriss Show - #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously)

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