Please enjoy this transcript of my interview with John Crowley, chairman and CEO of Amicus Therapeutics. It was transcribed and therefore might contain a few typos. When interviews last 2+ hours, it’s difficult to catch some minor errors. Enjoy!
Listen to the interview here or by selecting any of the options below.
Tim Ferriss: Why hello, boys and girls, you frisky little squirrels. This is Tim Ferriss, welcome to another episode of The Tim Ferriss Show, and yes, I’ve a little bit of caffeine this morning, and I’m feeling great, thank you for asking. This show is about deconstructing world-class performers of all different types. That can range of 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. The guest today is, I would say, a combination of almost all of that – John Crowley.
You will have to listen to his story to believe it. 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. 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 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’s 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+ 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. 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, a startup conducting research on a new, experimental 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, Geeta 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 was 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 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. He is a veteran of the global war on terrorism with service in Afghanistan. He graduated with a B.S. in Foreign Service from Georgetown and earned a J.D. from the University of Notre Dame Law School and an MBA from Harvard.
He previously served for two years, 2014-2016, 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 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.
John Crowley: Tim, great to be here.
Tim Ferriss: It is so, great to see you.
John Crowley: Yes, my friend.
Tim Ferriss: Every time I see you, I think your shoulders have grown larger. Bursting out of –
John Crowley: At 49 years old, I assure you it’s an illusion now.
Tim Ferriss: You just have to start shopping at Gap Kids. 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. You were educating me about fast-roping drills and making my hands sweat. Could you please explain? I said, you know what? Actually pause. Let’s talk about this. Let me record. Can you re-tell what you were describing to me, please?
John Crowley: Yeah, and if you remember, this came up in the context of describing fears of heights. I said despite having served in the military and worked with some amazing people and done some things that I probably shouldn’t have ever been doing, at least at that age, we talked about fast-roping. So, with a fear of heights, I was being trained with a Navy intelligence officer working with a SEAL team, so, I had the Navy SEALs teaching me how to fast-rope. Okay, great. They 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. Then there’s a plank and there’s a real salty-looking seal, Chief Petty Officer, handing the rope.
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.”
Tim Ferriss: You’re untethered?
John Crowley: 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.
Tim Ferriss: And 40 feet, I mean, if you fall, and I’m sure people do fall.
John Crowley: Well, it’s a long way up.
Tim Ferriss: 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. [Inaudible] fall.
John Crowley: Oh sure, yeah.
Tim Ferriss: So, you do the 40 feet.
John Crowley: You do it once, then you do it three times. It’s 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.” So, then you climb up to 90 feet.
That’s a long way up. Now you’re looking at a plank and they’re just handing you a rope. I’m hesitating and I’m thinking, I can’t hesitate or it’s – this isn’t what you do in the special operations world, of course, and I don’t want this Chief Petty Officer SEAL getting all angry with me. So, he hands it to me, so, I’m thinking, I’ve got to come up with something to say to try to defer this, at least a few moments. So, I said, “Chief? Quick question.” I said, “Any difference between up here versus down there?” 90 feet versus 40 feet.
Of course, I meant difference in technique. I was just trying to make conversation at that point. 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.” He hands it to me and he goes, “Go!”
Tim Ferriss: Thanks, coach.
John Crowley: Yeah, thanks. And thankfully, of course, I survived. I had great teachers.
Tim Ferriss: Good God. I mean, we were discussing a number of things.
Everything is fine. It’s safe as long as you remain calm.
John Crowley: Like most things in life.
Tim Ferriss: That’s how a lot of dangerous things can be presented when we start talking about Man on a Wire, which is how this came up. You can look at my hands. I don’t know what it says about me. Maybe I’m bad at thermal regulations, but I’m just pouring sweat. I’m very sensitive to heights. That’s part of the reason I took up bouldering and belay rock climbing some time ago, to try to therapeutically fix that. I haven’t yet succeeded.
John Crowley: I was going to say, how did that work?
Tim Ferriss: 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. 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.
John Crowley: Sure, sure. Or that I wouldn’t answer if you did.
Tim Ferriss: 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?
John Crowley: Sure. I grew up in northern New Jersey. 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 right by the George Washington Bridge. From what I remember of the early years, it was pretty nice, fun. We lived in small, little garden apartments. 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 kind of like a commune, if you were, for the family.
Things were good, but there are those things in life that change you or have an impact. For me, it was in January 1975, when I woke up one morning and learned that my Dad who was a copy, my hero, had died on duty the night before. He was killed in a tragic car accident. It was Super Bowl Sunday. Life changes a lot. By that point, we very quickly moved in with my grandparents, who lived the next town over. We 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-4-year-old brother, I was 7, in the other bedroom, right after Dad died. Things change you.
I think it was surrounded by lots of love. 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. Those are things you never forget.
Tim Ferriss: I’m so, ashamed that I somehow didn’t know that. I feel like I should’ve known that and I didn’t. How is that, if it has, I can’t imagine that it hasn’t, affect the person you are today? How did that change you?
John Crowley: Obviously, you miss your Dad a lot. But I think it forces you to grow up really fast, Tim. For me, it really, I think, was two lessons. One, that a lot of people may rely on you in life. For me, it was my then-4-year-old brother. Even my Mom, in a way. She had to go to work. She went to work. She’d been a professional administrative assistant earlier in life, then was raising us.
Then she had to become a waitress in northern New Jersey. A lot of people I realized at an early age, may rely on me for whatever that may be. That was one really important lesson. No. 2 is it’s okay to rely on others. It’s okay to ask for help. We did, I did a lot. Those things change and you move on. [Inaudible] you realize you’ve got to be independent. 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.” That was one really big challenge really early on.
Tim Ferriss: 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 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. Does that sound correct?
John Crowley: Really mini.
Tim Ferriss: That’s how I think of you.
John Crowley: I never got past 5’6”.
Tim Ferriss: But what were you like at say 10 years of age? What were your strengths, weaknesses, or any defining behaviors, characteristics? Good student, bad student?
John Crowley: Yeah, I was a good student. I worked hard. I learned early on in life to study is a road to success. My grandfather didn’t finish the seventh grade. Even before my dad died, I would spend a lot of time with him. Have you ever been to Fort Lee, New Jersey, and you see those big apartment buildings that rise across the George Washington Bridge in New Jersey?
Tim Ferriss: Sure.
John Crowley: When I was a little kid, they weren’t there; that was an amusement park, Palisades Amusement Park. Once of the first buildings that went up, my grandfather was a superintendent. He was a handyman, he could fix anything. But my Mom was working and somebody had to watch me. I was, I don’t know, 4 or 5 years old.
I used to go to those apartment buildings with my Grandpa. He’d show up with his toolbox and I’d say, “Grandpa, I want a toolbox, too.” He said, “Oh, absolutely.” 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 fixing dishwashers or door jambs or whatever. I’d bang a hammer and try to help because boy, I said, “Grandpa, I want either do this or I want to be a cop like Dad.” What Grandpa did and I didn’t realize it until many years after, was over the course of that year, he would slowly take the tools out of the toolbox and put books in.
After I got bored with swinging a hammer and when I realized, even at 4 or 5 five years old, I wasn’t very good at swinging a hammer, I’d just start reading the books. I tried to be a good student. I think I was a pretty decent student. Again, a lot of good teachers along the way. I 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 it.
Tim Ferriss: What were your sports?
John Crowley: I played baseball and by high school, I wrestled as well. Sports that a guy who’s 5’6” and 155 pounds as an adult could play as a kid. Football I played. I think in fourth grade I went out and made the football team. I started out as a lineman. I was about average size maybe in fourth grade. Then everybody kept growing and I wasn’t growing quite as fast as everybody. So, by fifth, sixth grade I was a linebacker. 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 No. 2 in the nation. Freshman year, I’m going out for the football team. That lasted about five days. I realized I love football, but this is not a sport in which I should participate safely. No matter how calm I tried to be, I should not participate.
You’re looking at a decent student and mediocre athlete. I always tried to – friends always made fun of me. I always seemed to have the hair kind of parted and combed right.
Tim Ferriss: You still do.
John Crowley: Well, it’s funny. My daughter, Megan, pointed that out over Christmas. I don’t know – we were talking about something or other and it was really windy. I came in and she goes, “Ohmygod, it can move.” I said, “What?” She goes, “Your hair.” She said, “I was told it hadn’t moved since 1968.” So, thanks, Meg, that was very thoughtful.
Tim Ferriss: I only wish I could have perfectly parted hair. Alas, my options are limited these days. Jason Statham or bust is sort of my motto for styling. What did you think you were going to be in high school, when you grew up? What did you think you were going to be? Or hoped to be?
John Crowley: I always had been focused on the military. I think with my Dad being in the Marines and my uncle in the Navy and their being police officers, there was always that sense of patriotism and responsibility and wanting to serve the country. I spent a fair amount of time thinking about going in the military in high school. I also, thought about being a lawyer, even in high school.
Tim Ferriss: How did you decide on college? 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?
John Crowley: Yeah, you know what? So, I went to Bergen Catholic High School. It’s taught by the Christian Brothers. They were founded in Ireland. The Irish Christian Brothers. They’re a good order. I think they taught us well. I really can’t point to any one particular person in high school.
I think in terms of a mentor, somebody who taught me about life, for a male role model, it would certainly be my grandfather.
Tim Ferriss: How did you choose where to attend college or how did you end up attending the school you did?
John Crowley: I actually spent the first couple of years of college at the Naval Academy. I got an appointment from our Senators and that kind of took me on the course in the military. Then again, we make our plans and God laughs. So, I got to my second year of the Naval Academy. 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 F14 pilot.
Then boy, that was a real setback. I was thinking 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. Then I just started to think about was that the right fit for me in the 19-year-old struggling.
I finally made the decision that I was going to voluntarily resign from the 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. Aileen was also, then in college. She was my high school girlfriend and now wife. The thought of living in Washington was attractive. And I did, with a good degree of hesitation, signed that letter of resignation. I did put in that letter that someday I would like to wear a uniform again and someday I would like the honor to serve our country. I left it at that in whenever that was, 1987 or so. I went to Georgetown and finished Georgetown.
Tim Ferriss: What did you study at Georgetown?
John Crowley: I was in the School of Foreign Service at Georgetown.
Tim Ferriss: I’m going to plead ignorance here. I should know what that entails and I just don’t. What’s the curriculum? What is done at such a place?
It’s one of the four or so, college at Georgetown. Bill Clinton graduated from the School of Foreign Service many years before me. SFS stands for School of Foreign Service. We used to say it stood for Safe From Science. 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. An excellent program. I had phenomenal teachers; people like Madeleine Albright, Jeane Kirkpatrick, William Colby, who had been Director of the CIA. Remarkable people, great school.
Then from there, I thought 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. 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.
I’ll share this with you. I’d talked about my Dad passing away. The first time I ever watched – so, people think Notre Dame and they think 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. As a little kid, the first time I ever watched a football game, I was 7 years old. My Dad said, “We’ve got to watch a football game.” 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.”
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 school, loved the spirit of tradition and all that. 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 loved these gold helmets.
Notre Dame wins the game, 13-11 over ‘Bama. I said to my Dad, I said, “Dad, this is great.” He smiled and said, “Yeah, never forget this.” I said, “Dad, I want one of those gold helmets.” He said, “Tomorrow we’re going to Sears in Hackensack, New Jersey, and we’re going to get the gold helmets.” Great. So, we go the next day, go to the football section in the athletic department there and I’m looking, “Dad, there’s no gold helmet.” 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. My Dad died 10 days later.
Tim Ferriss: Ohmygod.
John Crowley: I still have that helmet, Tim. That memory and the affection, affinity, respect for a place like Notre Dame carried with me. I came down 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 $100.00 deposit, and said, “well, I’m going to Notre Dame Law School,” and I did.
Tim Ferriss: I should point out also, that your fondness for Notre Dame extends to our selection of cable colors for today’s interview.
John Crowley: 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’ve really got to love Notre Dame. My daughter, Megan, is a sophomore there. We’ll talk more about Megan in a little bit. So, it was great. I practiced law for a few years after that at a great firm in Indianapolis. I get bored sometimes real easily with things.
Tim Ferriss: What type of law were you practicing?
John Crowley: I was a litigator; I was a trial attorney. I did that for a couple of years. Great people, great firm. I was just kind of itching for something else.
On a lark, I applied to business school and the people up at Harvard – I still think it was a clerical error – but they accepted us. We were married, Aileen and I. We had a 1-year old, a nice house, nice life in Indianapolis. We picked it all up to move to Boston. It was one of the best decisions we ever made.
Tim Ferriss: Why was it such a good decision?
John Crowley: We made some of the greatest friends that we still have today. 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.
Tim Ferriss: Can you describe that? Because I had a professor at Princeton, Ed Zschau, who had a huge impact.
John Crowley: Ed’s great, wonderful.
Tim Ferriss: Yeah, Ed, for those people who don’t know the name, he is just a phenomenal human being and a very eclectic character, which I love.
Former competitive figure skater, former Congressman, took at least one company, I think a few companies, public. He was the first computer science professor at Stanford, I believe, because somebody didn’t show up to teach it. He said, sure, I’ll figure out how to teach that course. He taught a class at Princeton in high-tech entrepreneurship after leaving Harvard Business School. He used the case study method. Am I saying that correctly? Could you section what that looks like in practice?
John Crowley: 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. I don’t know how they do it now, but 20 years ago, every class was one case. In your course of two-year study, you will do 800 case studies. I’ll give an example. First day, first class, it was technology and operations management. Kind of a tech-ops, manufacturing-type course.
Having been a lawyer and spent most of my life avoiding math and science, I get this case. I’m like, all right, I’ve got to do this. I’ve got to get it together. It was a case called Donner Drilling. I’ll never forget about it. A company manufacturing widgets or whatever they’re making. We had to calculate the optimum through-put for manufacturing for the most cost-effective and efficient manufacturing process. I’m excited. I’m like, this is real business. This is what I came here for. I’m looking at it and the first thing I look, ohmygod, I’m looking at the math that I’ve got to do on this. 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 businessperson, entrepreneur, and taken the issue that they had and distilled it down to a case study for students. Now you prepare. You go into the class. 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 man.
What they do is they begin with a cold call. 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. 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. One of the great things about business school, especially how they taught it up at HBS is the students are, in many ways, teaching each other. It’s a discussion. I get, of course, first class, first case, “Why don’t we have start us off, John Crowley. John, are you here?”
I’m in the top deck and like, oh god. “Professor, yes, I’m here.” 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. Now I’ve got to get to the math. So, the equation – he’s putting it all up there on the board.
He’s laying it out. It just makes no sense, whatever. 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.
Tim Ferriss: It’s not okay.
John Crowley: So, then finally he starts writing the equations I’m giving him down. Then he just puts the chalk down and turns around and just looks at me. Then I just looked at him and 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.” There’s this awkward moment. I’m like, nobody’s laughing. Then everybody burst out. It really diffused the tension, but it’s a great way to learn. Oftentimes we’d have the real executives or entrepreneurs in the class to teach us. A couple of years after I graduated, they actually wrote an HBS case story about our journey in life. It’s called “A Father’s Love.”
Tim Ferriss: Let’s jump into that.
We can fill in gaps if and as needed. What does that case study cover? Why did they do a case study?
John Crowley: I graduated business school then in 1997. But that point, our son, John, was about three years old. Our daughter, Megan – well, John was actually two and a half. Megan was six months old. So, we had Megan while we were in business school. 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. Life was great. I had a lot of student loans, but we had a great job, we had a life and this is starting the American dream, if you will.
Tim Ferriss: What were you doing for work at the time?
John Crowley: I worked with a consulting firm out here in the Bay area. Doing business strategy, consulting, a lot of hours. But great people and it was what I signed up for.
What we didn’t sign up for was, by a year of age, we realized our daughter, Megan, who was born seemingly perfectly healthy, born at Boston at the Brigham, wasn’t doing the things that a kid typically does by 9 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. By this point, early 1998, Aileen is pregnant with our third child, Patrick. Patrick is born March 6, 1998.
Seven days later, we were asked to come to the neurologist’s office at Oakland Children’s Hospital across the Bay here. We’re told all the tests came back on Megan, 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. Aileen and I were silent carriers.
Anything person is a carrier, generally, for maybe a dozen or so, serious genetic diseases but it doesn’t manifest until you happen to make a baby with somebody else who has that. Even then, oftentimes, just a one in four chance. So, no health history in our families. Then I asked the doctor, “Is it serious?” He said, “Yes, it’s very serious.” His hands are shaking and he’s basically reading a textbook to us describing the disease.
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. Because of that, it’s ravaging her muscles and now we’re just in shock.
Then I said, “Doc, how serious?” He said, “I don’t think she’ll live another year.” Then he said – we had Patrick with us. He was seven days old. He was in a car carrier. He said, “And your son, Patrick, should be tested too. There’s a 25 percent chance he may have the disease as well.” I’ve got to tell you, Tim, we went through that car ride home – we were living in Walnut Creek near Oakland at the time – just in stunned silence.
We then, even just that night, we went through – 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, the grief, the denial, a lot of tears. Then Aileen went to bed and I stayed up late. Google wasn’t even around, but I did some internet searching.
I found that there was a doctor at Duke University. There was 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. I was so, excited and I woke Aileen up. I’m explaining, I’m rattling off this science. I didn’t know anything about science. She looked at me like “What are you even talking about? What does it mean?” I said, “I think, Aileen, it means there may be some hope.” That was a long day. It was a Friday the 13th. I’ll never forget.
Tim Ferriss: I cannot even imagine. That is – it sounds like the longest of days.
John Crowley: It was the start of many long days, yes. But it was a long day.
Tim Ferriss: 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? Of course, this is something that what follows as well has been turned into a book.
It has been turned into a movie. But for those people who don’t know the context, what happened after that?
John Crowley: 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 what was this disease, this Pompe disease that we had never heard of? It is one of 50 or so, muscular dystrophies. I 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. I began to reach out to them. I began to take Megan to see them.
That was hard too because we had a newborn at home, we had a 3-year old at home and I had a job a year out of business school that was expecting me to work 100 hours a week on an easy week. But this had to take priority. This was the most urgent, as you can think about, that you could imagine. 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. We raise about $1 million in not-for-profit money in about a year. I 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, we were just determined. 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. We said we would try. We tried through the not-for-profit world. We raised money. We 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. He 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, a positive in marketing, good health 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, I kept raising money for the not-for-profit, raising awareness of the disease.
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. She almost died in the hospital. Had to be ventilated and six months later we went through all the same things with Patrick.
He had to be ventilated. Within a year, we went from kids that were perfectly healthy, normal, to two little kids who were ventilator-dependent and wheelchair-bound. Science was beginning to show some promise. But we realized early on that it was going to be a race against time, as much as it was going to be against nature. After two years of doing that, by 2000 and working at Bristol-Myers, I had a choice. Either we could do this full-time or we could let nature run its course. Again, we were so, determined.
I quit my job at Bristol-Myers, joined forces with that scientist at Oklahoma. We started a tiny little biotech company. I still had all the student loans, but we 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? We took a home equity loan. So, the first money into the company, we took $100,000.00 home equity loan. All the equity in our house.
We thought that would last a long time. It didn’t. Then met payroll with a Visa and a MasterCard. Very prestigious venture firms have used their MasterCard.
Tim Ferriss: Tier 1.
John Crowley: Yeah, Tier 1. Oh, yeah, top tier. NEA came in right after them. So, what ended up happening, we started this little company 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. We 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 Pompe couldn’t make.
That company ended up become very successful, attracting within a year the attention of a lot of people. I think it was successful, Tim, because we literally did not know what we were doing. I was 32 years old. I had some good degrees and an education, but I had no idea how to be an entrepreneur. I certainly had no idea what you do as a biotech CEO. So, I made it up. Because of that, we broke so, many of the conventional rules, I think that’s why were able to beat time as well as nature. 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. So, we 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. It was founded by Henri Termeer, a magnificent entrepreneur with a real passion for people living with these diseases.
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 of Novazyme, “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. I decided to sell the company to Genzyme because I knew at Genzyme, as much as I respect Genentech, at Genzyme this program had to succeed. So, what we ended up doing is –
Tim Ferriss: Why is that?
John Crowley: Because for them, rare diseases were there business. They knew this would become, and it did become, their most development program ever. Hundreds of millions of dollars, a very difficult program, a very difficult drug to make, medicine to make. Lots of challenges. I stayed at Genzyme. I was Senior Vice President of Therapeutics at Genzyme.
Tim Ferriss: Can I interject for a second?
John Crowley: By all means.
Tim Ferriss: At this point, were your children already being treated?
John Crowley: No.
Tim Ferriss: Got it.
John Crowley: 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. There’s one that came from the Genzyme science labs. Children began to be treated. We saw some remarkable results early on. In Pompe disease, not only are the skeletal muscles weak, the cardiac muscle is very weak. By that point, Megan and Patrick, who were 4 and 2 or so, years old, not only were their muscles weakening, not only did they need ventilators to breathe, their hearts were so, enlarged that was the most life-threatening aspect of the disease.
Tim Ferriss: Just a quick question. So, glycogen is also, stored in the liver, if I’m remembering correctly.
John Crowley: It is. Glycogen is stored in many places in the body.
Tim Ferriss: So, does it also, cause problems in organs like the liver?
John Crowley: Yes. What you see in the liver is their livers became enormously enlarged. That wasn’t actually an immediate life-threatening aspect.
Tim Ferriss: The cardiac.
John Crowley: It was the cardiac and then the pulmonary, the breathing. Then, obviously, quality of life with the loss of skeletal muscle strength. When we were at Genzyme, we were moving at full steam. We had lots of resources, great people. We had manufacturing facilities. All the ingredients for success. Beginning to 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’ve 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, 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 Pompe infants and he knew my kids wouldn’t qualify. That was a 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. Geeta Anand captures it in her book very well. Then by January of 2003, January 9th, what would’ve been my Dad’s birthday, my kids were treated.
They became the 27th and 28th patients in the clinical study. That was a great day.
Tim Ferriss: So, many things I’d like to ask. Let’s start with what comes to mind, which is, during that period that you just reflected on, just described, that makes for some very dramatic scenes in the movie and certainly compelling reading, and you can answer this however you’d like. Were there any particular negotiations or conversations that were critically important in that period and how did you handle them?
John Crowley: There were many and I handled them poorly. That was the most desperate I have ever 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. 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 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. It made great sense, scientific sense, but it didn’t follow the protocols within the company.
I thought at that point, you know what? Better to ask forgiveness than permission. Let’s just get it set up, take the heat, heck, they could fire me. I don’t care. When people found out, it was a very difficult day and made for a lot of 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 were a lot of conversations in the company and usually 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. They went to a hospital. That hospital then actually – I 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 because the study included 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 then became not only a hard day for me and Aileen and the family, that was a hard day for my colleagues at Genzyme because they were fighting very hard to get our kids treated at that point.
By that point, I had really just – I don’t want to say given up – but prayed a lot, fought a lot, spent a lot of time with the kids. 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, and 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. 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 didn’t want anybody to make an issue out of it. So, I quit and I waited to hear. We got a card, a letter – first a phone call then a letter came Christmas Eve.
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.
Tim Ferriss: How did you respond to that? How does one – I can’t even fathom.
John Crowley: I got the mail that day. It was Christmas Eve. I looked at it and I read it, I cried. I wanted to run in and share it with Aileen. I wanted to share it with Megan, with Patrick. I said, I’m going to wait a little bit. We had family, we had Aileen’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 were celebrating and nice Christmas and Poppy, the kids’ grandfather, read ‘Twas the Night Before Christmas. I was just dying to share this.
I was in a really good mood. Aileen didn’t know why I was in such a good mood. She figured it was the Cabernet maybe. Then we sat down at dinner. We said grace and I said, “I have something else to share.” I read the card and the letter. That was a good Christmas Eve.
Tim Ferriss: That’s a good night.
John Crowley: That was a good night.
Tim Ferriss: That is a good night. I’m going to backtrack for a second. You mentioned something I’d love to get just a few examples of. You said, “We broke a lot of conventional rules,” because in a sense you didn’t know any better.
John Crowley: That’s right.
Tim Ferriss: What were some of the conventions that you broke or the things you did differently?
John Crowley: When you’re developing a drug, one of the things you need to do is, you kind of go through 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 so, the animals get stronger? Typically, you’ll do that at outsourced companies.
These are the experts. It takes quite a bit of time. 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? The NIH had genetically engineered mice to not express the protein to give them the Pompe disease, which my daughter Megan still thinks is the meanest thing imaginable. It’s done very ethically. We had these animals. I had the enzyme. 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. He said, “I used to be a hospital tech. 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 ten years, he’s there. We do put gloves on in the lab.
He puts a little bit of the enzyme into the mouse. I look at him and he looks at me and he goes, “I think I got it in.” 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. I can assure you that study failed. I can give you a whole bunch of reasons why it failed. So, those are the hard lessons of things you shouldn’t do. There were things though that we did that were successful. One of the things we did, I knew we had to make this drug in a way that we can deliver it to humans. So, what’s known as a GMP facility –
Tim Ferriss: Good manufacturing practice.
John Crowley: Good manufacturing practice, exactly. You’re familiar. We actually invested and made a plant. I couldn’t build a green field plant. It costs too much, takes forever. I met some entrepreneurs who had just begun to develop a system of basically building a building within a building; a clean room. We could do it for a couple of million dollars and we had raised about $27 million at that point.
We did that. 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. 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. Had we done it, it could’ve gotten us in the clinic. Where that was successful was 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, “You need us because you can’t make it,” I could take it and say, “Yes, I can make this.
Look at this.” That was pretty unusual. People usually don’t make those levels of investments and do it in a very unconventional way. That was a good decision. Lots of bad decisions, but that was a good one.
Tim Ferriss: Now your children are healthy?
John Crowley: 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.
They started that in January of ’03 and then we waited. We got the first results back in early April. The doctor came in with a smile and Megan was sitting up in bed. Before she even got to the echocardiogram reports, she turned on the x-ray, 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 – you s aw this enormously enlarged heart. That was before her treatment 12 weeks ago. Then she put up the one that was taken earlier that day. It was night and day. Her heart had shrunken back to normal. I took it to Megan’s bedside, showed her, explained, and she was all of 5 or 6 years old at the time. I explained to her. She was a kindergartener. I said, “Megan, this means you’re going to live to be an old lady.”
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. 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 it made them stronger, particularly Megan. But after about a year or so, the strength improvements plateaued. Then slowly began to regress. 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. What I realized then at that point, was 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. I realized then, I think we have to go do this again. We need to find next-generation therapies, newer, potentially better medicines.
That’s what led me to found this company, Amicus, in 2005. Do it again.
Tim Ferriss: How are your kids today?
John Crowley: The kids today – Megan just turned 20. Patrick is 19 in March. They’re 15 months apart. Patrick is a senior in high school and Megan is a sophomore at Notre Dame.
Tim Ferriss: Have many people like her gone through Notre Dame before?
John Crowley: With Notre Dame’s mission, it’s certainly welcoming of people who are intellectually capable of the rigorous academics, but who have disabilities. 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. People with severe difficulties. Megan is the most physically challenged student ever to go through Notre Dame. She is the only student to have to live in a wheelchair, on a ventilator, with 24/7 nursing.
So, after she was admitted, 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.” Then I called folks I know at Notre Dame who I know and I said, “Okay, Megan’s coming. What are we going to do?” They said, “Don’t worry. We’ll do whatever we need to do.” I’ve 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. They’ve provided aides and tutors. It was still a big show getting her out to South Bend. Where I was most proud, I told 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 to help, they were all going to college again. They were excited, but apprehensive. We had planned for almost everything we could. I had the nurse schedule, the hospital supply, they had the hospital bed moved in. Megan wants to live a full college life. She wants to be in the dorms, so, she was in the dorms. One thing we hadn’t thought about is Megan’s a 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’s going to be.
When I was in her dorm that second weekend, I was looking. 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.
Tim Ferriss: Wow, that gives me some hope for humanity.
John Crowley: There are some great kids, indeed.
Tim Ferriss: How have you raised your kids? Specifically, you can make it more generic if you’d like, but what do you think the principles of good parenting are?
John Crowley: I would say that we raised our kids, and my daughter Megan would say that she raised us. Somewhere in between lies the truth. Some of the basic rules in life you want to teach them. You try to teach them about hard work, about independence. One thing that’s remarkable though, I’ve learned with kids with special needs, and I’ve seen it not just with our kids, but lots of kids we’ve met over the years, 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. That’s something Aileen and I as parents could never teach them.
It just has to be part of who the are. I’ve seen that measure of resilience in these kids. I’ve seen it in our kids in spades. I’ve certainly seen it in many other children with a lot of rare and devastating diseases. Because of that, I kid around that 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 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.
Tim Ferriss: Could you give me an example where that might apply? Or just describe what you mean by that?
John Crowley: Yeah, so, we often get enveloped in our own little universes. 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 there’s a bigger purpose to life.
I’ll give you an example. We took our 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 that sense of faith and community and a bit of giving back to others. Most parents do that. I took him down when he was little, every year to Washington, D.C. We do a father-son trip. I’d take him to the memorials and the monuments 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.
It was right at the start of the Iraq War. It was 2003. There was a young man there who’d lost both his legs, a 19-year-old corporal in the Marine Corps. They were giving a speech and people going on. I looked at John and his eyes were wandering. He’s got ADHD and I was wondering, is he getting it? I looked at him and 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 this cemetery lost their lives. He is a hero and they are heroes.” I just thought okay, he got it. In his own way, with his own special needs, he was able to articulate that it’s bigger than him.
Tim Ferriss: What would your advice be to parents, and there are almost certainly parents listening who either have kids with special needs or 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?
John Crowley: We tried really early to be a so-called normal family. I could tell you there’s a lot of times early in life where I wanted, we wanted to have “normal kids.”
Sometimes I was mad and angry and frustrated. Sometimes I behaved very irresponsibly because I wanted a normal family. I wanted to do normal things. I wanted to just be able to take the kids and go to Burger King at night. Go to the movies. Things that all of our friends and many of our friends were doing. Then I realized that – and I tried teaching this to the kids – we’re all different. We’re all special. Megan and Patrick, people may look at the two of them and I tell them, “Yes, people can look at you and realize you’re different, but it’s these differences in life that make us so, special.”
We talk about, 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 of actually three special needs kids, to realize that’s a gift in itself and it adds to the diversity in life.
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?” Aileen 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 5 years old.” I pushed back and then finally said, “Okay, let’s see.” So, we called the local school. We had just to Princeton. We said “Hi, we’re the Crowleys. We’re here. We’ve got to register our daughter, Megan, for kindergarten. By the way, she’s got this little issue you should probably know about.” They were 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 and said “John, great young lady. I just don’t think 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, and I didn’t even tell him, who may only live 6 or 12 months. Bob Ginsburg, wonderful principal, I said, “Bob, I really think that she thrives around being with kids, with people.
I don’t know how long she’s going to live. I hope a long time but I don’t know. Would you please give it a shot?” He said, “Okay.” Thought about it, called me back and 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 to dispel any myths, rumors, whatever? I did that. I came in, told them what Pompe disease is, told them your kids can’t catch it. Everybody kind of looked at me and shrugged and kind of half-smiled. I figured okay, I bored them, but I did my job.
Megan started kindergarten. Kindergarten year was great for Megan. She loved it. The gym teacher made up special routines for her in the wheelchair. She was going to 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. Then you go to kindergarten graduation. We get there and these kids, they get the little hats and diplomas and it’s really cute. It’s fun for any parent and special for any little kid.
Then Megan was called to get hers. She got a lot of extra applause. I was really proud. Then the principal came over to me and said, “John, can I talk to you?” I said, “Sure.” He goes, “Megan had a great year. You were right.” I said, “Yes, thank you so, much. 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, I got a lot of phone calls and letters and emails from those parents.
The message was all the same. It was basically, ‘Look, beautiful young lady. We feel so, sorry for her. But 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?’” I’m looking at him and I’m thinking, first of all, your feelings are hurt. Then you feel sorry for your kid that somebody would think that of them.
Then he looks at me and he says, “John, 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.” Now I’m thinking, how is he going to tell me that she can’t go to first grade here? He said, “The message is all consistent, it’s all the same. It’s ‘Dr. Ginsburg, we know it’s difficult and this is hard to ask, 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.’” Then you get emotional thinking about it.
Then I thought, you know, Megan was just trying to be a normal kindergartener. She didn’t have to teach those kids. What I’ve found is first day, kids ask, came up and kind of looked at her funny and said, “What’s wrong with you?” She said, “Oh, I have a disease. My legs and arms don’t work, but my mind does.” They’d look. They’d shrug their shoulders and say “Okay. You want to go play a game?”
Kids got over it in like 30 seconds. The parents were the ones who had the problem. Think about it. What ended up happening was Megan, without ever knowing it, by her example and by just being a kid, taught those big people a really important lesson. 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 lives of others. For me as a parent, that was a real lesson that little people can teach us big people an awful lot if we just listen. Maybe it is true that everything you needed to learn in life you needed to learn in kindergarten.
Tim Ferriss: I was at the bad table a lot in kindergarten. Well, actually, no. 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. 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?
John Crowley: Yeah, this explains a lot, Tim, you realize. It clears up a lot for a lot of listeners.
Tim Ferriss: It was Dennis and myself were the two kids isolated at the bad table. The teacher forgot it was the bad table. I wanted to ask you about the challenge, perhaps, of trying to help kids with rare diseases. I ask because here we are sitting in Silicon Valley in San Francisco right now and the first thing many entrepreneurs do is, or one of the first things, is 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 larger portfolio of different diseases? How does that work?
John Crowley: Sure. So, there are 7,000 known rare diseases that together just in the United States, affect about 30 million people.
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. What we typically do is we’ll begin with 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 1,000. You have a disease with, call it 500 or 1,000 or more patients. You can build an economic model to support that.
For us, when we look at will we work in a rare disease? It’s is it devastating? Do we have a technology that can apply? Can that technology make a meaningful difference for these patients? The last thing we look at is, how many patients have the disease? 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.
Tim Ferriss: What keeps you going at this point? What are your main drivers?
John Crowley: It’s not a lot different than it was 10 or 20 years ago. In business, now that we’ve got Amicus, and the whole notion there is we were going to make medicines for rare diseases, devastating disorders.
Tim Ferriss: How did you choose the name?
John Crowley: Amicus in Latin, of course, means “friend.” We wanted the company to be the most patient-centered biotech company in the universe.
We thought well, if you’re going to be – there’s a lot of great names in biotech companies. They’re all usually named after Greek gods of healing or complex science names. We thought friend biotechnologies just sounded a little too cute, but if you Latin-ed it up a little bit, all of a sudden, Amicus, it’s got some weight, some gravitas.
Tim Ferriss: It’s very high-brow.
John Crowley: Yeah, it’s very sophisticated. But if you look at it, it just means friend.
Tim Ferriss: Got it. I took you off your train of thought though.
John Crowley: Not at all.
Tim Ferriss: You were just describing – let me try to rewind my brain here.
John Crowley: You asked what keeps me going.
Tim Ferriss: Right, and you said it hasn’t changed much.
John Crowley: It hasn’t changed much. For me, it was a focus on how can you, as an entrepreneur – because I’m not a scientist. I’ve learned a lot of science over the years. Years ago, I hired tutors at night to teach me science. So, being immersed in the field, you have to learn it.
For me, it’s how can you use the vehicle of entrepreneurship to drive medicine? 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 Genentech’s out here, the Amgen’s, Genzyme’s, 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.
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 Novazyme, I thought it was a sprint. 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.
With that, we guess 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. If we do that, we can do some, and have done, some really great things.
Tim Ferriss: How and when did the military re-enter the picture?
John Crowley: September 11th. After 9/11, I though maybe I have some skills and certainly have a lot of passion and two hands that I can contribute. I went through the whole process and was commissioned an officer in the Navy Reserve a couple years after September 11th. I actually was sworn into the Navy by my Naval Academy roommate, Ed Devinney, 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 a year-long background check. So, I miraculously passed the background check and they gave me all the top secret and other clearances.
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 Devinney,” now he’s pretty high-ranking in the Navy at this point, “was there to swear me in?” This young officer said, “Well, yeah, of course.” He 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.
Tim Ferriss: Wow.
John Crowley: Yeah, that was pretty emotional.
Tim Ferriss: Now, I’ll try to tread carefully here. I don’t want to get into territory that you can’t talk about. 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 baseball and so, on, you’re like, “Well, I was 5’6”, 150 pounds, I wasn’t the super athlete.” What are the characteristics you think that have made you successful in that world as well and capable?
John Crowley: 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. I got to work with some of the most elite units in our military. You talk about serving in the company of heroes. These men and women are just remarkable. I was fortunate enough to have co-workers 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 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 counter-terror task force. I got to put a very small dent in the universe in terms of things that were important to me to contribute to.
One thing that carries over from life, from business, to the military, for me certainly in biotech, you’ve got to be persistent. It’s that resiliency that in biotech, again, almost everything we try doesn’t work. You’ve got to have the stomach for that. You’ve got to have that sense of this has to work. Biotech, for me, it certainly had to work because our kids’ lives depended on it. That’s something that anybody who’s been in the military knows. Especially when you’re deployed. It has to work. You cannot fail. Not just because the mission is so, important but because you’ve pledged your lives to the people around you.
That is a very sacred commitment and oath and something I was in awe of every day. I believe that serving in the military was the greatest honor of my life. It’s something I’m proud of, but that taught me as much about life and certainly sacrifice and having done it during the course of 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 it was an honor for me.
Tim Ferriss: In the – it could be in the civilian sphere, in business or elsewhere – but when you are feeling 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?
John Crowley: I try to think about what’s the situation and what are my options? So, take it to business. When we started Novazyme, when I started Amicus, I didn’t build the business plan from the bottom up. What I’ve always started with is what’s the vision? What do we want to look like in 5 years? In 10 years? Then work backwards for there.
If you set the vision, then think about, okay, big vision, what are the barriers to get there? For me early on in Novazyme, for instance, there were a lot. It was money. It was recruiting talent. It was facilities. All of that. Just slowly think about and process, how do I break down these barriers? Now you can take that from a big venture, like 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. 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?
Tim Ferriss: What books have you, besides your own, gifted to other people? Book or books.
John Crowley: 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.
There’s a great book by an author named Benson Bobrick called Angel in the Whirlwind. 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 he’s a great storyteller. There is a great hero in the book. Do you want to guess who the hero of the American Revolution is? It’s not a trick question.
Tim Ferriss: I don’t even want to – I’m afraid to embarrass myself.
John Crowley: George Washington.
Tim Ferriss: There we go, okay.
John Crowley: So, easy answer, George Washington.
Tim Ferriss: I was going to go for the layup, but I was like, I might flub it.
John Crowley: 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. You’ve got to realize what they did, and it’s told in that book, is just so, extraordinary. It’s never happened before or since in the history of the world of people coming together for that cause.
Within the American Revolution, realizing they fought for this great ideal, lots of sacrifice. 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? Great lessons in life. I think it’s a great book. It’s a great way to learn history.
Tim Ferriss: Who are some underrated or lesser-known leaders you think are worth – who inspire you or are worth studying?
John Crowley: We talked about the importance of persistence and resilience. You can go back – the founding of the biotech industry only goes back 41 years, 1976.
Tim Ferriss: That’s wild.
John Crowley: Isn’t that crazy? And it was founded here in San Francisco, in the Bay area. It was a young venture capitalist at Kleiner Perkins, Bob Swanson, he was looking at ideas and came across some papers written by a University of California at San Francisco, UCSF professor, named Herb Boyer.
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. Swanson took a drive up, knocked on his door, started asking questions, starting putting stuff on a board. He literally went across the street to a bar and started putting it together on a cocktail napkin. 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 of those challenges, they had to start a company, they had to start an industry that didn’t even yet exist, and sell it to the partners at Kleiner Perkins. Boyer had to leave the academic world. But they did that. Think what the world look like – what would our industry at least look like, biotech, without Genentech? It would be very different.
Tim Ferriss: I’ve never visited Genentech, but is it true –
John Crowley: You’ve got to go, man.
Tim Ferriss: 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, so, they built their campus or their buildings around the doughnut shop. Maybe urban legend, but I hear that –
John Crowley: I’ve been to Genentech.
Tim Ferriss: You’ve never seen the doughnut shop?
John Crowley: Never been to the doughnut store.
Tim Ferriss: 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.
John Crowley: But you look at people 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. 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.
Polio was the scourge of the society from a healthcare standpoint in ‘40s, ‘50s, obviously. FDR affected by it. A young researcher at the University of Pittsburgh Medical Center named Jonas Salk, had an idea that he could develop a vaccine for it. He got some funding from the Infantile Paralysis Foundation, what we now call the March of Dimes, developing a vaccine. He worked on it tirelessly. His whole lab well funded. He put it together, tested it on himself, on his co-workers, his family. He did a large series of experiments and it didn’t work. There was a great interview years later that I read. It was a magazine ironically called Wisdom. 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? He said, “I thought about it. I thought about how I’m going to tell my family, my co-workers, the people who 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 what’s going to say.” 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.” He said, “At that moment, I realized the enormity of my work and I went back to it with a renewed vigor.” I’ve always tried to think about that. What if Salk didn’t go back to try it again? I’ve had plenty of failures in biotech.
Plenty of drugs that haven’t worked. Studies that were delayed. Every setback you could imagine. I try to think about that.
Tim Ferriss: If you were to develop a training curriculum for civilians. It 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 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.
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?
John Crowley: The old adage is “trial adversity builds character.” 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 you talk about different ways that you’ve tried to do it that you’ve taught others to do. You could do it through rigorous physical training, you could do it through a discipline. You can do it through focusing more on certain activities in life that require sacrifice. That’s all true and I think that’s all an element of it.
What I’ve come to realize is there is no way to substitute pure experience. We will all go through adversity in life. So, you don’t have to worry about ohmygod, I’m never going to get the experience of adversity. Believe me, you will. Sometimes more than you ever thought you would.
The thing that makes it better is to realize, take that step back and think about what matters in life. To me, it comes down to time. In Geeta’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 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. Time with the people we love. We treasure it, we hold onto it and we hope and pray for another, even as we continue into the unknown and the unknowable that we all call life. That’s it.
To me, it’s all about time. What did we do with our medicine? Why did we do it? We did it to buy time. Time in life. 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 that can happen with great medicines gives us time. Somebody, I want to say it was Anna Quindlen, once wrote in one of her books that “Life is a fatal illness.”
Tim Ferriss: Life is a fatal illness?
John Crowley: Life is a fatal illness. 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.”
Tim Ferriss: Which could happen, right?
John Crowley: It could happen.
Tim Ferriss: It’s happened to friends of mine.
John Crowley: It happens every day to people. 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. 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, you’re in great physical shape, but I have to share this with you, you’re going to die. Now somebody, they turn white, ohmygod. Yes, 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 old. That’s it.
You’re going to live to be 80. Right? 79.9 I think now is the average life expectancy. 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? You’re fighting for time. What do you do with that time?
Tim Ferriss: You are probably the perfect person to ask the following. It’s something that I’ve grappled with and continue to grapple with. 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. 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, then I’ll go in one direction. Then I’ll read a bunch of – who knows – whether it’s Rumi or Zen Buddhist thinking. Or maybe it’s a non-philosopher, but nonetheless someone who has a strong position and perspective on how to treat time.
I haven’t resolved it for myself. How do you think about it, if you do think about it?
John Crowley: It is the one thing that I struggle with most. It is finding that balance in life. Many times, in life, I’ve gotten it wrong. I probably still don’t do it very well. 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. 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 Novazyme 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 Aileen and I – she said, “Look, you go out and search for the cure. I’ll take care of the kids.” We had a great division of labor.
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, finding the right balance. I’ll 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. You go out –
Tim Ferriss: The roadshow?
John Crowley: – investment banks, you do this roadshow. It sounds pretty sexy. It’s grueling. It’s like Groundhog Day. 80 of the same meetings around the world. The cool thing is the banks will get you a Gulfstream V or whatever to fly around in. I’d never been in a private plane. I thought that was pretty cool. So, you go through. We had a great IPO. Eight times over subscribed. Wall Street, now on this second company, Amicus, gave us a $300 million pre-money valuation. We raised $75 million. We go to New York, we closed the deal.
Lots of backslapping at the Board level. The next morning, we’re there. We closed 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. 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 of this. Two weeks on the road, pretty grueling. So, I went home that night.
I went in like most moms and dads who travel. You go in, check on the kids. The boys sleep pretty soundly, so, John and Patrick were sleeping. I gave them a kiss and they didn’t stir. I went into my daughter, Megan’s, room. She was 10 years old at the time. 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. She said, “Daddy!” I said, “Megan!”
She threw her arms open, “Give me a hug.” I gave her a hug. She said, “I missed you.” I said, “Megan, I missed you too.” She said, “Daddy, how was your big business trip?” I had my suit on and all of that standing above her. I said, “Well, Megan, the trip was good. You’d be pretty proud of the old man.” She said, “I know, Daddy. I saw you on TV today.” I said, “Oh, really? So, how’d I look?” She said, “Well, Daddy, you looked really, really,” and I’m thinking powerful or whatever. She said, “Daddy, you looked really, really kind of short.” So, I’m standing there. Now there’s this awkward silence.
Now, Megan is also, the master of how to damn with faint praise. So, she looks at me and goes, “But, Daddy,” and I have this yellow power tie on. She goes, “But, Daddy, that tie looks really good on TV on camera.” So, I went, “Okay, thanks, Megs.”
Tim Ferriss: She’s giving you a criticism sandwich.
John Crowley: Oh, yes, always. All day long. She said to me, “Are you going to be here in the morning?” 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.” She said, “Goodnight, I love you.” I said, “Goodnight, I love you.” 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. I realized Megan absolutely, truly did not care that we’d raised a bunch of money, that I was on TV, or 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. I think it that moment I realized, you know what? That’s why we’re doing this. For those moments.
Tim Ferriss: 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 “significance”?
John Crowley: Sure, or can we have a meaningful impact on a disease.
Tim Ferriss: What I’d love to ask is 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 great number of people? If you have say an impact of 0 to 10. I know this may come out a little unformed because –
John Crowley: No, I hear where you’re going. But go ahead, tell me.
Tim Ferriss: Is it better to go an inch wide and a mile deep? Or the opposite, in a sense, right? And hit a large number of people. 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 place like Oakland, for instance.
Where you’re hitting 10 or 20 students and you might be able to impact them very deeply. 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. I struggle with – and it certainly doesn’t have to be a false dichotomy, right? It doesn’t have to necessarily be either/or, but we only have so, much time and energy to allocate. How do you think about that?
John Crowley: 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?
Tim Ferriss: No, it’s even that because this is a purely selfish question.
John Crowley: Sure, yeah.
Tim Ferriss: Where I’m trying to understand how you think about – I like to get advice, quite frankly, as to how I should use my own time.
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 there are many compelling arguments for seemingly incompatible approaches, whether it’s going the effective altruism route or people who say 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.
Because you’ve done a lot of work with the Make-A-Wish Foundation, which is a massive understatement, obviously. But for those people listening and for me, how would you encourage them to think about giving back or altruism or creating a for-profit company that does good, for that matter? I know that’s a gigantic, multi-faceted question.
John Crowley: 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. It’s actually a great example. Make-A-Wish, back in 1980, there was a little boy named Chris Greicius, a 7-year old. Chris had advanced leukemia. He was in Phoenix, Arizona receiving some treatments. Chris was going to die. Some nurses, family members and then police officers heard about it, that Chris always wanted to be a cop when he grew up.
So, these cops heard about it and they said 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. They made him a cop. They deputized him with a judge, put the uniform on him. They took him up in the police helicopter. Just a true police officer experience.
He went back to the hospital after that day. It was on the local news in Phoenix. It was great. Two days later, Chris Greicius died. He was actually flown back to Illinois where his family was from. He 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 how he didn’t live long and how tragic it was, but boy, he sure loved that day and that experience. They were so, happy and they realized it made their lives better, the people who gave him that gift, that wish.
Then they said, well, why stop? Maybe we can do this for other kids. That’s how the Make-A-Wish Foundation came to be. Because a couple of people just wanted to help one sick little boy. 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 and brought joy to people with life-threatening illnesses and the communities that’s affected.
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 on 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 the secrets to treat much more prevalent disorders. You look at a disease like Parkinson’s and Alzheimer’s, many of the cancers.
They’re really just human genetic diseases that we don’t yet completely understand. 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. In the meantime, my big vision for the company is I want to be at the forefront of human genetic medicine, which I believe in the years ahead means that we’re going to be at the forefront of human health. That’s pretty exciting.
Tim Ferriss: It is exciting. We were chatting before we hit record and you mentioned that it’s entirely not – these are my words, not yours – but that it’s entirely feasible that we might find ourselves living to, say 200 or something like that. There are certainly a lot of people here in Silicon Valley who are pursuing that –
Tim Ferriss: – with all of their energy and resources. What are some of the breakthroughs or potential breakthroughs? Things you think have 50 percent or higher likelihood of happening, that most excite you in the next 10 to 20 years?
John Crowley: Yeah, I really think, Tim, that we are on the cusp of a golden age of medicine. We’ve come a long way in the last century. We’ve almost doubled the life expectancy here in the United States. We did that with better hygiene, better nutrition. But the greatest single contributor to expanded life expectancy is medicines. Medicines that are extending and enhancing life. 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. So, 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.
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 the human genome in an individual and fundamentally change their health course.
Tim Ferriss: And do so, very inexpensively in some cases.
John Crowley: In fact, and do so, in a way that you’ve now permanently changed the human germ line so, that genetic change is inheritable to their children. Obviously, profound ethical consequences, but I really believe that if we keep pursuing these technologies, many of which are already in clinical development, 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, what happens in aging is more and more of these little mistakes in our DNA happen and over time, they accumulate and over time they lead to cellular inefficiencies.
The 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. It can be scary, but to me it’s actually unbelievably exciting. If we can do it for the right reasons in the right way to extend and enhance human life, that’s what it’s all about. It kind of gets us back to time. Time and quality of life and that’s pretty darned exciting.
Tim Ferriss: On the quality of life front – just a few more questions – but on the quality of life front, what does a – I could pick a single day of the week, but – what does – and I’m not in any rush at all, I just want to be cognizant of your time – that an ideal day. This is a weekday. Ostensibly, there’s some business to be done, but what does your schedule look like for that day? What I’m very curious about is routines. Things that you do habitually.
John Crowley: So, I try to get up early. Usually not early enough. I’ll try to get up by 6:00 in the morning. With that, I’ve always got to plan things I’m going to do. 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, whether I get up at 5:00, 6:00, or 7:00. 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 wake up at 6:00, shower, get ready, catch up maybe 30 minutes on the elliptical, 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.
Tim Ferriss: You do this on the elliptical?
John Crowley: I’ll do it on the elliptical.
Tim Ferriss: Do you use a phone, iPad? What do you use?
John Crowley: I’ll use my iPad. Prop it up and just flip through. I’ll 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.
Tim Ferriss: What time is that, roughly?
John Crowley: I’ll try to leave the house around 7:15 or so. So, try to beat the school traffic in, with all the schools in Princeton. I’ll do that and get in the office. I 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.
I 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 living with the disease. If you come to our company, you’ll see we’ve got portraits and pictures and paintings around of all people living with rare diseases and their stories. We try to bring them and 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. There’s the invariable demands on your time. I do try, and I don’t succeed more than 50 percent of the time, but I try, and it’s on my calendar every day – one hour of thinking time.
Tim Ferriss: When is that usually scheduled?
John Crowley: Usually early afternoon.
Tim Ferriss: So, post-lunch?
John Crowley: Post-lunch, 1:00, 2:00. It’ll have to vary by certain other commitments, but it’s always on there. 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? What happened unexpectedly that I have to pivot around? What I also, find though is about 50 percent of the time, there’s such demands on my time that I’ve got to use it for something else. There’s, John, you’ve got to get on a call with this clinical site. Or John, these investors need to talk to you. Do you have time? That’s okay, because rather than every day pivoting things around, at least I know I’ve always got a little bit of flexibility built in.
If the kids are home, I try to get home at a decent hour and spend time with them. I get a more intense workout in when I go home. I either go to CrossFit or do something in our basement. Try to do more of a weightlifting workout. Get out the frustration of the day.
Tim Ferriss: What might that look like specifically in your basement? What would a Crowley evening workout look like?
John Crowley: 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 kettle bell swings, those types of activities. Try to mimic a CrossFit workout. 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.
Tim Ferriss: I was going to say, just to increase your injury potential.
John Crowley: Which seems increasingly common. 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 more easily. Then a little bit of dinner, time with the family, wrap up a little email. The last thing I do before I go to bed every night, I pray.
Tim Ferriss: What are your typical meals? Do you have default breakfasts and lunches that you have?
John Crowley: Almond butter and bananas in the morning. If I can, I’ll take a frozen egg white and throw it in.
Tim Ferriss: And you blend that?
John Crowley: No. Either/or. No, that actually sounds like it would be kind of gross.
Tim Ferriss: What do you do with the frozen – how do you eat the frozen egg white?
John Crowley: You put it in a microwave. What do you think you do?
Tim Ferriss: All right. Good God. I thought you were just gnawing on some ice cube of egg. It sounded terrible.
John Crowley: I only eat things that are frozen, Tim.
Tim Ferriss: Then what does lunch look like?
John Crowley: Lunch I try to eat light. We try salad, soup, something like that. My big meal is dinner.
Tim Ferriss: What is dinner?
John Crowley: So, we try to eat healthy when we stay home. Chicken, fish, steaks. Aileen’s been trying some of these prepared meals, the plated Blue Apron. Those are quite good. But I love pasta. My Grandma was from Sicily. I love pasta. I try to limit it, but probably one or two nights a week, we’ll have a big pasta dinner. Always on Sunday if we can, with family.
Kind of an effect of growing up in a big half-Italian family and the Irish side that loved the pasta too.
Tim Ferriss: 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?
John Crowley: Yes.
Tim Ferriss: What have you found to help with that, if anything?
John Crowley: I try to stop the email by 9:00 p.m. Sometimes you can’t, but try to stop it by 9:00 p.m. We’ve got operations in Asia as well, so, Asia, United States, Europe. There really is no downtime anymore. But I try to stop it. Then I try not to use electronics after 10:00. No TV, no iPad, no iPhone. I try to read. For me, reading helps. Then as I said, I don’t meditate, but I pray.
Tim Ferriss: Is there a set prayer or a go-to prayer that you have or is it different every night?
John Crowley: I always start with the Hail Mary. So, for me it’s the Hail Mary and the Our Father. Having grown up in a Catholic family and many Catholic schools, that’s my prayer, my peace time. As I’ve gotten older though, I’ve stopped praying for things. I don’t mean material things, never that. But help with this, help me with that, intervene. Sometimes, yes. I pray for others, yes. What I really try to pray for is, I guess I’d call it peace, grace, strength, and thanks. To me, that’s always a nice way to try to fall asleep.
Tim Ferriss: What is grace to you?
John Crowley: I think it’s the – I always ask my kids. I asked them, “Are you happy? Are you safe? Are you fulfilled?”
So, to me maybe it’s a combination of all of that – happy, safe, and fulfilled.
Tim Ferriss: If you had a gigantic billboard and you could put a short message on it or image, nothing commercial, to impart to millions of people, what would you put on that?
John Crowley: It’s bigger than you.
Tim Ferriss: It’s bigger than you. John, it’s always so, fun to hang out.
John Crowley: Same here also. This was great.
Tim Ferriss: We could go for hours and hours.
John Crowley: This is our longest conversation without beer.
Tim Ferriss: I know.
John Crowley: Ever.
Tim Ferriss: I know. It is absolutely the longest. I think many more ahead. Is there any request you would like to make of my audience? A suggestion, a recommendation, parting thoughts or comments?
John Crowley: I think in the scope of healthcare, because it’s 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, or whatever it may be.
So, that importance of being your own patient advocate is just so, critically important. 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. I’ve asked if she’d share more of her life perspectives with people because she lives – most people would look at Megan and think, “God, this poor little kid. Pity on this young lady.” She doesn’t feel that way. She feels so, blessed and she’s so, happy and so, inspiring and funny as could be.
Tim Ferriss: She seems very good at busting your balls.
John Crowley: She certainly does, certainly does. Every day. She started a blog just last week. It’s called High Heeled Wheels.
Tim Ferriss: High Heeled Wheels.
John Crowley: 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.
Tim Ferriss: High Heeled Wheels the way we would think it to be spelled?
John Crowley: That’s exactly right.
Tim Ferriss: Okay, great.
John Crowley: Megan loves high-heeled shoes, even though she’s never walked a day in her life. That says something about her. Thank you, Tim. This is awesome.
Tim Ferriss: Absolutely. Thank you, John, first and foremost. 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/podcast. John, we have to have more conversations and spend more time together.
John Crowley: Yeah, for sure, Tim. Once we cure a few more diseases, let’s come back and talk.
Tim Ferriss: Absolutely. As always, to everyone listening, thank you for tuning in and keep experimenting, work smart and play often.
Posted on: June 5, 2018.
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Who was interviewed? Here's a very partial list: tech icons (founders of Facebook, Twitter, LinkedIn, Craigslist, Pinterest, Spotify, Salesforce, Dropbox, and more), Jimmy Fallon, Arianna Huffington, Brandon Stanton (Humans of New York), Lord Rabbi Jonathan Sacks, Ayaan Hirsi Ali, Ben Stiller, Maurice Ashley (first African-American Grandmaster of chess), Brené Brown (researcher and bestselling author), Rick Rubin (legendary music producer), Temple Grandin (animal behavior expert and autism activist), Franklin Leonard (The Black List), Dara Torres (12-time Olympic medalist in swimming), David Lynch (director), Kelly Slater (surfing legend), Bozoma Saint John (Beats/Apple/Uber), Lewis Cantley (famed cancer researcher), Maria Sharapova, Chris Anderson (curator of TED), Terry Crews, Greg Norman (golf icon), Vitalik Buterin (creator of Ethereum), and nearly 100 more. Check it all out by clicking here.