YouSaid · the spoken record

John Crowley

lines on the record: 145
first: 2017-02-28
most recent: 2017-02-28
sittings or episodes: 1
sources: podcast

Every line below is reproduced as it was said and linked to the record it came from. Nothing here is summarised or generated. Directory · Search · Corrections

“I try to think about okay, what's the situation and what are my options? So take it to business. When we started Novazine, when I started amicus, I didn't build the business plan from kind of the bottoms up. What I've always started with is, you know, what's the vision? What do we want to look like in five years, in 10 years? And work backwards from there. So if you set the vision, then think about, okay, big vision. What are the barriers to get there? And for me early on in Novazyme, for instance, there are a lot. It was money. It was recruiting talent. It was facilities. All of that. And just slowly think about and process how do I break down these barriers. So now you can take that from a big venture like, you know, building a company from scratch all the way into a situation in a combat zone and what you're trained for. Okay, this is the objective.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“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. And that is a very, very sacred commitment and oath. And something that I was in awe of every day, I believe that serving in the military was the greatest honor of my life. And 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 war, wartime. And the people who I served with, what they sacrificed, many of whom lost their lives, is something I will certainly never forget and was an honor for me.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“And one thing what 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. And you've got to have the stomach for that. You've got to have that sense of this has to work. And biotech, for me, it certainly had to work because our kids' lives depended on it. That was something anybody who's been in the military knows. And especially when you're deployed,”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“I was fortunate in the military. In the 11 years I spent in the Navy Reserve, Tim. Units in our military, and you know, you talk about serving in the company of heroes. I mean, these men and women just remarkable. And I was fortunate enough to have co-workers in Amicus as we started that. And then even as a public company, there was a time, I was told I was the only public company CEO who was an active duty reservist in the country. I served three periods of active duty in addition to the reserve duty, including a deployment to Afghanistan. There I was served as a deputy chief of intelligence for a counterterror task force. So I got to put a very small dent in the universe in terms of things that were important to me to contribute to.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“Some street lower Manhattan, I didn't realize it was a Navy Reserve recruiting office overlooking the World Trade Center site. And that was pretty emotional.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“September 11th. After 9 11, I thought, you know, maybe I have some skills and certainly have a lot of passion and two hands that I can contribute. So went through the whole process and was commissioned an officer in the Navy Reserve a couple years after September 11th, actually was sworn into the Navy by my Naval Academy roommate, Ed Davini, who is 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. And then I got this letter saying, report on such and such date for your swearing in. I called the officer in charge. I said, hey, would it be okay if Commander Divini, now he's pretty high ranking in the Navy at this point, was there to swear me in. And this young officer said, well, yeah, of course. Gave me the address.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“Week, yes, we can move incredibly fast, but we can look for the best science and push it for Pompeii disease or for any disease that we're looking at. And if we do that, we can do some and have done some really great things.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“You'll figure the business model out. You'll make great value. You'll look at the great biotech companies today, the Gentex out here, the AMGens, genzymes. They all started the same way. They started with a couple of scientists, a couple of venture capitalists, and some entrepreneurs. Every great biotech company, you can't point to one that was a spin out or a bunch of mergers. They started that way. And that's what I've tried to do. And that's what we're trying to do at Amicus now. One difference is Early in my career with the first company at Novazyme, I thought it was a sprint. And in some respects it was. Now that the kids have a medicine, even though it's not a cure and not, I don't think the best, most effective treatment, it's now enabled me to change my view, Tim, that it's a marathon. So, with”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“hasn't changed much, so 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, hired tutors at night to teach me science. So in being immersed in the field, you have to learn it. So for me, it's how can you use the vehicle of entrepreneurship to drive medicine? And I've always believed if you make great medicines, push science as far and as fast as you can.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“Amicus in Latin, of course, means friend. We wanted the company to be the most patient-centered biotech company in the universe. So we thought, well, if you're going to be, you know, there are a lot of great names and 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 lattened it up a little bit,”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“So it's not a lot different than it was 10 or 20 years ago. So in business, now that we've got amicus and the whole notion there is that we were going to make medicines for rare diseases, devastating disorders.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“You have a disease with call it 500 or 1,000 or more patients. Can build an economic model to support that. So for us, when we look at will we work in a rare disease, is it devastating? Do we have a technology that can apply? Can that technology make a meaningful difference for these patients? And the last thing we look at is and how many patients have the disease. So with that model, you can get to many of these diseases. Not all. We can't figure out yet what do you do with these rare diseases that affect five, 10, 100 patients. There, you know, NIH, other areas could fill in in the gap perhaps, but we can make a big dent in it.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“Sure, so there are 7,000 known rare diseases that together, just in the United States, affect about 30 million people. So individually, by definition, rare, taken together, they're actually more prevalent than all HIV and all cancers combined. The challenge, of course, is they're all unique and they all need their own unique medicines. So what we typically do is we'll begin with, okay, is it a rare disease? If it is, how rare is it? When we first got into this, it used to be if a disease was below 5,000 or 10,000 prevalence, it was just too small. There was no economic model to sustain it. It's now come down, though, I think, with the advancements in technology, with regulatory science just beginning to understand faster paths to approve these medicines. That now is coming down to probably around 500 or 1,000.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“Her example, and by just being a kid, taught those big people a really important lesson. And I think it was a real lesson about the importance of diversity and what people with special needs and physical disabilities, whatever the challenge in life physically or medically may be, can bring such a richness to the life of others. And for me as a parent, that was a real lesson that, you know what, little people can teach. So maybe it is true that everything you needed to learn in life, you needed to learn in kindergart”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“And she didn't have to teach those kids. What I found is first day kids asked came up and said, you know, kind of looked at her funny, said, what's wrong with you? And she said, oh, I have a disease. My legs and arms don't work, but my mind does. And they look, they'd shrug their shoulders, 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. So think about it. What ended up happening was Megan without ever knowing it.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“And then you feel sorry for your kid that somebody would think that of them. And then he looks at me and says, John, and I tell you this for a reason. He said, in the last few weeks, I've gotten an awful lot of letters and calls and emails. And now I'm thinking, how is he going to tell me that she can't go to first grade here? And he said the messages is all consistent. It's all the same. And it's, you know, Dr. Ginsburg, look, we know it's difficult and this is hard to ask. Our son or our daughter learned so much and had such a great time with Megan in kindergarten. If there's any way that they can be in her first grade class, we'd owe you the world. And I thought, and then you get emotional thinking about it. And then I thought about, you know, Megan was just trying to be a normal kindergartner.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“But boy, kindergarten, such an important year, and my son or my daughter just won't be able to learn in that environment. Could you please not put my child in that girl's class And I'm looking at them and I'm thinking, first of all, your feelings are hurt.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“Get there. And it's, you know, these kids get the little hats and diplomas, and it's really cute. It's fun for any parent and special for any little kid. And then Megan was called to get hers, and she got a lot of extra applause. And I was really proud. And the principal came over to me and said, John, can I talk to you? I said, sure. He goes, you know, Megan had a great year. You were right. I said, yes, thank you so much. What you did was remarkable. And it really was. He said, but I want to share something with you. He said, right after you gave that talk eight months ago. He said, I got a lot of phone calls and letters and emails from those parents. And the message was all the same. And it was basically, look, beautiful young lady, we feel so sorry for her.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“Favor, would you come in and talk to all the parents of the incoming kindergartners, dispel any myths, rumors, whatever. So I did that, came in, told them what Pompeii disease is, told him you kids can't catch it. And everybody kind of looked at me and shrugged and kind of half-smiled. So I figured, okay, I bored them, but I did my job. So Megan started kindergarten. Kindergarten year was great for Megan. I mean, she loved it. She was the gym teacher made up special routines for her in wheelchairs. She was going to the birthday parties in the middle of that kindergarten year. She started getting that medicine such that by the second half of kindergarten, she was so much stronger. So then you go to kindergarten graduation.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“So we called the local school. We had just moved to Princeton and hired the Crowleys. We're here and got to register our daughter, Megan, for kindergarten. And oh, by the way, she's got this little issue you should probably know about. So they're like, okay, so they came and they visited the principal, the child study team. They met Megan, and they came back. The principal called me a day later, said, John, great young lady. I just don't think our school, our public school is equipped for Megan. We've never had a kid on a ventilator with a nurse and in a wheelchair, especially a kid. I didn't even tell him who may only live six or twelve months. And I said, you know, I said, doctor Bob Ginsburg, wonderful principal. I said, Bob, I said, I really think that she thrives around being with kids, with people. And I don't know how long she's going to live. I hope a long time, but I don't know. Would you please give it a shot? And he said, okay, thought about it. Called me back. Said, okay, Megan can come to kindergarten. But John, would you do me a...”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“Sexual orientation, whatever it may be, that's part of the richness, the fabric of life. Took me a while, even as a parent of actually three special needs kids, to realize that that's a gift in itself, and it adds to the diversity in life. I'll tell you, so we talked about 2002, how that was a really tough year. Right after that beach trip, after the kids were diagnosed. I thought, my god, Megan's only going to live a few months. What do we do? And Eileen said, here's what we're going to do. We're going to send her to kindergarten because that's what kids do when they're five years old. And I push back and then finally said, well, okay, let's see.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“So we tried really early to be a so-called normal family. And I could tell you there was a lot of times early in life where we wanted, I wanted to have air quotes, normal kids. And sometimes I was mad and angry and frustrated. And sometimes I behaved very irresponsibly because I wanted a normal family. Wanted to do normal things, wanted to just be able to take the kids and go to Burger King at night, go to the movies, things that, you know, all of our friends and many of our friends are doing. And then I realized that, and I tried teaching this to the kids, you know, we're all different. We're all special. You know, Megan and Patrick people may look at the two of them and I tell them, I said, yes, people can look at you and realize you're different. But look, it's these differences in life that make us so special. We talk about obviously racial diversity and”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“Right at the start of the Iraq war was 2003, and there was a young man there who had lost both his legs, a 19-year-old corporal in the Marine Corps. And they were giving a speech and people going on. And I looked at John, and his eyes were wandering. He's got ADHD, and I'm just wondering, is he getting it? And I just looked at him, I said, John, do you know what they're talking about? He said, yes, daddy. What are they talking about? He said, that young man fought for our country. He lost his legs and all these people in the cemetery lost their lives. He is a hero and they are heroes. And I just thought of like, okay, he got it in his own way with his own special needs. He was able to articulate that it's bigger than him.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“Yeah, so we often kind of get enveloped in our own little universes. And even when we think we're helping others, sometimes we think a little bit too much about ourselves in the process. I try to teach our kids that there's a bigger purpose to life. I give an example. We took my son John. Now, John does not have Pompeii 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. Many, many, most parents do that. I took him down when he was little every year to Washington, D.C. We do a father-son trip. And I 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.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“And I've seen that measure of resilience in these kids. I've seen it in our kids in spades. And I've certainly seen it in many, many other children with a lot of rare and devastating diseases. And because of that, I kind of kid around, 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.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“So, I would say that we raised our kids, and my daughter Megan would say that she raised us and somewhere in between lies the truth. You know, some of the basic rules in life you want to teach them. So, you know, you try to teach them about hard work, about independence. One thing that's remarkable, though, I've learned with kids with special needs, and I've seen that not just with our kids, with lots of kids we've met over the years, is indifferent from adults I've known who suffer with some awful diseases. These kids who live with these rare diseases, kids who live with cancers, they never feel sorry for themselves. And that's something I as a, you know, Eileen and I as parents could never teach them. That just has to be part of who they are.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“When we showed up, lots of getting used to the nurses who came out to help. They were all going to college again. And they were excited, but apprehensive. We had planned for almost everything we could. And we had the nursing schedule, the hospital supply. They had the hospital bed moved in. Megan wanted to live a full, wants to live a full college life. So she wants to be in the dorm. So she was in the dorms. One thing we hadn't thought about is Megan's, you know, 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 is 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.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“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 aids and tutors. It was still a big show getting her out to South Bend. Where I was most proud, I told Megan, I said, Megan, if you get in, we'll get you there and we'll make sure with the university's help that we get you through.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“You know, with Notre Dame's mission, it's certainly welcoming of people who are intellectually capable of the rigorous academics, but who have disabilities. So we haven'ted in, we've had kids go through, we've had blind students, deaf students. There was a young man, Matt Swinton, who graduated with spinal muscular atrophy a number of years ago, Duchenne boys. So people with severe difficulties, Megan is the most physically challenged student ever to go through Notre Dame. She's the only student to have to live in a wheelchair on a ventilator with 24-7 nursing. She was hesitant to go so far away to school. I said, Megan, if that's where you think you want to go, we will make this happen. So then I called folks at Notre Dame who I know I said, okay, Megan's coming. What are we going to do? And they said, don't worry, we'll do whatever we need to do. And I got to tell you, Tim, they stepped up.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“So, the kids today, Megan just turned 20. Patrick is nineteen in March. They're 15 months apart. Patrick is a senior in high school, and Megan is a sophomore at Notre Dame.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“So I realized then, okay, I think we have to go do this again. We need to find next generation therapies, newer potentially better medicines. And that's what led me to found this company Amicus in 2005. Do it again.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“Biotech is a really tough business, Tim, and almost everything we try, it doesn't work. But when it does work, it really is the best job you can have. So the medicine fixed the kids' hearts. For a while, it made them stronger, particularly Megan. After about a year or so, the strength improvements plateaued. And then slowly began to regress. So, a year into treatment, they were much better. Their lives were saved. We realized it was an effective first generation treatment, but it wasn't a cure. So, what I realized then at that point, okay, I think we just bought a lot of time and some quality of life for the kids. They still on ventilators, still in wheelchairs, but it helped them enormously.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“Had two x-rays, one of Megan of her upper body, and you saw this. You didn't need to be a cardiologist, and you saw this enormously a large heart that was before her treatment 12 weeks ago. Then she put up the one that was taken earlier that day, and it was night and day. Her heart had shrunken back to normal. And I took it and I pointed, you know, took it to Megan's bedside, showed her, explained, and she was all of, you know, what, six, six, five, six years old at the time, explained to her she's a kindergartener. And I said, Megan, this means you're going to live to be an old lady. And she looked at me and put her arm around me and gave me a big hug and a kiss. Just said thank you”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“Megan and Patrick began receiving that enzyme therapy. It's in every other week, IV administered therapy designed to replace the enzyme that they're missing. So they started that in January of 2003, and then we waited. We got the first results back in early April. And the doctor came in with a smile, and Megan was sitting up in bed. And before she even got to the echocardiogram reports, she turned on the x-ray, you know, the light box.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“I could take him and I said, Yes, I can make this. Look at this. And that was pretty unusual. People usually don't make those levels of investments and do it in a very unconventional way. So that was a good decision. Lots of bad decisions, but that was a good one.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“So we actually invested and made a plant. I couldn't build a greenfield plant, cost too much, takes forever. I met some entrepreneurs who had just begun to develop a system of basically building a building within a building, a clean room. And we could do it for a couple of million dollars, and we had raised about $27 million at that point. So we did that and we did it at risk. We didn't have the definitive proof of concept in animals. But we did it very smart, very fast, and very effectively. And although we never made the enzyme in that plant, because by that point I realized I probably need a bigger plant given the scale of what we needed to manufacture. Had we done it, it could have gotten us in the clinic. And where that was successful is it gave me a fallback if any of these partnerships at the acquisition didn't work. Instead of the big company on the other side saying, well, you need us because you can't make it.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“We were successful. So, one of the things we did, I knew I had to make this drug in a way that we can deliver it to humans. So it's known as a GMP facility, good manufacturing practice, exactly. So you're familiar.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“11 person company because you're either a VP or you weren't in the company. And he said, well, I used to be a hospital tech. He said, I could do this. I said, well, yeah, let's try it. So when you do this, you've actually got to hit a really narrow vein in the tail of these animals to give it the injection. That's a really tough stick. So my buddy who hasn't drawn blood in about 10 years, he's there. We do put gloves on in the lab. puts a little bit of the enzyme into the mouse. And I look at him and he looks at me and he goes, I think I got it in. Like, okay. So we do that once a week for four weeks, and then our scientists sacrifice, grind up the tissues. That's not how you do animal experiments. And I can assure you that that study failed. And I can give you a whole bunch of reasons why it failed. So those are the hard lessons of things you shouldn't do. They were things, though, that we did.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“So, 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? Do the animals get stronger? Typically, you'll do that at outsourced companies that these are the experts. Takes quite a bit of time and done, again, in a very rigorous fashion. Once we had made a little bit of that enzyme in the lab, I was just dying to see, is this going to work? So, you know, we had genetically, actually the NIH had genetically engineered mice to express or not express the protein to give them the pompe disease, which my daughter Megan still thinks is the meanest thing imaginable. And, you know, it's done very ethically. And we had these animals. I had the enzyme. So it was with one of my colleagues who is a senior vice president and my then.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“And then we sat down at dinner. We said Grace, and I said, I have something else to share. And I read the card and the letter. That was a good Christmassy”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“So I got the mail that day. It was Christmas Eve. And I looked at it and I read it. I cried. And I wanted to run in and share it with Eileen. I wanted to share it with Megan, with Patrick. And I said, you know, I'm going to wait a little bit. We had family, we had Eileen's family, her mom and dad, my mom coming over for Christmas Eve dinner. So they came over and we had a glass of wine and celebrating and nice Christmas. And Poppy, the kid's grandfather, read Was the Night Before Christmas. And I was just dying to show this. I was in really good mood. I leaned to know why I was in such a good mood, figured if it was the cabernet, maybe.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“We got a card, a letter, first a phone call, and then a letter came Christmas Eve. And it was a Christmas card, a beautiful picture of the Blessed Mother on the cover with a copy of the hospital letter approving the study for Pompeii disease at their center that would include our kids. That was the best Christmas present we've ever gotten.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“And then right around Thanksgiving, we learned that they were able to meet with an expert. Who knew the disease, who was at St. Peter's Hospital in New Brunswick, New Jersey, and that they were going to present it to their institutional review board for approval. I learned about it, was thankful, hopeful, prayerful, but just to make sure, I resigned, I quit, so that I did that the day before the hospital review board met. I didn't think it would be an issue. It wasn't an issue, but I wanted anybody to make an issue out of it. So I quit and I waited to hear.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“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. Gen Zime, 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 executives, children of an executive of the company whose drug was being studied. So now I'm like, you've got to be kidding me. That then became not only a hard day for me and Eileen and the family. Now it was a hard day for my colleagues at Genzyme because they were fighting very hard to get our kids treated at that point. And by that point, I had really just, I don't want to say given up, but prayed a lot, thought a lot, spent a lot of time with the kids.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“And made great sense, scientific sense, but it didn't follow the protocols within the company. And I thought at that point, you know what? Better to ask forgiveness than permission. Let's just get it set it up, take the heat, heck, they could fire me. I don't care. When people found out it was very, 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 was a lot of conversations in the company. And ultimately, 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.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“By that, that was the most desperate I ever have been in my life, Tim. Literally, our kids' lives were on the line. At that point, I could care less about our career. We were blessed to have actually made some money so that we had a financial future that was secure for the kids. And that was wonderful. 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, Reached out to doctors who I knew who were going to be a clinical site for the study. Ask 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.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“Thankfully, a lot of good doctors, good people at Genzyme, and eventually a small Catholic hospital in New Jersey agreed. St. Peter's University Hospital in New Brunswick agreed that they would treat our kids. But that was months and months of back and forth discussion, negotiation. It makes for some very dramatic scenes in the movie. Gita, Anand captures it in her book very well. And then by January of 2003, January 9th, what would have been my dad's birthday? My kids were treated. They became the 27th and 28th patients in the clinical study. And that was a great day.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“I gotta 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. He 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 an Pompeii infant's. And that he knew my kids wouldn't qualify. That was a really, really tough day.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“Yes. So, what you see in the livers, their livers became enormously enlarged. That wasn't actually a immediate life-threatening aspect. It was the cardiac and then the pulmonary breathing. And then obviously quality of life with a loss of skeletal muscle strength. So when we were at Genzen, we were moving 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.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT
“So by the time we came to Gen Zyme, Gen Zyme had other Pompeii drugs in development. We brought our technologies in. We had a choice of drugs and technologies. We ran a series of experiments and we backed one. It was one that came from the Genzyme Science Labs. Children began to be treated. We saw some remarkable results early on. So in Pompeii disease, not only are those skeletal muscles weak, the cardiac muscle is very weak. By that point, Megan and Patrick, who were four and two or so years old, not only were their muscles weakening, not only did they need ventilators to breathe, their hearts were so enlarged that that was the most life-threatening aspect of the disease.”
2017-02-28 · The Tim Ferriss Show · #225: John Crowley -- The Real-Life Captain America and Bruce Banner (Seriously) · IDENTIFIED FROM THE TRANSCRIPT