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John Crowley — The Real-Life Captain America and Bruce Banner (Seriously) (#225)

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john crowley

This is an incredibly powerful episode of the podcast.

John F. Crowley is the Chairman and CEO of Amicus Therapeutics, a publicly traded biotechnology company, which he helped found in 2005 and is now a 300+ person company in 22 countries. John’s involvement with biotechnology stems from the 1998 diagnosis of two of his children with Pompe disease — a severe and often fatal neuromuscular disorder. In his drive to find a cure for them, he left his job and became an entrepreneur as the Co-founder, President, and CEO of Novazyme Pharmaceuticals in 2000, a biotech start-up 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 are the subjects of a book by Pulitzer prize-winning journalist Geeta Anand, The Cure: How a Father Raised $100 Million — and Bucked the Medical Establishment — in a Quest to Save His Children. The major motion picture Extraordinary Measures, starring Brendan Fraser and Harrison Ford, is inspired by the Crowley family journey. John is the author of a personal memoir: Chasing Miracles: The Crowley Family Journey of Strength, Hope, and Joy.

John also served as a commissioned intelligence officer in the U.S. Navy Reserve from 2005-2016. He was assigned to the Joint Special Operations Command (JSOC) and is a veteran of the global war on terrorism, with service in Afghanistan. He graduated with a B.S. in Foreign Service from Georgetown University, and earned a J.D. from the University of Notre Dame Law School and an M.B.A. from Harvard.

He previously served (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.

Enjoy!

You can find the transcript of this episode here. Transcripts of all episodes can be found here.

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

Want to hear another interview with a superhuman scientist? — Listen to my in-depth conversation with Dom D’Agostino. In this episode, we discuss fasting, heavy deadlifts, and the end of cancer (stream below or right-click here to download):

#117: Dom D'Agostino on Fasting, Ketosis, and The End of Cancer

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QUESTION(S) OF THE DAY: What was your favorite quote or lesson from this episode? Please let me know in the comments.

Scroll below for links and show notes…

Selected Links from the Episode

  • Connect with John F. Crowley:

Facebook | LinkedIn

Show Notes

  • John explains what it’s like to be afraid of heights and practice fast-roping drills with Navy SEALs. [08:00]
  • What John learned about sudden loss in childhood. [12:03]
  • Was John like Captain America even at age 10? [15:52]
  • In high school, what did John think he’d be when he grew up? [19:41]
  • Mentors who had an impact on John during his early years. [20:26]
  • What does a curriculum at The School of Foreign Service at Georgetown entail? [22:44]
  • John’s special connection to the University of Notre Dame. [23:49]
  • What a class at Harvard Business School is like for someone who’s not good at math. [28:22]
  • The events surrounding John’s children being diagnosed with Pompe disease. [32:04]
  • How looking for a cure became a full-time job. [37:00]
  • On the difficult protocols involved with getting John’s own children treated. [47:10]
  • The best Christmas present John could have wished for. [50:11]
  • Conventional rules of the biotech business John broke in pursuit of a cure. [52:16]
  • Early treatment: improvements and plateaus. [55:46]
  • How are Megan and Patrick doing today? [58:03]
  • On the principles of good parenting. [1:00:57]
  • Advice for parents of children with special needs. [1:04:23]
  • “Little people can teach us big people an awful lot if we just listen.” [1:05:53]
  • How does one create an economically viable company when developing drugs to treat rare diseases? [1:11:08]
  • What drives John today, and how did he choose the name “Amicus” for his company? [1:13:29]
  • What prompted John to get reinvolved with the miltary? [1:16:09]
  • Characteristics that make John capable in the elite military world, and what carries over from his business experience? [1:17:23]
  • As someone who’s so busy on multiple fronts, how does John keep from feeling overwhelmed? [1:20:07]
  • Most-gifted books. [1:21:34]
  • Inspiring, but underrated or lesser-known leaders. [1:23:22]
  • How would John advise someone to train for resilience? [1:28:01]
  • How does one balance living like there’s no tomorrow with the planning required for long-term goals? [1:33:02]
  • Altruism: where to begin? [1:41:43]
  • Hopes for the future of genetic medicine and the pursuit of longer lifespans. [1:44:02]
  • Likely breakthroughs ahead. [1:45:46]
  • John’s daily habits. [1:48:38]
  • What a Crowley evening workout looks like. [1:52:32]
  • Ways of coping with insomnia. [1:55:03]
  • What is grace? [1:56:40]
  • What would John’s billboard message be? [1:56:58]
  • Parting thoughts on healthcare and high heeled wheels. [1:57:30]

People Mentioned

The Tim Ferriss Show is one of the most popular podcasts in the world with more than 900 million downloads. It has been selected for "Best of Apple Podcasts" three times, it is often the #1 interview podcast across all of Apple Podcasts, and it's been ranked #1 out of 400,000+ podcasts on many occasions. To listen to any of the past episodes for free, check out this page.

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56 Replies to “John Crowley — The Real-Life Captain America and Bruce Banner (Seriously) (#225)”

  1. Tim,

    Thank you for this (and all of your podcasts)! As a father and soon to be new father I was completely touched by the story and delivery.

    Thanks to you both. Ever grateful for your content.

    Phil

    Reply

  4. Only one hour in, already touched and couple of tearful moments, coming from a dude who rarely if ever cries. Thank you Tim for what you are doing!

    Do you have at recommendation of which to check out first, the book or movie?

    Reply

      3. Tim, thanks so much for this show! I know John from the Navy and he is a great guy. I was so stoked to see another person I know personally on your lineup! I appreciate your awesome content.

  6. Favorite quote:

    I am a big beliver in going deep. Think about the ripple effects of meanigfully changing somebody life.

    Reply

  7. Tim— It’s important to you to be a teacher. By sharing episodes like this one, you’ve proved to be a teacher of the highest sort. Thank you for sharing this inspiring and uplifting podcast. Mr. Crowley’s story is the kind that invigorates the desire to seize and live this life fully. Thank you again. So much gratitude.

    Reply

    1. One question that I’ve pondered extensively recently is one that was touched on here :

      Is it more important to make a difference for a greater amount of people or a deep difference for one/small amount of people.

      I’ve come to my conclusion following this episode.

      Reply

  8. Tim, John is indeed a superhero. I live in Colombia and I believe it is a shame that due to the language barrier, not so many people are able (or willing) to listen to this gem !!!! Congratulations on this episode (And I am one of those guys that have listened to at least 95% of your podcast episodes)

    Reply

  10. Tim I love your interviews but I have to say this one was just special. When I finished listening I was so impressed that I had to put it back, and enjoyed it one more time.

    Being a father of 3 healthy girls I was very emotional listening John story. Specially I was very touched by his love, his compassion, his resilience in face of so many challenges. His story and determination made me want to be better in all dimensions of my life and willing to accept that “It`s bigger than you”.

    Thank you! This interview was a blast!

    Reply

  11. Tim, the humanity of this episode was great & loved the discussion on Resilience – can you teach it. Its definitely a skill that can be improved with understanding & practice. [Moderator: link removed]

    Reply

  12. Did anyone else notice that John Crowley’s daughter Megan was present at Trump’s speech to Congress this week and was actually mentioned by name in the speech?

    Reply

  13. I loved the part where John talks about ‘the importance of diversity-lesson’ other parents and children experienced after sending Megan to a regular pre-school. Diversity is not only important but it is the crucial notion that give depth of feeling to our existence. A painting using 2 colours will never have as much details and possible amazements than the same painting painted by the same artist using 2 000 colours. People with disabilities were once revered in Ancient China. ‘The tallest, strongest, straightest tree gets chopped down first’ They believed that people with disabilities were special and important.

    There is a mathematical perfection to this life. If you go through a specific hardship, you are given the strength to sustain it. It’s just how things are. If your daily life contains more hardships that most people’s daily life, you have a stronger spirit, a stronger heart and a stronger attitude. We need these people as teachers – That includes parents of disabled children –

    Some of my favourite stories are towards the end when you and John talk about investing in regular illnesses medicine research vs. rare diseases. We are more intricately connected to each other that it may seem. A deeper understanding of one specific disease leads to a better understanding of the human body which might affect or unlock the key to other researches. At a specific level of consciousness, one experiences life from two perspective simultaneously: from a unique perspective and from a united one. If one of us win a battle, we all win. ‘As above, so below’

    Thank you Tim for the diversity of guests you bring onboard. Diversity makes life (and podcasts) juicy and interesting. Thank you John Crowley for a great interview and priceless inspiring life stories. I love Megan’s blog.

    Reply

  15. 40 minutes in I had to hit pause to thank you. I’m not sure if I feel inspired, or humbled, or grateful. I have two girls who I love so much, I can’t find the words. John’s story is just incredible. Thank you!

    Reply

  16. Tim,

    That intro was immaculate. Past few podcasts have been beyond incredible. Thanks for deconstructing the best.

    Cheers,

    Mickey

    Reply

  17. Tim, I have been a daily listener for 2 months now and am loving the podcast but this one really moved me. I could listen to John Crowley all day; he’s engaging and had me completely engaged as he relayed the story of his incredible journey. This is one of the best yet!

    Reply

  18. Tim, John,

    Thank you both for your valuable time. My favorite part was making the decision to leave the podcast on after picking up my kids (Zoe 8, Zach 5). After a couple of minutes of listening, after John’s children Megan and Patrick have been diagnosed; however have not received treatment my daughter asks me to pause and asks ‘Daddy what is Pompe disease?’. I explain and then she says okay, please turn it back on. We are planning when we can finish the podcast together, she didn’t want to turn it off when we got home. The story so beautiful, inspiring and wonderful to hear John tell it.

    The podcast also answered my question from earlier today, where to spend my time reading inspiring news: highheeledwheels.com – I read the story of Megan’s 18th birthday present to Grace and Make a Wish Foundation. Your stories are making me cry how great and inspiring humanity can be.

    Thanks,

    John

    Reply

  19. John’s account of his journey was RIVETING! There is nothing like the combination of fierce determination and love to accomplish the miraculous. What an amazing man! And I’m guessing his wife (an unsung hero???) is amazing too.

    Reply

  21. WOW

    Amazing podcast. I had goosebumps hearing the story. Just amazing and moving.

    Amazing job interviewing this amazing person 👏👏

    Reply

  22. Tim, I’ve been enjoying your podcasts for a year now, Jacko the Navy SEAL was my favorite to date, but John Crowley has not taken #1. I’ve listened to most of it as I drove home from Dublin last night, a truly inspiring story told in such a humble, selfless way. Makes me feel so grateful for the 4 healthy children which we have.

    Congratulation on the way you very sensitively drew out John’s story.

    Reply

  24. Incredible. Inspirational. Phenomenal. Thank you, Tim, for the depth, honesty and humility that comes through from John in your podcast. Wow. Amazing. The best Tim Ferris podcast I have ever heard.

    Reply

  25. An especially poignant podcast episode. Teary-eyed during the stories of John and the football helmet and Megan and her kindergarten and college classmates plus the humbling nature of having kids. Thank you for sharing your incredible story John.

    Reply

  27. I’m absolutely enthralled by your podcasts. All so interesting. I always learn something and can’t wait for the next one. I’ve heard you ask questions from fans in some podcasts. Is there a way to find out who your upcoming interviewees are so we can submit questions for you to ask?

    Thanks for what you do!

    Bri

    Reply

  29. Tim,

    Could a ketogenic diet help mitigate Pompe disease? If you switch over to ketone bodies as your primary fuel there will be less glycogen being produced and, maybe, less of a problem with stored glycogen clearance. In Peter Attia’s The Eating Academy Ketosis 101 posting he cites measurements (muscle biopsies) of a 30% to 50% drop in glycogen levels stored in muscle for people in nutritional ketosis. This might only help somewhat, but perhaps nutritional ketosis could help as an adjunct treatment. What you really want is not only minimal glycogen being produced but also minimal glycogen being stored. A ketogenic diet gets you half way there.

    BTW, great show, as usual. Regards,

    Don Pettibone

    Reply

  31. This podcast resonated for me, as my youngest sister had Late Onset Pompe Disease. Had it not been for development of the enzyme replacement therapy due to the efforts of John, Duke University and Genzyme, my sister would have ended up in a wheelchair and on a respirator. The bi-weekly treatments, paid for under Canada’s healthcare system, halted her physical deterioration and she was able to enjoy life, perhaps a bit too much …. ending up getting killed in a motor bike accident last year. Probably not the way she thought she would meet her end after first receiving her diagnosis.

    Many, many thanks John and Tim.

    Kevin Flaherty

    Saigon

    Reply

  32. Many thanks for this show. First I didn’t want to hear hear it as the title hadn’t caught me and there are still other episodes I haven’t heard. However, I’m happy to changed my mind.

    Just a warning to pregnant women or partners of pregnant women: This episode is really touching your heart a lot. I totally agree to what Andrey said: A lot of tearful moments even for a “strong man”.

    Reply

  33. Hi Tim,

    I’ve never posted or commented on any blog, video or such media in my life before. I was recently turned on to your podcasts by a friend of mine, and oh wow are they great, so couldn’t resist to take this opportunity to try and connect with you.

    The way you communicate with others and analyse situations is second to none; the information you derive from interviews such as this one John Crowley is simply inspirational.

    As a 23 year old and aspiring ‘entrepreneur’, you are changing the way I perceive the world around, and just as importantly the way I perceive myself.

    I’ve come to the recent conclusion that having a strong mentor would most certainly change my life for the better. If you ever had a spare 10 minutes, I’d love to get the chance to chat. It would also be great to be able to share with you the thoughts and views of the world from a young and recent business graduates perspective.

    All the best, and keep up the fantastic work

    Callum

    Reply

  34. Hi,

    Can you please create a post geared towards helping those with health problems and disabilities find financial success?

    Reply

  35. Wow, this is so inspirational. I am new to the blog and to the whole Tim Ferris thing. 🙂

    I’ve just started to read the 4 hour work week. Amazing and inspiring. I am going to try and follow your principles to have more free time. You also said in your book that it is easier to do the unrealistic than the realistic. So Im doing just that. Normally I would not try to contact a seemingly unreachable person, but you made it sound so easy, so this is me contacting you (the unreachable). Not sure what Im suppose to say, so ‘Hi!, I am learning to take back my time. I do not necessarily want to travel the world and live in luxury, I just want more time with my 1yr old and buy our dream home.

    Thanks for inspiring us through your books, blog and the interesting interviews. Im learning so much.

    Regards

    Ereen

    Reply

  36. Hey Tim,

    Love your podcasts. Truly inspiring. Do you have any tips for reaching a wider audience? I’m starting a business and documenting the journey via blog and want to reach as many people as I can with the message that anyone, even someone with very few skills like myself, can achieve their dreams.

    Reply

  37. Hi Tim,

    I am your f*in goddess, a damsel in distress that need your help. Come get me and let’s do crazy shit together. I promise it will be fun, lol.

    Reply

  38. Hey Tim-

    Love the show! Have you ever heard of The World Institute of Slowness in Norway? I was thinking it might be cool to interview the founder Geir Berthelsen for your podcast.

    Kind Regards,

    Ben

    Reply

  40. As a mom of a special needs child this resonated so much with me, especially when he talks of having to reorient what “normal” looks like for a special needs family. Great interview, and what an inspiration to all of us to dig deeper and keep working to give meaning and significance to others.

    Reply

  41. Hey Tim,

    This podcast had me with a lump in my throat. As a father of two I found it to be such an amazing story and I am so grateful to have heard it. Keep up your amazing work, and thanks for all that you do and share with us.

    Reply

  42. I have listened to most of Tim’s podcasts as have a number of professional friends of mine. One of the benefits of the show is it allows long distance friendships to bond over the themes of the show (almost like a book club). Tim may not even recognize this benefit to the listeners. Most are good, but this one stands out as one of the best. It is moving and emotional. As a business owner, and father of four young kids, most of the guests he has had on are unrelatable to my life given the difficulty one can have balancing work, dad, fitness, and husband. This episode was truly amazing and I hope Tim has more guests on that continue this type of narrative.

    Reply

  43. Wow, this dude really is a superhero it would seem. How does someone achieve so much in such a short lifetime? Kudos!

    Danny

    Reply

  44. Hi Tim,

    What a show !! I was anxioustly waiting for my next commute to listen. Lots of tears…John is simply amazing and the trueness he uses to tell his story is simply phenomenal.

    I even droped a few others tears when I told the story to my wife in… 10 min… his Dad taken during service, 3 kids with handicap, race against time or his kids would die, resilience, perseverence… once again: amazing.

    It’s bigger than you !!!

    Cheers and thanks for his show !

    Reply

  45. Excellent Tom! For me this is your best episode … It specialy inpressed me how calm is John and how well he transmits his experiences. Thanks from Barcelona!

    Reply

  46. Double R Double S,

    Thank you for all of the amazing things you have unselfishly shared for so many years. Your podcasts frequently make me laugh and always leave me with something to ponder.

    John’s stories gave me goosebumps (the gold football helmet he still has) and made me cry multiple times. This man is a saint. Thank you for bringing him on your show.

    John, thank you for what you have done for so many. Thank you for serving our country. And, thank you for sharing.

    Double F Steffani

    Reply

  47. Thanks for another great episode Tim. I particularly enjoyed the discussion at approximately 1h 40min where you raised the question of whether to focus efforts narrow and deep, or wide but relatively more shallow. I appreciate your candour in describing how you struggle with this. This discussion inspired me to share some thoughts in a completely unsolicited manner! It’s ok, I don’t expect a response. Taking them time to describe this has helped me to clarify my own thoughts and is therefore worth it in its own right.

    Here goes!

    Tim, you described how there are many great arguments for both deep/ narrow and for wide/ shallow, and how this can be very confusing. It struck me that the answer might be, ‘it depends on who you are’. I’ll try and explain.

    When I look at game changing ideas or practices, the one commonality that I see is that they are BOTH deep and wide. You mentioned in the episode that deep vs wide might be a false dichotomy. I think that you were right. For an idea or practice to be big and game changing, someone needs to have gone deep first. But to gain traction, someone needs to take it wide. IT could be the same person. It might not be.

    For example, let’s look at Wim Hof. Wim has undoubtedly gone very deep into his practices. But those practices have been gaining much more attention and traction recently as people such as yourself have created platforms by which to share those practices widely.

    Following this train of thought, if a child was to ask me whether to go deep or wide, I would say ‘both’, because both are necessary. But you and I aren’t children. I’m 29. You’re a little older. We both already have life experiences, skills and baggage to bring to this decision. It could be that those skills make us more suited to one or the other.

    It is my hypothesis that the reason that all the great arguments either way are confusing (despite their great info) is that they miss the critical element… you! With your skills, what are you most suited to?

    In my opinion the idea or practice that we are trying to influence will need both depth and width, but not necessarily from us individually.

    I suspect that while we can probably set ourselves up with some guiding principles, we can probably only figure out what is the right path on a case by case basis.

    Thank you again for another really great episode. Have a good one!

    Jack

    Reply

  48. My daughter has Gyrate Atrophy a rare metabolic disorder I found this story very uplifting and inspiring! I one day hope to find a cure for my daughter 🙂 Please pray for my daughter. Thanks so much for all you do Tim.

    Reply

  49. Thanks for a great podcast with a great from my industry! On the topic of Genentech and the donut shop, it’s almost true. It was a donut factory, with no retail shop, high on the hill on Oyster Point. Genentech did build all around it until they finally gave in and sold a few years ago. It was torture for those working at Genentech, especially for those of us just down the hill, as the smell of fresh donuts wafted around campus, but we couldn’t buy.

    Reply

  50. Great Interview, had tears in my eyes. What a life Story – what is success? If you ask me nothing is bettet than, against all odds, beating death for your children

    Reply