As part of our series about the “Five Things You Need To Be A Highly Effective Leader During Turbulent Times,” we had the pleasure of interviewing John F. Crowley.
John F. Crowley is CEO and Chairman, Amicus Therapeutics. 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 position at Bristol-Myers Squibb and became an entrepreneur as the Co-founder, President and CEO of Novazyme Pharmaceuticals, 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 and John continued to play a lead role in the development of a drug for Pompe disease as Senior Vice President, Genzyme Therapeutics.
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 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 is also a commissioned officer in the U.S. Navy Reserve, assigned to the United States Special Operations Command 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. The Crowley family was the recipient of the 2011 Family Exemplar Award from the University of Notre Dame. He is also a member of the University Council on Science & Technology at Notre Dame. Currently, John serves as a member of the Intellia Therapeutics, Inc. Board of Directors. He is the former 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.
Thank you so much for your time! I know that you are a very busy person. Our readers would love to “get to know you” a bit better. Can you tell us a bit about your ‘backstory’ and how you got started?
My story began when I was a young father. Two of my children, Megan and Patrick, were diagnosed with Pompe Disease as babies. Pompe is a rare neuromuscular disease affecting 1 in 40,000 Americans which causes muscles, including the heart, to quickly degenerate. Doctors told my wife and I there was no treatment for Pompe Disease, let alone a cure, and that our children would likely live short lives.
We were devastated, but committed to saving our children’s lives, and also the lives of thousands of other children suffering from rare diseases. I left my job with Bristol Myers-Squibb, and took a leap for the sake of our kids to join a biotech startup firm, Novazyme, which researched treatments for Pompe. We never wanted to look back and wish we had done something more. Time was an enemy as much as nature.
In 2001, Novazyme was acquired by Genzyme Corporation and I continued to play a lead role in the development of a therapy for Pompe disease as a Senior Vice President overseeing the global Pompe program. I credit this therapy as ultimately saving my children’s lives.
Today, I am the CEO and chairman of Amicus Therapeutics, a global biotech and rare disease company, researching and developing life-saving treatments for a number of rare diseases including Pompe, Fabry Disease, and Batten Disease.
Patrick and Megan are still in wheelchairs and still need ventilators to breathe but are living fulfilling lives now in their early 20s. Megan earned her undergrad degree at Notre Dame and is finishing a Master’s in Social Work now. Patrick works in a flower shop in Princeton. I couldn’t be more proud of how far they have come and where they will go next.
Throughout my journey, I have remained committed to transforming the lives of those living with devastating conditions. That spirit of empathy, compassion and tenacity is at the heart of the Amicus approach to advancing cutting-edge technologies.
None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are? Can you share a story?
I met my wife, Aileen, years ago back when we were just two kids at Catholic school in New Jersey. Ever since then, she has been a tireless source of support in my life. She has been there every step of the way, from the diagnosis of our children to the chaos of starting my first biotech startup, to our shift to remote working during the pandemic, and I know she will be there for me wherever this journey takes us next.
I also think of Amicus President, COO and my business partner Bradley Campbell. We first met in a consulting firm 23 years ago and have worked together to bring innovation to the rare disease community ever since.
Extensive research suggests that “purpose driven businesses” are more successful in many areas. When your company started, what was its vision, what was its purpose?
Amicus was founded first and foremost to discover treatments for those living with rare and devastating diseases. We chose the name Amicus, which is the Latin for “friend”, because we wanted to be the most patient focused company in the industry.
We operate with the belief that the patient perspective is pivotal in every step of drug development. Our patients’ voices are incorporated into our actions through Patient Advisory Boards that provide opportunities to examine the real experiences of a disease. As drug development experts, we know the best ways to research and develop therapies, but our patients are the only ones who know what works best for them. Their voices are the strongest and most crucial input at Amicus.
Thank you for all that. Let’s now turn to the main focus of our discussion. Can you share with our readers a story from your own experience about how you lead your team during uncertain or difficult times?
Most recently, I had to make the difficult, yet necessary, decision to move Amicus’s operations to remote work during the pandemic. The pandemic has been a difficult time for every person in every sector, and the Amicus team was no exception. It was a feat to move the operations of a global biotech company remotely but keeping our colleagues safe was of course the right decision. An added challenge was creating new protocols for essential employees such as our researchers and lab technicians, so that they were safe while they continued their necessary lab work.
During this time of great isolation and uncertainty, I made sure to increase communications to my team through company-wide calls and conducting one-on-one check-ins with employees across the company to learn how I could best support them not as employees, but as people. Initiatives centered around well-being were put into place and we even hosted a global Amicus Family Day, giving all employees regular days off to spend time with their families and loved ones.
Did you ever consider giving up? Where did you get the motivation to continue through your challenges? What sustains your drive?
Yes! But each time, I only had to look into the faces of our children and know that I had to continue. Perseverance is one of the greatest traits you need to succeed in biotech. Patients and family are my greatest motivators. If I gave up, so many of our patients, including my children, would not have access to the care they need. As a dad, I will never stop caring or fighting for Megan and Patrick. Likewise, as a leader in healthcare I will never stop the journey of improving the lives of patients. To see them live fuller and happier lives is the greatest motivator.
What would you say is the most critical role of a leader during challenging times?
Above all else, a leader must be unwavering and resolute. In the face of chaos, challenges and uncertainty, a leader is there to provide direction, reason, calm, and confidence. Even when the future is unsure, they still must instill confidence and build trust within teams through transparent and strong leadership. And with empathy.
Leaders can also instill trust and confidence with employees and stakeholders by speaking out for what’s right during challenging times. For example, following the tragic death of George Floyd in 2020, I shared an internal letter, which I also posted to LinkedIn, reflecting on the opportunities we have to change the hearts and minds of others by example. As business leaders remain among the most trusted institutions in today’s world, it’s so important that we continue to speak out on these issues and fight for what is just, even during challenging times.
When the future seems so uncertain, what is the best way to boost morale? What can a leader do to inspire, motivate and engage their team?
It’s important to preserve culture, even virtually. At Amicus, we have spent years developing a patient-first culture deeply dedicated to innovative care and independent thinking. I have always prided Amicus on the open communication that flows through departments. I continued this tradition by hosting one-on-one conversations with employees at Amicus during the pandemic, so I could truly listen and engage with my team and learn how I could best meet their needs during such uncertain times.
What is the best way to communicate difficult news to one’s team and customers?
Directly and face-to-face (even if that face-to-face is virtual). Never sugarcoat. Take ownership for setbacks and acknowledge when times are tough. Difficult news is best communicated with honesty, transparency and empathy. No one likes delivering difficult or bad news, but it is the responsibility as a leader. Part of that responsibility is to communicate the news as transparently and as quickly as possible — no one should be left feeling uncertain about news that could potentially affect them in a negative way. A responsible leader engages meaningfully and minimizes harm, which is exactly what honest and direct communicate provides.
How can a leader make plans when the future is so unpredictable?
Part of an effective leadership strategy is to ‘plan for the unexpected.’ Quick pivots and adaptability are key. This was especially crucial with the onset of the pandemic and having to switch much of our work to a virtual presence.
Is there a “number one principle” that can help guide a company through the ups and downs of turbulent times?
Steady leadership is the guiding principle that can help a company weather the ups and downs of turbulent times.
Being apart brought us closer together in many ways. Remote working and sheltering at home remind us of the importance of the human connection — and even with a reimagined hybrid work model ahead — we yearn for time together with our colleagues.
First, we now realize that many business aspects can be managed through telepresence, leading to a “customized” approach to each company position and more flexibility in how, when, and where we work. Second, managing significant parts of a global business through online platforms requires that we empower decision-making throughout all levels of the company. Finally, it has advanced even further the sense of urgency around our commitment to our mission for patients. Every day matters. We believe that this time of reflection and reimagination will lead to a stronger business and ultimately more and better medicines for patients with rare diseases.
Can you share 3 or 4 of the most common mistakes you have seen other businesses make during difficult times? What should one keep in mind to avoid that?
- Not being transparent with employees
During times of uncertainty, business leaders have a responsibility to be honest and open with their teams. Often, a company may not divulge information to employees as a way to protect them. This lack of transparency instead creates a culture of mistrust which harms all stakeholders.
- Not focusing on well-being/mental health
The idea of work-life “balance” has been shattered. Families are part of the work experience. Work is no longer someplace you go to. It is something you do. We need maximum flexibility to ensure and respect personal and family time within the work environment.
- Placing profits over people
The world is changing, and many companies are recognizing that businesses have an ethical and moral responsibility to see to the wellbeing of all its stakeholders. For Amicus, that means our patients, colleagues and communities must be prioritized over a single-minded focus on profits, and our patient-first mindset has always led the way. Focusing on profit as a sole objective, especially during a time of crisis, is not only short sighted but leaves you at a competitive disadvantage — stakeholders are demanding more accountability, more transparency and more responsible decision making, and rightly so. A company should invest in its stakeholders, treat people like people, and protect employees and the environment around them for a stronger and lasting business ecosystem.
Generating new business, increasing your profits, or at least maintaining your financial stability can be challenging during good times, even more so during turbulent times. Can you share some of the strategies you use to keep forging ahead and not lose growth traction during a difficult economy?
Amicus was founded with the core mission of providing equitable care and cutting-edge therapies for those living with rare diseases through continued innovation. This drive to accomplish our core mission is coupled with a culture of diverse perspectives and innovation which allow us to create the highest quality medicines possible. Our commitment to this cause is what has helped keep us forging ahead. Our patients’ lives are at stake — we must keep moving forward.
Here is the primary question of our discussion. Based on your experience and success, what are the five most important things a business leader should do to lead effectively during uncertain and turbulent times? Please share a story or an example for each.
- Embody calm and transparent leadership:
In the face of unprecedented events over the last year, the leadership team at Amicus has worked hard to make our company a place where our employees feel safe and valued, virtually and in person. This started with workplace mental and physical wellness initiatives and one-on-one check-ins with employees at the start of the pandemic to honestly listen to and engage with our colleagues.
This continued into the summer of 2020 when our country faced a great reckoning with the systemic inequalities that harm our POC and BIPOC communities. I addressed our entire company in an internal letter, renewing Amicus’s commitment to our employees and DEI principles. Words were put into actions and measures were put into place to ensure DEI would be at the forefront of every company conversation and create a safe and more inclusive space for all our employees.
- Remember a company is more than just a product or service:
We do business to benefit all stakeholders, and our goal is to grow stronger and more sustainable businesses for the long term.
We describe each and every team member at Amicus as a “passionate entrepreneur.” Comprehensive surveys show we score highly among our global employees on company mission and meaningfulness of our work. I’m proud of our Amicus culture, filled with extraordinarily passionate entrepreneurs, who are committed to the greater cause, and not just the bottom line of the business.
- Prioritize mission-driven innovation:
What began as a microcosm of compassionate decision-making ended up having rippling effects I never could have predicted. I am proud to be a part of my family’s extraordinary journey and to lead an exceptional team of passionate entrepreneurs dedicated to transforming the lives of those living with rare and devastating diseases — with integrity, inclusion, and heart.
I am driven by how to integrate one’s approach to technology with empathy, how to drive successful entrepreneurship, and how to maximize personal rigor to achieve one’s greatest potential in the service of others.
- Don’t be afraid to take smart risks:
At Amicus, we push ideas as far and as fast as possible. We aren’t afraid to obsolete our own technologies and therapies on the journey to discover newer and better ways to improve the lives of our patients.
We’re committed to developing next-generation medicines for patients living with rare diseases. With 1 in 10 Americans living with a rare disease, our dedication provides meaningful hope that patients will see improved treatments and potentially cures in their lifetime.
- Remain centered on the company’s core values:
At Amicus Therapeutics, our collective responsibility to our patients is truly unique. We recognize that we have a moral imperative to lead the biopharmaceutical industry towards more responsible business practices. Last July, I co-authored an article on how biopharma companies can take steps to build company cultures with integrity that go beyond compliance control measures.
I continued this commitment to ethical practices in healthcare and business by cosigning a letter along with fellow biotech peers, vocalizing our support for U.S. public health experts and condemning those who have tried to undermine public health efforts. This was an ethical dilemma that could not go unchecked.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
“It’s Bigger Than You.” It reminds me each day that there is a greater purpose to our wok…and Someone greater than ourselves.
How can our readers further follow your work?
Yes, please follow Amicus Therapeutics on LinkedIn and on our website for all company updates. For more news and updates on my own work within and outside of Amicus, please follow my personal LinkedIn.