In December, 2020, Brad Crittenden, patient and executive director for the Canadian Association of Pompe (CAP) talked with John Crowley, Chairman of the Board and CEO of Amicus Therapeutics, discussing family, challenges when entering adulthood, newborn screening and what’s new at Amicus.
About John Crowley
John F. Crowley is our Chairman and CEO. 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.