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Extraordinary Measures—Harnessing Determination, Collaboration, and Imagination to Create the Future

John Crowley, NHIA’s keynote speaker, is no stranger to the concept of collaborating in order to create positive change. The former CEO of Novazyme Pharmaceuticals shared his family’s story of strength, hope, and joy. 

In 1998, two of Crowley's children, Megan and Patrick, were diagnosed with Pompe disease, a severe neuromuscular disorder that affects only several thousand children worldwide. Determined to find a cure, he quit his job and founded the pharmaceutical company that eventually developed the infused drug they need to survive. The Crowley family story has been featured in The Wall Street Journal, is the subject of a book, The Cure, as well the inspiration behind a major motion picture titled Extraordinary Measures starring Harrison Ford, Brendan Fraser, and Keri Russell.

In May, Megan and Patrick will begin receving their therapies at home rather than in the hospital clinic where they have been treated every other week since 2003.  “Home infusion has given us back a day of our lives every two weeks,” said Crowley.  “It also offers improved quality of life and gives the kids a break from the rigors of medical treatment in the hospital and exposure to viruses that could make them sick.”

You have to be able to put your trust in other people,” continued Crowley.  “There were many times we wanted to give up, but we got strength from other people--we couldn’t have done it alone.”

Speaking to the family’s sense of optimism, Crowley addressed of the role of hope in his quest to save the lives of his children.  “Hope is an amazing thing,” he said.  “It makes you ask yourself, how can I build a new frontier?”

Now the Chairman and CEO of Amicus Therapeutics, Crowley continues to guide emerging biotech companies, and has been involved in championing numerous public policy causes, most notably in the rare disease and health care space. He has also co-authored a personal memoir entitled Chasing Miracles: The Crowley Family Journey of Strength, Hope and Joy.