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A personal memoir from the family that inspired the upcoming film Extraordinary Measures, starring Harrison Ford, Brendan Fraser, and Keri Russell the story of John and Aileen Crowley s efforts to find a cure for their two children s rare genetic disorder, Pompe disease. In 1998, at 15 months old, Megan Crowley was diagnosed with Pompe Disease, a rare genetic disorder that was likely to reduce her life span to five years at most. Her five-month old brother, Patrick, shared the same disease and its crippling progression. Their father, John Crowley, a freshly minted Harvard MBA graduate, was determined to use his brains and connections to find a cure. He started a family foundation to fund research on Pompe disease and eventually headed a biomedical start-up company with a promising approach. Their outcome was ultimately successful because of a lot of factors: hard-work, determination, love and prayer, and yes, some degree of luck.
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hard to findAbout the Author:
John F. Crowley is an American business and social entrepreneur. The son of a New Jersey cop, who died on duty when John was 7 years old, he has earned degrees from Georgetown University, Notre Dame Law School, and the Harvard Business School. He worked for Bristol-Myers Squibb before leaving to take a position as CEO of a start-up biotech company searching for a treatment for Pompe disease.
Crowley is currently the President & CEO of Amicus Therapeutics, a publicly held biopharmaceutical company working on the development of drugs to treat a range of human genetic diseases and diseases of neurodegeneration. A widely acclaimed public speaker, he also serves on the board of the National Make-A-Wish Foundation and is a commissioned officer in the U.S. Navy Reserve, assigned to the U.S. Special Operations Command.
John and his wife, Aileen, live in Princeton, New Jersey, with their two sons, John, Jr. and Patrick, and their daughter, Megan.
Ken Kurson is the co-writer of Rudy Giuliani's "New York Times" bestseller "Leadership" and David Faber's "The Faber Report." He has also written for "Forbes," "Money," and "The New York Times," and has been a contributing editor at "Esquire" for more than ten years.
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