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Wednesday, August 4, 2010
what inspired me today
“The Cure” By Ms. Geetha Anand, a former national swimming champion, and a journalist. Written as a medical thriller, it's the story of a "dad starting a company to save his kids," Anand says. John and Aileen Crowley have two children Megan and Patrick, both of whom suffered from Pompe disease, a rare genetic disorder with a life expectancy of not more than two years. Thanks to their efforts, today Megan is 13 and Patrick is 12, but both are still in wheelchairs and on ventilators.
The book describes the life of John Crowley :How a Father Raised $100 Million – And Bucked the Medical Establishment – In a Quest to Save His Children
John married his wife Aileen in 1990. In 1998, two of Crowley's children, Megan and Patrick, were diagnosed with a severe neuromuscular disorder, Glycogen storage disease type II, also called Pompe disease. In the face of the children's deteriorating health, the family moved to Princeton, New Jersey to be close to doctors specializing in the disease. Crowley worked at Bristol-Myers Squibb, where he served in a number of management positions. Frustrated with the slow pace of research on Pompe disease, Crowley left Bristol-Myers Squibb in March 2000, and took a position as CEO of Novazyme, a biotechnology research company located in Oklahoma City that was conducting research on a new experimental treatment for the disease.
In 2001 Novazyme was acquired by Genzyme Corporation, the world's third largest biotechnology company, under Crowley's initiative. Under these auspices, Dr William Canfield's work eventually bore fruit and in January 2003, Megan and Patrick Crowley received the enzyme replacement therapy for Pompe disease developed by Genzyme. John Crowley credits the experimental trial with saving his children's lives. The children are still on respirators. The acquisition of Novazyme by Genzyme, and Crowley's fight to cure Pompe's Disease, was documented in the Harvard Business School Case Study, Novazyme: A Father's Love.
Crowley went on to become President and CEO of Orexigen Therapeutics in 2003. In January 2005, he was named the President and CEO of Amicus Therapeutics, based in Cranbury, New Jersey. He also serves in the United States Navy Reserve as an intelligence officer. He completed a six-month tour of duty at the Center for Naval Intelligence in Virginia in 2007,. He is currently assigned to a Navy Reserve unit at the United States Special Operations Command.
John and Aileen Crowley have also launched a website Crowley Family 5, where people interested in the Crowley Family or Pompe Disease can follow the family's activities. Crowley is active in a number of social service and philanthropic efforts. He was named the "Humanitarian of the Year" by the Make A Wish Foundation of New Jersey. He and his wife Aileen have supported numerous charitable and community organizations through their family foundation, the John F. and Aileen A. Crowley Foundation.
A movie has been made depicting the real life story of John Crowley, titled “Extraordinary Measures”.
Inference : John or his wife could have just walked off from this life. But they stood the test of their times and their life reflects their mutual love for each other and their love for their children. Everything is made possible by understanding couples. They were optimistic. Optimism knows the struggle one has to undergo, to see a light at the end of the tunnel. Great to know about them. Long live their children.
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