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- Crowley, a lawyer and Harvard Business School graduate, was working at Bristol-Myers Squibb when his two young children were diagnosed with Pompe disease, a fatal degenerative disorder. Rather than accept their death sentence, Crowley quit his job and invested his life savings in a biotech startup to find treatments for the disease.
www.newsweek.com › qa-ceo-who-inspired-extraordinary-measures-69129Q&A: The CEO Who Inspired 'Extraordinary Measures' - Newsweek
Jan 30, 2019 · On a Friday the 13th some 20 years ago, 15-month-old Megan Crowley was diagnosed with Pompe disease. A few weeks later, so was her newborn brother, Patrick. Even the doctor who diagnosed the two children didn’t know much about the disease. Before that March day in 1998, he had never treated a patient with Pompe.
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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.
In March 1998, when John’s daughter Megan was 15 months old, she and her newborn brother, Patrick, were both diagnosed with Pompe disease. John and his wife Aileen were told their two younger children would not live past their second birthday.
Mar 1, 2017 · Crowley was diagnosed with the disease when she was 15 months old, and was not expected to live past age 5. Her brother also has Pompe disease, and their father went on to found a company —...
Nov 9, 2023 · Pursuit of this new treatment for LOPD, while working to find a hoped-for cure, began just more than 25 years ago when Crowley’s children were diagnosed with Pompe. Megan, now 26, was diagnosed at 15 months, and Patrick, now 25, was diagnosed as a newborn.
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Nov 29, 2019 · At 15 months old, she was diagnosed with Pompe disease, a rare genetic disease that prevents her body from breaking down sugar. The disease has deteriorated her muscles and organs, leaving...
He helped develop two drugs to treat Megan, Patrick and others with Pompe disease, which causes heart and skeletal muscles to waste away. The Food and Drug Administration approved the second...
