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Father founds biotech company in a Hollywood story.
SAN FRANCISCO- Biotech entrepreneur John Crowley, whose astonishing personal quest to develop a treatment for Pompe disease, a rare genetic disorder that affects two of his young children, is captured in the new Harrison Ford movie Extraordinary Measures, spoke movingly about his family's experiences and hopes in the opening keynote at CHI's Molecular Medicine Tri-Conference (MMTC) in February.
"We've learned more about life and love from our two kids than we've ever taught them," Crowley told the MMTC audience, many of whom were visibly moved. But he shared many inspiring and humorous stories as well.
In 1998, on a Friday 13th no less, Crowley and his wife received the devastating diagnosis that his daughter Megan, just 18 months old, had the rare recessive condition Pompe disease, a failure of glycogen metabolism, causing the compound to accumulate to toxic levels in the body's muscles. "I'm sorry, there's nothing that can be done," the doctors told Crowley. His son Patrick was diagnosed with the same disorder shortly afterwards. The typical life expectancy at that time was about two years of age.
Of all the emotions the Crowleys experienced in the weeks that followed, the overpowering feeling was determination-in particular to find a treatment for the incurable disease, and to...