When biotech executive John Crowley’s children Megan and Patrick were diagnosed with Pompe Disease, a rare and deadly degenerative neuromuscular disorder, there was little hope for a cure. Yet Crowley was determined to find a treatment that would save his children’s lives.
In 2000, Crowley became Chief Executive Officer of Novazyme Pharmaceuticals, a company that was researching an experimental treatment for Pompe Disease. When Novazyme was acquired by biotechnology giant Genzyme in 2001, Crowley led the company’s global Pompe program. For Crowley’s children Megan and Patrick, an experimental trial of Genzyme’s enzyme replacement therapy was a lifesaver.
John Crowley and his daughter Megan Crowley--who is a sophomore at the University of Notre Dame--met with President Donald Trump before being introduced to Congress during Trump’s February address. The president used the occasion to note that streamlining and speeding the Food and Drug Administration approval process could save lives.
A ceaseless advocate on behalf of the 25 to 30 million people suffering from more than 7,000 rare diseases, John Crowley’s journey was the basis for the 2010 film, Extraordinary Measures, starring Brendan Fraser, Keri
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