When they were only infants, siblings Megan and Patrick Crowley were diagnosed with Pompe disease—a rare recessive genetic disorder that leads to the deficiency of an enzyme that breaks down glycogen, the sugar the body stores for energy. Their parents, John and Aileen, were devastated but not defeated. “We tried to do something to change the course of that diagnosis, and we’ve never looked back,” says John. That drive to save their children is chronicled in the upcoming movie Extraordinary Measures, starring Harrison Ford, Brendan Fraser, and Keri Russell, due in theaters January 22.
In 2000, Crowley left a job in marketing at Bristol-Meyers Squibb to cofound Novazyme, a start-up biotechnology company pioneering research for an intravenous enzyme replacement infusion to alleviate and reverse the debilitating effects of Pompe, which include life-threatening cardiac enlargement as well as progressive muscle weakness and respiratory problems. Today, Megan and Patrick receive the six-hour infusion every other week. “It’s taught us the importance of innovation in medicine,” says Crowley, who is now president and CEO of Amicus Therapeutics in Cranbury—another biotech firm involved in Pompe research.
In the movie, Fraser portrays Crowley, while Ford plays Dr. Robert Stonehill, a research scientist whom Fraser’s character approaches for help. “Harrison came to the lab [at Amicus]. We took him through biology and genetics 101. By the end of the day, he was literally drawing carbohydrate structures on the chalkboard,” says Crowley, who makes a cameo in the film as a venture capitalist.
Though the movie was filmed and is set in Portland, Oregon, Fraser’s character hails from the Garden State, just like the real John Crowley. “Harrison Ford’s character refers to me in the movie as Jersey,” says Crowley, who grew up in Bergen County; the Crowley family now lives in Princeton. Megan, 13, and Patrick, 11, are thriving and have a 15-year-old brother, John. The family plans to attend a January 21 red-carpet showing of Extraordinary Measures at the Paris Theatre in New York.