“So what’s Harrison Ford like?” was the question that started the conversation between Director of the Pennsylvanian Center for Bioethics Arthur Caplan and John Crowley on Monday at the Penn Clinical Research Building.
The Center for Bioethics hosted a discussion with Crowley, the CEO of Amicus Therapeutics, as part of the speaker series “Conversations on the Frontiers of Ethics.”
Crowley is familiar with Ford because the actor starred in the 2010 film Extraordinary Measures, which was inspired by Crowley’s struggle to find a cure for his children’s Pompe disease.
Crowley describes his drive to go to these “extraordinary measures” to save his children as stemming from his idea that, “No one will be a better advocate for children than their parents.”
Throughout the discussion, he provided insights into his views of certain bio-ethical issues as well as the struggles his family endured.
Caplan explained that this discussion gave students the opportunity “to see an entrepreneur who is very socially conscious.”
Engineering Sophomore Melissa Cedarholm said she found Crowley to be very admirable. “I thought it was really impressive how he had kids with a disease and took it upon himself to start his own company to help alleviate it,” she said.
College Sophomore Genevieve Barnard said, “It was interesting to see someone talk about his experiences first hand rather than seeing just the Hollywood version.”
For attendees who were unsure about the accuracy of fictional stories based on truth, Crowley asserted that “70 to 80 percent of the events portrayed in the movie did happen in one form or another,” and the movie “captured beautifully the spirit and dynamic of my life.”
He also emphasized the positive effects the movie has had on society by raising awareness about an uncommon disease and bio-ethical matters. He noted that “‘Pompe disease’ was the 10th most searched word in Yahoo! search engines just days before the movie release.”
The full discussion can be viewed online at www.bioethics.upenn.edu in a few weeks.
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