Notre Dame announced alumnus John F. Crowley, who received widespread attention for his pursuit of a cure for a rare disease that afflicts two of his children, as the commencement speaker for the Class of 2020 Commencement ceremony on May 29, according to a press release.
Crowley’s story has been chronicled in the Wall Street Journal and subsequently in the 2006 book “The Cure.” The 2010 movie “Extraordinary Measures” starring Harrison Ford is based on “The Cure.”
Crowley graduated from Georgetown University with a bachelor’s degree in foreign service before earning a law degree from Notre Dame and an MBA from Harvard Business School.
In 1998, Crowley’s then 15-month old daughter Megan was diagnosed with Pompe disease, a rare and fatal neuromuscular genetic disorder, according to the release. Megan’s younger brother Patrick was also diagnosed with the disease. The disease weakens muscles and can lead to swelling of vital organs and breathing problems. The release said the family was told both children were unlikely to survive for more than a few years.
John then entered the pharmaceutical industry in an effort to beat the disease. He eventually co-founded Novazyme Pharmaceuticals. Novazyme grew and was acquired by the biotechnology company Genzyme. Genzyme later produced Myozyme, a life-saving medicine for Pompe disease, the release said.
Megan and Patrick participated in a Myozyme clinical study in 2003. Within several months of the study, their enlarged hearts returned to normal size and they gained functional muscle strength, according to the release.
Megan graduated from Notre Dame in 2019 and now works as a social worker at her former middle school. Patrick is 23 and their older brother, John Jr., is 27, the release said.
Myozyme was later approved and is now called Lumizyme. More than 3,000 Pompe patients receive bi-monthly treatments of Lumizyme, according to the release.
John went on to found Amicus Therapeutics, which develops medicines for rare diseases. John serves as CEO and chairman of Amicus, which now operates in more than 24 countries. He advocates for universal access to medicines and wrote a book called “A New Commitment to Patients” calling for biopharmaceutical companies to ensure their medicines reach as many people as possible.
John also served as a commissioned intelligence officer in the U.S. Navy Reserve from 2005 to 2016.
The 2020 Commencement took place online due to the COVID-19 pandemic. A special ceremony over Memorial Day weekend will honor the class, concluding with the ceremony at Notre Dame Stadium.
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