Real life sometimes looms larger than the characters and storylines of Hollywood.
That’s certainly true in the case of John Crowley and Dr. William Canhill, the founders of Novazyme Pharmaceuticals, a biotech startup that has since become part of Genzyme, one of the world’s largest biotechnology companies.
Crowley left Bristol-Myers Squibb to become CEO of Novazyme as part of a personal mission to find a treatment and cure for Pompe disease, after he learned in 1998 that his two children suffered from the rare genetic disorder. Often fatal, Pompe disease is a neuromuscular disease spurred by mutations in the alpha-glucosidase (GAA) gene. The mutations stymie the body’s ability to create the GAA enzyme, leaving the heart and muscles open to attack by excessive amounts of glycogen, which GAA typically breaks down.
Crowley credits the work at Novazyme and Genzyme, where he worked after the acquisition, with saving his children’s lives. “Extraordinary Measures” — which stars Harrison Ford, Brendan Fraser and Keri Russell — recounts the journey of Crowley, his wife Aileen and their children in the effort to find a cure.
Today, Crowley continues to pursue new treatments for rare genetic disorders as CEO and chairman of Amicus Therapeutics, a company working to develop small-molecule, orally administered drugs known as pharmacological chaperones. He has also written a just-published memoir, Chasing Miracles: The Crowley Family Journey of Strength, Hope, and Joy.
Stories of biotechnology saving and enriching people’s lives are exceptional — but not the exception. Inspired by the story writ large in “Extraordinary Measures,” CBS Films created the Inspirational Quilt, an online compilation of videos about individual people who “found the strength to make their own miracles.”
BIO also collects the stories of these extraordinary people, such as that of one man who strives to bring hope to muscular sclerosis patients through his work at the Myelin Repair Foundation. His story and others can be found on BIO’s IamBiotech website.