Wednesday, January 20, 2010
In 2007, I was finishing my MPH at Columbia's Mailman School of Public Health and was assigned a Harvard Business Review entitled "Father's Love: Novazyme Pharmaceuticals". Most of the reading to date in the program had been pretty dry and data driven. This case study was different - although it focused on the business and management decisions made by Novazyme Pharmaceuticals, it also told the amazing story of John Crowley and what he had done to try to find a cure for the disease that was stealing the lives of his children. I was so gripped by the story that I sought out Geeta Anand's book which chronicled John Crowley's story - The Cure: How a Father Raised $100 Million - and Bucked the Medical Establishment - in a Quest to Save His Children.
John Crowley and his wife had a picture perfect life - John was a Notre Dame grad who recently had received his MBA from Harvard; they had a beautiful house and three young children. The perfect life started to fall apart when John's wife, Aileen, noticed some motor skill defecits in their young daughter, Megan. Shortly thereafter, Megan and her younger brother Patrick were dignosed with a rare genetic disease, Pompe's Disease for which there was no cure, no effective treatment; the Crowley's were told the disease was degenerative and would gradually rob their children of the ability to walk, speak, eat and would ultimately take their lives long before they reached adolescence. John refused to accept that death sentence and set about trying to find a cure for his children's disease. He left his job, invested in Novazyme Pharmaceuticals and launched this biotech in order to develop a compound to treat Pompe's Disease. While facing the increasing decline of his children's health, Crowley struggled with the research setbacks and the business of getting a drug developed and approved. The books moves fluidly between descriptions of these struggles (and some triumphs) and those he and his wife faced at home as they coped with their children's health and its impact on their family life.
Working in R&D for a large pharma company, I have a keen understanding of all it takes to get a drug through the development and approval process - I think that is why I was so engrossed in this story. I am impressed by Crowley's dedication and his tenacity in trying to save his children's lives. It's hard for me to imagine facing so many setbacks while my children gradually declined - to race against the clock while trying to manage many things which are not within your control would be so hard. But that is what John Crowley did and the story is both heart wrenching and heart warming.
The Crowley's story has been made into a movie, Extraordinary Measures starring Harrison Ford, Brendan Fraser and Keri Russell, which opens Friday, Jan 22nd. Whether you see the movie or read the book, definitely learn about the Crowley's - their story will inspire you!