Editor’s note: This article was first published in February 2011. Its “Today” section reflects 2011. Genzyme was acquired by Sanofi in 2011, and Crowley later stepped down as CEO of Amicus Therapeutics (2024) and went on to lead the Biotechnology Innovation Organization (BIO).
The story of this entrepreneur, John Crowley, is straight out of a movie, quite literally: it was brought to the big screen as Extraordinary Measures, starring Harrison Ford and Brendan Fraser. It also inspired a book, The Cure.
John Crowley, an American and a lawyer by profession, receives the terrible news that his young daughter will die within two years and that his newborn baby will meet the same fate. Both have an incurable hereditary disease, Pompe disease, or glycogen storage disease type II, in which the muscles of those affected build up sugar in the form of glycogen, so that while the muscles fail to develop properly, the heart starts to grow out of proportion.
Crowley’s daughter’s heart was twice the size of a normal heart for a girl her age. One night, she fell ill. They took her to the emergency room, where she was admitted in critical condition, to the point that the doctors told them there was nothing more they could do. It was only a matter of hours.
But Crowley’s daughter fought for her life. She refused to die, defying every medical prognosis, and the specialists were astonished. The doctors told John Crowley he had been lucky that night, but that she wouldn’t survive more than eight months, or a year at most.
Crowley told himself that if his daughter had fought, he would never stop fighting for her. He would put heart and soul into finding a way to save his children’s lives.
John Crowley began searching the internet for everything he could find about advances and research on the disease, and discovered that advanced studies were under way in three different countries, one of them at Duke University (North Carolina).
He contacted the doctor leading the study, Dr. Canfield, who was considered a crank because of his social aloofness, but who was the only one running an advanced study on Pompe disease.
Dr. Canfield explained that the reason the disease still hadn’t been cured was that Pompe disease is classed as a “rare” disease in the United States. Translated into the language of the pharmaceutical business, that means a very unprofitable business: only about 5,000 people in the world have the disease, so no company would invest in that research or project. Money before human life.
John Crowley saw it clearly: if no company was going to back this research, he would create the company himself.
Crowley quit his job and teamed up with Dr. Canfield to set up a small biotechnology company called Novazyme. With hardly any means, resources or capital, Crowley sold his house to put money into the company and hire the medical team that would work on the cure alongside Dr. Canfield.
The race against the clock had begun.
With Novazyme’s meagre resources and his daughter’s life running out, they had to speed up the research, which meant hiring more staff and getting new machines and new facilities. They needed a much bigger company in the sector, or one willing to invest in their “unprofitable project”.
They visited medical companies and investment groups, but nobody wanted to invest in an “aloof” doctor and an entrepreneur with no medical knowledge, much less one who was fighting for a project not for money but for personal reasons.
That’s when Crowley had to change his strategy and rework his “pitch” to win over an investor. Their last hope rested on the only company they hadn’t yet visited, Genzyme Corporation, a giant of medicine present in more than 45 countries. If Genzyme said no, the hope of saving his children’s lives would be gone.
Crowley managed to convince Genzyme Corporation that the project was viable, while, of course, hiding the fact that his children had the disease: had he revealed it, the American mindset is not to invest in projects driven by moral or personal motives rather than by the drive to do business.
Genzyme Corporation acquired Crowley’s company for $206 million, leaving Dr. Canfield in charge of the research, while Crowley became the company’s commercial director: someone who knows nothing about medicine, but knows how to sell products, in this case his own business idea.
Genzyme Corporation found the cure for Pompe disease, and today, if they receive the drug in time, people who inherit the disease can lead a normal life.
Crowley not only saved his children’s lives but also those of 5,000 other people around the world, thanks to his determination to develop the drug.
Today… Crowley has left Genzyme Corporation and runs Amicus Therapeutics, a company with two lines of business: a purely commercial one as a pharmaceutical company, and another developing drugs for the rare diseases that other companies consider unprofitable.
This inspiring entrepreneurial story shows that anyone can achieve whatever they set out to do, as long as they truly want it. It also shows that a bank, an investment group and so on can stop the financing for your business, but not your passion for making your dream come true. Fulfilling your dream depends on you alone.
Featured image: Emerphoto, CC BY-SA 4.0, via Wikimedia Commons.
