Updated: Jul 29
Last night I had the opportunity to watch the movie Extraordinary Measures and meet John Crowley, activist and entrepreneur. Extraordinary Measures is the story of the Crowley family and their quest to find a treatment and ultimately a cure for a rare genetic disorder known as Pompe disease. Two of John and Aileen Crowley’s children have this disease. Their names are Megan and Patrick. In 1998 there was no treatment for this often fatal neuromuscular disorder. John Crowley started his own biotech firm over an 18 month period and sold it to Genzyme, one of the world’s largest biotech companies. After the efforts of hundreds of people they finally discovered and produced a medicine to treat Pompe disease.
Following viewing the movie, Crowley made a few remarks and took questions from the audience. He answered the questions he always gets asked. First, how did the movie come to be? And second, how are Megan and Patrick doing? In 2003, the Wall Street Journal published an article written by Geeta Anandon on its front page about the Crowleys. Harrison Ford read the article, was struck by it and contacted producers to get the wheels in motion to make a movie. Crowley’s message: If you are written about in the Wall Street Journal and Harrison Ford calls, do not hang up! Megan and Patrick are both doing well. They are still confined to wheelchairs and ventilator dependent, but they are thriving 8th and 7th graders. They receive the enzyme treatment once every two weeks. Thankfully this can be administered at home otherwise the children would have to spend a full day in the hospital and be exposed to germs that could compromise their respiratory systems. Crowley says that this is the biggest risk the children face. He continues to work on treatments – better enzymes to combat the sugar in their bodies which debilitate muscles and organs.
The Crowleys have written a book called Chasing Miracles. It is divided into 3 parts: Strength, Hope, and Joy. The book intimately chronicles the journey of the Crowley family and profiles all those who have helped along the way. If you are interested in learning more about this family, they have a website – www.crowleyfamily5.com. If you are interested in supporting charities which address the needs of families with rare, orphan diseases, the Crowleys include 4 links to charities on their website: The United Pompe Foundation, The Make A Wish Foundation, The Muscular Dystrophy Association, and Children’s r.a.r.e. Disease Network.
John and Aileen Crowley did whatever it took to help their children survive. This is an inspiring story. It is about learning to ask for help, about not losing faith, about coping with challenges, and about the kindness of others. Stories like this one inspire, energize, and encourage self-reflection. I was honored to hear pieces of this story directly from John Crowley. The movie and book have really given him the opportunity to spread his message. It is a powerful one.