I had the opportunity to hear John Crowley (http://www.crowleyfamily5.com/) speak over the weekend, and while that name may not instantly ring a bell, his family’s story likely will.
The new film “Extraordinary Measures” with Brendan Fraser and Harrison Ford features the remarkable story of John and Aileen Crowley and their search for a cure to their children’s degenerative muscular disorder known as Pompe Disease. If it were a piece of fiction the story would still be worth telling as Fraser – playing Crowley — uses his business acumen to cajole Ford’s biological researcher character into developing a life-saving treatment.
The fact that the story is true makes it all the remarkable. Crowley spoke of the importance of being dedicated to family as central to the journey of fundraising and starting a company from scratch to end up saving not only his children’s lives, but the lives of children born today with the disorder.
Both in the film and in person there is a sense of determination that encompasses faith in one’s own ability and in something greater than the accumulation of wealth or notoriety. That is wonderfully refreshing to see.