The Crowleys - Page 3

At the time of the Pompe disease diagnosis, John was working in the pharma industry with Bristol-Myers Squibb, using his great educational background. He has an undergraduate degree from Georgetown, a law degree from Notre Dame and an MBA from Harvard.

Getting on the computer on day one following the Pompe disease diagnosis and using every spare moment, John and Aileen researched the disease, including reaching out to experts on rare diseases worldwide. In 2000, within two years of the diagnosis, John quit his job, raised venture funding and started a biotech company (Novazyme) to find a treatment for Pompe disease. Progress was made.

To speed the work, the company was eventually sold to Genzyme, another biotechnology company that, with John’s help as a senior vice president, developed an enzyme-replacement therapy. To allow the children to receive the drug in clinical trials without creating a conflict of interest, John left Genzyme.

In January 2003, Megan and Patrick started receiving Genzyme’s therapy. Two years later, John joined another small biopharmaceutical company, Amicus Therapeutics in Cranbury, and remains there as president and CEO. Much larger now, Amicus is focused on finding treatments for a range of genetic diseases, including Pompe disease.

Six years ago, the Wall Street Journal ran an article about the Crowley family’s amazing journey. Harrison Ford happened to read the article and decided he wanted to make a movie about the family’s battle with Pompe disease. He found a producer and started working on the project. His first step was to pick up the phone and call the Crowleys. Aileen certainly was not expecting a call from Harrison Ford! Filming of the movie “Extraordinary Measures” started in March 2009. Most of it was shot in Portland, Oregon, where lots of movies are produced.

John Crowley has a cameo role in the movie. He plays a venture capitalist from whom John, in real life, raised the money to start his first biotechnology company. Aileen and the children were included in the movie, but during final editing, their piece, Aileen said, “wound up on the cutting-room floor.”

The movie’s premiere was held Jan. 19 in Los Angeles, and a special screening, also featuring the movie’s stars, took place on Jan. 21 in New York. The trip to the L.A. opening was too much for the kids, but they were excited to get the red-carpet treatment at the New York preview. Megan selected a polka-dot dress and traveled the red carpet in style with the rest of the family.

To this point, John has been in the spotlight because of his amazing work developing a treatment for Pompe disease.

First, there were the newspaper articles, then a book about the Crowleys’ journey, “The Cure,” by Pulitzer Prize-winning Wall Street Journal reporter Geeta Anand — part of the inspiration for the movie. Now, John has written a memoir, just released by Newmarket Press, titled “Chasing Miracles: The Crowley Family Journey of Strength, Hope and Joy.”

Aileen wrote the introduction to the book, saying it shares some of the lessons the couple has learned about how to persevere in the most trying of times.

“It is from our three children that we have learned the most,” she writes, “without their ever knowing that they have been teaching us along the way. John, Jr., Megan, and Patrick have taught us more about life and love than we have ever taught them.”

Now that the movie and book have been released, Aileen is expecting more people, particularly women, to be reaching out to her for wisdom and guidance.

Her advice to other women going through tough circumstances is to “really bond with your partner. Nobody can go through these experiences alone. You have to have someone to lean on.”

For Aileen and John, it also helps that their families are in the area to create a support network along with the team of doctors and nurses that have become an integral part of their lives. “The children get to play with their cousins,” added Aileen.

It is clear that Aileen is a tower of strength who will continue to help all three of her children thrive.