Former attorney inspires new movie

Keywords Features / neglect

Before his life became a movie script and Hollywood heavyweights took an interest in his story, John Crowley started as a rising star in Indiana's legal community.

The New Jersey native attended the University of Notre Dame Law School and after graduating worked as a summer intern and associate at an Indianapolis law firm in the 1990s. Although the prominence of his Hoosier legal experience pales in comparison to the celebrity treatment he's now receiving worldwide, those beginnings created a foundation for the "extraordinary measures" that would eventually become his focus in life.

Crowley is the inspiration behind the new movie "Extraordinary Measures," which features actors Brendan Fraser and Harrison Ford. The movie follows Crowley and his family's journey in coping with and pursuing a cure for the rare genetic condition known as Pompe disease. The movie shows how Crowley, after leaving Indiana to get his M.B.A. from Harvard Business School, started his own biotech firm to find a cure for the often-fatal disease that has afflicted two of his children. Those who know him now or knew him at some point in his life describe Crowley as bright, passionate, and caring in a way that prepared him for what life would eventually hand to him and his family.

"If this isn't a story about love and perseverance, I don't know what is," said Bingham McHale partner Robin Babbitt, who worked with Crowley. "Our firm has a small role in this story since the story really happened after he left here … but we're honored to be a part of his life in such a very small way that helped prepare him, and we're honored that one of our own has found a way to make all of this happen."

An Indiana foundation

After growing up in New Jersey, Crowley attended the U.S. Naval Academy for a year and earned a degree in foreign service from Georgetown University. He entered the University of Notre Dame Law School in 1989, earning his law degree in 1992 after marrying his wife, Aileen, in 1990.

During his second year of law school, he worked as a summer intern at Indianapolis firm Bingham Summers Welsh & Spilman – about a decade before it would merge with another firm and become Bingham McHale. After graduation, he returned as a litigation associate in the health-care practice group where he worked for about three years before deciding to get an M.B.A from Harvard Business School.

Notre Dame law professor Matthew Barrett recalled how Crowley was in his first federal income tax class in the spring of 1991 and how he displayed incredible potential even as a student. Barrett wrote a letter of recommendation for Crowley to get into Harvard; he then would read about his former student's challenges and accomplishments through the years.

"He was one of the best students in tax class," Barrett said, noting Crowley was part of an award-winning national moot court team that presented before U.S. Supreme Court Justice Anthony Kennedy. "John did incredibly well and was exceptional in oral advocacy skills … that has probably done wonders in helping him through the years as this has all happened.

"We are very proud of our graduate and his contributions to society, his dedication to his family, and his ongoing relationship with Notre Dame," he added.

While working at Bingham, Crowley and his wife also opened a bridal shop in Carmel. Babbitt said he was always impressed at how Crowley, even with his heavy load as an associate, could find the time to manage a successful business. That paved the way for Harvard, Babbitt said.

When Crowley left Bingham in late 1995, he and Aileen already had one son, John Jr., who'd be the couple's only child not to be afflicted with Pompe Disease. Crowley went on to graduate from Harvard Business School in 1997 and then worked for a management consulting firm in San Francisco.

Then, what would become the moviescript part of his life became a reality.

Executive to entrepreneur

Within months in 1998, daughter, Meghan, and son Patrick were diagnosed with Pompe disease, a severe neuromuscular disorder in which the body basically has deficient enzymes to break down sugar and as a result the buildup causes muscles and the heart to weaken. It can be debilitating and fatal. The family moved to New Jersey to be near medical specialists and was told that their kids weren't going to live long.

"In the course of several months, we heard we had two kids who wouldn't live to be 2," Crowley said in a televised interview; he explained his daughter was diagnosed at 9 months old and his son was diagnosed at 7 days old.

Working then in management positions at Bristol-Myers Squibb, the family became frustrated at the slow pace of research. Crowley has said that out of desperation, he stepped away from that secure job and stability to take a chance on his own business. He quit his job in 2000 and invested his life savings and used his legal background to start his own biotechnology firm in Oklahoma City to conduct research on a new experimental treatment for the disease.

Even with what he says was little experience in the medical field, Crowley founded and became the chief executive officer of biotech company Novazyme, which began exploring a novel treatment for Pompe disease – that is what the movie "Extraordinary Measures" is based upon. The company later merged with Genzyme Corp., the world's third-largest biotech company. In early 2003, the Crowley children received an enzyme replacement therapy developed by Genzyme.

Though his children are still on respirators and the drug is by no means a cure, Crowley credits it for saving his kids' lives. They are now in the 7th and 6th grades and have a nurse with them during the day, but Crowley has said they are doing great. The family takes it one day at a time.

"I think I did my job as a dad," he said in a televised interview. "I did what I had to. I don't think that makes you a hero."

Crowley has since gone on to other businesses; he was founding president and chief executive officer of Orexigen Therapeutics before moving to Amicus Therapeutics in 2004 where he now serves as president and CEO. Through the years, Crowley's been profiled in magazines and newspapers and named Humanitarian of the Year by the Make-a-Wish Foundation of New Jersey. They have a family Web site at, where more information is available about Pompe disease and the family's activities and efforts.

The Crowley story eventually became substance for a movie script, which was originally going to be called "Crowley." But in its evolution, the title changed and now features Ford as scientist Dr. Robert Stonehill, while Brendan Fraser and Keri Russell took on the roles as John and Aileen. CBS Films began filming in April 2009, but the family had been involved in the screenplay for about two years.

"At the end of the day, the movie's theme is about hope and inspiration, and I think they've done a beautiful job in the film that will touch many people," he said in an interview with The Trentonian newspaper. "It's a fun movie, too. It catches our spirit."

The movie opens Jan. 22, and both Notre Dame Law School and Bingham McHale had set private screenings with Crowley attending to speak before the showings.

While Indiana's legal community doesn't expect to have much mention or attention in the new movie, they are proud of their alumnus and see his accomplishments as a message for any young law student or associate.

"The larger message about John's life is one of family, but in order to get where he got you can't let the world define you or what your limits are," Babbitt said. "He broke through the circumstances of his life, and if he hadn't this could've ended tragically. John is a tremendous example of overcoming barriers and using what you have to break through whatever gets in the way."

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