Former attorney inspires new movie

Michael W. Hoskins
January 20, 2010
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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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  1. I have been on this program while on parole from 2011-2013. No person should be forced mentally to share private details of their personal life with total strangers. Also giving permission for a mental therapist to report to your parole agent that your not participating in group therapy because you don't have the financial mean to be in the group therapy. I was personally singled out and sent back three times for not having money and also sent back within the six month when you aren't to be sent according to state law. I will work to het this INSOMM's removed from this state. I also had twelve or thirteen parole agents with a fifteen month period. Thanks for your time.

  2. Our nation produces very few jurists of the caliber of Justice DOUGLAS and his peers these days. Here is that great civil libertarian, who recognized government as both a blessing and, when corrupted by ideological interests, a curse: "Once the investigator has only the conscience of government as a guide, the conscience can become ‘ravenous,’ as Cromwell, bent on destroying Thomas More, said in Bolt, A Man For All Seasons (1960), p. 120. The First Amendment mirrors many episodes where men, harried and harassed by government, sought refuge in their conscience, as these lines of Thomas More show: ‘MORE: And when we stand before God, and you are sent to Paradise for doing according to your conscience, *575 and I am damned for not doing according to mine, will you come with me, for fellowship? ‘CRANMER: So those of us whose names are there are damned, Sir Thomas? ‘MORE: I don't know, Your Grace. I have no window to look into another man's conscience. I condemn no one. ‘CRANMER: Then the matter is capable of question? ‘MORE: Certainly. ‘CRANMER: But that you owe obedience to your King is not capable of question. So weigh a doubt against a certainty—and sign. ‘MORE: Some men think the Earth is round, others think it flat; it is a matter capable of question. But if it is flat, will the King's command make it round? And if it is round, will the King's command flatten it? No, I will not sign.’ Id., pp. 132—133. DOUGLAS THEN WROTE: Where government is the Big Brother,11 privacy gives way to surveillance. **909 But our commitment is otherwise. *576 By the First Amendment we have staked our security on freedom to promote a multiplicity of ideas, to associate at will with kindred spirits, and to defy governmental intrusion into these precincts" Gibson v. Florida Legislative Investigation Comm., 372 U.S. 539, 574-76, 83 S. Ct. 889, 908-09, 9 L. Ed. 2d 929 (1963) Mr. Justice DOUGLAS, concurring. I write: Happy Memorial Day to all -- God please bless our fallen who lived and died to preserve constitutional governance in our wonderful series of Republics. And God open the eyes of those government officials who denounce the constitutions of these Republics by arbitrary actions arising out capricious motives.

  3. From back in the day before secularism got a stranglehold on Hoosier jurists comes this great excerpt via Indiana federal court judge Allan Sharp, dedicated to those many Indiana government attorneys (with whom I have dealt) who count the law as a mere tool, an optional tool that is not to be used when political correctness compels a more acceptable result than merely following the path that the law directs: ALLEN SHARP, District Judge. I. In a scene following a visit by Henry VIII to the home of Sir Thomas More, playwriter Robert Bolt puts the following words into the mouths of his characters: Margaret: Father, that man's bad. MORE: There is no law against that. ROPER: There is! God's law! MORE: Then God can arrest him. ROPER: Sophistication upon sophistication! MORE: No, sheer simplicity. The law, Roper, the law. I know what's legal not what's right. And I'll stick to what's legal. ROPER: Then you set man's law above God's! MORE: No, far below; but let me draw your attention to a fact I'm not God. The currents and eddies of right and wrong, which you find such plain sailing, I can't navigate. I'm no voyager. But in the thickets of law, oh, there I'm a forester. I doubt if there's a man alive who could follow me there, thank God... ALICE: (Exasperated, pointing after Rich) While you talk, he's gone! MORE: And go he should, if he was the Devil himself, until he broke the law! ROPER: So now you'd give the Devil benefit of law! MORE: Yes. What would you do? Cut a great road through the law to get after the Devil? ROPER: I'd cut down every law in England to do that! MORE: (Roused and excited) Oh? (Advances on Roper) And when the last law was down, and the Devil turned round on you where would you hide, Roper, the laws being flat? (He leaves *1257 him) This country's planted thick with laws from coast to coast man's laws, not God's and if you cut them down and you're just the man to do it d'you really think you would stand upright in the winds that would blow then? (Quietly) Yes, I'd give the Devil benefit of law, for my own safety's sake. ROPER: I have long suspected this; this is the golden calf; the law's your god. MORE: (Wearily) Oh, Roper, you're a fool, God's my god... (Rather bitterly) But I find him rather too (Very bitterly) subtle... I don't know where he is nor what he wants. ROPER: My God wants service, to the end and unremitting; nothing else! MORE: (Dryly) Are you sure that's God! He sounds like Moloch. But indeed it may be God And whoever hunts for me, Roper, God or Devil, will find me hiding in the thickets of the law! And I'll hide my daughter with me! Not hoist her up the mainmast of your seagoing principles! They put about too nimbly! (Exit More. They all look after him). Pgs. 65-67, A MAN FOR ALL SEASONS A Play in Two Acts, Robert Bolt, Random House, New York, 1960. Linley E. Pearson, Atty. Gen. of Indiana, Indianapolis, for defendants. Childs v. Duckworth, 509 F. Supp. 1254, 1256 (N.D. Ind. 1981) aff'd, 705 F.2d 915 (7th Cir. 1983)

  4. "Meanwhile small- and mid-size firms are getting squeezed and likely will not survive unless they become a boutique firm." I've been a business attorney in small, and now mid-size firm for over 30 years, and for over 30 years legal consultants have been preaching this exact same mantra of impending doom for small and mid-sized firms -- verbatim. This claim apparently helps them gin up merger opportunities from smaller firms who become convinced that they need to become larger overnight. The claim that large corporations are interested in cost-saving and efficiency has likewise been preached for decades, and is likewise bunk. If large corporations had any real interest in saving money they wouldn't use large law firms whose rates are substantially higher than those of high-quality mid-sized firms.

  5. The family is the foundation of all human government. That is the Grand Design. Modern governments throw off this Design and make bureaucratic war against the family, as does Hollywood and cultural elitists such as third wave feminists. Since WWII we have been on a ship of fools that way, with both the elite and government and their social engineering hacks relentlessly attacking the very foundation of social order. And their success? See it in the streets of Fergusson, on the food stamp doles (mostly broken families)and in the above article. Reject the Grand Design for true social function, enter the Glorious State to manage social dysfunction. Our Brave New World will be a prison camp, and we will welcome it as the only way to manage given the anarchy without it.