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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 www.crowleyfamily5.com, 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. California Sex Offender Management Board (CASOMB) End of Year Report 2014. (page 13) Under the current system many local registering agencies are challenged just keeping up with registration paperwork. It takes an hour or more to process each registrant, the majority of whom are low risk offenders. As a result law enforcement cannot monitor higher risk offenders more intensively in the community due to the sheer numbers on the registry. Some of the consequences of lengthy and unnecessary registration requirements actually destabilize the life’s of registrants and those -such as families- whose lives are often substantially impacted. Such consequences are thought to raise levels of known risk factors while providing no discernible benefit in terms of community safety. The full report is available online at. http://www.casomb.org/index.cfm?pid=231 National Institute of Justice (NIJ) US Department of Justice Office of Justice Programs United States of America. The overall conclusion is that Megan’s law has had no demonstrated effect on sexual offenses in New Jersey, calling into question the justification for start-up and operational costs. Megan’s Law has had no effect on time to first rearrest for known sex offenders and has not reduced sexual reoffending. Neither has it had an impact on the type of sexual reoffense or first-time sexual offense. The study also found that the law had not reduced the number of victims of sexual offenses. The full report is available online at. https://www.ncjrs.gov/app/publications/abstract.aspx? ID=247350 The University of Chicago Press for The Booth School of Business of the University of Chicago and The University of Chicago Law School Article DOI: 10.1086/658483 Conclusion. The data in these three data sets do not strongly support the effectiveness of sex offender registries. The national panel data do not show a significant decrease in the rate of rape or the arrest rate for sexual abuse after implementation of a registry via the Internet. The BJS data that tracked individual sex offenders after their release in 1994 did not show that registration had a significantly negative effect on recidivism. And the D.C. crime data do not show that knowing the location of sex offenders by census block can help protect the locations of sexual abuse. This pattern of noneffectiveness across the data sets does not support the conclusion that sex offender registries are successful in meeting their objectives of increasing public safety and lowering recidivism rates. The full report is available online at. http://www.jstor.org/stable/full/10.1086/658483 These are not isolated conclusions but are the same outcomes in the majority of conclusions and reports on this subject from multiple government agencies and throughout the academic community. People, including the media and other organizations should not rely on and reiterate the statements and opinions of the legislators or other people as to the need for these laws because of the high recidivism rates and the high risk offenders pose to the public which simply is not true and is pure hyperbole and fiction. They should rely on facts and data collected and submitted in reports from the leading authorities and credible experts in the fields such as the following. California Sex Offender Management Board (CASOMB) Sex offender recidivism rate for a new sex offense is 0.8% (page 30) The full report is available online at http://www.cdcr.ca.gov/Adult_Research_Branch/Research_Documents/2014_Outcome_Evaluation_Report_7-6-2015.pdf California Sex Offender Management Board (CASOMB) (page 38) Sex offender recidivism rate for a new sex offense is 1.8% The full report is available online at. http://www.google.com/url?sa= t&source=web&cd=1&ved= 0CCEQFjAA&url=http%3A%2F% 2Fwww.cdcr.ca.gov%2FAdult_ Research_Branch%2FResearch_ documents%2FOutcome_ evaluation_Report_2013.pdf&ei= C9dSVePNF8HfoATX-IBo&usg=AFQjCNE9I6ueHz-o2mZUnuxLPTyiRdjDsQ Bureau of Justice Statistics 5 PERCENT OF SEX OFFENDERS REARRESTED FOR ANOTHER SEX CRIME WITHIN 3 YEARS OF PRISON RELEASE WASHINGTON, D.C. Within 3 years following their 1994 state prison release, 5.3 percent of sex offenders (men who had committed rape or sexual assault) were rearrested for another sex crime, the Justice Department’s Bureau of Justice Statistics (BJS) announced today. The full report is available online at. http://www.bjs.gov/content/pub/press/rsorp94pr.cfm Document title; A Model of Static and Dynamic Sex Offender Risk Assessment Author: Robert J. McGrath, Michael P. Lasher, Georgia F. Cumming Document No.: 236217 Date Received: October 2011 Award Number: 2008-DD-BX-0013 Findings: Study of 759 adult male offenders under community supervision Re-arrest rate: 4.6% after 3-year follow-up The sexual re-offense rates for the 746 released in 2005 are much lower than what many in the public have been led to expect or believe. These low re-offense rates appear to contradict a conventional wisdom that sex offenders have very high sexual re-offense rates. The full report is available online at. https://www.ncjrs.gov/pdffiles1/nij/grants/236217.pdf Document Title: SEX OFFENDER SENTENCING IN WASHINGTON STATE: RECIDIVISM RATES BY: Washington State Institute For Public Policy. A study of 4,091 sex offenders either released from prison or community supervision form 1994 to 1998 and examined for 5 years Findings: Sex Crime Recidivism Rate: 2.7% Link to Report: http://www.oncefallen.com/files/Washington_SO_Recid_2005.pdf Document Title: Indiana’s Recidivism Rates Decline for Third Consecutive Year BY: Indiana Department of Correction 2009. The recidivism rate for sex offenders returning on a new sex offense was 1.05%, one of the lowest in the nation. In a time when sex offenders continue to face additional post-release requirements that often result in their return to prison for violating technical rules such as registration and residency restrictions, the instances of sex offenders returning to prison due to the commitment of a new sex crime is extremely low. Findings: sex offenders returning on a new sex offense was 1.05% Link to Report: http://www.in.gov/idoc/files/RecidivismRelease.pdf Once again, These are not isolated conclusions but are the same outcomes in the majority of reports on this subject from multiple government agencies and throughout the academic community. No one can doubt that child sexual abuse is traumatic and devastating. The question is not whether the state has an interest in preventing such harm, but whether current laws are effective in doing so. Megan’s law is a failure and is destroying families and their children’s lives and is costing tax payers millions upon millions of dollars. The following is just one example of the estimated cost just to implement SORNA which many states refused to do. From Justice Policy Institute. Estimated cost to implement SORNA Here are some of the estimates made in 2009 expressed in 2014 current dollars: California, $66M; Florida, $34M; Illinois, $24M; New York, $35M; Pennsylvania, $22M; Texas, $44M. In 2014 dollars, Virginia’s estimate for implementation was $14M, and the annual operating cost after that would be $10M. For the US, the total is $547M. That’s over half a billion dollars – every year – for something that doesn’t work. http://www.justicepolicy.org/images/upload/08-08_FAC_SORNACosts_JJ.pdf. Attempting to use under-reporting to justify the existence of the registry is another myth, or a lie. This is another form of misinformation perpetrated by those who either have a fiduciary interest in continuing the unconstitutional treatment of a disfavored group or are seeking to justify their need for punishment for people who have already paid for their crime by loss of their freedom through incarceration and are now attempting to reenter society as honest citizens. When this information is placed into the public’s attention by naive media then you have to wonder if the media also falls into one of these two groups that are not truly interested in reporting the truth. Both of these groups of people that have that type of mentality can be classified as vigilantes, bullies, or sociopaths, and are responsible for the destruction of our constitutional values and the erosion of personal freedoms in this country. I think the media or other organizations need to do a in depth investigation into the false assumptions and false data that has been used to further these laws and to research all the collateral damages being caused by these laws and the unconstitutional injustices that are occurring across the country. They should include these injustices in their report so the public can be better informed on what is truly happening in this country on this subject. Thank you for your time.

  2. Freedom as granted in the Constitution cannot be summarily disallowed without Due Process. Unable to to to the gym, church, bowling alley? What is this 1984 level nonsense? Congrats to Brian for having the courage to say that this was enough! and Congrats to the ACLU on the win!

  3. America's hyper-phobia about convicted sex offenders must end! Politicians must stop pandering to knee-jerk public hysteria. And the public needs to learn the facts. Research by the California Sex Offender Management Board as shown a recidivism rate for convicted sex offenders of less than 1%. Less than 1%! Furthermore, research shows that by year 17 after their conviction, a convicted sex offender is no more likely to commit a new sex offense than any other member of the public. Put away your torches and pitchforks. Get the facts. Stop hysteria.

  4. He was convicted 23 years ago. How old was he then? He probably was a juvenile. People do stupid things, especially before their brain is fully developed. Why are we continuing to punish him in 2016? If he hasn't re-offended by now, it's very, very unlikely he ever will. He paid for his mistake sufficiently. Let him live his life in peace.

  5. This year, Notre Dame actually enrolled an equal amount of male and female students.

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