Not named in 'Extraordinary Measures' film, Oklahomans' efforts still are gaining attention local research served as inspiration but wasn't credited

Published: Friday, January 22, 2010 7:00 am By: Brandy McDonnell

The Oklahoman

The movie "Extraordinary Measures" features big-name stars, precocious child actors and life-and-death family drama "inspired by true events."

But it doesn't feature Oklahoma City, where important research central to the film took place at the University of Oklahoma Health Sciences Center and Presbyterian Health Foundation Research Park.

The film follows real-life father John Crowley (played by Brendan Fraser), who crusaded to find a treatment for Pompe disease, a rare hereditary muscle-wasting disorder afflicting his children, Megan and Patrick. In the film, Crowley finds an unlikely partner in University of Nebraska scientist Dr. Robert Stonehill (Harrison Ford). He and Crowley create a biotech startup to develop a drug from Stonehill's advanced theory, eventually selling the company to a pharmaceutical corporation that tests and sells the drug.

While Crowley, his wife, Aileen, and their children are real people, Stonehill isn't. Rather, he is a fictional character based on many scientists.

But only OU Health Sciences Center researcher Dr. Bill Canfield was involved in a biotech company with the real-life Crowley and later sold that startup to a pharmaceutical corporation.

In reality, Crowley joined Canfield's company, Novazyme, which incubated at Presbyterian Health Foundation Research Park.

In 2001, they sold the company to Boston-based Genzyme, one of the world's largest pharmaceutical companies.

Boston also gets snubbed in the film, which features a fictional corporation on the West Coast.

"The movie 'Extraordinary Measures' is causing a great deal of interest in Pompe disease. My congratulations to the people who worked on the film. Hollywood is Hollywood, and they have crafted a compelling story," Canfield said in an e-mail sent through his publicist.

Canfield, who has not seen the movie, added, "It was not a rogue scientist working alone but a dedicated team of scientists from Genzyme and around the world who worked tirelessly to bring the drug Myozime to patients. Research is ongoing for a second-generation drug that we hope will continue to improve the quality of life for people who suffer with Pompe disease."

Marva Ellard, Canfield's former partner in a downtown housing development, noted that "John Crowley is all over" the film and said she wishes it had given Canfield similar credit for his work.

Megan and Patrick Crowley, now 13 and 11, respectively, still take the drug featured in the film.

"I have empathy for John Crowley and his family. It's hard not to when you see those kids and everything that they have to go through just to stay alive," said Ellard, who attended a local preview screening of the film last week.

"But if Bill played a significant role in the development of that, I think he should have been given his due. And it just doesn't seem like he was."

She noticed striking similarities and differences between the fictional Stonehill and Canfield.

Both are intelligent, strong-willed, committed scientists who have dry senses of humor, enjoy the outdoors and aren't particularly comfortable with people they don't know.

While Ford's Stonehill is portrayed as a quick-tempered cowboy, she said Canfield is more low-key.

Ford, who also executive-produced the film, acknowledged in a Chicago Tribune interview that facts and timelines were altered for the film.

The actor told the publication "we were truthful to the necessary elements."

"Based on movie ethics," that may be the case, Ellard said, but moving the story out of Oklahoma City and Boston seems "arbitrary and unnecessary."

"Why didn't they just tell the story?" she asked.

Michael Anderson, president of Presbyterian Health Foundation Research Park, said Hollywood often fictionalizes stories based on true events, though recent films such as "The Soloist" and "Invictus" seem to hew closer to reality.

"What you have here is a film that is obviously (a) historical novel ... as opposed to history," said Anderson, who hasn't seen the film.

Though the movie doesn't feature Oklahoma City, it still is getting word out about the research park. Anderson has received e-mails referencing the film from people across the country.

Most are from parents of children with rare diseases inquiring about possible research here that might help their kids.

"It would have been really good for the city to have all that (filming) take place right here. ... We have a great scientist who did a great thing here, ... but the fact that it doesn't get credited in a Hollywood movie, that's just the way historical novels work," Anderson said.

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