"Extraordinary Measures" film focuses on true story of father's quest to find cure for children's rare genetic disorder

From The Boston Herald:

Biotech is coming to the big screen.

Next week, CBS Films releases “Extraordinary Measures,” a movie that tells the story of one man’s quest to find a cure for his two children who suffer from a rare genetic disorder that would leave them unable to walk, eat or even breathe on their own.

The film is based on a true story that has its roots in Boston, but the city and Genzyme Corp., the company that found a treatment for Pompe disease, aren’t in the film.

And that’s fine with area scientists.

“Having a movie like this is tremendous,” said Dr. Robert Mattaliano, a vice president at Cambridge-based Genzyme who spent years trying to find a treatment for the disease. “I hope it increases awareness not only of these diseases and gives more hope to people with other rare diseases.”

Although Mattaliano is among the hundreds of researchers who helped develop the biotech drug Myozyme, the movies focuses on two main characters: the father who is determined to keep his children alive and the scientist who helps him.

“It’s a beautiful film,” said John Crowley, whose life inspired the movie starring Brendan Fraser, as Crowley, and Harrison Ford, who plays the ficitionalized Dr. Robert Stonehill. “It’s about risk taking, innovation and vision. It’s a testament to the American spirit.” (Both are pictured.)

Crowley was a young Harvard Business School graduate when he learned that his son and younger daughter have Pompe disease, an enzyme deficiency that causes muscle degeneration. At the time, there was no treatment or cure for it.

So Crowley quit his job and launched a biotechnology company in 1999. That firm, Novazyme Pharmaceuticals Inc. of Oklahoma City, was acquired two years later by Genzyme for $137.5 million.

Genzyme received federal approval for Myozyme in April 2006, but Mattaliano noted the treatment that ultimately reached the market actually wasn’t the one that Novazyme developed.

“We had four different drug candidates, and we decided to do a head-to-head comparison off them,” Mattaliano said. In the end, the data showed that one of the other candidates would be more successful.

Still, Crowley’s compelling story was out.

Harvard Business School published a case study, “A Father’s Love,” about the drug-development effort.

In 2006, Wall Street Journal reporter Geeta Anand published a book called “The Cure: How a Father Raised $100 Million - and Bucked the Medical Establishment - in a Quest to Save his Children,” which was optioned for the movie hitting theaters Jan. 22.

And Crowley’s personal take, a memoir titled “Chasing Miracles,” hits bookstores soon.