CASTING A FAMILY UNIT
With Ford set to play Dr. Stonehill, finding the right actor to play John Crowley was essential. "With a dramatic film like this, the balance of the cast is very, very important," explains Vaughan. "The characters of John Crowley and Dr. Stonehill are very different but have to come together to achieve their common goal. It was important to find someone who could go head to head with Harrison on screen."
The filmmakers had admired Brendan Fraser's dramatic work in such films as Gods and Monsters and Crash. They knew he had the stature to play John Crowley so they sent him the script.
Fraser saw Extraordinary Measures as a unique opportunity: "I've made a lot of different kinds of movies, but I think this one stands apart from other work I've seen come my way. Sometimes in life the answer is 'no' and sometimes it's the right answer, the answer you have to live with. But John Crowley actually said, 'No is not acceptable. I'm going to find a way to turn no into a maybe, and then maybe into a yes.' If he was going to go down, he was going to go down swinging. Those are the ear markings of a true hero."
Harrison, Tom, and Brendan got together and had a work session. As Sher recalls there was "instant chemistry."
A big thumbs up to the casting choice of Brendan came from John Crowley, himself (who has a small cameo in the film, ironically portraying one of the businessmen to whom Crowley and Stonehill pitch for funding). "Brendan is terrific. He's capable of playing such a range of emotions, going from a serious businessman and entrepreneur, to being a dad, to being a husband. He's uniquely suited to the role."
Fraser felt honored to have the opportunity to bring John Crowley to the screen. He was also thrilled by the opportunity to work with Harrison Ford. "He's the actor I was inspired by, like so many legions of actors were. He was the individual who singularly inspired me to say 'I want to be on screen,'" Fraser beams. "You need someone in the back of your mind to call a role model; someone you would hope to one day emulate in the type of choices you make. For me, it was primarily Harrison. He's a great guy and I've thoroughly enjoyed working with him. I feel I'm better for it because I've learned a lot of things from him along the way."
Ford found Fraser to have the perfect attributes for the role of John Crowley. "Brendan brings understanding and great capacity to the telling of this story. We're very lucky to have him."
Though the film is largely driven by John Crowley and Dr. Stonehill, Aileen Crowley is in many ways the third hero of the story. "Aileen Crowley said 'I will take care of the children and give them a normal life, while you go out and start the company. That will be our deal together,'" explains Shamberg. "She acts every day like a normal mother but under the surface she's very tough."
Vaughan knew the casting of this role was crucial: "It's a tough role. There is a version of this story where Aileen and the domestic side get sidelined since the two men on their mission is more prominent. I needed to make sure I had an actress who was powerful enough and had the chops to show all aspects of the domestic side of the story, including all the subtleties and the humor which are very important."
They found the perfect actress to play Aileen in Keri Russell.
"Keri was the first person we met," says Sher. "We weren't casting the part yet, but she had read the script and was really moved by it. We loved her. We couldn't get our meeting with Keri out of our minds. We finally just said to her 'We know we met you first and we weren't even going through our process yet but we really want you.'"
"The first time I read the script, it was incredibly emotional," recalls Russell. "To want something is one thing, but to go after it and create it, it's incredible. Every parent knows that no matter if your kid has a cold or the flu, or in this case a very rare disease, you want to do something for them. The fact that these parents acted on that instinct to this extent is extremely moving."
Aileen was thrilled with the casting choice. "How could I not be? She's beautiful, so sweet and nice. She spent an afternoon just hanging out with the kids, getting to know them. She didn't have to do that."
"It's a movie that asks a lot of the actors," says Vaughan. "It requires them to run through a whole range of acting abilities and skills and it all has to be grounded in truth and reality." Vaughan is quick to praise his cast's professionalism, dedication, and range of emotional depth. "It was critical to choose the right people for these multi-layered roles. If you don't have the right people in your movie, then it's very hard to direct them to give the right performance. And we got really lucky with Brendan, Harrison and Keri - and the children are phenomenal."
The casting director saw approximately 800 kids before they landed on Meredith Droeger for Megan Crowley (the Crowleys' daughter). They saw hundreds more for John Jr. and Patrick (the other two Crowley children), for which they cast Sam M. Hall and Diego Velazquez respectively.
John Crowley found Meredith Droeger especially convincing. "Megan has an incredibly dry wit and sarcastic sense of humor. Meredith captures that perfectly well. She also convincingly conveys Megan's strength and determination."
THE CROWLEYS ON SET
The Crowley family flew to Portland during production for a set visit. "It was very important to all of us making this film that the Crowleys be a part of this experience," says Sher.
Vaughan recalls that he had early apprehension in meeting the film's subjects: "I was slightly wary because we're telling an 'inspired by' story; our film is not a documentary. But the Crowleys were very good about understanding all of that. They are a remarkable family, and remarkable people to spend time with."
Their presence on set also allowed Vaughan to witness the family's dynamic first hand and infuse the film with that energy. "There's lots of banter within the family and I think there's a danger if I hadn't met them, and got to know them on some level, that I might have been too precious and delicate in my approach to the material. So knowing them made my approach to the film very robust. The film has passion and lots of drama, and that comes directly from the Crowley family."
THE PRODUCTION LANDS IN THE PACIFIC NORTHWEST
It was December 2008 when Tom Vaughan arrived in Portland to sub-freezing temperatures and a record breaking 18.9 inches of snow, one of the worst snowstorms in Portland's history. He was meeting executive producer Nan Morales for a 2-day scout. Nan had recently shot in Oregon and thought the Pacific Northwest could work out perfectly for Extraordinary Measures. And, since the film was inspired by the Crowleys' story, the filmmakers had the freedom to place the film geographically to their liking (the Crowleys actually hail from New Jersey). Tom and the producers saw the area's potential almost instantly.
"I think it was the scope," says Morales. "There are so many layers to Portland - suburbia to high rises. You can stand in a building and see the city, and then beyond that you'll see a river, and beyond that you'll see Mt. Hood. Oregon has many different looks: beaches, mountains, and desert areas."
A geographic location with varying looks was required as the story takes place across a number of states. In the film, the family lives in Portland, but John travels to Nebraska and Chicago, and the family eventually ends up in Seattle.
Vaughan and Production Designer Derek Hill needed to differentiate between the locations for geographic accuracy but also to reflect the different stages of John Crowley's journey.
"Part of the challenge visually was to demarcate the different stages and to take an approach that would help tell the story with clarity," explains Vaughan. "We worked very hard, for example, to show the physical differences between John Crowley's home in Portland and Stonehill's world in Nebraska. John walks out on his good job in the downtown Portland area, and the next thing you know he's driving up a deserted road in the middle of Nebraska and arriving at Stonehill's house. He's just thrown his whole life off track and bet it on this guy. Portland is a warm domestic place at the start of the movie and the colors and design had to reflect that. And then Nebraska is a very alien place for John's character. The scenes in Nebraska emphasize the state's flatness and that there's a lot of space and far less people so you get a sense of John's alienation."
Set Decorator Denise Pizzini, who collaborated closely with Hill to carry out Tom's vision, recalls how dressing the different Crowley homes required visually showing their changing economic status but also their consistent commitment to remain a grounded family. "We show them upgrade a little but we maintain the same warm family feel to each space. We didn't want it to feel like overnight they got all this money and they went out and bought a bunch of fabulous stuff. So we used a lot of the same furniture to dress these various sets. And there were always toys all over the place."
When John and Aileen Crowley visited the sets, they were in awe of the similarity of the houses and neighborhoods chosen for filming to the places they actually lived in during their journey. From a Wilshire Park Craftsman-style home, to an exquisite home with a breathtaking valley view in Lake Oswego, to a contemporary beach house on the gorgeous, sprawling and rugged Oregon coast in Manzanita Beach. They felt the film was right on the money.
Oregon and the surrounding Pacific Northwest offered many locations that were a perfect fit. One of the biggest draws of the area was the 177-acre Nike World Campus in Beaverton. It served as Zymagen Pharmaceutical, theoretically located in Seattle. The Nike campus proved to be a perfect choice and had never before been shot. The production team worked hard to transform Nike's unique campus into an alternative reality that was cold and sterile. Pizzini reveals the reasoning behind this, "It was important for the space to look impersonal and formal to make John and Dr. Stonehill feel uncomfortable and out of place. The offices and labs were made to look very monochromatic with cold, hard surfaces to the point where we even painted anything bronze to look more silver-gray. Anything to take the softness away. And we also tied in the exterior of Nike which is very angular and geometric."
The brand new Columbian office building in Vancouver, WA was dressed and shot as the interior of the Zymagen offices. In addition to serving as a key interior location, the Columbian proved a significant resource for Pizzini. She recalls, "When you are representing big offices, you need multiples of many things, especially furniture. We ended up renting the furniture, including cubicles, from the Columbian to use in another location. It was a great help."
In addition to office furniture, the production required a large amount of lab and medical equipment. Pizzini shipped this equipment in from manufacturers and vendors from all over the country. Everything had to be as authentic as possible. Judging by the response from actual researchers and doctors present on set, it appears the production succeeded in hitting that mark. "Dr. Hung Do and others just couldn't believe it. They said 'We can actually start doing experiments here!'" notes Pizzini.
Another key location was the Oregon Health and Science University, which is a center for Pompe treatment. Not only were OHSU doctors consultants on the film, but patients and their families were also consulted and asked to be part of scenes shooting in the hospital. Pivotal scenes were shot in OHSU's corridors and on the Skyway that connects OHSU with the VA Hospital. During filming, the hospitals remained fully operational. OHSU even provided a perfect spot for a visit by Governor Ted Kulongoski. He welcomed the Extraordinary Measures production to Oregon and held a press conference for local media.
A FAMILY CHANGED FOREVER
It was winter of 1998 and John and Aileen Crowley were growing concerned that their baby daughter Megan wasn't crawling. At the recommendation of their pediatrician, they took her to a neurologist. Within a month of that appointment, the Crowleys' life changed forever. At fifteen months old, John and Aileen's daughter Megan was diagnosed with Pompe Disease, a very rare genetic disorder which causes a deficiency in the enzyme that breaks down glycogen. The build up of glycogen causes muscle weakness throughout the body, affecting the skeletal muscles, diaphragm, nervous system, liver, and heart. Pompe Disease is a "cousin" disease of muscular dystrophies and a number of other neuromuscular diseases such as Lou Gehrig's Disease. "The [Doctors] told us it was a serious disease," recalls John. "They told us it was a fatal disease."
For John and his wife Aileen, it seemed like nothing could get worse. Then they received the call a few months later, after Megan's diagnosis, informing them that their newborn son, Patrick, had also been afflicted with the deadly disease. John relates, "Within a couple of months, we learned we had two kids who probably wouldn't live to be two - it was heartbreaking" (they would later learn that the life expectancy for the hybrid infantile/juvenile genetic form of Pompe that Megan and Patrick have is 'up to 9 years').
The family was told there was little that could be done. There was no cure and the pace of scientific research on Pompe Disease had been slow, too slow for the Crowley family. Pompe was an orphan disease which means, since it's rare, pharmaceutical and biotech companies don't have as much financial incentive to devote resources to finding a drug to cure it. The Crowleys started to research Pompe but felt constantly out of the loop while navigating the medical landscape, and they were running out of time.
And Megan and Patrick were progressively getting sicker. Day-to-day life was a struggle, living with Pompe. As their muscles weakened, swallowing, chewing and breathing grew more and more difficult and they were soon put on ventilators. They also couldn't walk .
A turning point came to John during one of Megan's hospital stays. Megan was profoundly sick; her heart had stopped three times in six weeks. John had almost given up hope. The defining moment came when Megan's eyes locked on John and Aileen. John recalls that, though she could not speak or smile, her little eyes spoke for her - "They told us she didn't want to quit. She wanted to fight. And from that moment on, we would too."
John and Aileen started their own business to develop treatment against Pompe. Though John had limited experience in the medical world, he allied himself with numerous scientists and doctors. Now John was faced with an incredible trade-off. His race to develop treatment to save his children required an enormous amount of time - time he could no longer devote to his stable, secure, well paying corporate job (which provided his family with vital health insurance) and precious time he could otherwise spend with his children. His new mission would also mean a lot of traveling, which would put a strain on his marriage. But John put all that aside and leaped. "I think I did my job, as a dad. I did what I had to do," says John.
Times did get tough for the Crowley family. John received a vote of confidence from his strongest ally - Aileen. "I had a lot of confidence in John," she remembers. "I knew he had done the research and homework, we just needed to give him our full support."
Eventually, John's business developed a drug that showed promising, positive results. John quickly pushed for Megan and Patrick to begin the treatment in clinical trials. However, hospital review boards were not ethically comfortable with John being both a parent to the patients and executive of the company developing the drug. John made the decision easy for the boards. He resigned from his own company.
With this, the clinical study initiated and Megan and Patrick started receiving the life saving treatment. John was even able to push the button himself to begin the infusion on Megan, while Aileen pushed the button to start Patrick's.
John recalls that he hadn't seen his children smile in two years, an affect of Pompe's Disease. "After the first couple of months [of treatment], we started to notice Megan was smiling again. So this was the first sign to me that there was some hope." At the children's twelve week review, the Crowley's continued to see extraordinary results. John remembers looking at his daughter and telling her, "'This means your heart is getting better. You're going to live to be an old lady.'" It was a moment filled with joy and exhaustion. "And then she looked at me - kinda gave me a thumbs up- then threw her arms around me," laments John.
"People always say, 'How can you do it?' and I respond 'How can you not?'" comments Aileen. "I think most people in this position would do anything they possibly could for their kids."
The number of people with Pompe Disease worldwide is estimated to be somewhere between 5,000 and 10,000*. In 2006, the FDA approved the enzyme replacement therapy treatment that John Crowley worked so tirelessly to see to clinical trial. Patients who are given this treatment at birth can see their lives prolonged and their quality of life significantly improved. Today, John Crowley is head of a new biopharmaceutical company called Amicus Therapeutics which is developing drugs for multiple rare genetic diseases.
As of Fall 2009, Megan is twelve years old and Patrick is eleven. They continue to fight the battle against Pompe Disease one day at a time.
Dr. Hung Do (Lab Technical Advisor)
Dr. Hung Do is currently the Director of the Discovery Biology Department at Amicus Therapeutics, a New Jersey biopharmaceuticals company.
He has a PhD in medical biochemistry and genetics with extensive training in the areas of protein synthesis, folding, and trafficking. Dr. Do uses this knowledge and experience to better understand how inherited DNA mutations effect the resultant proteins which lead to reduced biological activity and ultimately disease. He and his colleagues utilize this information to develop new therapeutic approaches for various genetic diseases including Pompe disease.
Dr. Do was introduced to Pompe disease in 2000 at a pharmaceutical company where he was then working. It was also at such company where Dr. Do met John Crowley, the company's CEO, and learned about John's desperate search for a treatment for his kids Megan and Patrick. The company was firmly committed to working around the clock and to do everything humanly possible to develop an effective medicine for John's children and others afflicted with Pompe disease. The company made substantial progress towards this goal in a very short time and was ultimately acquired by another pharmaceutical company that was also developing a drug for Pompe disease. Dr. Do stayed on for the next 4 years as the project leader for the second generation drug.
Dr. Do rejoined John Crowley at Amicus Therapeutics in 2005. He currently leads the discovery research at Amicus developing small molecule treatment approaches for various lysosomal storage diseases including Pompe. These compounds are designed to aid mutant proteins to fold more stably and efficiently and thereby increase cellular biological activity for individuals afflicted with these metabolic diseases. Dr. Do and his colleagues are now utilizing similar strategies to develop novel treatments for other diseases such as Parkinson's.
Melanie Sanders RN, BSN, CPN (Pompe Technical Advisor)
Melanie Sanders is a pediatric registered nurse and the staff educator for the Pediatric Acute Care units at OHSU Doernbecher Children's Hospital in Portland, Oregon. Her current role includes providing bedside nursing to children admitted to inpatient units, educating parents and caregivers about their child's diagnosis and specialized care needs. In addition to providing on-going professional development to the staff on her units, she also contributes to training new nursing staff.
Before becoming a nurse in 2003, Sanders worked for several years as a social worker. She was involved in programs that provided care to children in foster care and those with developmental disabilities.