Exceptional Parent - February 2010 - (Page 25) Exceptional Parent magazine EP : Those of us involved in the special needs community have been familiar with your family’s story for many years, but Hollywood has certainly now taken an interest as well. How did the production of the film come about? John Crowley JC : Well, it was a progression that dates back to the end of August of 2003 when Geeta Anand wrote the front page Wall Street Journal story [“For His Sick Kids, a Father Struggled to Develop a Cure”] about us. That piece lead to the development of the book [The Cure: How a Father Raised $100 Million—And Bucked the Medical Establishment—In a Quest to Save His Children] and then after that we heard that there were producers in Hollywood who were interested in creating a movie about us. And the production company that was most interested had producers who were working with Harrison Ford. Harrison had read The Wall Street Journal article and those producers had made World Trade Center and Erin Brockovich, so they had experience working with real life stories. So that lead to close to a year of discussions and meetings—they flew out here a couple of times and we flew to Los Angeles—until we got comfortable with the idea of granting our life rights and signing them to be used by people who were making a film. So watching it all come together and watching it go from concept, to idea, to a screenplay, to having the actors lined up, to the studio on board, and then actually making it a movie… it was a long process. But they tell me in the movie-making world this was actually a really quick process (laughs). EP : Having seen the film, how true to your family’s story do you feel it is? JC : They have done a remarkable job of capturing the spirit of our family. It’s inspired by us, so they certainly take dramatic license in a couple of areas, but in every case, through every turn— both on the family side and on the business side—they captured the spirit of what we went through and the difficulties and joys. I think they did that beautifully well. But characters have been composited and timelines altered. For instance, we lived in New Jersey, but they have us living in Portland, Oregon… although in the movie Harrison does call my character “Jersey,” referencing that I grew up in New Jersey. But it keeps very much in faith with our family life. EP : Both stars, Brendan Fraser [see sidebar] and Harrison Ford, have had extremely flattering things to say about you since working on the film and getting to know you throughout the process of making it. What has it been like to have these big Hollywood celebrities going on about you and how great you are? JC : It’s very humbling. They’re both great guys – they are both dads of several kids each, so they have that dad perspective. And they are both obviously wonderful actors. But they were very, very passionate about this project. For instance, back in January Harrison called and said he wanted to learn the science, so he asked if he could come with Brendan. Brendan came to my company and wanted to know what a biotech CEO does every day… I don’t know if he found that fun or not (laughs)—although it was the day of our St. Patrick’s Day party so I think he thought it was awesome. But he also spent quite a bit of time with Aileen and I individually, and as a couple, and then with our family. He spent a lot of time with our kids, as did Keri Russell—who spent time with Aileen and the kids. And that was important to me because they didn’t want to impersonate us —they had to make the characters their own characters—but they also very much wanted to capture the spirit of us. And I think they did a great job. EP : How do your kids feel about seeing their lives depicted onscreen? JC : You know, our kids—like everyone’s kids—they all have their own personalities. Megan is very, very precocious and outgoing and she is very excited about it. She thinks hopefully she is going to be able to leverage this to meet the Jonas Brothers. That’s her goal out of all of this! And the boys are I think a little apprehensive, but I think excited about it all. And I have, particularly with Megan and Patrick, talked with them and told them: here is this one story out of countless stories of kids with special needs and the world is going to see little actors in wheelchairs with trachs and vents. For all of the people that will know them through this story, they may also know a lot of kids like them and there is a real possibility that they are a proxy for a lot of special needs children. In some respects, for every special needs child. And I think they understand that as well. EP : What do you hope all families take away from this film? JC : I think, above it all, it really is about hope and inspiration and family messages about strength, hope, and joy. And I think particularly the readers of Exceptional Parent will relate to this and empathize with it on a level that few people can. But I think for all families there are some really important messages about life and overcoming adversity and making the most out of the cards you are dealt in life and about continued on page 26 Pho by Brian Doben visit our labs, which he did. He spent a whole day and then a couple of days as follow-up at our labs and then I actually took him around to visit other biotech companies to help him understand what these companies looked like and what the pieces of equipment are used for. We had our scientists take him around for hours on end - taking him through Biology and Genetics 101. By the end of it he was writing carbohydrate structures and protein structures on a board. So he really took the role seriously. And then he wanted to learn a lot about us as people. And the same www.eparent.com/EP MAGAZINE • February 2010 25 http://www.eparent.com Table of Contents for the Digital Edition of Exceptional Parent - February 2010 Exceptional Parent - February 2010 Contents Ancora Imparo New Products Further Reading Movie Review Organizational Spotlight What's Happening Insight on Federal Policy. This Month's Focus: Section 504 Search & Respond The Feeding of Great Children: The Impact of Nutrition on Learning Jump with Jill - High-Energy "Rockstar Nutritionist" Jill Jayne Gets Kids Moving - And Eating Right From Diagnosis, to Life Saving Therapy, to Hollywood: The Journey of John Crowley Research Frontiers: Understanding Science, Unlocking Potential Talking Transition - An Interview with An Expert SpecialCare: Getting and Staying Organized - The Effort Pays Off in Many Ways What You Eat Can Make a Difference The Positive Impact of Specialized Diet Food Intervention: How Do I Get Started? American Academy of Developmental Medicine and Dentistry (AADMD) Who Gets to Be an Advocate? Special Needs Alliance Families Reaching Professionals Living With a Disability Exceptional Parent - February 2010 Exceptional Parent - February 2010 - Exceptional Parent - February 2010 (Page Cover1) Exceptional Parent - February 2010 - Exceptional Parent - February 2010 (Page Cover2) Exceptional Parent - February 2010 - Exceptional Parent - February 2010 (Page 1) Exceptional Parent - February 2010 - Contents (Page 2) Exceptional Parent - February 2010 - Contents (Page 3) Exceptional Parent - February 2010 - Contents (Page 4) Exceptional Parent - February 2010 - Contents (Page 5) Exceptional Parent - February 2010 - Ancora Imparo (Page 6) Exceptional Parent - February 2010 - Ancora Imparo (Page 7) Exceptional Parent - February 2010 - New Products (Page 8) Exceptional Parent - February 2010 - Further Reading (Page 9) Exceptional Parent - February 2010 - Movie Review (Page 10) Exceptional Parent - February 2010 - Organizational Spotlight (Page 11) Exceptional Parent - February 2010 - What's Happening (Page 12) Exceptional Parent - February 2010 - What's Happening (Page 13) Exceptional Parent - February 2010 - Insight on Federal Policy. This Month's Focus: Section 504 (Page 14) Exceptional Parent - February 2010 - Insight on Federal Policy. This Month's Focus: Section 504 (Page 15) Exceptional Parent - February 2010 - Search & Respond (Page 16) Exceptional Parent - February 2010 - Search & Respond (Page 17) Exceptional Parent - February 2010 - Search & Respond (Page 18) Exceptional Parent - February 2010 - Search & Respond (Page 19) Exceptional Parent - February 2010 - The Feeding of Great Children: The Impact of Nutrition on Learning (Page 20) Exceptional Parent - February 2010 - The Feeding of Great Children: The Impact of Nutrition on Learning (Page 21) Exceptional Parent - February 2010 - Jump with Jill - High-Energy "Rockstar Nutritionist" Jill Jayne Gets Kids Moving - And Eating Right (Page 22) Exceptional Parent - February 2010 - Jump with Jill - High-Energy "Rockstar Nutritionist" Jill Jayne Gets Kids Moving - And Eating Right (Page 23) Exceptional Parent - February 2010 - From Diagnosis, to Life Saving Therapy, to Hollywood: The Journey of John Crowley (Page 24) Exceptional Parent - February 2010 - From Diagnosis, to Life Saving Therapy, to Hollywood: The Journey of John Crowley (Page 25) Exceptional Parent - February 2010 - From Diagnosis, to Life Saving Therapy, to Hollywood: The Journey of John Crowley (Page 26) Exceptional Parent - February 2010 - From Diagnosis, to Life Saving Therapy, to Hollywood: The Journey of John Crowley (Page 27) Exceptional Parent - February 2010 - From Diagnosis, to Life Saving Therapy, to Hollywood: The Journey of John Crowley (Page 28) Exceptional Parent - February 2010 - From Diagnosis, to Life Saving Therapy, to Hollywood: The Journey of John Crowley (Page 29) Exceptional Parent - February 2010 - Research Frontiers: Understanding Science, Unlocking Potential (Page 30) Exceptional Parent - February 2010 - Research Frontiers: Understanding Science, Unlocking Potential (Page 31) Exceptional Parent - February 2010 - Research Frontiers: Understanding Science, Unlocking Potential (Page 32) Exceptional Parent - February 2010 - Research Frontiers: Understanding Science, Unlocking Potential (Page 33) Exceptional Parent - February 2010 - Research Frontiers: Understanding Science, Unlocking Potential (Page 34) Exceptional Parent - February 2010 - Research Frontiers: Understanding Science, Unlocking Potential (Page 35) Exceptional Parent - February 2010 - Research Frontiers: Understanding Science, Unlocking Potential (Page 36) Exceptional Parent - February 2010 - Talking Transition - An Interview with An Expert (Page 37) Exceptional Parent - February 2010 - Talking Transition - An Interview with An Expert (Page 38) Exceptional Parent - February 2010 - Talking Transition - An Interview with An Expert (Page 39) Exceptional Parent - February 2010 - SpecialCare: Getting and Staying Organized - The Effort Pays Off in Many Ways (Page 40) Exceptional Parent - February 2010 - SpecialCare: Getting and Staying Organized - The Effort Pays Off in Many Ways (Page 41) Exceptional Parent - February 2010 - SpecialCare: Getting and Staying Organized - The Effort Pays Off in Many Ways (Page 42) Exceptional Parent - February 2010 - SpecialCare: Getting and Staying Organized - The Effort Pays Off in Many Ways (Page 43) Exceptional Parent - February 2010 - What You Eat Can Make a Difference (Page 44) Exceptional Parent - February 2010 - What You Eat Can Make a Difference (Page 45) Exceptional Parent - February 2010 - The Positive Impact of Specialized Diet (Page 46) Exceptional Parent - February 2010 - The Positive Impact of Specialized Diet (Page 47) Exceptional Parent - February 2010 - The Positive Impact of Specialized Diet (Page 48) Exceptional Parent - February 2010 - Food Intervention: How Do I Get Started? (Page 49) Exceptional Parent - February 2010 - Food Intervention: How Do I Get Started? (Page 50) Exceptional Parent - February 2010 - American Academy of Developmental Medicine and Dentistry (AADMD) (Page 51) Exceptional Parent - February 2010 - American Academy of Developmental Medicine and Dentistry (AADMD) (Page 52) Exceptional Parent - February 2010 - American Academy of Developmental Medicine and Dentistry (AADMD) (Page 53) Exceptional Parent - February 2010 - American Academy of Developmental Medicine and Dentistry (AADMD) (Page 54) Exceptional Parent - February 2010 - American Academy of Developmental Medicine and Dentistry (AADMD) (Page 55) Exceptional Parent - February 2010 - Who Gets to Be an Advocate? (Page 56) Exceptional Parent - February 2010 - Who Gets to Be an Advocate? (Page 57) Exceptional Parent - February 2010 - Special Needs Alliance (Page 58) Exceptional Parent - February 2010 - Special Needs Alliance (Page 59) Exceptional Parent - February 2010 - Special Needs Alliance (Page 60) Exceptional Parent - February 2010 - Special Needs Alliance (Page 61) Exceptional Parent - February 2010 - Families Reaching Professionals (Page 62) Exceptional Parent - February 2010 - Families Reaching Professionals (Page 63) Exceptional Parent - February 2010 - Living With a Disability (Page 64) http://www.eparentdigital.com/nxtbooks/exceptionalparent/201009 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201008 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201007 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201006 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201005 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201004 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201003 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201002 http://www.eparentdigital.com/nxtbooks/exceptionalparent/2010rg http://www.eparentdigital.com/nxtbooks/exceptionalparent/200912 http://www.eparentdigital.com/nxtbooks/exceptionalparent/200911 http://www.eparentdigital.com/nxtbooks/exceptionalparent/200910 http://www.eparentdigital.com/nxtbooks/exceptionalparent/200909 http://www.eparentdigital.com/nxtbooks/exceptionalparent/200908 http://www.eparentdigital.com/nxtbooks/exceptionalparent/200907 http://www.eparentdigital.com/nxtbooks/exceptionalparent/200906 http://www.nxtbookMEDIA.com
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