Exceptional Parent - February 2010 - (Page 27) love for his children. Also, I’d be remiss not to say certainly that a reason I wanted to be part of this film was because, like anyone my age, there is no small measure of hero worship that goes into meeting, let alone working with, Harrison Ford—who of course was a childhood idol of mine. Harrison was the reason that I had the interest, the courage, the “I want to do that” feeling that young people have when they see an actor portray a character in a film, if indeed a career as an actor is something that they wish to pursue. He is the personification of so much of what I admire. And as a pair—and I don’t mean to pat myself on the back— I think we are well matched. In terms of going toe-to-toe and embodying the characters as written. EP : During the course of making the film, you got to know John Crowley. Having spent time with him, what would you say you were most impressed by? BF : He is a remarkable individual. Inspiring. To say that he is motivated doesn’t do him justice. What he has accomplished in terms of truly saving peoples’ lives in his own lifetime is worthy of accolades and awards. Now, spending some time with him and with Aileen and Megs and Patrick and John Jr., the first thing John will say is that Aileen deserves all the medals. Can you believe that? He defers to the loving relationship he has with his wife for being able to form a bond, confront these challenges, remain human throughout it, and move heaven and earth to do whatever it takes to get results. Now, I am painting a pretty glorious portrait of John and I am using the right colors and words in what I am describing—what I believe are fair ones. He is the kind of man that I have met who I really feel better for having known, let alone portrayed a version of in a film. And it is my fondest hope that I could do that with respect and with a sense of accuracy—but then at the same time allow for an audience to still not feel as if they are being force-fed a plate of their vegetables with someone wagging a finger at them. Do you know what I mean? After all, this is no cautionary tale. It’s no lark, but then again it’s not a big downer. This is a film that provides an audience the experience of overcoming what it means to have their family life threatened and then as a family survive it and do so with grace, with dignity, and sometimes even a measure of desperation, too. But it takes steely nerves, whip-smart intelligence, and a drive —a motivating drive—that just won’t take the word “no” as an answer. They took that word “no” and turned that into a “maybe,” and then went back to the “maybe” and turned it into a “yes.” EP : What are your thoughts on this film bringing awareness to families of children with special needs and rare diseases like Pompe? BF : I stand by the work in this film for reasons, of course, that raise awareness for this particular disorder and how important it is to parent your children in a way that’s loving, no matter what their challenges are in life. As extreme and extraordinary as this one is, there is no small measure of love that doesn’t disallow him from having his goals met. This film will certainly raise awareness about Pompe, and the research is ongoing. I visited John’s laboratory. They take the stiff and starchiness out of being a scientist and they allow for what they are doing to really be the motivating factor. They are not just doing tests and running numbers—this is all work that’s being done with the very simple aim of prolonging peoples lives and, in my book, that’s really quite admirable. I am grateful for that and I feel as though the experience of it taught me a thing or two about how, in my own life, to be a better parent. caregivers or family and friends, whatever it is. Sometimes you can’t do it alone—you need to have some help. John is currently the President and CEO of Amicus Therapeutics, a publicly held clinical-stage biopharmaceutical company focused on the discovery, development, and commercialization of a new class of small molecule, orally-administered drugs to treat a range of human genetic diseases. Amicus’ innovative therapies apply to conditions in which crucial proteins are defective as a result of improper folding. Crowley hopes that over the next couple of years they will be able to keep their technology moving forward and provide newer and better options for people with a whole range of diseases. He is also an officer in the Navy Reserve where he works at the US Special Operations Command. To learn more about the Crowley family, the film, and John’s new book visit http://www.crowleyfamily5.com. For more information on Pompe disesase visit http://www.unitedpompe.com. • www.eparent.com/EP MAGAZINE • February 2010 27 http://www.crowleyfamily5.com http://www.unitedpompe.com 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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