Exceptional Parent - February 2010 - (Page 11) ORGANIZATIONAL SPOTLIGHT • By Nancy Henderson Nicole Boice saw firsthand the anguish her friend Kelly went through after giving birth to a son with a rare genetic disorder. Born with involuntary eye movements, extra digits on his hands and feet, a hooked arm and clubfoot, clenched fists, low muscle tone and contractures in his fingers, the child couldn’t breast feed, digest food or cough up phlegm, and he suffered several bouts of bronchitis and pneumonia. After two and a half years, doctors finally diagnosed the baby with Joubert syndrome, a condition also characterized by an underdeveloped or missing portion of the brain that controls balance and coordination. Boice was so moved by Kelly’s feelings of helplessness, isolation and frustration that in September 2008, she launched the Children’s Rare Disease Network (CRDN) to boost public awareness and connect the millions of impacted families and caregivers. Boice knew that, by working together, the families of children affected by Angelman syndrome, Fragile X and other disorders could do more than they could alone. By definition, a rare disease impacts fewer than 200,000 people, which not only makes it difficult to diagnose and treat, but can also create a financial hardship for families seeking solutions. Collectively, however, more than 25 million people in the U.S. are born with 6,000 identified rare diseases. And they all need the same thing: a doctor who understands their child’s illness, the ability to afford medical care, information about scientific developments, and resources to help them cope with physical and social issues. ”Rare disease needs a voice, a champion that will tell the world that we can no longer look past these families and their children, our friends, relatives and neighbors and ignore their needs,” Boice wrote on the California-based organization’s website. ”There has been little attention paid towards rare diseases as a whole because the families affected by them are focused on their individual issues. As a result the efforts today are segmented. We intend to change that.” To accomplish this, CRDN serves as an online home to link families, organizations, physicians and researchers. Blogs, podcasts and social networking venues help parents find each other, access the information they need and share common problems. They can also post videos, success stories and photos; learn how to advocate for their children; and better understand specific diseases through comprehensive databases. An online SOLVE Toolkit shows parents what steps to take to reach a diagnosis. The feedback from participants has been very promising. ”There are millions of children with rare diseases who have absolutely underway to raise research funds through the sale of special art pieces auctioned at an annual gala event. On February 28—Global Rare Disease Day—the organization will team up with the Global Genes Project to help raise awareness of this issue. Thanks to an advisory board made up of children, CRDN will also partner with DonateGames.org to generate funds for rare disease charities. The six-member “Kids Helping Kids” board has, in fact, become a vital part of CRDN. The mother of two healthy children, Boice felt it was important that they learn to serve, give back and help make a difference. The board president is a sixthgrader with diabetes. In the future, Boice hopes to see ”a robust community, sharing information, supporting one another regardless of disease.” She Greater awareness leads to greater understanding. With greater understanding comes greater funding for research. And that eventually leads to new therapies, improved lives and hopefully cures. nowhere to turn for information,” wrote the mother of a child with Williams syndrome. ”The Children’s Rare Disease Network is a magnet and a long-awaited home for these kids and their families. We don’t have to feel so alone. CRDN is on our side.” ”We know this is a winning model,” Boice says. ”We have seen this work effectively around such diseases as AIDS and breast cancer. Greater awareness leads to greater understanding. With greater understanding comes greater funding for research. And that eventually leads to new therapies, improved lives and hopefully cures. It is really that simple.” Already, CRDN has won a grant from the Life Technologies Foundation for a three-part PBS series focused on rare diseases. Plans are hopes to educate the general public ”that rare disease is not so rare,” she says. ”Everyone knows someone affected. With the total numbers affected being so large, this community deserves more attention that will drive more support and funding.” For more information about the Children’s Rare Disease Network, see www.crdnetwork.org. • Nancy Henderson is an award-winning writer whose articles have appeared in Smithsonian, The New York Times, Parade, US Airways magazine and many other publications. She is the author of Able! How One Company’s Extraordinary Workforce Changed the Way We Look at Disability Today (BenBella Books). Nancy often writes about disability issues and people who are making a difference through their work. www.eparent.com/EP MAGAZINE • February 2010 11 http://www.crdnetwork.org http://www.DonateGames.org http://www.crdnetwork.org 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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