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Bringing the Family’s Voice to Research: Parents as Members of the Research Team (Part One)

  By: Lisa Diller, Seattle, Washington; Paula Drew, Edmond, Oklahoma; Marquitha Gilbert, Philadelphia, Pennsylvania; Nancy Ford, Atlanta, Georgia; Tina Hjorngaard, Toronto, Ontario, Canada; Kim Rayfield, Philadelphia, Pennsylvania; Barbara Taylor, Pittsburgh, Pennsylvania “Nothing About Us Without Us!” is a slogan used to communicate the idea that no policy should be decided by any representative without the full and direct participation of members of the group(s) affected by that policy.” It has been embraced by the disability community for […]

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Curing or Living with a Disability: Your Choice Would Be… (Commentaries)

AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY BY H. BARRY WALDMAN DDS, MPH, PHD, STEVEN P. PERLMAN DDS, MSCD, DHL (HON) AND MATTHEW COOKE, DDS, MD, MPH “Everyone’s brain is different. Brains are like snow flakes – no two are alike.” 1 “There is tension within the disability community between curing the disability and living with the disability” 2 “…with Down syndrome, the general emphasis is to celebrate the strengths of the syndrome, whereas with […]

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Enhancing Lives Of People With Down Syndrome

BY SARA HART WEIR, MS The National Down Syndrome Society (NDSS) is the leading human rights organization for individuals with Down syndrome. NDSS envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations and become valued members of welcoming communities. Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down […]

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Developmental Coordination Disorder

The “hidden” facet of autism spectrum disorder BY DR. SHELLEY MARGOW, OTD, OTR/L Clumsiness is an inevitable part of growing up, and all children bump into objects, drop things and sometimes fall in their journey to adolescence and adulthood. But there are some kids whose struggle to fully participate and learn new skills in daily activities at home, in the playground, and in the classroom is ceaseless. The cause is Developmental Coordination Disorder (DCD), a […]

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Pinpointing The Cause Of Tourette Syndrome

The Tourette Association of America (TAA) and neurogeneticists at Massachusetts General Hospital and UCLA’s Semel Institute for Neuroscience and Human Behavior, brings your attention to the recent publication in the scientific journal Neuron of important news related to the origin and cause of Tourette Syndrome, a neurological disorder that affects 1 in 100 school-aged children in the U.S, and for which there is currently no known cure. Pinpointing the cause of Tourette syndrome has been […]

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Transitioning To Adult Neurologic Care: Where Do We Go From Here?

BY DAVID ERVIN, JOAN EARLE HAHN AND MIYA ASATO, MD For many individuals with IDD, epilepsy often begins in childhood and has a significant impact on children and families. As children with epilepsy and IDD reach adulthood, while principles have been developed by consensus to guide the child neurologist, no specialized guidelines have been created for the adult neurologist that speak to the unique transition of care needs necessary for successful transition from pediatric to […]

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The Organization for Autism Research Competes for $50,000 Prize to Improve Lives of Young Adults with Autism

Vote for autism research nonprofit to reach the final pitch competition in Boston, MA Selected from 180 applicants, OAR is a nonprofit organization that promotes research to help families, educators, caregivers, and individuals with autism find much-needed answers to their immediate and urgent questions. Winning The Encore Prize will allow OAR to broaden Hire Autism, a program that connects people across the autism-spectrum with autism-friendly jobs, employers, and support, by adding Hire Autism Advocates. Over […]

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In Someone Else’s Shoes

PUZZLES & CAMO BY SHELLY HUHTANEN She knew these parents care for their children each and every day, knowing the difficulties they face. These parents may struggle each day to do something as simple as transporting them to school. I’ve always wondered if there would be more empathy in the world for people with disabilities, or for families who are raising children with disabilities, if those not affected could live in our shoes for a […]

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Playing The Rare Disease Card

BY LUKE ROSEN Parenting a kid with special needs requires a lot of writing. It seems like I’m constantly writing, which is ok  because… well, I’m a writer. Sitting at my desk typing a blog post is far less stress-inducing than the painful daily scribble that comes along with a rare genetic disorder. Early Intervention requests; reminders that doses changed because of a seizure yesterday; letters to the mayor about the ramp our building is […]

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Autism Science Foundation Announces 2017 Research Accelerator Grant Recipients

The Autism Science Foundation, a not-for-profit organization dedicated to advancing innovative autism research, recently announced the recipients of its 2017 Research Accelerator Grants. These grants are designed to expand the scope, speed the progress, increase the efficiency, and improve final product dissemination of active autism research grants. This year’s award recipients are Antoinette Sabatino DiCriscio, PhD., of the Geisinger-Bucknell Autism & Developmental Medicine Institute at Bucknell University, and John Strang, PsyD, of the Children’s National […]