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Bringing the Family’s Voice to Research: How Families Contribute to Research (Part Two)

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 This is the second of a two-part article about our experiences as parent members of the On-Track Study research team. In this article we reflect on how our engagement in the research process evolved over four years and about the benefits of including parents as members […]

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The Whole Story

PUZZLES & CAMO BY SHELLY HUHTANEN This is the story of autism that we need to hear, not just the young adult with autism that is a surgeon… We need to hear the whole story, no matter how uncomfortable it may be. A few weeks ago, a friend of mine asked me if I had seen the new show on television entitled The Good Doctor. I told them I hadn’t since I don’t watch too […]

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MDA Venture Philanthropy Grant To Support Development Of ALS Biomarkers

The Muscular Dystrophy Association is pleased to announce the award of an MDA Venture Philanthropy (MVP) grant totaling $233,200 to Scottsdale, Arizona-based Iron Horse Diagnostics to support development of a prognostic test for ALS. This prognostic Such a test could help improve and accelerate clinical trials and speed the development of life-saving drugs to people with ALS (amyotrophic lateral sclerosis). MVP is MDA’s drug development program, which is exclusively focused on funding the discovery and […]

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Improving Health Worldwide To The Most Underserved

People with intellectual disabilities face health care providers who don’t have the knowledge or willingness to treat them. Despite severe need and higher health risks, people with ID are often denied health services. BY KRISTIN HUGHES SROUR, MBA If you want to help straighten her bones, dig a hole in the ground, have your daughter stand in it and then pack it with soil. Do this every day for six hours. This was the advice […]

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What Can Twitter Reveal About People with ADHD

Quote: “Understanding the components that some people have or don’t have, the range of coping mechanisms that people use – that all leads to a better understanding of the condition.” What can Twitter reveal about people with attention-deficit/hyperactivity disorder, or ADHD? Quite a bit about what life is like for someone with the condition, according to findings published by University of Pennsylvania researchers Sharath Chandra Guntuku and Lyle Ungar in the Journal of Attention Disorders. […]

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8 New Epilepsy Genes Discoverered by Researchers

Quote: “A recent study by Michaud examining 200 children with epileptic encephalopathy – epilepsy combined with intellectual or overall developmental disability – and their parents could lead to the development of a more rational anti-epileptic treatment strategy.” Approximately 30 per cent of patients with epilepsy do not respond to anti-epileptic drugs. In these cases, all neurologists can do is attempt to find the right combination of medication through trial and error. A treatment that could […]

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Transitions: Moving from pediatric care to adult care can be tricky. Here are eight questions to ask your doctor to facilitate the process.

American Academy of Neurology Kritz, Fran Neurology Now . 13(5):10–11, October/November 2017. Many neurologic diseases, such as epilepsy, spinal muscular atrophy, muscular dystrophy, or Down syndrome, begin in childhood when patients are seen by pediatric neurologists. What happens when these patients age into adulthood? Do they stay  “with their pediatric specialist or switch to a neurologist who treats adults or both children and adults? The accepted wisdom is to transition to doctors who treat adults, […]

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An Ordinary Day: Kids With Rare Genetic Conditions

Life can present challenges that seem insurmountable. Children are not exempt from this, but often through their innocence and willpower we can find inspiration and hope. An Ordinary Day features unforgettable photographs set against intimate conversations, documenting the lives of 27 children living with rare genetic conditions. The book invites us to connect with kids like Ethan, a nonverbal seven-year-old who learns to sign to communicate his needs, five-year-old Madison who has taken her first […]

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Robots, Engagement and Autism Spectrum Disorder Intervention

BY GREG FIRN, ED.D Learners with intellectual disabilities often struggle with traditional educational tools, but robots are a game changer. Kids like robots because they’re “cool” and feel like big toys – nonjudgmental ones. With over 30 years of experience in education and a passion for helping every child meet their full potential  academically and socially, I have seen how effective intervention is for children with ASD, particularly if it happens early in the child’s […]

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National Down Syndrome Society Launches National Campaign Spotlighting Laws that Prevent Individuals with Down Syndrome from Seeking Careers

The National Down Syndrome Society (NDSS), a human rights organization for all individuals with Down syndrome, will soon bring together community leaders, self-advocates, parents and employers to launch their latest campaign – Law Syndrome. NDSS’ Law Syndrome campaign will help launch October as Down Syndrome Awareness Month and National Disability Employment Awareness Month. Law Syndrome directly addresses the challenges faced by people with Down syndrome who desire to fulfill career goals, get married and live […]