Movement Matters for All Girls

Ten-year-old Sadie from Birmingham, Alabama is your average fourth grader. She likes wearing pink, spending time with her friends and playing sports. Sadie also happens to have cerebral palsy and epilepsy. Unfortunately, for many girls like Sadie, the options to participate in inclusive after-school physical activity and sports programs are often limited. Girls in the United States are far less likely than boys to meet the recommended amount of daily physical activity, but the disparity […]

Elizabeth Hamblet’s book, From High School to College: Steps to Success for Students with Disabilities

Elizabeth Hamblet has written the definitive book on the transition from high school to college – not only for students with learning differences, but for students in general. College is a different world from high school. The laws, expectations, and culture around disability services and accommodations are very different. The Council for Exceptional Children (CEC), www.cec.sped.org, is pleased to present Elizabeth Hamblet’s book, From High School to College: Steps to Success for Students with Disabilities. […]

We Are the Original Lifehackers

By Liz Jackson Ms. Jackson is a disability design advocate. It was 1988 when Betsey Farber found herself hacking through a dried-up nest of wild thyme in the backyard of a rental home in Provence. The scene was aromatic and picturesque, except for the pair of children’s scissors she’d stuffed her grown-up knuckles through. She couldn’t find anything better for the job. Who is going to leave their good kitchen tools in a rental? She […]

As Long As It’s Healthy.

by Amanda Buck I stared at the pregnancy test for a long time. I could hardly believe what I saw. In fact, I didn’t believe it, and took two more tests just to be sure. They all read “pregnant.” I’d been longing for a second child, agonizing over it for months. But we struggled with the decision, wondering if it was even right for us to try. For my husband and I, it wasn’t as […]

New Brain Development Disorder Identified

Summary: Researchers have identified a new neurodevelopmental disorder. The study reveals the inherited disorder can produce learning difficulties and increase seizure risks. The researchers have implicated a recessive mutation in CAMK2A in this new disorder. Source: eLife. Researchers have identified a new inherited neurodevelopmental disease that causes slow growth, seizures and learning difficulties in humans. Writing in the journal eLife, the team reveals that this disease is caused by a recessive mutation in CAMK2A – […]

Toddlers with Cerebral Palsy, Language Delays Could Benefit from Earlier Intervention, Study Finds

BY Ana Pena The ability of young children with cerebral palsy to understand language can accurately predict their language skills and difficulties later in life, according to a recent study. The study also concluded that children with cerebral palsy who are unable to speak should receive early intervention to help them overcome speech difficulties and to avoid developmental delays as they grow. The study,“Longitudinal growth of receptive language in children with cerebral palsy between 18 months […]

The purple band and the green chain #autism

by Jeannette Cripps It’s been a bit of a busy week for D, two hospital trips for me have impacted on the after school routines for her and the activities at school really step up a gear after the May half term, what with Proms week, Sports Day and end of term activities rapidly looming. In addition to the above, D has sporting opportunities coming up, these are great for team work and, in particular […]

FDA Approves BioMarin’s Enzyme Therapy for PKU

The U.S. Food and Drug Administration approved BioMarin Pharmaceutical’s Palynziq for adult patients with phenylketonuria or PKU, a rare genetic disease that results in the inability to breakdown proteins in foods and can lead to toxic accumulations that can affect the brain. PKU is marked by an inability to break down Phe, an amino acid that is found in all forms of protein. Left untreated, high levels of Phe become toxic to the brain and […]

Caregiver Initiative For Individuals With Down Syndrome

NDSS has partnered with the Alzheimer’s Association and National Task Group on Intellectual Disabilities and Dementia Practices to author a guidebook specifically for those caring for an individual with Down syndrome diagnosed with Alzheimer’s disease. BY SARA HART WEIR For members of the Down syndrome and disability communities, caregivers play an important role in helping members of the community lead a healthy, productive and happy lives. It is not uncommon for caregivers to put the […]

The Blessing and The Burden

by Barbara Swoyer Several months ago, my son turned 22.  I felt grateful, lucky and blessed.  I also felt apprehensive and overwhelmed.  Like many other parents of children with special needs, it was a day that I dreaded, the day when my child would lose the entitlement of school and related services. Reaching this milestone meant that he was continuing to beat the odds against a progressive disease and the prognosis of a limited life […]