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 […]

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 […]

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 […]

Renovating Our Home and Our Lives for Cerebral Palsy

by Jamie Sumner To renovate a home is to renovate a life. Until we began to carve out our home to make it accessible to our son with cerebral palsy, I did not know I could plan his path to freedom or how I would feel once he took it. The fact is, Charlie has outgrown this life we have built. The cerebral palsy that felt first like an anchor holding him back, now seems simply […]

As You Were Saying…Help dentists aid all patients

by James T. Brett  Recently, I met a young man with Down syndrome who is in a public school just outside Boston. He spends most of his days in regular classroom settings and receives some extra help through an adult classroom aide. His junior high school experience was a reminder of how much better things are for those with intellectual and developmental disabilities, specifically more educational opportunities and better access to jobs, all leading to […]

Study Finds Facial Analysis Software Able to Identify Patients with Williams-Beuren Syndrome

A new study has shown that researchers have successfully used facial analysis technology and clinical information to successfully identify patients with Williams-Beuren syndrome, a rare condition that causes cardiovascular problems and intellectual disability. Though Williams-Beuren syndrome is a genetic condition, most case are not inherited. It affects about 1 in 7,500 to 10,000 people. People with the condition have distinctive facial features including puffiness around the eyes, a short nose with a broad tip, full […]

Understanding Your Child’s Medications

By Caitlin Hoff As a parent or caretaker of a child with special needs, it can sometimes be overwhelming to speak with doctors or healthcare professionals. In the beginning, the medical jargon can seem like a foreign language preventing you from fully understanding the situation your child is in. It can be incredibly overwhelming when you simply want to know that your child is safe and in good hands. Over time, however, this dialogue will […]