NCD applauds legislative, policy initiatives on ADA anniversary

WASHINGTON, July 27, 2018 /PRNewswire/ — The National Council on Disability (NCD) – a nonpartisan, independent federal agency – applauds announcements of two groundbreaking measures on the 28th anniversary of the Americans with Disabilities Act being signed. Bipartisan legislation was introduced by U.S. Reps. Seth Moulton of Massachusetts and Gregg Harper of Mississippi called the Healthcare Extension and Accessibility for Developmentally disabled and Underserved Population Act, or the HEADs UP Act, of 2018. It would designate people with Intellectual and Developmental Disabilities (I/DD) as a medically underserved […]

Amber Tatro, Whose Suit Gave Rights to Disabled Students, Dies at 42

By Sam Roberts Aug. 14, 2018   In 1979, just a few months before Amber Tatro turned 4, her family notified the Irving, Tex., school district that she would be ready for classes that fall. Born with spina bifida, a congenital defect that causes partial paralysis and impaired speech, she was unable to urinate on her own. She required catheterization every few hours to prevent kidney damage, a process that took only several minutes but […]

Healthcare Extension and Accessibility for Developmentally disabled and Underserved Population Act of 2018

The Healthcare Extension and Accessibility for Developmentally disabled and Under served Population Act of 2018, or HEADs UP Act, would designate people with Intellectual and Developmental Disabilities (I/DD) as a Medically Underserved Population (MUP) under the Health Services and Resources Administration (HRSA). People with I/DD experience poorer health, shortened life expectancies, and lack access to even the most basic forms of care when compared to the non-disabled population. A designation as a MUP would help […]

NORD’s RareEDU™ Launches Video Addressing a Topic Vital to Today’s Rare Disease Community, Gene Therapy: Your Questions Answered

Washington, D.C., July 19, 2018—The National Organization for Rare Disorders (NORD) today launched Gene Therapy: Your Questions Answered, a new video from its RareEDU educational program addressing some of the most commonly asked questions from patients and caregivers on the topic.  It is available for viewing here. “For 35 years, providing information and education to the rare disease community has been an integral part of our mission at NORD. Through RareEDU, we provide educational resources for patients and […]

Judge rules, Massachusetts school can continue using electric shocks on special needs students

Practice has been condemned by disability rights groups and the ACLU BY EMILY SHUGERMAN   A Massachusetts school will be allowed to continue administering electric shocks to its special needs students after a judge ruled the procedure conformed to the “accepted standard of care”. The Judge Rotenberg Centre (JRC) in Canton, Massachusetts, is the only school in the US to use the technique, which has been condemned by disability rights organisations, the American Civil Liberties […]

This woman is an exceptionally effective Capitol Hill lobbyist. She also has Down syndrome.

by Allison Klein There are thousands of lobbyists in Washington, legions of well-connected pros who are hired by special interest groups to vigorously advocate for issues. Perhaps nobody in those ranks is more committed to their cause than Kayla McKeon, the first registered Capitol Hill lobbyist with Down syndrome. “I make personal connections, tell personal stories,” said McKeon, 30, who works for the District-based National Down Syndrome Society. “It’s hard for them to say no.” […]

Anti-Seizure Medications During Pregnancy

More than a million women with epilepsy are of childbearing age in the United States. Each year, 20,000 babies are born to women living with epilepsy. The fetus, or unborn baby, is exposed to anti-seizure medications in one of every 50 pregnancies. What is the risk for seizures during pregnancy? The best care for women with epilepsy during pregnancy aims at achieving complete seizure control while decreasing the fetus’ exposure to the potential harmful effects […]

Camp Check List For Parents Of Kids With Medical Conditions

PEDIATRICIAN DR. DYAN HES HAS ADVICE FOR PREPARING TO SEND CHILDREN WITH CHRONIC CONDITIONS TO CAMP NEW YORK, NY – Many kids will head to camp for a summer of fun-filled activities. As parents check off the list of things kids will need to bring, it is important to have a separate checklist if your child suffers from a chronic condition such as asthma, diabetes, or allergies. Dr. Dyan Hes, Medical Director of Gramercy Pediatrics and […]

First Marijuana-Based Drug Approved to Treat LGS, Dravet Syndrome

The Food and Drug Administration (FDA) has approved Epidiolex (cannabidiol oral solution; GW Pharmaceuticals) for the treatment of seizures associated with Lennox-Gastaut syndrome and Dravet syndrome in patients ≥2 years of age. This marks the first approved drug that contains an active ingredient derived from marijuana as well as the first treatment approved for patients with Dravet syndrome. The approval of Epidiolex was based on data from 3 randomized, double-blind, placebo-controlled trials (N=516) involving patients […]

Space Center Houston Now a Certified Autism Center

HOUSTON, June 25, 2018 – Space Center Houston strives to ensure that the nonprofit is a an accessible and accepting destination. That essential work has been recognized by the International Board of Credentialing and Continuing Education Standards. The science and space exploration learning center is the first of its kind to be designated as a Certified Autism Center by the IBCCES. “Science, technology, engineering and mathematics education is for everyone,” said William T. Harris, the […]