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 […]
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 […]
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 […]
Michael Turcich, Managing Director, Western Principal Partners, LLC owner of eParent.com, the comprehensive special needs resource online media company will be honored with the World Congress on Disabilities 2014 Man of the Year Award. The award presentation will take place October 10th. Mr. Turcich was selected in recognition of the outstanding information, support, and resources he provides to parents of children with disabilities and the public awareness he raises through eParent.com “Mike is the perfect […]
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 […]
