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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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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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New Jersey first state to enact ABLE in 2016

Trenton, NJ−Governor Chris Christie has signed ABLE legislation that will allow families the opportunity to set up tax-free 529A savings accounts for disability-related expenses. The bill received unanimous support in votes in both chambers. The legislation was sponsored by Senate President Stephen, Senator Dawn Addiego and Assemblymembers Pamela Lampitt, Louis Greenwald, Valerie Vainieri Huttle, Daniel Benson and Vincent Mazzeo. The New Jersey ABLE legislation follows upon enactment by the federal government of the Stephen Beck, Jr., […]

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Around The World In A Wheelchair

by Lynda Edwards, Chattanooga Times Free Press/TNS | January 19, 2016 Cory Lee Woodard’s muscular dystrophy put him in a wheelchair at age 4, but it hasn’t kept him from swimming in Iceland’s Blue Lagoon or enjoying Malibu beaches. Now, at age 25, his highly successful travel blog, Curb Free with Cory Lee, has sent him around the world a few times and won him more than 12,000 Twitter followers, 4,500 Facebook fans and over […]

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Nondiscrimination on the Basis of Disability in Air Travel; Consideration of Negotiated Rulemaking Process

Summary The Department of Transportation (“Department” or “DOT”) announces that it is exploring the feasibility of conducting a negotiated rulemaking (Reg Neg) concerning accommodations for air travelers with disabilities addressing inflight entertainment, supplemental medical oxygen, service animals, accessible lavatories on single-aisle aircraft, seating accommodations, and carrier reporting of disability service requests. The Department has hired a convener to speak with interested parties about the feasibility of conducting this Reg Neg. The Department anticipates that the […]