We believe in the power of community and the importance of building relationships with families going through similar experiences. If you are an individual living with a neuromuscular disease, we invite you and your loved ones to attend our MDA Engage Newborn Screening Webinar. It will broadcast live online on Friday, Aug. 30, from 11 . . .
There are still spots available for MDA’s Public Policy and Advocacy Conference, taking place in Washington, DC, from Oct. 15-17 at the Grand Hyatt Washington. If you have been thinking about attending, now is the time to sign up before all the spots are filled! Click here to register. The MDA Public Policy and Advocacy . . .
Thanks in large part to the work of MDA advocates across the country, the US House unanimously moved yesterday to pass the Newborn Screening Saves Lives Reauthorization Act (HR 2507). Once enacted, this law will reauthorize the national newborn screening program for five years and make additional investment in order to modernize and make improvements . . .
Last week, the US House Committee on Energy and Commerce’s Subcommittee on Health considered the Newborn Screening Saves Lives Reauthorization Act (HR 2507), a bill that would reauthorize the national newborn screening program for five years. We are happy to report that the subcommittee unanimously agreed to send the bill to the full committee for . . .
On May 2, Reps. Lucille Roybal-Allard (CA-40), Mike Simpson (ID-02), Katherine Clark (MA-05), and Jaime Herrera-Beutler (WA-03) introduced the Newborn Screening Saves Lives Reauthorization Act of 2019, a key piece of legislation that fights to eliminate preventable newborn deaths and stave off the onset of symptoms associated with severe disabilities, including neuromuscular conditions. Read MDA’s . . .
Amyotrophic lateral sclerosis (ALS) is a neuromuscular degenerative disease that causes rapid muscular atrophy. It progresses quickly, and patients need access to all available support as soon as possible. Currently, all ALS patients must wait five months before they can access Social Security Disability Insurance (SSDI) benefits. Because of the fast-moving nature of this disease, . . .
Last week, Sen. Tammy Baldwin of Wisconsin introduced the Air Carrier Access Amendments Act (S. 669). MDA commends Sen. Baldwin for championing this legislation that sets forth important protections for travelers with disabilities. Even though the Air Carrier Access Act, which prohibits discrimination based on disability, was passed more than 30 years ago, individuals with . . .
In 1952 in South Boston, Charles Crowley was desperate for help. His two sons were living with Duchenne muscular dystrophy (DMD) and needed care. The family needed resources. Charles called a good friend, George Graney. George did what good friends do for friends who need help: He called on his friends, too. Specifically, George asked . . .
Early identification and treatment for neuromuscular disorders are essential to optimize health outcomes. Newborn screening, which identifies health issues via a blood test taken soon after birth, is essential to ensure that infants born with serious but treatable disorders have the best possible chance at receiving the care and support services they need as early . . .
We were saddened to end 2018 with the passing of one of the true champions of neuromuscular disease research, Dr. Stephen Katz, the long-time director of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). Dr. Katz led efforts throughout the National Institutes of Health (NIH) to implement the Muscular Dystrophy Community Assistance . . .