Congress is Considering a Law to Strengthen Newborn Screening: Help MDA Promote its Passage

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 . . .

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Support ALS Patients: Tell Congress to Pass the ALS Disability Insurance Act Today

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, . . .

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Wisconsin Sen. Tammy Baldwin Introduces Air Carrier Access Amendments Act

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 . . .

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In Their Shoes: 65 Years of IAFF’s Fight for MDA

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 . . .

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Newborn Screening for DMD and BMD: MDA Needs Your Help

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 . . .

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In Memoriam: Dr. Stephen Katz

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 . . .

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Three Major Patient Advocacy Groups Focused on CMT Research to Collaborate on FDA “Voice of the Patient Report” and Patient-Focused Meeting

In honor of Charcot-Marie-Tooth (CMT) Awareness Month, the Muscular Dystrophy Association joins the Charcot-Marie-Tooth Association (CMTA) and the Hereditary Neuropathy Foundation (HNF) to host an externally led patient-focused drug development (PFDD) meeting for CMT. The PFDD meeting is being held on Friday, Sept. 28 at the College Park Marriott Hotel and Conference Center in Hyattsville, . . .

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SMA Added to National List of Disorders to Screen for at Birth

After significant collaborative work among many stakeholders in the spinal muscular atrophy (SMA) community, we are pleased to share that the Secretary of Health and Human Services (HHS), Dr. Alex Azar, has accepted the recommendation to add SMA to the Recommended Uniform Screening Panel (RUSP) for newborns. This is a landmark decision for the SMA . . .

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