Two years ago, I remember looking through the photos from the MDA Public Policy and Advocacy conference, excited to see so many in the neuromuscular disease community on Capitol Hill advocating for issues important to our community. I felt a sense of pride at what they were doing, but also, selfishly, a little bit of . . .
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! The MDA Public Policy and Advocacy Conference is an intimate . . .
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 . . .
Twelve non-partisan patient and provider groups representing millions of Americans issued the following statement today on the “skinny repeal” legislation the Senate will consider this week.
Health Care Reform Must Be a Bipartisan Effort, MDA and 14 other nonpartisan groups warn
Fifteen nonpartisan patient and provider groups representing millions of Americans issued the following statement on July 17 on the Senate’s proposal to repeal the Affordable Care Act (ACA)
This week, MDA joined with nine other patient advocacy organizations – including American Cancer Society Cancer Action Network, Cystic Fibrosis Foundation, March of Dimes and National Organization for Rare Disorders – to respond to the Senate’s newly-released draft of the Better Care Reconciliation Act (BCRA).
