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April 20, 2022 by Paul Melmeyer
Big news for those living with LGMD! Instead of the generic “Other Muscular Dystrophy” diagnostic code, those living with LGMD are one step closer to having diagnostic codes that match their...
April 12, 2022 by Mark Fisher
Navigating long wait lists. Financial barriers. Lack of personal care attendants. Those are just a few of the many issues people who have a neuromuscular disease face when trying to access home-based...
March 11, 2022 by Mark Fisher
Big news out of Washington, D.C. Congress finally passed its compromise bill to fund the government through September. Thanks to your advocacy work, MDA advocates have a lot to be happy about in this...
January 28, 2022 by Mark Fisher
It’s a new year and MDA’s commitment to transforming the lives of people living with neuromuscular disease through advocacy remains a top priority. We accomplished a lot last year, but we still have...
December 24, 2021 by Mark Fisher
2021 was another challenging year for many, but once again, MDA’s grassroots advocates were relentless in ensuring lawmakers heard their voices. Throughout the year, our volunteers emailed, called,...
December 15, 2021 by Mark Fisher
Access to healthcare. Paid leave program. Drug pricing and access. These are just three of the many pieces included in Build Back Better, an enormous piece of legislation the U.S. House passed in...
November 17, 2021 by Mark Fisher
Muscular Dystrophy Association urges swift passage of the ACT for ALS by the Energy and Commerce CommitteeToday, the Muscular Dystrophy Association released the following statement on today’s Energy...
November 4, 2021 by Mark Fisher
Muscular Dystrophy Association urges swift passage of the ACT for ALS by the Energy and Commerce Health Subcommittee Today, the Muscular Dystrophy Association released the following statement on...
November 1, 2021 by Mark Fisher
Three Leading ALS Advocacy Organizations Call on Congress to quickly pass Accelerating Access to Critical Therapies (ACT) for ALS ActI AM ALS, The ALS Association and the Muscular Dystrophy...
October 22, 2021 by Mark Fisher
It's been said multiple times: People living with neuromuscular disease have waited too long for promising drugs and therapies. But what is needed to finally achieve meaningful change? Find out by...
October 5, 2021 by Mark Fisher
It's hard to believe, but there are only three months left in 2021! And before we turn the page on this year, there are a few big pieces of legislation we are working hard to pass.From newborn...
August 24, 2021 by Mark Fisher
Did you know you don’t need to travel to Washington, D.C. to make a difference and have an impact on your federal lawmakers? There are many opportunities in your community to connect with your...
August 12, 2021 by Mark Fisher
It’s August, which means members of Congress are heading home for their annual summer recess. This is a great time to not only meet your lawmakers, but also urge them to cosponsor legislation...
July 29, 2021 by Mark Fisher
Did you know that July 26th was Disability Independence Day? It’s when we celebrated the 31st anniversary of the Americans with Disabilities Act, but also recognized the work that’s still left to be...
June 24, 2021 by Mark Fisher
BIG NEWS. The U.S. House just passed the Newborn Screening Saves Lives Reauthorization Act (HR 482)! This momentous achievement was made possible because of the actions of advocates like you...
June 17, 2021 by Mark Fisher
Patient Groups Praise Supreme Court Ruling Upholding Health Care Law, Preserving Critical Patient Protections Justices Throws Out Case Citing Lack of Standing by PlaintiffsWashington, D.C...
June 2, 2021 by Mark Fisher
Big news and we mean BIG. This week, Texas added spinal muscular atrophy (SMA) to its newborn screening program. That means the Lone Star State joins 32 other states who screen all babies for...
May 25, 2021 by Mark Fisher
ALS Organizations Double Down on Their Support for Reintroduced Legislation That Will Accelerate Research and Encourage Access to Critical Investigational Therapies for Those Living with ALS...
May 7, 2021 by Mark Fisher
It’s time. After years of connecting you to your lawmakers in order to raise your voice on our website, it was time for a refresh. We’ve worked hard over the past few months, and we're proud to...
April 22, 2021 by Mark Fisher
Although you might not be traveling by air due to the COVID-19 pandemic, hopefully all of us can hit the skies again soon. When that happens, MDA wants to make sure air travel will be as accessible...
February 25, 2021 by Mark Fisher
In recognition of Rare Disease Day, watch a special edition of the Advocacy Institute about policies that affect those living with rare diseases featuring MDA experts and Rachel Sher, Vice President...
February 2, 2021 by Mark Fisher
2021 is a new year: The country has a new administration, and a new Congress has been sworn in. What isn’t new is MDA’s commitment to working tirelessly in Washington, DC, to transform the lives of...