December 19, 2024 by Jori Houck
We have covered the importance of sharing your story in advocacy, but how do you back it up with concrete details, facts, and numbers to help make your messaging and advocacy the most compelling it... December 19, 2024 by Jori Houck
Federal policymakers are some of the most important allies to have when engaging in advocacy. One of the ways that we can drive change for those living with a neuromuscular disease is by engaging... December 19, 2024 by Jori Houck
The world is increasingly connected. The Internet has enabled advocates to connect with each other, whether just down the street or across the country. This means that advocacy can be conducted... December 19, 2024 by Jori Houck
As advocates for MDA, we share a common goal: to drive meaningful change for those living with neuromuscular diseases or affected by them as a caretaker, loved one, etc. To be the most effective... December 4, 2024 by Jori Houck
There’s nothing more powerful when people living with neuromuscular disease share their stories with lawmakers. And when that happens, lawmakers listen. Stories enable those decision makers to focus... November 25, 2024 by Jori Houck
For those of us advocating on behalf of the neuromuscular disease community, we must consider how to craft messages that provide essential information and resonate with different audiences. In this... November 11, 2024 by Jori Houck
In the world of advocacy, there is strength in numbers. Connecting with your fellow advocates is one of the best ways to harness this power. Along with fellow advocates, you can share experiences,... October 28, 2024 by Jori Houck
As we have been discussing in our recent blogs, advocacy is not a one-size-fits-all approach. There are different techniques, strategies, tactics, and methods of reaching out to decision-makers to... October 14, 2024 by Jori Houck
We know from the first blog in this series that grassroots advocacy is a powerful tool for enacting change from the ground up. However, it is important to consider your values when you engage in... August 9, 2024 by Mark Fisher
The Muscular Dystrophy Association supports the Patient Access Act, introduced last week by U.S. Representatives Brett Guthrie (R-KY) and Nanette Barragán (D-NY). The Patient Access Act would... June 17, 2024 by Jori Houck
The last time you read an article with a title like this, it may have been a college or high school syllabus. Essentially, that is what MDA will be providing through this toolkit – a guide that... February 7, 2024 by Jori Houck
Today, the House of Representatives voted 211-208 to pass HR 485, the Protecting Healthcare for All Patients Act. This bill would ban the use of quality-adjusted life years (QALYs) in coverage... January 30, 2024 by Jori Houck
In a significant milestone for the spinal muscular atrophy (SMA) community, newborns in all 50 U.S. states and Washington, DC are now eligible for routine screening for SMA beginning in January 2024,... October 3, 2023 by Jori Houck
Over the weekend, Congress passed a short-term extension of government funding to avoid a federal government shutdown. The continuing resolution (CR) used to fund the government also extends the... October 2, 2023 by Mark Fisher
For over a year and half now, MDA has been advocating for the inclusion of provisions that would make air travel more accessible for those with disabilities, and particularly those who use... August 31, 2023 by Paul Melmeyer
Statement from Muscular Dystrophy Association:MDA Condemns Continuing Insurance Coverage Denials of FDA-Approved Neuromuscular Disease TreatmentsAugust 31, 2023Health insurers continue to deny... August 10, 2023 by Paul Melmeyer
MDA’s Statement on the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children voting to move the Duchenne muscular dystrophy nomination to full evidence review:August 10th,... July 26, 2023 by Mark Fisher
After years of hard work and hundreds of MDA advocates making their voices heard, the Department of Transportation (DOT) finally released a regulation to mandate accessible lavatories on single-aisle... July 20, 2023 by Mark Fisher
Today, by a vote of 351-69, the US House passed legislation to reauthorize the Federal Aviation Act (FAA), which includes the most transformative air travel accessibility reforms since the 1980s!... June 22, 2023 by Michael Lewis
Big news in our effort to make air travel more accessible for people living with a disability. Last week, the House Transportation and Infrastructure Committee unanimously passed its version of... June 9, 2023 by Paul Melmeyer
Today, the Senate Commerce Committee and House Transportation and Infrastructure Committees each released their proposed FAA reauthorization bills. The Senate’s legislation, while still in draft... April 25, 2023 by Mark Fisher
Did you know that people can be denied vital drugs and therapies purely because they are living with a disability? It’s true. It’s outrageous. And MDA is working to stop this discriminatory practice... March 30, 2023 by Mark Fisher
Broken wheelchairs. Broken bones. Broken plans. For too many living with a disability, traveling by air is a nightmare and improving the system is long overdue. The good news is this year we have a... March 8, 2023 by Paul Melmeyer
Statement from Muscular Dystrophy Association:MDA Calls for Widespread Insurance Coverage of FDA-Approved Neuromuscular Disease TreatmentsMarch 8, 2023Today, the Muscular Dystrophy Association (MDA)... February 10, 2023 by Paul Melmeyer
MDA’s Statement on the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children voting against moving the Duchenne muscular dystrophy nomination to full evidence review:February... February 3, 2023 by Mark Fisher
It’s a new year with a new year Congress. But what hasn’t changed is MDA’s commitment to improving the lives of people living with neuromuscular diseases. We accomplished a lot last year, and MDA and... December 12, 2022 by Mark Fisher
It’s crunch time! With Congress set to go home for the holidays in a couple of weeks, time is running out to pass bills that are crucial for the neuromuscular community. With your help, we can still... October 26, 2022 by Mark Fisher
Open Enrollment. Insurance Marketplaces. Medicare deadlines. For many in the neuromuscular community, this is the time of year where key decisions are made about health insurance and coverage... August 29, 2022 by Mark Fisher
Mail-in ballots. Early voting. Drop-off boxes. Since the 2020 Election, many states have passed new laws that might change the way you’re used to voting. However, being able to make your voice heard... August 11, 2022 by Mark Fisher
From improving access to health insurance to making prescription drugs more affordable, we are celebrating a couple major victories in the recently passed Inflation Reduction Act (IRA). These new... July 29, 2022 by Mark Fisher
We’re back! After a 3-year hiatus, advocates are going back to Capitol Hill, but this time virtually. We’re excited to announce that the MDA Advocacy Institute: Virtual Summit & Hill Day will... July 28, 2022 by Mark Fisher
From strengthening the program at the Federal level, adding Duchenne muscular dystrophy, SMA, and Pompe disease to state screening panels, and preparing for the next generation of newborn screening,... July 5, 2022 by Mark Fisher
Limited access to crucial testing. Finding a genetic specialist. Confusion about costs. These are just a few of the hurdles the neuromuscular community face while trying to obtain an accurate... June 30, 2022 by Mark Fisher
Muscular Dystrophy Association Co-Sponsors Nomination of Duchenne Muscular Dystrophy to the Newborn Screening Recommended Uniform Screening PanelWashington, D.C., June 30, 2022 –The Muscular... June 7, 2022 by Mark Fisher
Last December, we celebrated a huge victory when the President signed the ACT for ALS. This groundbreaking legislation will speed up therapeutic development for all neuromuscular diseases, including... 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... February 24, 2022 by Michael Lewis
Did you know that according to a recent MDA survey, only 21% of adults living with neuromuscular disease are working part or full-time? Many individuals with disabilities have a desire to work but... 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 23, 2021 by Mark Fisher
Today, I AM ALS, The ALS Association and the Muscular Dystrophy Association released the following statement on President Biden signing Accelerating Access to Critical Therapies for ALS (ACT for ALS)... December 16, 2021 by Mark Fisher
Washington, D.C., December 16, 2021 –The Muscular Dystrophy Association released the following statement on tonight’s Senate passage of the ACT for ALS:This evening, the Senate passed the... 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...
Three Leading ALS Organizations Celebrate House Passage of ACT for ALS, Call for Swift Senate Action
December 8, 2021 by Mark Fisher
Today, I AM ALS, The ALS Association and the Muscular Dystrophy Association released the following statement on today’s passage of ACT for ALS in the House of Representatives:“I AM ALS, The ALS... November 19, 2021 by Mark Fisher
Build Back Better (BBB). Reconciliation. Budget Bill. All of these describe a very large piece of legislation the U.S. House just passed. But what is exactly in it and how will it benefit the... November 19, 2021 by Mark Fisher
Organizations Urge Senate to Quickly Pass Build Back Better Act — and Say Congress Should Begin Work Now to Make Reforms Permanent27 organizations representing millions of people with pre-existing... 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... July 13, 2021 by Mark Fisher
July 13, 2021 - Twenty patient advocacy organizations sent the following letter urging U.S. House Leadership, the Energy and Commerce Committee Chairman, and the Energy and Commerce Committee Ranking... 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...