Reflecting on 2025’s Advocacy Accomplishments

The last 12 months have been full of twists and turns in Washington D.C., but through all the unexpected events, MDA’s advocates remained steadfast and ensured that their voices were heard by lawmakers.

As we prepare to enter 2026, we reflect on the remarkable work of MDA’s advocacy community this year.

The fight to protect Medicaid

In the spring and summer, MDA’s advocates were out in full force as threats to the Medicaid program loomed large. From catastrophic funding changes to overly burdensome red tape, the benefits of this vital program were in real jeopardy. However, MDA’s advocates ensured their voices were heard in a variety of ways, including:

• Meeting with lawmakers, both in Washington D.C. and in-district.
• Sending over 13,000 letters to lawmakers.
• Writing numerous op-eds and letters-to-the-editor in local newspapers.

Although Congress eventually passed a bill with major cuts to program, we’re proud of all the efforts of MDA advocates. Our work is far from over and we will continue to fight for the important benefits of this vital program.

MDA on the Hill 2025

On November 2-4, 2025, despite a historic government shutdown, MDA returned to Washington, D.C. for MDA on the Hill. Grassroots advocates from across the country traveled to the nation’s capital to urge lawmakers to support policies that will empower the neuromuscular community. Key areas of legislation that advocates pushed for included protecting access to health care, supporting medical research funding, and easing the burden of caregivers.

Here are the highlights of those impactful days:

• 125 total participants.
• 26 states represented.
• 106 meetings on Capitol Hill with lawmakers from both political parties, including many who serve on key committees or in leadership positions.

The effort to pass these priorities doesn’t end with the conclusion of MDA on the Hill. MDA advocates will continue to advocate for these policies and will not stop raising their voices.

Duchenne muscular dystrophy and newborn screening

This year marked a historic milestone for the Duchenne muscular dystrophy (DMD) community as the U.S. Department of Health and Human Services (HHS) officially added DMD to the Recommended Uniform Screening Panel (RUSP), the national list of conditions recommended for newborn screening across all states. This is a major step toward earlier diagnosis, and faster access to care and treatments for children living with DMD and their families. Thank you to every advocate who raised their voice and made this achievement happen.

More notable 2025 highlights

Finally, MDA continued its work to empower the neuromuscular community by advocating on a variety of key issues pertinent to those living with neuromuscular disease. Notable highlights include:

• Securing an ICD-10 code for LGMD2i, which had been a goal of that community for many years.
• Continuing to advocate for accessible air travel, including meeting with the Department of Transportation about implementation of the 2024 Wheelchair User rule.
• Building support for caregivers through gaining cosponsors for the Alleviating Barriers for Caregivers Act, which would review and simplify processes, procedures, forms, communications to streamline benefits navigation for family caregivers.
• Engaging MDA advocates in education policy, such as efforts to fully fund the Individuals with Disabilities Education Act.

Celebrating achievements and looking towards the future

2025 was an unprecedented year, but it also led to unprecedented opportunities for MDA advocates. We are so grateful to everyone who raised their voices and looking forward to a successful 2026.