A Government Shutdown Couldn’t Stop Advocates During 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, including protecting access to health care, supporting medical research funding, and easing the burden of caregivers.

MDA Hill Day 2025 (Team Massachusetts)

Here are the highlights of those impactful days.

By the numbers

Even with the government shutdown, MDA advocates came to D.C. in full force with record setting numbers. Their efforts made a difference, and here are the numbers to prove it:

• 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.

Three vital asks for Congress

The number of reforms and policies that Congress can pass to truly empower the neuromuscular community is endless. However, in order to make the most impact with a unified message, those attending MDA on the Hill came with a consistent message with three vital asks of their elected officials.

MDA Hill Day 2025 (Team Iowa)

• Protect National Institutes of Health (NIH) research funding, which has historically driven the discovery of life-changing therapies and cures.
• Cosponsor the ABC Act (Alleviating Barriers for Caregivers), which aims to simplify administrative processes for family caregivers.
• Reauthorize Enhanced ACA Premium Tax Credits, ensuring affordable healthcare coverage for people, including those with chronic and progressive conditions such as neuromuscular disease.

There’s no doubt Congressional offices heard MDA’s message loud and clear, and we are hopeful lawmakers will make progress on all three of these vital issues.

The Power of advocates’ stories

Relying on statistics or talking points around legislation is important, but MDA’s advocates took their legislative meetings to the next level by sharing their own personal, powerful experiences with their lawmakers. These personal stories “cut through the noise” and left a memorable impression on the Congressional offices that will last long after MDA on the Hill ended. Some experiences included:

• The effect of the Administration’s actions around NIH, including funding cuts and lab closures, and how Congress has an opportunity to reverse these actions and fully invest in this life-changing research.
• The administrative burdens caregivers face and how legislation such as the ABC Act could remove some of these hurdles.
• Sharing how much one’s own premiums would increase if the Enhanced ACA premium tax credits are not reauthorized and how that would affect families.

These stories powerfully demonstrated why Congress needs to act on these three issues in order to support the MDA Community.

MDA Hill Day 2025

What’s next?

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.

But we need more people to join us! Sign-up to be an advocate at mda.org/advocacy.