Reporting Back from MDA’s First-Ever Advocacy Captain Hill Day

On September 29 – 30, 2026, advocates returned to Washington D.C. for a Hill Day specifically geared to those in the MDA Advocacy Captain (MAC) program. From as far away as Alaska, MAC members from across the country traveled to the nation’s capital to urge lawmakers to support policies that will empower the neuromuscular community, including protecting Medicaid from future cuts and putting a permanent stop to harmful changes that could negatively affect medical research.

What is the MDA Advocacy Captain (MAC) Program

The newly created MAC program is made up of advocates from across the country who are committed to participating in advanced advocacy opportunities such as developing relationships with lawmakers and staff, setting meetings at federal lawmakers’ district offices, attending town halls or other public events, and much more. MAC members are in key states and Congressional districts all over the country.

MAC Hill Day – By the numbers

Even though MAC Hill Day was more intimate than the traditional, larger MDA on the Hill, the impact is just as important.

Together, we made a difference on Capitol Hill with:

• Nearly 50 total participants
• 16 states represented
• Over 50 total lawmaker meetings

Two important asks for Congress

Congress has a lot of competing priorities and, especially during an Election Year, it can be hard to “break the noise.” However, MAC members didn’t let that stop them and urged Congress to act on two vital issues.

• Protect Medicaid from future cuts in any upcoming legislation and address the current losses in Medicaid coverage and services happening across the country.
• Permanently stop a rule by the Office of Management and Budget that would negatively impact medical research and other federal grants.

“Both protecting the Medicaid program from further budget cuts and reversing these harms as soon as possible, as well as ensuring the harmful OMB rule is not implemented, are vital and timely issues for MAC members to be talking about with their lawmakers,” says Paul Melmeyer, Executive Vice President of Public Policy & Advocacy at MDA. “We hope Congress acts on these issues after the mid-term elections or shortly thereafter.”

There is no doubt lawmakers heard the voices of the MAC members loud and clear.

What is next?

We hope Congress will make progress on these issues when lawmakers return to Washington after the midterm elections. Both MAC members and the larger grassroots network will continue to advocate for these policies and not stop raising our voices.

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