Everything You Need to Know About MDA Hill Day 2024

Once again, MDA and its grassroots advocates came together in Washington D.C. and ensured that lawmakers heard their voices during MDA on the Hill. This multi-day event from September 8-10 brought together 95 advocates from 24 states across the country. The powerful, influential three-day event featured advocacy training, networking, meetings with members of Congress and staff, and much more..

We sat down with MDA’s Director of Advocacy Engagement, Mark Fisher, to recap this amazing event.

Steve Way gives Hill Day Kickoff Speech

What when and where was MDA on the Hill?

This year, MDA on the Hill took place from September 8 through September 10 in Washington, D.C. This multi-day event brought together 95 advocates from 24 states from across the country and featured advocacy training, networking, meetings with members of Congress and staff, and much more.

MDA on the Hill is an annual event that provides an opportunity for groups to meet with members of Congress with the goal of influencing policy decisions.  Can you tell us a little bit about the history of Hill Day?

Team Florida meets with Florida Representative John Rutherford

MDA has gone to Capitol Hill many times over the years, but the COVID-19 pandemic caused us to reset and rethink the event. In 2022, we had advocates successfully participate in a virtual Hill Day event. In 2023, we brought people back to Washington, D.C. for the first time since 2019 to meet in-person with their lawmakers about accessible air travel. The 2024 MDA on the Hill event has continued to build off our 2022 and 2023 events into a larger, more impactful experience of advocates.

Why is this event especially important to the MDA Advocacy team and the NMD community?

MDA on the Hill is MDA’s premier advocacy event of the year and it’s important for many reasons. First, for the NMD community to raise their voices and ensure their elected officials hear them is vitally important. It’s powerful to feel that those who represent you are truly listening, and MDA on the Hill provides that opportunity. In addition, the importance of the NMD gathering together in the same space is invaluable. Connecting with old friends and making new ones is usually the main highlight for participants.

How does the Advocacy Team participate in MDA on the Hill?

Team Nebraska meets with Nebraska Senator Deb Fischer

It’s all hands-on deck for MDA’s advocacy team during MDA on the Hill. The advocacy team coordinates the issues advocates will talk with lawmakers about, develops the necessary training to ensure participants are prepared, and attends meetings along with advocates. That’s in addition to all the logistical work that goes into this multi-day event. It’s all-encompassing work…but 100% worth it!

What issues have we addressed in the past? And how has our presence impacted current legislature?

We have lobbied on many issues in the past, including improving air travel, increasing access to newborn screening, increasing the number of genetic counselors available to the NMD community, improving and modernizing FDA policies and clinical trials, and much more. There is no doubt MDA advocates have made an impact. For example, in 2023, a few weeks after MDA on the Hill, which focused on improving air travel, both the U.S. House and Senate released strong bills that reflected many of the asks MDA advocates made during the event. That culminated with a passing of FAA Reauthorization in 2024, which had the most consequential air travel reforms in nearly 40 years. Our advocates make a big difference!

How many people attended MDA on the Hill this year to advocate for issues important to the NMD community? How many meetings did advocates attend, and how many lawmakers from how many states did they meet with?

We had an amazing MDA on the Hill event and here are the numbers to prove it.

• 95 participants participated in this three-day event.
• 24 states from across the country were represented.
• MDA advocates had 97 meetings with lawmakers and staff.

What key issues did the Advocacy Team focus on this year at MDA on the Hill? What were the specific asks around these issues that we collectively made with lawmakers? And why are these issues important to our community?

We asked lawmakers to support three key bills that are important to many people and families in the NMD community.

Team Massachusetts after a meeting with Rep. Trahan’s Office

1. SSI Savings Penalty Elimination Act: A bill to eliminate the savings penalty for SSI beneficiaries by raising outdated asset limits. We know that many who rely on SSI cannot take that promotion, get married, or save a little extra money because of outdated asset limits. This bill would help modernize the program.
2. Rare Pediatric Disease Priority Review Voucher Reauthorization: A vital program that incentivizes the development of treatments for rare pediatric diseases which will expire without Congressional action. The is program expires on September 30 of this year, so ensuring it gets reauthorized is crucial for the future of therapies for rare diseases.
3. Accelerating Kids Access to Care Act: A bill to streamline the process for children with complex medical needs to access care through Medicaid across state lines. Right now, there is a lot of red tape if a child on Medicaid needs to access care in another state, which can cause issues when trying to obtain medical care. This bill would make the process much easier.

We hope that these three bills will be passed by Congress by the end of the year.

What do you hope our advocacy efforts will accomplish this year?

Team Missouri meeting with Senator Eric Schmitt’s Office

The first goal is to gain more support for the three bills that we will be meeting with lawmakers about during the Hill meetings. In addition, we hope advocates will take the skills and connections they made while in Washington, D.C. back home with them and continue to advocate on issues affecting the neuromuscular disease community where they live. Finally, we hope participants will make lasting connections with fellow advocates because those are invaluable. In the end, we hope MDA on the Hill will energize people to become lifelong advocates.

What do you want others to know about getting involved in advocacy?

It’s simple. Your voice makes a difference. No matter how you participate in advocacy, whether it is sending an email to members of Congress or meeting with them in person, you voice matters. And one person can truly make a difference!

What is the MDA grassroots advocacy program, what other opportunities are there for grassroots advocates to get involved – how do people join MDA’s grassroots advocacy group?

From left to right – Back row: Mary Fiance, Evan Haynes-Knepper, Michael Haynes-Knepper, Jamie Shinneman, Joel Cartner – Front row: Steve Way, Amy Shinneman, Alicia Dobosz

MDA’s advocacy program is one of the organization’s ways to live up to our mission of empowering the people we serve by ensuring the right public policies are in place to truly help the neuromuscular community. We primarily focus on federal work in three categories: Access to care, Accelerating Therapeutic Development, and Empowerment and Independence.

Our grassroots advocates are crucial to the program. Together they contact decisionmakers on key issues, have  in-person or virtual meetings with lawmakers, testify at government agency events, write blog pieces, and much more. Our grassroots advocates ensure their voice and the voices of all the NMD community are heard. You can join is at mda.org/advocacy!