Our 2026 Advocacy Agenda

After a year of twists and turns in 2025, MDA and its advocates are even more motivated to raise their voices and create change for the neuromuscular community. Check out the roadmap for the next 12 months and learn how you can make an impact in 2026.

Celebrating early victories on previous priorities

2026 got off to a quick start as MDA and its advocates worked hard to pass the following priorities. Included in a bill that passed earlier in February were:

• $48.7 billion National Institutes of Health (NIH) funding – In addition, the bill included language limiting bureaucratic interference at the NIH.
• The Accelerating Kids’ Access to Care Act – This bill will make it easier for children living with neuromuscular diseases to access out-of-state care without unnecessary delays.
• Rare Pediatric Disease Priority Review Voucher Program reauthorization – Extending this program will encourage the development of life-changing treatments for rare pediatric diseases, including neuromuscular diseases.

Continuing to protect the community’s access to vital medical care

We expect to continue to see proposed changes to the nation’s health care system that could negatively affect the neuromuscular community. MDA and its advocates will continue to defend vital programs.

• Effects of 2025 Medicaid legislation – Last year, Congress passed many changes to Medicaid that will make accessing vital care more burdensome and even eliminate important benefits that are important for those who rely on the program. As decision-makers work to implement these changes, MDA and its advocates will continue to fight for ways to ensure the neuromuscular community can continue to receive vital Medicaid benefits.
• Enhanced advanced premium tax credits – These vital tax credits that help people afford insurance on the Affordable Care Act Marketplace expired in 2025. MDA will continue to push for reauthorization to ensure people can access vital insurance coverage.

Empowerment and increasing access in 2026

MDA and its advocates will work with decision makers at the federal level to improve care and support policies that will empower the neuromuscular community, including:

• Fully supporting caregivers by passing legislation that removes hurdles in accessing vital assistance and advocate for measures that promote financial support.
• Continuing to improve air travel for the disability community by ensuring full implementation of the 2024 FAA Reauthorization Act and robust enforcement of previous Department of Transportation regulations.
• Supporting policies that ensure those with disabilities can access quality education.

Over the next twelve months, MDA and advocates will be advocating for ways to improve access to treatments and therapies, including:

• Reauthorizing the ACT for ALS, which will accelerate access to much-needed therapies for the amyotrophic lateral sclerosis (ALS) and neuromuscular disease communities.
• Laying the groundwork for FDA user fee agreements, which must be passed by Congress in 2027. This is an opportunity to continue to reform how FDA does its work to ensure we can get much needed therapies to the NMD quicker.
• Expanding access to genetic testing and counseling, multi-disciplinary care, wheelchair repair, gene therapies, home and community-based services, and more.

Ensuring Everyone Can Vote

In 2026, the country will make their voices heard in midterm elections. However, we know that casting a ballot can be challenging for those living with a disability. This year, MDA will continue to provide resources and information so that our community can truly access the vote.

MDA and its advocates are ready to go, but we need your help, We need as many people speaking up as possible and raising their voices. Sign up today and make sure key decision-makers hear your voice!