Critical ALS Legislation You Need to Know About

As we near the end of ALS Awareness Month, the work is just beginning to get critical legislation for those with ALS passed by Congress. This year, MDA is prioritizing and advocating for three major ALS congressional initiatives in service of those living with ALS.

First, we need to ensure ALS research and care programs are adequately funded. This is why we have joined with other leading ALS advocacy organizations in supporting robust appropriations for several government initiatives critical to ALS research and care.

Together, we are calling for:

• The doubling of Department of Defense Congressional-Directed Medical Research Program (CDMRP) funding to $80 million for fiscal year 2027 (FY27).
• An increase to the funding of Centers for Disease Control and Prevention’s ALS registry program, and strong National Institutes of Health (NIH) and Advanced Research Projects Agency for Health (ARPA-H) research funding.
• Full funding of the ACT for ALS.

Not only does the ACT for ALS need to be funded, it needs to be reauthorized. This critical law has delivered over $125 million in funding for 750 individuals with ALS to receive investigational treatments outside of clinical trials. The law has also funded new collaboratives focused on accelerating ALS and rare neurodegenerative disease drug development, as well as commissioned a plan from FDA on how they will innovatively regulate new treatments.

Thankfully, progress is already being made. After over 25 ALS organizations celebrated the introduction of the ACT for ALS Reauthorization ACT in early April, the House Energy and Commerce Committee has been working diligently to get the bill to the House floor. This includes a markup on May 21^st, and hopefully a vote by the full House in June. The Senate has also introduced their version of the bill. Because there is strength in numbers, and our voices are louder when we join them together, we are asking all community members to tell their members of Congress to support the legislation. You can do this in less than five minutes by visiting our Voter Voice page and following the prompts there. The law expires at the end of September – we have no time to waste.

While these urgent priorities are taking center stage, we also know our ALS care delivery system needs to be reformed. This is why we are supporting the ALS Better Care Act – legislation that provides coverage and reimbursement for critical ALS care. We are asking all community members to urge their Congressmembers to co-sponsor the legislation. Again, you can very easily reach out to your Congressmembers by visiting our Voter Voice page dedicated to the ALS Better Care Act here.

As we reflect on the collective impact we can make together this ALS Awareness Month, we have a big job in front of us. Whether it’s appropriations, reauthorizing the ACT for ALS, or passing the ALS Better Care Act, we need a unified effort to succeed. That’s why your voice is so important. Please join us!