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ACT for ALS

In 2021, Congress passed the bipartisan ACT for ALS, a groundbreaking piece of legislation that established the first-ever government-funded Expanded Access Program (EAP) for ALS. It also created new, desperately needed research initiatives to help find treatments and, ultimately, a cure for this devastating disease.

This didn’t happen overnight. It was the result of tireless advocacy from the ALS community, united with one voice to fight for hope, for access, and for progress. But now, we face a critical moment.

In 2026, unless Congress re-authorizes the ACT for ALS, the expanded access program and vital research infrastructure it supports will end. Let’s not go backward. It’s time to redouble our support for individuals with ALS and the families tirelessly advocating on their behalf.

Your voice matters. Your action can save lives.

Act for ALS

Watch Congressional Champions Fighting for ACT for ALS

people signed the petition.

actions taken to send 46,449 emails to Congress.

And that’s in addition to all the meetings!

Act for ALS
Act for ALS
Act for ALS

What is ACT for ALS?

ACT for ALS was established to tackle issues the community saw facing the ALS clinical trial landscape. Before ACT for ALS:

  • There were no disease altering treatments for ALS, only drugs that prolong life. Unfortunately, this is still true today.
  • People who were more than two years past their ALS symptom onset could not participate in interventional research or gain access to possible interventional therapies.
  • Data about the impact of potential therapies was only being collected from a small sample of the ALS community, as only 10-20% of people living with ALS are eligible for clinical trials.
  • People who lived far from major research centers had to travel long distances in order to participate in a clinical trial.

Thanks to ACT for ALS, we now have the following new treatment pathways, data, and other benefits and systems in place:

  • Five Expanded Access Programs
  • 690 individuals living with ALS who’ve accessed potential therapies and participated in ALS research.
  • Data on how drugs work in people living with ALS for more than two years is being produced.
  • AMP ALS brings together ALS researchers, drug sponsors, advocates, and government agencies to create systems that share data.
  • A grant program for rare neurodegenerative diseases has been established.
  • Natural history studies that will help us further understand ALS and how it impacts the body have been established.

What are Expanded Access Programs?

Expanded Access Programs (EAPs) provide access to investigational ALS therapies and research participation for individuals excluded from interventional clinical trials.

How can you find expanded access programs?

Currently, MediNova is the only ACT for ALS EAP that is enrolling: https://widetrial.com/

How can you help?

Thank Congress for passing ACT for ALS:
https://www.iamals.org/act-for-als-thank-you-email/
(We don’t have a bill yet, but we want Congress to be ready! Let’s remind them of the good work they did in 2021!)

Share your EAP Story:
https://www.iamals.org/a4a-eap-experience/

Share and read someone else’s EAP Story:
https://www.iamals.org/more-than-therapy-eaps-offer-hope-and-a-purpose/

Click here for: ACT for ALS: Beyond EAPs