In response to the New England Journal of Medicine publication of encouraging clinical trial results showing that Amylyx Pharmaceuticals’ AMX0035 brought statistically significant benefit to people living with ALS, The ALS Association and I AM ALS immediately called on the drug company and the FDA to make the treatment widely available as soon as possible.
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I AM ALS Hires Director of Science and Policy
I AM ALS taps Dr. Megan Miller to work with the community in transforming the ALS research ecosystem through patient-driven strategy.
Congressional Hearing Testimony with the FDA
Brian Wallach and Sandra Abrevaya testified before Congress during the House Energy and Commerce Health Subcommittee hearing on "The path forward: advancing treatments and cures for neurodegenerative diseases." This is their full testimony.
There are some changes coming to the movement to end ALS but the urgency of this mission remains the same.
The Morris ALS Principles
The Morris ALS Principles were developed by those most impacted by ALS as a social contract for the community to follow that will drive a path forward. They show how each of us can do better so that treatments and cures are a reality and not an empty promise.
Two years after initially testifying before Congress, our Co-Founder, Brian Wallach, again submitted a public witness testimony to the House of Representatives. Read his 2021 and past testimonies urging Congress to fully fund this ALS movement for treatments and cures.
We will find cures for ALS. The only question is when. That answer depends on you.
Stay informed on I AM ALS’ progress and what you can do to help us make hope real.
Statement on Patient Access to Therapies
While we seek cures, we stand committed to people living with ALS today having a chance to access treatments that could slow disease progression and give them more time. We firmly believe that even one more person with access to an ALS treatment that might work for them is progress.
ACT for ALS
The Accelerating Access to Critical Therapies for ALS Act will make $100,000,000 available each fiscal year from 2022-2026 to build new pathways to fund early access to ALS investigational therapies, accelerate ALS and neurodegenerative disease therapy development through a public-private partnership, and increase research on and development of interventions for rare neurodegenerative diseases through a new Food and Drug Administration (FDA) research grants program.
Lou Gehrig Day for MLB
After a group of advocates impacted by ALS banded together to honor Lou Gehrig and the ALS community and raise awareness for ALS, Major League Baseball announced a league-wide Lou Gehrig Day that will be held yearly on June 2nd.
The Road to Accessing Promising Treatments
As we said last week, I AM ALS will not stand for the status quo when that means tens of thousands of people are diagnosed with ALS and told there is nothing medicine can do. We also recognize that leadership doesn’t mean we have all of the answers. That’s why we spent the last week listening to the ALS community. Here is our proposed response, not to the outcome of a single trial but to everything we see happening in ALS research.
A Guide to Organizing Playbook
The Playbook is a step-by-step guide for those who are out to build a movement on how to empower and mobilize a community to end a disease.
Diversity and Inclusion Efforts at I AM ALS
I AM ALS is committed to intentionally addressing the gaps of inclusion and equity in the ALS community. While we can acknowledge there is a lot of work to do, we are here to take the first steps to address these gaps and ensure all people impacted by ALS have the opportunity to receive care and be a part of the revolution.