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Guide to Submitting Written Testimony to the FDA about AMX0035
On September 7, 2022, the FDA will host their second public advisory committee meeting (AdCom) about AMX0035.
Response to NINDS ALS Strategic Plan Request for Information
On Feb 10, 2022 I AM ALS submitted a response to the National Insititute of Neurological Disorders and Stroke (NINDS) ALS Strategic Plan Request for Information. NINDS is a part of the National Institute of Health (NIH), which is the largest public funder of ALS research.
A Look Back at 2021
We are a community-centric platform and we value transparency and a commitment to our mission to end ALS. We stand ready to be accountable for our commitments, when we excel and when we fall short. Here are the commitments we made in 2021 and where we stand one year later.
I AM ALS Names Laura Dalle Pazze its New Chief Executive Officer
I AM ALS named Laura Dalle Pazze its Chief Executive Officer. In her role, she leads a community revolutionizing a way to find treatments and cures for this fatal disease and helms the strategy for the next chapter of the organization’s future from start-up to sustaining movement.
ACT for ALS
The Accelerating Access to Critical Therapies for ALS Act was signed into law on December 23, 2021. This bill will establish: (1) an Expanded Access grant program that funds research on and provides access to promising investigational treatments to people living with ALS who are not eligible for clinical trials. (2) a public-private partnership for rare neurodegenerative diseases jointly led by the Food and Drug Administration (FDA) and the National Institutes of Health (NIH). This will be the first federal effort explicitly charged with speeding the development and approval of therapies for ALS and other rare neurodegenerative diseases. (3) a rare disease grant program at the FDA that will fund research on and development of interventions to prevent, diagnose, treat or cure ALS and other rare neurodegenerative diseases.
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.
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/MND 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.