I AM ALS statement regarding Tofersen AdComm

NINDS releases draft of ALS Strategic Plan

I AM ALS is pleased that the National Institute of Neurological Disorders and Stroke (NINDS) released their ALS Strategic Plan.

NINDS has awarded the first Expanded Access Grant under ACT for ALS

Today, September 30, 2022, the National Institute of Neurological Disorders and Stroke (NINDS) awarded the first of what we hope to be many Expanded Access Program (EAP) grants to help people with Amyotrophic Lateral Sclerosis (ALS) who do not qualify for clinical trials.

I AM ALS statement regarding 7 – 2 vote in favor of AMX0035 approval

On September 7, 2022, the Peripheral and Central Nervous System Drugs Advisory Committee (AdCom) met for the second time to discuss the New Drug Application (NDA) for AMX0035. After hearing from clinicians, scientists, field experts, and people living with ALS, the committee voted 7 - 2 in favor of approval!

Comments from ALS Organizations United in Support of AMX0035 Approval

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.

ALS Organizations Unite in Support of AMX0035 Approval

ALS Organizations Unite in Support of AMX0035 Approval. Read their open letter.

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.

2021 International Symposium on ALS/MND

At the 2021 International ALS/MND Symposium, four different poster submissions were accepted. Each topic is an initiative that came out of the incredible work done by those most impacted by ALS who are members of I AM ALS Community Teams. 

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.