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.

March 25, 2021

FOR PRESS INQUIRIES

Theresa Garner
[email protected]

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2021 Commitments

In year three, I AM ALS will continue the revolution.

2021 Policy Priorities

ALS is relentless. So are we. Here is what we have our sights set on to deliver in 2021.

A Note to the Social Security Administration

19 organizations came together to strongly urge the Social Security Administration to honor the enactment for all those already in the waiting period. The five-month waiting period for SSDI benefits is cruel given the speed and severity of the disease.

Looking Back on 2020

We are a movement out to revolutionize how to end disease, with our sights set squarely on ALS. Over the past year, we have doubled down on our mission and delivered on our 2020 commitments and more, driven by the ALS community. We stand boldly looking at a future with great hope to change legacies. Look at what we’ve done together!

DoD ALS Research Program

Over the past two years, the ALS community has helped increase the DoD's CDMRP ALS Research Program from $10 million to $40 million in funding for ALS research.

Where the Money Goes

One of the most important roles we have as an organization is to be a good steward of the donations you provide to focus on accelerating promising research and getting treatments in the hands of patients — not in 20 years, but as soon as possible. In 2020, I AM ALS funded $500,000 in ALS research grants.

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.

A note from I AM ALS CEO on a policy change

Brainstorm’s NurOwn Updates

In a first-of-its-kind meeting, I AM ALS brought together senior leadership from the Food and Drug Administration (FDA) and Brainstorm Cell Therapeutics, a U.S. biotechnology company that is developing a potential breakthrough ALS treatment, NurOwn.

ALS Signal and PaCTD

I AM ALS debuted the launch of ALS Signal: Clinical Research Dashboard. ALS Signal is a new global resource created by dedicated patients, caregivers and advocates to offer a user-friendly way to discover current ALS-related clinical research, allowing for efficient access to information that is vital to the ongoing efforts to end ALS.

ALS Disability Insurance Access Act of 2019

Twenty ALS advocacy groups collaborated together to thank the more than 360 Congressional members from across the aisle who have co-sponsored H.R. 1407 and S. 578, which would extend Social Security Disability Insurance (SSDI) benefits for patients living with ALS. The bill was signed into law by the President on December 22, 2020.

Get In. We’re Curing ALS Newsletter

Welcome to the Get in. We're Curing ALS newsletter from I AM ALS including weekly updates on what we were up to the week before, priority actions you can take to help further the movement and community happenings.

Website Launch

I AM ALS launched a fully redesigned website focused on improving the user experience, with simplified language, a search bar, compatibility with all browsers and optimized function for impairments and disabilities. I AM ALS is a patient-centric movement revolutionizing how to fight disease.