Amylyx Updates

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.

September 14, 2021

FOR PRESS INQUIRIES

Theresa Garner
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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.

I AM ALS Navigation Update

For 2021, we aim to expand the reach of community-based navigation services to more people affected by ALS at every step of the experience, with a goal of providing high-quality compassionate support. We also have a renewed focus on improving access to and utilization of Navigation for under-resourced populations across the country.

Legislative Priorities of the Legislative Affairs Community Team in the First 100 Days of 2021

The fierce advocates on I AM ALS’ Legislative Affairs Community Team have set an aggressive but critical agenda for the first 100 days of 2021. Here are the team’s top priorities.

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.

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.

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.

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.