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.

March 29, 2021

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Theresa Garner
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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.

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.

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.

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.