See our coverage on
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.
2021 Policy Priorities
ALS is relentless. So are we. Here is what we have our sights set on to deliver in 2021.
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!
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.
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.