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 ALS community is now calling on Congress for swift passage of H.R. 1407 and S. 578.
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A year after initially testifying before Congress, I submitted written testimony to the House of Representatives. If not for COVID-19 I would have gotten on a flight to Washington DC to share this message on behalf of the tens of thousands of ALS patients, loved ones, and advocates to members of Congress in person. - Brian Wallach
I AM ALS Progress
In just 12 months, I AM ALS has built a movement of more than 60,000 members and reached more than 40 million people with the support of new partners like the Chan Zuckerberg Initiative to empower, for the first time ever, a movement of advocates to activate and drive change in their own communities and across the country.
Thank You to the Community
Thank you for being with us in this fight. Thank you for bringing authenticity, strength, and a belief that we have the power among us to cure ALS. It is only because of this shared belief that we can accomplish so much together every day.
FDA ALS Clinical Trial Guidance Released
The big news on Monday, September 23, 2019 was that the FDA ALS Guidance document at last was finalized! With great anticipation, we read and re-read it and were happy to find that so much mapped to the recommendations we provided on August 28, 2019. The recommendation document was a compilation of a multitude of ALS advocate voices since 2013. We ensured this document reflected the time and expertise of so many before us and so many who are no longer with us.
I AM ALS and Brainstorm NurOwn Meets with FDA
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.
The ALS Caucus brings together members of Congress from both sides of the aisle to share experiences, exchange ideas, and work collaboratively to find a cure for amyotrophic lateral sclerosis (ALS). The caucus was formed with the help of I AM ALS and many ALS advocacy groups, including The ALS Association and others.
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.
Cures for All Initiative
While some take on ALS, others Parkinson’s and others multiple sclerosis, the reality is our efforts are all linked. Researchers believe that if we can discover a cure to one of these neurodegenerative diseases, we can help find cures for all. Few, however, know that our movements are linked.