The Accelerating Access to Critical Therapies for ALS Act will make $75,000,000 available in FY 2021 and 2022 as part of a pilot to provide grants to support expanded access programs. It will bring treatments for rapidly progressing diseases for which effective therapies don’t already exist to patients beyond the ongoing clinical trial.
See our coverage on
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.
Lou Gehrig Day for MLB
Last week was filled with incredible highs and devastating lows for us. A close group of advocates — some currently battling ALS and others who have joined the fight — have been meeting weekly for the last year to push for an official Lou Gehrig Day in baseball. Our tireless efforts paid off with word that all 30 teams officially signed on to support our cause.
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.
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 ALS community is now calling on Congress for swift passage of H.R. 1407 and S. 578.
Petition to Make Amylyx’s AMX0035 Available
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.
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.
DoD ALS Research Program
In 2019, the ALS community helped secure an increase of $10 million per year in funding for ALS research REAL. So, we took a step back to look at how we made it happen.
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.
NIH Program: Accelerating Leading-Edge Science in ALS
The National Institutes of Health (NIH) announced it will invest $25 million over the next five years to spur innovative research on ALS and examine the links between ALS and other neurodegenerative disorders.
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. We promised everyone who gave through our website that 100% of that donation would go directly back into research that could make a difference for people living with ALS and we are staying true to our word.