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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.
ACT for ALS
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.
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.
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.
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.
Promising Pathway Act
The Promising Pathway Act introduced in both the House and the Senate will amend the Federal Food, Drug, and Cosmetic Act to establish a time-limited provisional approval pathway for certain drugs and regulated medical products.
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.