The Accelerating Access to Critical Therapies for ALS Act will make $100,000,000 available each fiscal year from 2022-2026 to build new pathways to fund early access to ALS investigational therapies, accelerate ALS and neurodegenerative disease therapy development through a public-private partnership, and increase research on and development of interventions for rare neurodegenerative diseases through a new Food and Drug Administration (FDA) research grants program.
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The Morris ALS Principles
The Morris ALS Principles were developed by those most impacted by ALS as a social contract for the community to follow that will drive a path forward. They show how each of us can do better so that treatments and cures are a reality and not an empty promise.
Two years after initially testifying before Congress, our Co-Founder, Brian Wallach, again submitted a public witness testimony to the House of Representatives. Read his 2021 and past testimonies urging Congress to fully fund this ALS movement for treatments and cures.
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.
Statement on Patient Access to Therapies
While we seek cures, we stand committed to people living with ALS today having a chance to access treatments that could slow disease progression and give them more time. We firmly believe that even one more person with access to an ALS treatment that might work for them is progress.
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.
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.
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.