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I AM ALS Names Laura Dalle Pazze its New Chief Executive Officer
I AM ALS named Laura Dalle Pazze its Chief Executive Officer. In her role, she leads a community revolutionizing a way to find treatments and cures for this fatal disease and helms the strategy for the next chapter of the organization’s future from start-up to sustaining movement.
ACT for ALS
The Accelerating Access to Critical Therapies for ALS Act was signed into law on December 23, 2021. This bill will establish: (1) an Expanded Access grant program that funds research on and provides access to promising investigational treatments to people living with ALS who are not eligible for clinical trials. (2) a public-private partnership for rare neurodegenerative diseases jointly led by the Food and Drug Administration (FDA) and the National Institutes of Health (NIH). This will be the first federal effort explicitly charged with speeding the development and approval of therapies for ALS and other rare neurodegenerative diseases. (3) a rare disease grant program at the FDA that will fund research on and development of interventions to prevent, diagnose, treat or cure ALS and other rare neurodegenerative diseases.
2021 International Symposium on ALS/MND
At the 2021 International ALS/MND Symposium, four different poster submissions were accepted. Each topic is an initiative that came out of the incredible work done by those most impacted by ALS who are members of I AM ALS Community Teams.
I AM ALS Hires Director of Science and Policy
I AM ALS taps Dr. Megan Miller to work with the community in transforming the ALS research ecosystem through patient-driven strategy.
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.
There are some changes coming to the movement to end ALS but the urgency of this mission remains the same.
The Morris ALS/MND 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.
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.