• Russ Newton

ACT for ALS Passes in the Senate! December 16, 2021

Tonight infused us with hope and inspiration. Tonight, ACT for ALS passed in the Senate because tens of thousands of you took action nonstop to change history! THANK YOU!

ACT for ALS will make a tremendous impact in the movement to end ALS in the following ways: (1) It creates a grant program that funds research on and access to investigational ALS treatments being tested from small biopharmaceutical companies to people living with ALS who are not participating in a clinical trial. (2) It establishes a Health and Human Services (HHS) public-private partnership for 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 the responsibility to speed the development and approval of therapies for neurodegenerative diseases. (3) It develops an FDA grant program which funds research on and development of interventions to prevent, diagnose, treat or cure ALS and other life-threatening or severely debilitating neurodegenerative diseases.

This means since I AM ALS started in 2019, more than $183M in new federal funding for ALS research has come to this revolution. That’s more than the Ice Bucket Challenge (which raised $115M) to invest in critical discovery.

This funding is the investment needed to turn ALS from a terminal disease into a chronic and treatable one. After today, we are closer to making that day real than we ever have been. Thank you for being a powerful force in the movement to end ALS. Gratefully, I AM ALS

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I AM ALS is a patient-led community that provides critical support and resources to patients, caregivers and loved ones. It empowers advocates to raise awareness and lead the revolution against ALS in driving the development of cures. Learn more at iamals.org.

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