ASK ME: ACT for ALS — Progress, Impact, and What’s Next

We invite you to our next ASK ME webinar “ACT for ALS — Progress, Impact, and What’s Next,” emceed by Jerry Dawson, president and CEO of ALS United. Hear from Allison Nadeau, MPH, MBA, ALS Network’s Director of Public Policy and Advocacy; Jinsy A. Andrews, MD, MSc, Network of Excellence for ALS (NEALS); Andrea Pauls Backman, MBA, ALS Strategy Consulting, LLC; James D. Berry, MD, MPH, Associate Chief of Neurotherapeutics and Chief of the Division of ALS and Motor Neuron Diseases; and Dr. Stacy Lewin Farber, ALS Advocate.

The one-hour session will provide an accessible overview of the landmark legislation and what it means for the ALS community today.

Topics will include:
The history and purpose of ACT for ALS
Key achievements since the law was enacted
Why reauthorization is essential
How the ALS Network and partner organizations are advancing advocacy work
A live question-and-answer segment with attendees

Signed into law in 2021, ACT for ALS established a practical, patient-centered approach to accelerating progress in three key ways: (1) building a shared data infrastructure to support research and move promising treatments toward approval faster; (2) creating a competitive Rare Disease Grant Program to advance research relevant to ALS and other rare neurodegenerative diseases; and (3) expanding access to investigational therapies for people who cannot enroll in clinical trials, while collecting critical real-world evidence in the process.