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Current Federal Action Alerts
Your story matters. Each of these campaigns represents an opportunity to drive meaningful change for the ALS community. Choose an issue that matters to you and make your voice heard in Congress.
Protect ALS Research
Urge Congress to oppose NIH funding cuts
Research funding is the foundation of hope for breakthrough treatments and an eventual cure. NIH-funded research has led to every major advancement in ALS treatment and care.
Action Item: Write your representative *COMING SOON
Support Family Caregivers
Ask your member of Congress to sponsor the Credit for Caring Act 2025 (H.R. 2036/S.925)
This bipartisan bill would provide a new federal tax credit of up to $5,000 for working family caregivers. Led by Representatives Linda Sánchez (D-CA) and Mike Carey (R-OH), and Senators Shelley Moore Capito (R-WV) and Michael Bennet (D-CO), the bill recognizes the vital role caregivers play while juggling jobs and family responsibilities.
With over 11 million Americans providing unpaid care for individuals living with chronic illnesses, this credit would offer meaningful financial relief and help strengthen families and communities.
Action Item: Write your representative *COMING SOON
Expand Telehealth Access
Tell your members of Congress to sponsor the CONNECT for Health Act of 2025 (S.1261)
Telehealth is a lifeline for people living with ALS, offering safe, accessible care from home when mobility, breathing challenges, and fatigue make travel difficult. This legislation would make these vital services permanent by:
- Removing geographic restrictions and allowing the home to be an originating site
- Permanently authorizing health centers and rural health clinics to provide telehealth
- Expanding the types of healthcare professionals who can deliver telehealth services
- Eliminating in-person visit requirements for telemental health
- Allowing telehealth waivers during future public health emergencies
Action Item: Write your representative *COMING SOON
Ensure Justice for ALS Veterans
Message your member of Congress to sponsor the Justice for ALS Veterans Act of 2025 (H.R. 749/1685)
For unknown reasons, veterans are twice as likely to be diagnosed with ALS as the general population, regardless of branch of service. Under current VA policy, families only receive enhanced Dependency and Indemnity Compensation if the veteran lived with a fully debilitating condition for at least eight years. Since ALS progresses rapidly—often within 2 to 5 years—many families are unfairly excluded.
This bipartisan legislation, introduced by Senators Chris Coons (D-DE) and Lisa Murkowski (R-AK), would ensure that surviving spouses of veterans who died from ALS receive the full VA benefits they deserve.
Action Item: Write your representative
Protect Medical Research Funding
Demand your member of Congress to defend funding for the CDMRP at FY24 levels
The Congressionally Directed Medical Research Program funds critical ALS research that brings us closer to effective treatments and a cure. This program has supported groundbreaking research including clinical trials and innovative approaches that wouldn't otherwise receive funding.
Action Item: Write your representative *COMING SOON
Need Help Taking Action?
- New to advocacy? Don't worry - it's easier than you think! Most of our action alerts include pre-written messages you can personalize with your own story.
- Want to do more? Connect with a Member Near You to find local advocacy opportunities and training.