Advocacy

End the Legacy’s 2026 Genetic ALS & FTD Community Summit

March 31, 2026 Comments Off on End the Legacy’s 2026 Genetic ALS & FTD Community Summit

After two incredible summits in 2024 and 2025, End the Legacy’s 2026 Genetic ALS & FTD Community Summit is returning to Sacramento, CA, September 24–26, 2026. Hosted by ALS Network,…

ALS Community Funding Letter

March 9, 2026 Comments Off on ALS Community Funding Letter

Our ALS community came together with a unified message to Congress: sustained investment in ALS research is essential to accelerate treatments and move us closer to cures. The ALS Network…

Reauthorize ACT for ALS

February 4, 2026 Comments Off on Reauthorize ACT for ALS

ALS is a rapidly progressive, fatal disease—and for most patients, treatment options remain limited. Families don’t have the luxury of waiting years for the traditional drug development timeline. That’s why…

ALS Network Statement on Passage of the Federal Funding Package

February 3, 2026 Comments Off on ALS Network Statement on Passage of the Federal Funding Package

ALS Network celebrates the power of advocates whose sustained action, working alongside bipartisan leaders in Congress, helped secure meaningful new investments in ALS research in the fiscal year 2026 (FY26)…

Advocacy Update: L.A. Care Health Plan

November 24, 2025 Comments Off on Advocacy Update: L.A. Care Health Plan

We are pleased to share an important advocacy win that will directly benefit people living with ALS and their families across Los Angeles County. In early November, the ALS Network…

Texas Proposition 14 results: Voters Approve Amendment to Create Dementia Research Facility, Fund

November 4, 2025 Comments Off on Texas Proposition 14 results: Voters Approve Amendment to Create Dementia Research Facility, Fund

Texas voters Tuesday approved Proposition 14, which creates a state-funded dementia research facility and sets aside money aimed at prevention of the disease. SJR 3 authorizes the state comptroller to set…

California Expands Paid Family Leave to Include Chosen and Extended Family

November 3, 2025 Comments Off on California Expands Paid Family Leave to Include Chosen and Extended Family

Governor Gavin Newsom signed Senate Bill 590, expanding California’s Paid Family Leave program to include chosen and extended family members. This landmark legislation ensures Californians who pay into the Paid…

ALS Advocacy: What’s Happening and What’s Next

August 28, 2025 Comments Off on ALS Advocacy: What’s Happening and What’s Next

Here’s what’s happening in Washington, D.C., and how you can help safeguard ALS programs and research. Updates  Earlier this summer, the President signed H.R. 1 — the “One Big Beautiful…

ALS Network Donor Appreciation and Impact Message

August 25, 2025 Comments Off on ALS Network Donor Appreciation and Impact Message

Dear Friends, I am grateful for your steadfast support of the ALS Network and invite you to read our new Impact Report. We are excited to share how your partnership powers our mission-critical…

H.R.1 Health Changes: What They Mean for ALS Care

August 21, 2025 Comments Off on H.R.1 Health Changes: What They Mean for ALS Care

On July 4, 2025, the budget reconciliation bill, H.R.1, was signed into law. The legislation includes changes to Medicaid, Medicare, and the Affordable Care Act (ACA), putting at risk the…