Advocacy

Collaborating for Change at the 2025 ALS Community Summit

June 3, 2025 Comments Off on Collaborating for Change at the 2025 ALS Community Summit

On May 7–10, 2025, representatives from the ALS Network joined other nonprofit organizations at the second annual ALS Community Summit, hosted by I AM ALS in Washington, D.C. This four-day…

CNN: Harvard expert warns of danger to key public health research as a result of funding cuts

May 30, 2025 Comments Off on CNN: Harvard expert warns of danger to key public health research as a result of funding cuts

In response to federal research funding cuts, Marc Weisskopf, a professor in the Environmental Health Department at Harvard’s T.H. Chan School of Public Health, states, “It poses a tremendous threat…

The ALS Network Joins ALS United and Partners Across the Nation to Expedite Solutions to Advance the Fight Against ALS

May 3, 2025 Comments Off on The ALS Network Joins ALS United and Partners Across the Nation to Expedite Solutions to Advance the Fight Against ALS

This week, several ALS organizations came together in Washington, D.C. to expedite solutions to advance the fight against ALS in the current policy environment. We have committed to leverage our…

ALS News Today: Californians can help fund ALS research through tax contributions 

March 31, 2025 Comments Off on ALS News Today: Californians can help fund ALS research through tax contributions 

People living in California can help fund amyotrophic lateral sclerosis (ALS) research when filing their state taxes. The California ALS Research Network Voluntary Tax Contribution Fund allows Californians to contribute…

Lunch and Learn: Advocacy in Action with the ALS Network

March 30, 2025 Comments Off on Lunch and Learn: Advocacy in Action with the ALS Network

On Thursday, March 27, the ALS Network hosted an engaging Lunch and Learn session with our Policy and Advocacy Manager, Allison Nadeau, MPH, MBA. Attendees gained an inside look at…

 2025 National Advocacy Event – Participate In Person or Virtually

March 4, 2025 Comments Off on  2025 National Advocacy Event – Participate In Person or Virtually

Join the ALS Network for the 2025 Community Summit hosted by I AM ALS on May 7-10, 2025 in Washington, D.C. ALS Network is proud to once again sponsor this…

LETTER: Neuromuscular Advocacy Groups Oppose NIH Indirect Cost Cap of 15%

February 18, 2025 Comments Off on LETTER: Neuromuscular Advocacy Groups Oppose NIH Indirect Cost Cap of 15%

(PDF link) The Honorable Matthew J. Memoli, M.D., M.S.Acting DirectorNational Institutes of Health9000 Rockville Pike,Bethesda, Maryland 20892 Re: NOT-OD-25-068: Supplemental Guidance to the 2024 NIH Grants Policy Statement: Indirect Cost…

Highlighting the Importance of Advocacy at the More Than Our Stories Conference

February 5, 2025 Comments Off on Highlighting the Importance of Advocacy at the More Than Our Stories Conference

Alongside incredible ALS advocates and colleagues, the ALS Network had impactful discussions on public policy priorities for the ALS community at the More Than Our Stories conference – a grassroots…

Help Shape ALS Network’s 2025 Advocacy Priorities

December 5, 2024 Comments Off on Help Shape ALS Network’s 2025 Advocacy Priorities

At the ALS Network, we deeply value the voices of people living with ALS, their caregivers, and others who have been impacted by this disease. Your experiences and insights are…

California’s AB 2123 to offer caregivers access to paid family leave

November 15, 2024 Comments Off on California’s AB 2123 to offer caregivers access to paid family leave

Starting January 1, 2025, California Assembly Bill 2123 (AB 2123) will make it easier for family caregivers to access paid family leave (PFL). The law removes the requirement for employees…