Our Impact
The ALS Network is a family of support for people living with ALS and their loved ones. Everything we do supports the search for effective prevention strategies, treatments, and cures for ALS while improving outcomes for the ALS community through evidence-based approaches, innovation, collaboration, and fiscal responsibility.
The ALS Network, formerly ALS Golden West, exists to ensure anyone facing ALS has someone to turn to for expert advice, access to treatments and clinical trials, essential equipment and support to enhance the quality of life, community, caring conversations, and so much more. Now and always, we remain committed to meeting the needs of individuals and families facing ALS across California and Hawaii. Everything we do is made possible by the generosity of the ALS community and those who care about them. Thank you for your ongoing dedication and support of our mission.
Learn more about the impact that your support of the ALS Network had on our mission priorities in care services, research, and advocacy in 2025 below:
Here are some specific milestones from 2025:
Nearly 2500
People with ALS Served
Local Care Services Successes
The ALS Network continued to offer critically needed information, support, and resources to help with the daily challenges of living with ALS. Nearly 2,500 people with ALS and their loved ones served throughout California and the state of Hawaii.
We offered a wide array of programs, from professional care management to ASK ME educational webinars and connection groups. We also provided direct assistance to people with ALS and their families for equipment, respite care, transportation, and activities that benefit children and teens.
Equipment Loans
The ALS Network has provided more than $200K in direct assistance to people with ALS for equipment needs, transportation support, emergency assistance, and respite care.
Collaboration with Clinic Partners
We collaborated with more than 30 ALS clinic partners, including ALS Multidisciplinary Treatment Centers, to seamlessly provide quality care.
Together with our clinic partners, we work to meet the needs of the ALS community and increase access to clinical trials.
$200K
in direct assistance
Gained more support
and funding for the ALS community
National and Statewide Advocacy Wins
The ALS Network advanced ALS advocacy at the federal, state, and local levels. Our public policy efforts are powered by people with ALS and their families, and focus on protecting access to care, research, and FDA-approved treatments.
The ALS Network launched its first Advocate Committee, creating a community-led forum for people living with ALS and caregivers to engage directly in advocacy. The committee has taken action to support ALS Caucus growth and shape caregiver-focused education and policy priorities grounded in lived experience.
- Alongside advocacy partners, the ALS Network helped pass California Senate Bill 590, expanding Paid Family Leave to include chosen and extended families, ensuring caregivers supporting people living with ALS can take paid, job-protected leave that reflects reali caregiving relationships.
- The ALS Network helped lead national strategy and education efforts to advance the reauthorization of the ACT for ALS Act, aligning partners, engaging congressional offices, and elevating community stories to reinforce the law’s impact and the need for sustained federal investment.
- The ALS Network joined ALS organizations nationwide in coordinated sign-on letters and joint advocacy to defend funding for the National ALS Registry and Biorepository, oppose proposals limiting access to Medicaid and community-based services, and urge Congress to fully fund ALS programs across NIH, the Department of Defense, and CDC.
- In California, the ALS Network, alongside advocacy partners, engaged L.A. Care and submitted formal opposition that resulted in protecting key CalAIM Community Supports in Los Angeles County, preserving access to care for people living with ALS and
their caregivers. - In Hawaii, the ALS Network held nine meetings with state policymakers to increase ALS awareness and build momentum for future policy advocacy for families. The ALS Network also supported House Bill 701 (HD1), legislation aimed at strengthening financial support for family caregivers.
15 years
of fueling promising research in California and beyond
Advancing Global ALS Research
The ALS Network hosted the 15th annual ALS Research Summit in January, 2025, bringing together world-renowned researchers, investigators, clinicians, biotech companies, government representatives, and advocates in ALS and related fields to drive new ideas and foster collaboration.
Our Expanding Research Program
The ALS Network helps fuel research innovations, advancements in drug development and clinical trials, and new collaborations designed to accelerate the pace of discovery. In 2025, we enhanced our global research program. The ALS Network’s Scientific Advisory Committee, composed of world-renowned researchers, scientists, and healthcare industry leaders reviews and selects the most promising projects and moonshot efforts for funding.
The Community Research Committee was established to provide ALS community member guidance, recommendations, and feedback to the ALS Network in its mission to advance ALS research. This committee contributes to the development and execution of a robust research agenda, ensuring excellence, innovation, and relevance in the pursuit of unique projects designed to solve critical problems in ALS.
In Spring 2025, the ALS Network launched its first public request for proposals, significantly expanding the portfolio of supported research through the ALS Network Innovation Grant funding opportunity. After an extensive review process, driven by our Scientific Advisory Committee and Community Research Committee, 14 groundbreaking Innovation Grants were selected for funding.
The ALS Network funded $2.4M in research grants to over 40 researchers, including 14 early career researchers via collaboration with leaders across the ALS research ecosystem. This brings ALS Network’s total research investment well over $21M.
$21M+
invested in ALS research