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 2024 below:
Here are some specific milestones from 2024:
Nearly 2000
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 2,000 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 Certified Treatment Centers of Excellence and Recognized Treatment Centers, to provide seamless, high-quality multidisciplinary care.
ALS Network partnered with UCSF Medical Center’s Health Clinic and Cottage Health Santa Barbara to launch a new satellite clinic focused on providing specialized local care for people living with ALS in the greater Santa Barbara area, increasing the number of satellite clinics by 20%.
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 launched the Advocacy Action Center - a one-stop hub empowering advocates to connect with their legislators, take meaningful action, access valuable resources, and stay informed about the ALS Network's campaigns and initiatives.
Throughout 2024 your advocacy for those living with ALS produced important results. We secured several significant victories for the ALS Network’s evidence-based wraparound model of care that helps people live longer and better with ALS and accelerates scientific discovery. These include the following:
- (CA AB 424) The ALS/Neurodegenerative Disease Registry was signed into law by California Governor Gavin Newsom. The bill establishes a statewide ALS registry and will direct the California Department of Public Health to collect data on ALS and require hospitals and healthcare professionals to report each case of ALS.
- (CA AB 511) The California ALS Research Network Voluntary Tax Contribution Fund was passed into law. Starting in 2025, Californians filing their state income taxes to donate an amount of their choice to fund ALS research. This will enable the establishment of a stable funding source to support the work of our California ALS Research Network.
- (H.R. 3875/S. 2880) The ALS Network supported the Expanded Telehealth Access Act designed to make permanent the expanded telehealth coverage introduced during the COVID-19 pandemic, and set to expire at the end of 2024.
- (S. 141) The US House and Senate passed the Elizabeth Dole 21st Century Veterans Healthcare and Benefits Improvement Act, which now awaits President Biden’s signature to become law. This legislation would expand vital support for veterans and their caregivers by increasing access to home and community-based care.
- (CA A.B. 2613) California Governor Gavin Newsom signed the Jacqueline Marie Zbur Rare Disease Advisory Council into law, making California the 29th state to establish such a council. This milestone ensures Californians living with ALS and other rare diseases have a powerful voice in shaping healthcare policies affecting their lives.
14 years
of fueling promising research in California and beyond
Advancing Global ALS Research
The ALS Network hosted the 14th annual ALS Research Summit, bringing together world-renowned researchers, investigators, clinicians, biotech companies, government representatives, and advocates in ALS and related fields.
The purpose of the Summit is to drive new ideas and foster networking, collaboration, and cooperation to accelerate progress for prevention strategies, effective treatments, and cures for ALS. The outcomes of their collaborative efforts were presented to the public at our online educational webinar, ASK ME: ALS Research and Care in 2024.
Our New 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 2024, we enhanced our global research program. The ALS Network’s new 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.
As a part of this new research program, the ALS Network granted $125,000 to AUTXX, LLC to help develop novel therapeutics for people living with ALS. $100,000 was granted to Amprion, who seeks to understand the cause of sporadic ALS and actively assists in the development of potential therapies by supporting clinical and laboratory research.
$17M+
invested in ALS research