People living with ALS and their families come first in everything we do, and everything we do supports the search for effective prevention strategies, treatments, and cures for ALS. The ALS Network is committed to improving outcomes for the ALS community through evidence-based approaches, innovation, collaboration, and fiscal responsibility.
The ALS Network exists to ensure that anyone facing ALS has someone to turn to for expert advice, access to treatments and clinical trials, essential equipment and support to enhance 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 that we serve in 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 of your support related to care services, research, and advocacy below:
Here are some specific milestones from 2023:
People with ALS Served
Care Services Successes
The ALS Network, then ALS Golden West, 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 were served in 31 counties 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.
ALS Network, then ALS Golden West, 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 31 ALS clinic partners, including Certified Treatment Centers of Excellence and Recognized Treatment Centers, to provide seamless, high-quality multidisciplinary care. Together with our clinic partners, we work to meet the needs of the ALS community and increase access to clinical trials.
in direct assistance
of fueling promising research in California and beyond
California ALS Research Summit
In January 2023, The ALS Network, then ALS Golden West, hosted the 13th annual California ALS Research Summit, bringing together world-renowned researchers, investigators, clinicians, biotech companies, government representatives, and advocates in ALS and related fields. The outcomes of their collaborative efforts were presented to the public at our online educational webinar, ASK ME: ALS Research and Care in 2023.
The webinar featured Clive Svendsen, PhD, Director, Cedars-Sinai Regenerative Medicine Institute and Chair, California ALS Research Network, who shared updates from the Summit and addressed the future impact on care and research in 2023. The 2023 Barber ALS Research Award winners were introduced. Catherine Lomen-Hoerth, MD, PhD, Clinic Director of ALS Treatment and Research Center, discussed the challenges and opportunities for increasing diversity, equity, and inclusion in research and clinical trials. The recording of the webinar can be seen on our YouTube channel.
We helped fuel research innovations, advancements in drug development and clinical trials, and new collaborations designed to accelerate the pace of discovery. The FDA announced their approval of Qalsody (tofersen) on April 25, 2023, as a new prescription therapy for the treatment of people with rare SOD1-ALS.
We celebrated the extraordinary efforts of our 2014 Essey Award honorees - ALS Network Advisory Trustee, Richard Smith, MD; Frank Bennett, PhD; and Don W. Cleveland, PhD - and their commitment to the development of antisense oligonucleotide (ASO) therapies, which led to the approval of Qalsody as a treatment for ALS.
New Treatment Approved
Gained more support and funding for the ALS community
Throughout 2023 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.