Our Impact in 2022
People living with ALS and their families come first in everything we do, and everything we do supports the search for effective treatments and cures for ALS. The Golden West Chapter of The ALS Association is committed to improving outcomes for the ALS community through evidence-based approaches, innovation, collaboration, and fiscal responsibility.
The Golden West Chapter exists to ensure that anyone facing ALS has someone to turn to for expert advice, essential equipment and support, 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 31 California counties and the state of 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 2022:
People with ALS Served
Care Services Successes
The Golden West Chapter 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 support 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.
The Golden West Chapter provided more than 830 grants to people with ALS for durable medical/communication 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.
Grants to People with ALS
of fueling promising research in California and beyond
California ALS Research Summit
In January 2022, the Golden West Chapter hosted the 12th 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 2022.
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 2022. The 2022 Barber ALS Research Award winners were introduced, and P. Hande Ozdinler, PhD, from Northwestern University, presented her lab’s research incorporating upper motor neuron biology into treatment strategies for ALS. The recording of the webinar can be seen on our YouTube channel.
We helped fuel a significant number of research innovations, advancements in drug development and clinical trials, and new collaborations designed to accelerate the pace of discovery. The ALS Association has invested over $122 million in ALS research since the 2014 ALS Ice Bucket Challenge.
Our global approach to funding research serves to fuel the most promising projects by pioneering ALS scientists. The FDA announced their approval of RELYVRIO (AMX0035). The drug has been shown to slow the progression of the disease and extend life by several months. The ALS Association funded initial research and the Phase 2 clinical trial and worked with additional ALS organizations to advocate for FDA approval. Our Chapter honored Amylyx Pharmaceuticals, Inc, with our Essey Commitment to Cures Award in 2021.
Invested in ALS Research
to fuel essential
Throughout 2022, your advocacy for those living with ALS produced some incredible results. We secured critical funding for ALS research taking place worldwide and gained funding for the Golden West Chapter's evidence-based wraparound model of care that helps people live longer and better with ALS and accelerates scientific discovery.
- Golden West Chapter leadership worked to advance a one-time allocation of $2,000,000 in California state funding to fuel essential care services and research efforts.
- The U.S. Food and Drug Administration awarded $3.7 million to three ALS research projects as part of the implementation of the ACT for ALS.