CA AB 511: California ALS Research Network Voluntary Tax Contribution Fund

Through the advocacy leadership of the ALS Network, language was drafted to create AB 511 (Dixon) to leverage the well-established State tax check-off program to enable a funding source to support the work of our California ALS Research Network. With the prospect of a more predictable revenue source, our Network and our partners can continue to bring some of the brightest minds in ALS research together to bridge the gap between the researcher’s bench and the patient’s bedside.

The bill states,

“Through enacting AB 511, it is the intent of the Legislature, to establish a systematic program to bring together California’s academic, clinical, and scientific infrastructure to advance our collective understanding of the causes, cures, and prevention of ALS. The outcome of this collaboration may have direct effects and consequences on the development of a comprehensive system that may identify the causes, cures, and prevention of ALS, as well as improving the screening, diagnosis, and treatment of victims of ALS. 

“This program shall underwrite the costs of bringing together California’s physicians, hospitals, laboratories, educational institutions, and other organizations and persons for the purpose of enabling organizations and persons to advance ideas and activities that will better our understanding of ALS clinical care and explore opportunities that science can play in the diagnosis, treatment, and prevention of ALS. 

“For taxable years beginning on or after January 1, 2024, and before January 1, 2031, an individual may voluntarily designate a personal contribution in excess of the personal income tax liability, if any, be made to the California ALS Research Network Voluntary Tax Contribution Fund on their state tax return.”

This history of California’s commitment to the ALS community was first established in 2008 when then-Governor Jerry Brown first signed into state law SB 1502 (Steinberg) creating the ALS/Lou Gehrig’s Disease Research Fund as part of the California Tax Check-off Program. In 2011, AB 234 (Fuentes) reestablished the Fund to which California taxpayers contributed more than $550,000 to be reinvested in California-based ALS research projects and clinical trials. It was these efforts that set the stage for the creation of our California ALS Research Network and our annual California ALS Research Summit.

The ALS Network established the California ALS Research Network to better coordinate the collaborative efforts of the state’s robust scientific infrastructure, including academic labs, biotechs, pharmaceutical companies, and treatment clinics. In turn, the purpose of our annual California ALS Research Summit is to increase, expedite, and promote ALS and related research done in California and across the country; and to foster networking, collaboration, and cooperation among investigators, clinicians, clinical trial sites, and industry partners to identify, develop therapeutic ideas that can deliver effective treatments, and ultimately cures, for ALS.

Since 2010, the ALS Network has hosted the annual Summit which has become a model for bringing together California’s robust ALS patient care infrastructure and scientific leaders in the ALS research community. The goal is to harness the multidisciplinary expertise necessary to improve patient care, accelerate scientific discovery, and create a roadmap for ALS research. The California ALS Research Network provides the structure necessary to advance public/private partnerships within the state - gathering all essential entities to identify and develop potential therapies.

We are grateful to our legislators and passionate ALS advocates who collaborate at all levels - state, local, and federal - to improve awareness and resources for people affected by ALS. This is ALS advocacy in action!