us-ca/statute/rtc/18881

The Legislature finds and declares all of the following:

(a)Amyotrophic lateral sclerosis (ALS), more commonly…#

(a) Amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gehrig’s disease, is a degenerative disease of the motor nerves that causes progressive weakness of all voluntary muscles. People with ALS become unable to move, swallow, speak, and breathe without assistance, usually remaining fully aware of what is happening to them and their families.

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Official source

The Legislature finds and declares all of the following:

(a)Amyotrophic lateral sclerosis (ALS), more commonly…#

(a) Amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gehrig’s disease, is a degenerative disease of the motor nerves that causes progressive weakness of all voluntary muscles. People with ALS become unable to move, swallow, speak, and breathe without assistance, usually remaining fully aware of what is happening to them and their families.

(b)ALS is a fatal disease. There is no cure and only a few…#

(b) ALS is a fatal disease. There is no cure and only a few drug therapies, none of which allow for meaningful life extension. Most ALS patients die within two to five years of symptom onset. Every 90 minutes someone is diagnosed with ALS, and every 90 minutes someone dies of the disease. ALS knows no racial, ethnic, or socioeconomic boundaries, often striking people at midlife and at the height of family, career, and financial responsibilities.

(c)The devastating physical, emotional, and financial…#

(c) The devastating physical, emotional, and financial effects caused by the progression of ALS and the 24-hour, seven-day-a-week caregiving required impact not only the patient, but the entire family. ALS is a family disease, and the need for a coordinated effort on the part of the research and clinical care community in California is essential.

(d)It is the intent of the Legislature, in enacting this…#

(d) It is the intent of the Legislature, in enacting this article, 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.

(Added by Stats. 2023, Ch. 265, Sec. 1. (AB 511) Effective January 1, 2024. Inoperative as prescribed in subd. (b) of Section 18885 if its repeal conditions are met. Repealed, pursuant to Section 18885, on December 1, 2031, by subd. (a), or on earlier date prescribed in subd. (b).)