SCR146 - Cystic Fibrosis Awareness Month.

Senate Concurrent Resolution No. 146 CHAPTER 75 Relative to Cystic Fibrosis Awareness Month. [ Filed with Secretary of State May 29, 2026. ] LEGISLATIVE COUNSEL'S DIGEST SCR 146, Laird. Cystic Fibrosis Awareness Month. This measure would proclaim the month of May 2026 as Cystic Fibrosis Awareness Month in California. Digest Key Fiscal Committee: NO Bill Text WHEREAS, Cystic fibrosis, a chronic and progressive systemic disease for which there is no known cure, is the most common fatal genetic disease in the United States; and WHEREAS, Over 40,000 children and adults in the United States have been diagnosed with cystic fibrosis, and more than 1,000 new cases are diagnosed each year, predominantly through newborn screening; and WHEREAS, Cystic fibrosis impacts individuals of every race and ethnicity, but due to health disparities and newborn screening panels that fail to capture rare cystic fibrosis transmembrane conductance regulator mutations, many individuals with cystic fibrosis are misdiagnosed or diagnosed late; and WHEREAS, Due to new therapeutic advances, 50 percent of children diagnosed with cystic fibrosis after 2020 are predicted to survive to 65 years of age; and WHEREAS, Despite advances in disease understanding and new therapies, the median age of death for those with cystic fibrosis remains under 40 years of age; and WHEREAS, The federal National Institutes of Health estimates that more than 10,000,000 Americans are unknowing, symptomless carriers of the cystic fibrosis gene and have high odds of passing the gene to their children; and WHEREAS, Prompt, aggressive treatment of the symptoms of cystic fibrosis can extend the lives of people who have the disease and a nationwide network of care centers exists to improve the length and quality of life for individuals with cystic fibrosis; and WHEREAS, Recent advances in cystic fibrosis research have produced promising leads in gene, messenger ribonucleic acid (mRNA), and drug therapies beneficial to people who have the disease; and WHEREAS, The Cystic Fibrosis Research Institute (CFRI) was formed 51 years ago in 1975 by a group of parents whose children with cystic fibrosis were not expected to survive their teen years; and WHEREAS, CFRI’s mission is to be a global resource for the cystic fibrosis community while pursuing a cure through research, education, advocacy, and support; and WHEREAS, CFRI provides funding for innovative cystic fibrosis research at medical and academic centers in California and nationwide to expand understanding of the disease, seek new therapies, and ultimately find a cure for this challenging multisystemic disease; and WHEREAS, CFRI seeks to improve the quality of life for all people with cystic fibrosis in California and the nation, as well as their family members, by providing educational and psychosocial support programs; and WHEREAS, Support for those impacted by cystic fibrosis, a rare disease, begins with the raising of public awareness, and CFRI works within the diverse cystic fibrosis community on both the state and national level to advocate for continued research, access to quality care, and the development of new therapies to extend and enhance lives; now, therefore, be it Resolved by the Senate of the State of California, the Assembly thereof concurring, That the Legislature proclaims the month of May 2026 as Cystic Fibrosis Awareness Month; and be it further Resolved, That the Legislature honors the goals and ideals of Cystic Fibrosis Awareness Month so as to promote public awareness and understanding of cystic fibrosis and the diverse communities it impacts; and be it further Resolved, That the Legislature encourages early diagnosis and access to quality care for all people with cystic fibrosis to improve the quality of their lives, advocates for increased support for people who have cystic fibrosis and their families, and supports research to find a cure for cystic fibrosis; and be it further Resolved, That the Secretary of the Senate transmit copies of this resolution to the author for appropriate distribution.