Bill > K00149

This resolution memorializes Governor Kathy Hochul to proclaim October 2025 as Cockayne Syndrome (CS) Awareness Month in New York State, highlighting a rare and terminal neurodegenerative genetic disorder that affects approximately two to three newborns per million in the United States and Eastern Europe. The resolution provides context about CS, explaining that it is an autosomal recessive genetic disorder with a life expectancy of 12 to 20 years, characterized by physical traits such as short stature, microcephaly, and progressive symptoms including rapid aging, hearing and vision loss, and mobility impairments. It emphasizes the significant challenges faced by affected families, including substantial financial burdens related to medical care, adaptive equipment, and therapies, and underscores the importance of raising awareness to support research, improve access to care, and foster understanding for those impacted by this devastating disorder. The resolution aims to recognize the strength of affected families and encourage continued efforts in research, education, and advocacy, with a final directive to transmit a copy of the resolution to Governor Hochul.

https://www.nysenate.gov/legislation/bills/2025/K149