Assembly Resolution No. 149

BY: M. of A. Jones

MEMORIALIZING Governor Kathy Hochul to proclaim
October 2025 as Cockayne Syndrome Awareness Month in
the State of New York

WHEREAS, It is the custom of this Legislative Body to recognize
official months that are set aside to increase awareness of serious
health issues that affect the lives of citizens of New York State; and

WHEREAS, Attendant to such concern, and in full accord with its
long-standing traditions, it is the sense of this Legislative Body to
memorialize Governor Kathy Hochul to proclaim October 2025 as Cockayne
Syndrome Awareness Month in the State of New York; and

WHEREAS, Cockayne Syndrome (CS) is a rare and terminal
neurodegenerative disorder caused by mutations in the ERCC6 or ERCC8
genes, classified as one of more than 50 types of leukodystrophy, with
incidences in approximately two to three newborns per million in the
United States and Eastern Europe; and

WHEREAS, Cockayne Syndrome is a terminal autosomal recessive genetic
disorder with a life expectancy of 12 to 20 years, profoundly affecting
children and their families; and

WHEREAS, Individuals with CS are characterized by certain physical
traits, including short stature, microcephaly, sunken eyes, a beaked
nose, and prominent ears, as well as progressive symptoms such as rapid
aging, hearing and vision loss, speech and mobility impairment, and
difficulties with swallowing; and

WHEREAS, Children with CS face additional challenges, including
developmental delays, joint pain, hip abnormalities,
thermodysregulation, elevated liver enzymes, and extreme sensitivity to
sunlight, while also being recognized for their uniquely jovial and
joyful demeanor; and

WHEREAS, Many families affected by CS experience immense financial
burdens due to the high costs of adaptive supplies and equipment,
medical travel, home and vehicle modifications, and therapies such as
physical, occupational, speech, aquatic, and hippotherapy, which are
essential for symptom management but often not covered by insurance; and

WHEREAS, Raising awareness of Cockayne Syndrome is critical to
supporting research, improving access to care, and fostering
understanding and compassion for those affected by this devastating
disorder; and

WHEREAS, New York State has previously proclaimed October as
Cockayne Syndrome Awareness Month to bring attention to this rare
disease and the challenges faced by affected families; now, therefore,
be it

RESOLVED, That this Legislative Body pause in its deliberations to
memorialize Governor Kathy Hochul to proclaim October 2025 as Cockayne

Syndrome Awareness Month in the State of New York, to recognize the
strength and resilience of families affected by this disorder, and to
encourage continued efforts to support research, education, and
advocacy; and be it further

RESOLVED, That a copy of this resolution, suitably engrossed, be
transmitted to The Honorable Kathy Hochul, Governor of the State of New
York.