Senate Resolution No. 2112

BY: Senator ROLISON

memorializing Governor Kathy Hochul to proclaim
May 16, 2026, as Congenital Disorders of
Glycosylation (CDG) Awareness Day in the State of
New York

WHEREAS, The State of New York takes great pride in recognizing days
of awareness of serious medical conditions with hopes of increasing
education as well as finding treatments and cures; and

WHEREAS, Attendant to such concern, and in full accord with its
long-standing traditions, this Legislative Body is justly proud to
memorialize Governor Kathy Hochul to proclaim May 16, 2026, as
Congenital Disorders of Glycosylation (CDG) Awareness Day in the State
of New York, in conjunction with World Congenital Disorders of
Glycosylation Awareness Day; and

WHEREAS, Congenital Disorders of Glycosylation (CDG) are a group of
rare metabolic disorders that affect normal organ development and the
neurological system, leaving children, adolescents, and adults impaired
with significant physical and developmental disability; and

WHEREAS, CDGs have lifelong impacts on individuals with these
disorders, and symptoms range from mild to severe; effects of CDGs
include low muscle tone, failure to thrive due to slow growth,
developmental delay, liver disease, bleeding and abnormal blood
clotting, seizures, high susceptibility to illness, and cerebellar
hypoplasia; and

WHEREAS, Individuals with CDGs often spend a significant amount of
time in hospitals and seeing doctors and specialists, and caregivers
dedicate countless hours to caring for, loving, and supporting
individuals with CDGs; and

WHEREAS, CDGs are severely under-diagnosed and misdiagnosed, with
only approximately 1,200 cases diagnosed with CDG globally, and only
approximately 350 cases currently reported in the United States;
PMM2-CDG is the most commonly diagnosed CDG, with roughly 900 patients
identified worldwide; and

WHEREAS, Although most forms of CDGs do not yet have a treatment or
cure, early diagnosis of CDGs is important to ensure timely management
of clinical complications, genetic counseling, and available treatment
and therapeutic remedies; and

WHEREAS, Lack of public awareness and visibility of CDGs contributes
to under-diagnosis and difficulties in assessing specialized services
and proper rehabilitation and support; and

WHEREAS, CDG Awareness Day provides the opportunity for families and
patients affected by these conditions to share their experiences and
knowledge with the public, so that we all may be made more aware of how
CDGs impact the lives of many individuals; and

WHEREAS, It is imperative that there be greater awareness of this
serious health condition, and more must be done to increase activity at
the local, State, and National levels to increase awareness, spread
education, improve diagnosis, and work towards effective treatment; now,
therefore, be it

RESOLVED, That this Legislative Body pause in its deliberations to
memorialize Governor Kathy Hochul to proclaim May 16, 2026, as
Congenital Disorders of Glycosylation (CDG) Awareness Day; 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.