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

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.