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J01640 Summary:

BILL NOJ01640
 
SAME ASNo Same As
 
SPONSORWALCZYK
 
COSPNSR
 
MLTSPNSR
 
 
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J01640 Text:

 
Senate Resolution No. 1640
 
BY: Senator WALCZYK
 
        MEMORIALIZING  Governor  Kathy  Hochul to proclaim
        April 2026, as TAR Syndrome Awareness Month  in  the
        State of New York
 
  WHEREAS,  The  State  of  New  York takes great pride in recognizing
months of awareness for significant medical  conditions  with  hopes  of
increasing  education  as well as supporting research and improved care;
and
 
  WHEREAS, This  Legislative  Body  is  justly  proud  to  memorialize
Governor  Kathy Hochul to proclaim April 2026, as TAR Syndrome Awareness
Month in the State of New York; and
 
  WHEREAS, Thrombocytopenia-Absent Radius (TAR)  Syndrome  is  a  rare
congenital  condition  characterized  by  thrombocytopenia (low platelet
counts) and bilateral absence of  the  radius  bones  in  the  forearms,
typically  with  the  presence  of  thumbs,  and  may include additional
medical complexities; and
 
  WHEREAS, Thrombocytopenia prevents normal blood clotting,  resulting
in  easy  bruising  and  frequent  nosebleeds,  with  the  potential for
life-threatening episodes of severe bleeding  in  the  brain  and  other
organs; and
 
  WHEREAS,  TAR Syndrome may involve lifelong hematologic, orthopedic,
and functional implications that  require  ongoing  medical  monitoring,
coordinated  care,  and adaptive supports to promote health, safety, and
independence; and
 
  WHEREAS,   Access   to   appropriate   medical    services-including
hematologic monitoring, bleeding-risk management, orthopedic care, early
intervention, and specialty services-can be lifesaving and is critically
important  to  the  long-term  stability  of individuals living with TAR
Syndrome; and
 
  WHEREAS, Thrombocytopenia usually appears during infancy and becomes
less severe over time, with platelet levels often normalizing  in  later
childhood and into adulthood; and
 
  WHEREAS,  The  physical  findings  and severity of TAR syndrome vary
among affected individuals and can include skeletal abnormalities of the
arms, legs, or hips, as well  as  heart  defects,  kidney  defects,  and
difficulty digesting cows milk; and
 
  WHEREAS,  Intellectual  development  is usually normal and long-term
prognosis is positive in children with TAR who  survive  the  first  few
years of life; and
 
  WHEREAS,  During this month, it is important to educate others about
TAR syndrome and support those affected with  this  disorder  and  their
families,   as   well   as   promote   continued  medical  research  and
advancements; and
 
  WHEREAS, The State of New York affirms the  principles  of  dignity,
equality,  and  non-discrimination  consistent  with  broadly recognized
human rights standards,  including  those  reflected  in  the  Universal
Declaration of Human Rights; and
 
  WHEREAS, Individuals living with TAR Syndrome may be protected under
federal  and  state  disability and civil-rights statutes, and continued
public awareness, accessibility efforts, and faithful implementation  of
these  protections  are  essential  to  ensuring  equal  opportunity  in
education,  employment,  housing,  healthcare,  and   participation   in
community life; and
 
  WHEREAS,  Individuals  and families affected by TAR Syndrome benefit
from access to comprehensive healthcare services, accessible  employment
opportunities,   safe   and  stable  housing,  adequate  nutrition,  and
supportive community services necessary to thrive within  the  State  of
New York; and
 
  WHEREAS,   In   recognition   of   the   financial,   physical,  and
psychological impact that TAR Syndrome has  on  those  affected,  it  is
incumbent  of  the  citizens  of  the  State  of New York to support the
courageous individuals living and coping  with  the  condition,  and  to
advocate for life-saving treatments and research; and
 
  WHEREAS,  It  is the sense of this Legislative Body to recognize the
tireless advocates and healthcare providers who spend so much  of  their
time  and  resources  battling  this syndrome that affects so many; now,
therefore, be it
 
  RESOLVED, That this Legislative Body pause in its  deliberations  to
memorialize  Governor  Kathy  Hochul  to  proclaim  April  2026,  as TAR
Syndrome Awareness Month in the State of New York; 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.
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