Bill Text: NY K00196 | 2023-2024 | General Assembly | Introduced

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Bill Title: Memorializing Governor Kathy Hochul to proclaim March 15, 2023, as Morquio A Syndrome Awareness Day in the State of New York

Spectrum: Moderate Partisan Bill (Republican 4-1)

Status: (Passed) 2023-03-16 - adopted [K00196 Detail]

Download: New_York-2023-K00196-Introduced.html

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Assembly Resolution No. 196

BY: M. of A. Reilly

        MEMORIALIZING  Governor  Kathy  Hochul to proclaim
        March 15, 2023, as Morquio A Syndrome Awareness  Day
        in the State of New York

  WHEREAS,  It  is  the  custom  of this Legislative Body to recognize
official days that are  set  aside  to  increase  awareness  of  serious
illnesses 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, this  Legislative  Body  is  justly  proud  to
memorialize Governor Kathy Hochul to proclaim March 15, 2023, as Morquio
A syndrome Awareness Day in the State of New York; and

  WHEREAS,        Morquio    A    syndrome,    a   classification   of
Mucopolysaccharidosis (MPS) disorders, is a  rare,  progressive  genetic
disorder that affects approximately 1 in every 300,000 births; and

  WHEREAS,  Individuals  affected by Morquio A syndrome do not have or
do not produce enough enzymes that break down sugar chains naturally  in
the  body;  the buildup of sugars negatively impacts the skeletal system
and eventually the organ systems; and

  WHEREAS, The condition of Morquio A syndrome worsens over  time  and
there is no cure; and

  WHEREAS,  There  is  only  one FDA approved medication for Morquio A
syndrome, which is a synthetic version of the enzyme that patients lack;
it is a four-hour weekly infusion that helps slow the rapid  progression
of the disease; and

  WHEREAS,  Patients  going  through  treatment for Morquio A syndrome
often need to see numerous specialty doctors frequently,  and  may  also
require many services for school age children; and

  WHEREAS,  Reed  Rinon is a six-year-old from Staten Island, New York
who lives with Morquio A syndrome; and

  WHEREAS, Diagnosed at three-years-old,  after  being  worked  on  by
every  specialist  possible,  Reed  Rinon  now receives the FDA approved
medication every Tuesday in his chest port wall and has to wear  a  back
brace each night to help slow the curvature of his spine, in addition to
wearing hearing aids daily; and

  WHEREAS,  The experiences young Reed Rinon has had to go through has
taken an emotional toll on his family, and he is scheduled for bilateral
hip, bilateral knee, bilateral ankle, and growth plate surgery  to  help
further treat his condition; and

  WHEREAS,  There are others like Reed Rinon who struggle every day to
live comfortably with Morquio A syndrome, and March 15th should  inspire
New  York  citizens to learn and educate others about this life-altering
condition; 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; now, therefore, be it

  RESOLVED,  That  this Legislative Body pause in its deliberations to
memorialize Governor Kathy Hochul to proclaim March 15, 2023, as Morquio
A Syndrome Awareness Day 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.