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.