LEGISLATIVE RESOLUTION memorializing Governor Andrew M. Cuomo to
proclaim May 2016, as Sanfilippo Syndrome Awareness Month in the State
of New York

WHEREAS, It is the custom of this Legislative Body to recognize official
months 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 memorial-
ize Governor Andrew M. Cuomo to proclaim May 2016, as Sanfilippo
Syndrome Awareness Month in the State of New York; and
WHEREAS, Sanfilippo syndrome is a rare genetic disorder caused by a
disruption in the body's metabolism; children afflicted with this condi-
tion are missing or are deficient in the enzyme which breaks down the
Mucopolysaccharides, molecules responsible for building connective
tissues; instead, the body stores these molecules in the cells, causing
much damage; and
WHEREAS, Sanfilippo syndrome is a progressive disorder, meaning that
at birth, children appear typical and do not show signs of any illness;
as the disease progresses, those afflicted experience seizures, joint
stiffness, upper respiratory infection, hearing loss, dementia, hyperac-
tivity, partial paralysis, blindness, and eventually, death; and
WHEREAS, First described in 1963 by Dr. Sylvester Sanfilippo, this
affliction is considered rare, with an occurrence of one in every 70,000
births; and
WHEREAS, The Team Sanfilippo Foundation is a non-profit medical
research organization; its mission is to find potential therapies that
can be tested clinically; this internationally supported group is work-
ing to advance research and education to improve the quality of life for
those young people affected by this disorder and ultimately find a cure;
and
WHEREAS, Recent scientific advancements in the areas of enzyme
replacement, gene therapy, and small molecules have led to the initi-
ation of clinical programs for Sanfilippo syndrome and other lysosomal
storage diseases; a new focus is being placed on the development of
combined therapies to give children the best possible treatment strate-
gies; and
WHEREAS, It is imperative that there be greater public awareness of
this serious health issue, 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 Andrew M. Cuomo to proclaim May 2016, as Sanfilippo
Syndrome Awareness Month in the State of New York; and be it further
RESOLVED, That a copy of this Resolution, suitably engrossed, be tran-
smitted to The Honorable Andrew M. Cuomo, Governor of the State of New
York.