2013-J2352
LEGISLATIVE RESOLUTION memorializing Governor Andrew M. Cuomo to
proclaim October 2013, as Rett 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 issues 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, it is the sense of this Legislative Body to memori-
alize Governor Andrew M. Cuomo to proclaim October 2013, as Rett
Syndrome Awareness Month in the State of New York; and
WHEREAS, Rett Syndrome is a devastating neurodevelopmental disorder
caused by a sporadic, genetic mutation of the MECP2 gene on the X chro-
mosome and mainly affects females; and
WHEREAS, Rett Syndrome is a unique developmental disorder that is
first recognized in infancy and seen almost always in girls, but can be
rarely seen in boys; and
WHEREAS, The American medical community did not recognize Rett
Syndrome until 1983; and
WHEREAS, Rett Syndrome is one of four diseases primarily affecting
females; and
WHEREAS, Rett Syndrome occurs worldwide in 1 in every 10,000 to 23,000
female births; and
WHEREAS, Rett Syndrome is the leading genetic cause of impairment in
girls and is caused by mutations in the gene MECP2; 95% of girls diag-
nosed with Rett Syndrome in the United States have this mutation; it is
the only autism spectrum disorder with a known genetic cause; and
WHEREAS, This disorder does not just affect those living in the United
States, it also affects families worldwide; it does not discriminate as
to race, color or creed, social or economic class; and
WHEREAS, Girls are generally born healthy then they begin to show
signs of regression or stagnation of milestones that would otherwise be
routinely accomplished; and
WHEREAS, Rett Syndrome causes problems in brain function that are
responsible for cognitive, sensory, emotional, motor and autonomic func-
tion; these can include learning, speech, sensory sensations, mood,
movement, breathing, cardiac function, and even chewing, swallowing, and
digestion; and
WHEREAS, Children afflicted with Rett Syndrome lose their ability to
speak and walk; there is loss of hand control, seizures and scoliosis;
and
WHEREAS, 20% of all girls and women may never walk at all, and about
one-fourth of those who do walk will lose the ability; and
WHEREAS, 80% of those affected by Rett Syndrome will experience at
least one seizure in their life and approximately 90% are at risk for
some degree of curvature of the spine; and
WHEREAS, The most severe handicap that a child with Rett Syndrome has
is apraxia, which means that the child has the will to move but is
unable to carry through with that movement; and
WHEREAS, Dedicated scientists and researchers in the United States and
around the world are working to find treatments now, in advance to find-
ing a cure; and
WHEREAS, We must continue our efforts in raising awareness in the
medical community, therapists, teachers, caregivers, our elected repre-
sentatives, and the general public as well; and
WHEREAS, Moreover, we must have funding available for researchers who
are dedicated to finding a cure for Rett Syndrome, and lend our support
in this shared mission to combat and some day eradicate this disabling
syndrome; now, therefore, be it
RESOLVED, That this Legislative Body pause in its deliberations to
memorialize Governor Andrew M. Cuomo to proclaim October 2013, as Rett
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.