2009-K301

Memorializing Governor David A. Paterson to proclaim May 16, 2009, as Angelman Syndrome Awareness Day in the State of New York

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2009-K301


LEGISLATIVE RESOLUTION memorializing Governor David A. Paterson to
proclaim May 16, 2009, as Angelman 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 issues that
affect the lives of citizens of New York State; and
WHEREAS, Attendant to such concern, and fully in accord with its long-
standing traditions, it is the sense of this Legislative Body to memori-
alize Governor David A. Paterson to proclaim May 16, 2009, as Angelman
Syndrome Awareness Day in the State of New York; numerous walk-a-thons
will be held to increase awareness of this disease, and for the second
time, the State of New York, will host its own ASA walk-a-thon in
Buffalo, New York, in conjunction with the national observance; and
WHEREAS, Angelman syndrome is a chromosomal (gene-linked) disease that
causes neurological problems; the physician Harold Angelman first iden-
tified the syndrome in 1965, when he described several children in his
practice as having "flat heads, jerky movements, protruding tongues, and
bouts of laughter"; and
WHEREAS, Infants with Angelman syndrome appear normal at birth, but
begin to have feeding problems at 1-2 months and noticeable develop-
mental delays by 6 to 12 months; seizures may often begin before the age
of three; and
WHEREAS, Speech impairment is pronounced, with little to no use of
words; the syndrome is also characterized by hyperactivity, small head
size, and movement and balance disorders that can cause severe func-
tional deficits; and
WHEREAS, Angelman syndrome is the result of the deletion or inacti-
vation of a particular series of genes that regulate a protein called
ubiquitin (UBE3A) on chromosome 15q11-13; and
WHEREAS, There are less than 1000 people in the United States and
Canada who have been identified with Angelman syndrome; the majority of
cases are inherited via maternal transmission of an abnormal chromosome,
but others appear to be the result of genetic mutations from unknown
causes; and
WHEREAS, There is no standard course of treatment for Angelman
syndrome; educational and behavioral interventions are usually effective
in the areas of communication, schooling, sleep disturbances, and gener-
al behavior; physical and occupational therapies, speech and language
interventions, behavior modification, and parental training are also
helpful; and
WHEREAS, Most individuals with Angelman syndrome will have severe
developmental delays, speech limitations, and problems with walking and
staying upright; early diagnosis and tailored interventions and thera-
pies help improve quality of life; and
WHEREAS, The National Institute of Neurological Disorders and Strokes
(NINDS) supports and conducts research on neurogenetic disorders such as
Angelman syndrome, to develop techniques to diagnose, treat, prevent,
and ultimately cure them; and
WHEREAS, It is imperative that the education and training of health
professionals regarding Angelman syndrome be expanded and that there be
greater public awareness of this serious health problem; while there has
been increased activity at the state, local and national levels, more
must be done to support patients and their families; now, therefore, be
it

RESOLVED, That this Legislative Body pause in its deliberations to
memorialize Governor David A. Paterson to proclaim May 16, 2009, as
Angelman Syndrome Awareness Day in New York State; and be it further
RESOLVED, That copies of this Resolution, suitably engrossed, be tran-
smitted to The Honorable David A. Paterson, Governor of the State of New
York; and the Angelman Syndrome Foundation, 3015 E. New York Street,
Suite A2265, Aurora, Illinois 60504.

actions

  • 18 / Mar / 2009
    • REFERRED TO CALENDAR
  • 19 / Mar / 2009
    • ADOPTED

Resolution Details

Law Section:
Resolutions, Legislative

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