Resolution J494-2013

Memorializing Governor Andrew M. Cuomo to proclaim June 2, 2013, as Familial Dysautonomia Day in the State of New York

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  • Feb 28, 2013: ADOPTED
  • Feb 28, 2013: REPORTED TO CALENDAR FOR CONSIDERATION
  • Feb 13, 2013: REFERRED TO FINANCE

Text

LEGISLATIVE   RESOLUTION  memorializing  Governor  Andrew  M.  Cuomo  to
proclaim June 2, 2013, as Familial Dysautonomia  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 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 June 2, 2013, as Familial
Dysautonomia Awareness Day in the State of New York; and
  WHEREAS,  Familial  Dysautonomia,  also  known  as  FD  and  Riley-Day
Syndrome,  is  a  rare  genetic  neurological condition that affects the
sensory and autonomic nervous systems, causing severe  gastrointestinal,
cardiovascular, pulmonary, orthopedic, renal and ophthalmologic problems
that affect children from birth; and
  WHEREAS,  Children  with  Familial  Dysautonomia  lack  the most basic
reflexes and instincts such as the ability to suck at birth or to  swal-
low  properly  and  their  bodies cannot control blood pressure or heart
rate; and
  WHEREAS, It is estimated that FD primarily affects one in 27  children
of  Eastern  European Jewish descent but genetic carriers of the disease
have also been found in the general population; and
  WHEREAS, New York State has the highest concentration of  FD  patients
in  the  country  and  the  Dysautonomia Foundation, located in New York
City, operates the only FD treatment and clinical research  facility  in
the United States; and
  WHEREAS,  There  is  no cure for Familial Dysautonomia but advances in
research and treatment have dramatically extended  life  expectancy  and
babies born with Familial Dysautonomia within the last 5 years will have
a 50% chance of surviving to 40 years of age; and
  WHEREAS, While children still struggle with the life-threatening chal-
lenges brought on by FD, there are supportive therapies including surgi-
cal  interventions and medications to maintain and regulate cardiovascu-
lar, respiratory and gastrointestinal function; and
  WHEREAS, General population genetic screening is now  available  which
can significantly reduce the frequency of new cases of Familial Dysauto-
nomia; and
  WHEREAS,  It  is  imperative that there be greater public awareness of
this devastating medical condition and more must  be  done  to  increase
activity  at  the  local, state and national levels to promote screening
and support patients and their families; now, therefore, be it
  RESOLVED, That copies of this resolution, suitably engrossed, be tran-
smitted to the Honorable Andrew M. Cuomo, Governor of the State  of  New
York, the Dysautonomia Center of New York University, and to David Bren-
ner, Executive Director, Dysautonomia Foundation, Inc.

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