LEGISLATIVE RESOLUTION memorializing Governor Andrew M. Cuomo to
proclaim June 8, 2014, 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 8, 2014, 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 five 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 this Legislative Body pause in its deliberations to
memorialize Governor Andrew M. Cuomo to proclaim June 8, 2014, as Fami-
lial Dysautonomia Awareness Day in the State of New York; and be it
further
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 David Brenner,
Executive Director, Dysautonomia Foundation, Inc.