LEGISLATIVE RESOLUTION memorializing Governor Andrew M. Cuomo to
proclaim June 10, 2012, 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 10, 2012, 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 disease that affects the autonomic and
sensory nervous systems of children from birth; and
WHEREAS, This special day is also known as the 27th Annual FD Day
Conference presented by the Dysautonomia Foundation, Inc. and the Dysau-
tonomia Center of New York University; festivities will be held at New
York University's Langone Medical Center; and
WHEREAS, It is estimated that one in 27 individuals of Eastern Europe-
an Jewish ancestry is a carrier of the gene for Familial Dysautonomia;
New York has the highest concentrations of FD patients in the United
States; and
WHEREAS, The most striking symptoms of Familial Dysautonomia are
reduced sensitivity to pain and temperature, and the inability to
produce tears; it affects every major system of the body, causing severe
respiratory, cardiac, orthopedic, digestive, renal and vision problems;
and
WHEREAS, Children with Familial Dysautonomia lack the most basic
reflexes and instincts resulting in an inability for their bodies to
function normally; and
WHEREAS, Children affected by Familial Dysautonomia cannot control
their blood pressure or heart rate; they lack the ability to suck at
birth and the ability to swallow properly and are at a greater risk of
developing pneumonia; and
WHEREAS, Familial Dysautonomia was once thought of as a fatal child-
hood disease with most children expected to live, on average, only to
five years of age; advances in treatment have dramatically extended life
expectancy, but children with Familial Dysautonomia still suffer from
chronic and often debilitating symptoms that prevent them from leading
normal lives; and
WHEREAS, Currently, the average lifespan of the Familial Dysautonomia
population is approximately 15 years; the major causes of death are the
result of pulmonary complications or sudden death due to autonomic
instability; and
WHEREAS, Due to medical advances, it is projected that babies born
with Familial Dysautonomia within the last five years will have a 50%
chance of surviving to 40 years of age; and
WHEREAS, At present, there is no cure for Familial Dysautonomia;
treatments are supportive and preventative; and
WHEREAS, Supportive therapies for Familial Dysautonomia include medi-
cations to maintain and regulate cardiovascular, respiratory, and
gastrointestinal function; surgical interventions include fundoplica-
tion, gastrostomy, spinal fusion, and tear duct cautery; and
WHEREAS, General population genetic screening is now available; such
screening can significantly reduce the frequency of new cases of Fami-
lial Dysautonomia; 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 to promote screening and to support
the patients as well as their families; now, therefore, be it
RESOLVED, That this Legislative Body pause in its deliberations to
memorialize Governor Andrew M. Cuomo to proclaim June 10, 2012, 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 to David Bren-
ner, Executive Director, Dysautonomia Foundation, Inc.