LEGISLATIVE RESOLUTION memorializing Governor Andrew M. Cuomo to
proclaim Sunday, 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 Sunday, 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 disease that affects the autonomic and
sensory nervous systems of children from birth; and
WHEREAS, This special day is known as the 28th Annual FD Day Confer-
ence presented by the Dysautonomia Foundation, Inc., and the Dysautono-
mia 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 concentration 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, cardiovascular, orthopedic, digestive, renal and vision
problems; and
WHEREAS, People with Familial Dysautonomia lack the most basic
reflexes and neurological responses, resulting in an inability of their
bodies to function normally, often requiring emergency hospitalizations;
and
WHEREAS, People affected by Familial Dysautonomia cannot control their
blood pressure or heart rate; they 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 age of the Familial Dysautonomia popu-
lation is approximately 16 years; the major causes of death are the
result of pulmonary complications or 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 Sunday, June 2, 2013,
as Familial 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 School of Medicine;
and David Brenner, Executive Director, Dysautonomia Foundation, Inc.