Senate Resolution No. 505

BY: Senator KAPLAN

MEMORIALIZING Governor Andrew M. Cuomo to proclaim
March 27, 2019, as Nephrotic Syndrome Awareness Day
in the State of New York

WHEREAS, New York State has long been committed to shining a light
on those who are affected by rare diseases and afflictions; and

WHEREAS, It is increasingly being recognized that those who suffer
from rare diseases and syndromes are often left without a voice and
without proper access to treatments due to the lack of knowledge
regarding such diseases; and

WHEREAS, This Legislative Body is justly proud to memorialize
Governor Andrew M. Cuomo to proclaim Wednesday, March 27, 2019, as
Nephrotic Syndrome Awareness Day in the State of New York; and

WHEREAS, Nephrotic Syndrome FSGS, or Focal Segmental
Glomerulosclerosis, is a collection of symptoms stemming from kidney
damage which afflicts roughly five in every one hundred thousand
individuals; and

WHEREAS, This syndrome can be caused by a variety of forms of kidney
damage and can have lifelong consequences for the person with Nephrotic
Syndrome, including multiple hospitalizations, a rigorous medical
routine, the need for kidney transplants and, unfortunately, even death;
and

WHEREAS, Each year 8,000 Americans are diagnosed with Nephrotic
Syndrome, contributing to the millions currently living with some form
of chronic kidney disease; and

WHEREAS, It is estimated that within the next 10 years, one in two
people in the United States will be touched by kidney disease; and

WHEREAS, Under the able leadership of Parent Advocate and Regional
Legislative Coordinator Marlene Botta, NephCure Kidney International has
made great strides in accelerating treatments for Nephrotic Syndrome and
FSGS patients; and

WHEREAS, Recognizing the importance of and the impact which
increases awareness can directly affect the lives of individuals living
with Nephrotic Syndrome; in recognizing this day, the State of New York
strives to increase the general knowledge of this illness, allowing more
resources to be directed to finding treatments and a cure; 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 support much needed
Nephrotic Syndrome research; now, therefore, be it

RESOLVED, That this Legislative Body pause in its deliberations to
memorialize Governor Andrew M. Cuomo to proclaim March 27, 2019, as

Nephrotic Syndrome Awareness Day in the State of New York; and be it
further

RESOLVED, That a copy of this Resolution, suitably engrossed, be
transmitted to The Honorable Andrew M. Cuomo, Governor of the State of
New York.