Nephrotic Syndrome Awareness Day

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.