Bill Text: NY J01833 | 2023-2024 | General Assembly | Introduced

New York Senate Resolution 1833

Introduced

Bill Title: Memorializing Governor Kathy Hochul to proclaim March 2024, as Alport Syndrome Awareness Month in the State of New York

Spectrum: Partisan Bill (Democrat 1-0)

Status: (Passed) 2024-02-27 - ADOPTED [J01833 Detail]

Download: New_York-2023-J01833-Introduced.html


Senate Resolution No. 1833

BY: Senator RIVERA

        MEMORIALIZING  Governor  Kathy  Hochul to proclaim
        March 2024, as Alport Syndrome  Awareness  Month  in
        the State of New York

  WHEREAS,  The  State  of  New  York takes great pride in recognizing
serious genetic diseases by  proclaiming  official  months  to  increase
awareness of such concerns, which affect thousands of New Yorkers; and

  WHEREAS,  It  is  the  sense of this Legislative Body to memorialize
Governor Kathy Hochul to proclaim March 2024, as Alport  Syndrome  Month
in the State of New York; and

  WHEREAS, Since 2014, this month-long campaign has aimed to spotlight
this  rare,  genetic  kidney  disease  during  National Kidney Awareness
Month; and

  WHEREAS, Alport Syndrome is a rare genetic disorder characterized by
progressive kidney disease and abnormalities of the inner  ear  and  the
eye; and

  WHEREAS,  The  disease  we  now  know  as  Alport Syndrome was first
described in the British medical literature in the early  years  of  the
20th Century; in 1927, Dr. Cecil Alport published a paper describing the
association  of kidney disease and deafness in affected individuals, and
in 1961, the disorder was named after Dr. Alport; and

  WHEREAS, There are four  genetic  types:  X-linked  Alport  syndrome
(XLAS);  autosomal  recessive Alport syndrome (ARAS); autosomal dominant
Alport syndrome (ADAS); and digenic Alport syndrome  (a  combination  of
Alport  mutations);  disease progression can vary based on genetic type;
and

  WHEREAS, The hallmark of the disease is the presence of blood in the
urine (hematuria) early in life,  with  progressive  decline  in  kidney
function  (kidney  insufficiency);  there  is  currently no FDA-approved
treatment to delay or stop renal function decline as a result of  Alport
syndrome; and

  WHEREAS,  Alport Syndrome is often discussed with a related disorder
known as  thin  basement  membrane  nephropathy  (TBMN),  in  which  the
predominant  pathologic  abnormality  is thinning of glomerular basement
membranes; and

  WHEREAS, Alport Syndrome is estimated to affect  less  than  200,000
people  in  the general population in the United States making it a rare
disease; while no exact prevalence data is available,  increased  access
to   genetic  testing  allows  more  patients  to  receive  a  confirmed
diagnosis; and

  WHEREAS, It is imperative that there be greater  awareness  of  this
serious  health condition, and more must be done to increase activity at
local, State and National levels; now, therefore, be it

  RESOLVED, That this Legislative Body pause in its  deliberations  to
memorialize  Governor  Kathy  Hochul  to  proclaim March 2024, as Alport
Syndrome Awareness Month in the State of  New  York,  and  to  urge  the
citizens of this great Empire State to learn about the causes, symptoms,
diagnoses and treatments for Alport Syndrome; and be it further

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