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.