Senate Resolution No. 2047

BY: Senator RIVERA

MEMORIALIZING Governor Kathy Hochul to proclaim
June 9, 2026, as FSGS Awareness Day in the State of
New York

WHEREAS, Chronic kidney disease affects approximately 1 in 7 adults
in the United States, and glomerulonephritis-often caused by rare kidney
diseases such as focal segmental glomerulosclerosis (FSGS)-is among its
leading causes; and

WHEREAS, FSGS is a serious and progressive disease characterized by
scarring of the kidney's filtering units, frequently resulting in
significant health complications, including kidney failure, the need for
dialysis or transplantation, and cycles of remission and relapse; and

WHEREAS, Approximately 50 percent of individuals diagnosed with FSGS
will require dialysis or a kidney transplant within 5 to 10 years; and

WHEREAS, Even following kidney transplantation, FSGS may recur in up
to 50 percent of patients, underscoring the severity and persistence of
this disease; and

WHEREAS, FSGS can affect individuals of all ages but is most
commonly diagnosed in adults, particularly those over the age of 45; and

WHEREAS, Rare kidney diseases such as FSGS represent only a small
percentage of chronic kidney disease cases, yet account for a
disproportionately high percentage of kidney failure; and

WHEREAS, Patients living with FSGS often face significant delays in
diagnosis, frequently enduring a diagnostic journey lasting several
years, compounded by limited access to specialized nephrology care; and

WHEREAS, FSGS disproportionately impacts minority populations,
including African Americans, in part due to genetic risk factors such as
variants of the APOL1 gene, contributing to longstanding health
disparities; and

WHEREAS, The burden of FSGS extends beyond individual patients and
families, placing substantial strain on healthcare systems, including
those serving the residents of the State of New York, and contributing
to significant public and private healthcare expenditures; and

WHEREAS, There is new hope for patients with FSGS, with clinical
trials underway for products that may delay progression of FSGS and the
onset of kidney disease, including the first FDA approved therapy in
April 2026, and significant progress being made by scientists,
regulators, patient groups, and industry through the PARASOL Project to
validate proteinuria as an indicator of improvement in patients; and

WHEREAS, In New York State, a diverse population and persistent
health disparities make awareness, early detection, and equitable access
to specialized care for rare kidney diseases especially critical; and

WHEREAS, New York is home to leading medical institutions,
researchers, and patient advocacy organizations working to advance
innovation, improve outcomes, and support those affected by rare kidney
diseases such as FSGS; and

WHEREAS, Promising research and clinical trials are underway that
may lead to new therapies capable of slowing disease progression and
improving quality of life for patients with FSGS; and

WHEREAS, Patients, families, healthcare providers, researchers, and
advocacy organizations-including NephCure Kidney International-are
working diligently to raise awareness, promote early diagnosis, and
expand access to effective treatments; and

WHEREAS, Designating FSGS Awareness Day will help increase public
understanding of this rare disease, support those affected, and
encourage continued investment in research and care; now, therefore, be
it

RESOLVED, That this Legislative Body pause in its deliberations to
memorialize Governor Kathy Hochul to proclaim June 9, 2026, as FSGS
Awareness Day in the State of New York, and to recognize the importance
of education, early detection, and continued research to improve
outcomes for all those affected; 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.