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

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.