FSGS AWARENESS DAY

104th Regular Session Introduced by Mattie Hunter

Designates June 9, 2026 as FSGS Awareness Day to promote awareness, early detection, and access to care and treatments for FSGS in Illinois.

Resolution Adopted

Summary of SR0757 (104th General Assembly, Illinois) – FSGS Awareness Day

Purpose and Intent

Designates a state recognition day to raise awareness of focal segmental glomerulosclerosis (FSGS), a rare kidney disease.

Aims to promote early detection, support for patients and families, and advocacy for improved diagnosis and access to future treatments.

Highlights the broader impact of FSGS on individuals, families, and Illinois’ healthcare system, and notes ongoing research and clinical trial activity.

Key Provisions

Declares June 9, 2026, as FSGS Awareness Day in the State of Illinois.

Encourages awareness efforts to highlight:

The disease burden of FSGS, including the risk of progression to kidney failure and the need for dialysis or transplantation.
The diagnostic challenges and delays patients often face, including a lengthy “diagnostic odyssey.”
The disproportionate impact on minority populations, particularly African Americans, and the role of APOL1 high-risk variants in increasing risk.
The ongoing research landscape, including potential new therapies and the PARASOL (Proteinuria and GFR as Clinical Trial Endpoints in FSGS) initiative.
The importance of access to nephrology care and timely diagnosis.

Who/What Would Be Affected

The State of Illinois would recognize the day officially, with likely engagement by state agencies, healthcare providers, patient organizations, and public health advocates.

Stakeholders potentially involved or engaged include patients and families affected by FSGS, NephCure and similar advocacy groups, clinicians specializing in nephrology and rare kidney diseases, researchers, pharmaceutical/biotech companies involved in FSGS trials, and public health entities.

Procedural and Timeline Aspects

Bill designation: Senate Resolution.

Effective date of recognition: June 9, 2026 (FSGS Awareness Day).

Action history indicates standard Senate resolution process:

Filed with Secretary (May 5, 2026)
Referred to Assignments (May 5, 2026)
Assigned to Public Health (May 12, 2026)

Sponsorship: Principal sponsor not listed in the summary, with co-sponsor Mattie Hunter.

Context and Rationale

Provides public visibility to FSGS, a leading cause of chronic kidney disease and kidney failure, particularly impactful in adult populations and among minorities.

Emphasizes economic and health system burdens (e.g., costs of dialysis/transplantation, indirect costs, and disparities in care).

Acknowledges ongoing clinical advances, including the anticipated first FDA-approved therapy around 2026 and research efforts to validate trial endpoints (e.g., PARASOL).

Notes for Readers

This is a commemorative/resolution measure rather than substantive policy changes or funding allocations.

The resolution seeks to raise awareness and encourage broad engagement rather than create enforceable mandates.

If you represent a patient group or healthcare provider, this day could be an opportunity for outreach, education, and collaboration on improving FSGS diagnosis and treatment access in Illinois.