SR 129 — A resolution to recognize June 9, 2026, as Focal Segmental Glomerulosclerosis (FSGS) Day.

SR-129,MICHIGAN As Adopted by Senate, June 10, 2026 SENATE RESOLUTIONSenate NO.Resolution No.

129 Offered by Senators Hertel and Santana offeredA theRESOLUTION followingTO resolution:RECOGNIZE JUNE 9,2026 , AS FOCAL SEGMENTAL GLOMERULOSCLEROSIS (FSGS) DAY WHEREAS, Approximately 1 in 7 American adults have chronic kidney disease.

A resolution to recognize June 9, 2026, as Focal Segmental Glomerulosclerosis (FSGS) Day.

Whereas, Approximately 1 in 7 American adults have chronic kidney disease.

and Whereas,WHEREAS, FSGS is a condition referring to the scarring in the kidneys, often leading to a difficult journey that can result in kidney failure requiring dialysis, transplant, and often cycles of remissions and relapse;

and Whereas,WHEREAS, Fifty percent of patients with FSGS require dialysis or a kidney transplant within 5-10 years of their diagnosis;

and Whereas,WHEREAS, FSGS is a severe disease because it often progresses rapidly to kidney failure.

For patients with primary FSGS who FSGS Day 26_SR129_AA_1 vx9jui 1 receive a kidney transplant, FSGS can recur in their transplanted kidney up to 50 percent of the time;

and Whereas,WHEREAS, FSGS can be diagnosed at any age, but is most commonly diagnosed in adults rather than in children and most prevalent in adults over 45 years old;

and Whereas,WHEREAS, This disease is a burden on our healthcare system, with a 2019 study estimating that FSGS costs Medicaid, Medicare, and private health insurance about $2 billion annually in direct medical costs, not including indirect and quality of life costs;

and Whereas,WHEREAS, FSGS is a significant burden not just to the health and lives of patients and their families, but also incurs great challenges for the healthcare system and healthcare financing of Michigan;

and Whereas,WHEREAS, According to the RaDaR Database, rare kidney diseases, like FSGS, make up just 5-10 percent of chronic kidney disease patients but account for approximately 30 percent of kidney failure;

and Whereas,WHEREAS, Many patients face delays in being diagnosed with FSGS, due both to the difficulty of the rare disease diagnostic odyssey averaging 5-7 years and challenges in accessing nephrology care that specializes in rare kidney diseases as there is currently a shortage in the United States;

and Whereas,WHEREAS, Certain variants of the APOL1 gene significantly increase the risk of developing FSGS and other kidney diseases;

and Whereas,WHEREAS,These These high-risk variants are found almost exclusively in individuals of African ancestry.

FSGS Day 26_SR129_AA_1 vx9jui 1 and Whereas,WHEREAS, There is new hope for FSGS patients, with clinical trials underway for products that may delay progression of FSGS and the onset of kidney disease, including the potential for FDA approved therapies in the near future, and significant progress being made by scientists, regulators, patient groups, and industry to validate proteinuria as an indicator of improvement in patients;

and Whereas,WHEREAS, Patients, families, advocacy organizations like NephCure, healthcare providers, industry, and researchers are working tirelessly to raise awareness, promote early detection, and develop new innovative therapies for FSGS and other rare kidney disease patients living in our state;

now, therefore, be it ResolvedRESOLVED byBY theTHE Senate,SENATE, That the members of this legislative body recognize June 9, 2026, as Focal Segmental Glomerulosclerosis (FSGS) Day;

and be it further Resolved,RESOLVED, That FSGS Day is designated to raise awareness, provide support and inspiration to patients and families struggling with the disease, and promote the efforts needed for better diagnosis and access to future treatments that can transform the course of the disease.

FSGSAdopted Dayby 26_SR129_AA_1the vx9juiSenate, June 10, 2026.

Secretary of the Senate