June 10, 2025: Focal Segmental Glomerulosclerosis (FSGS) Awareness Day

WHEREAS, approximately one in seven American adults have chronic kidney disease, and the third leading cause of chronic kidney disease is glomerulonephritis, often caused by rare kidney diseases such as Focal Segmental Glomerulosclerosis (FSGS); and,

WHEREAS, Focal Segmental Glomerulosclerosis is a condition referring to the scarring in the kidneys; which often cycles in remissions and relapse, leading to progressive kidney damage that can result in kidney failure, necessitating dialysis or transplantation; and,

WHEREAS, 50% of patients with FSGS require dialysis or a kidney transplant within 5–10 years of their diagnosis; and,

WHEREAS, FSGS is a severe disease because it often progresses rapidly to kidney failure, and even for patients with primary FSGS who receive a kidney transplant, FSGS can recur in their transplanted kidney up to 50% of the time; and,

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, 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, FSGS disproportionately impacts minority populations, including African Americans, often occurring at a rate 4–5 times higher than White Americans; and,

WHEREAS, because of certain variants of the APOL1 gene that significantly increase the risk of developing FSGS and other kidney diseases, and these high-risk variants are found almost exclusively in individuals of African ancestry, FSGS contributes to the disproportionate burden of kidney disease in Black communities; and,

WHEREAS, FSGS is a significant burden not just to the health and lives of patients and their families, and the healthcare system causing financial strains on healthcare resources in Michigan; and,

WHEREAS, there is new hope for patients with FSGS, with clinical trials underway for products that may delay the 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, 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 Michigan; and,

WHEREAS, “FSGS Awareness Day” is designated to raise awareness of FSGS, 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;

NOW, THEREFORE, I, Gretchen Whitmer, governor of Michigan, do hereby proclaim June 10, 2025, as Focal Segmental Glomerulosclerosis (FSGS) Awareness Day in Michigan.