SR844: SR844 FSGS Awareness Day; recognize June 9, 2026

26 LC 129 1237 Senate Resolution 844 By: Senators Albers of the 56th, Kirkpatrick of the 32nd, Watson of the 1st, Still of the 48th, Bearden of the 30th and others A RESOLUTION Recognizing June 9, 2026, as FSGS Awareness Day in Georgia; and for other purposes.1 WHEREAS, approximately 1 in 7 American adults have chronic kidn ey disease, and the2 third leading cause of chronic kidney disease is glomerulonephr itis, often caused by rare3 kidney diseases such as focal segmental glomerulosclerosis (FSGS); and4 WHEREAS, focal segmental glomerulosclerosis is a condition referring to the scarring in the5 kidneys, often leading to a difficult journey that can in many cases result in kidney failure,6 requiring dialysis, transplant, and often cycles of remissions and relapse; and7 WHEREAS, 50 percent of patients with FSGS require dialysis or a kidney transplant within8 5–10 years of their diagnosis; and9 WHEREAS, FSGS is a severe disease because it often progresses rapidly to kidney failure10 and even for patients with primary FSGS who receive a kidney transplant, FSGS can recur11 in their transplanted kidney up to 50 percent of the time; and12 WHEREAS, FSGS can be diagnosed at any age, but is most commonly diagnosed in adults13 rather than in children and most prevalent in adults over 45 years old; and14 S. R. 844 - 1 - 26 LC 129 1237 WHEREAS, FSGS is a burden on our healthcare system, with a 2019 study estimating that15 FSGS costs Medicaid, Medicare, and private health insurance about $2 billion annually in16 direct medical costs, not including indirect and quality of life costs; and17 WHEREAS, according to the RaDaR Database, rare kidney diseases like FSGS make up just18 5-10 percent of chronic kidney disease patients but account for approximately 30 percent of19 kidney failures; and20 WHEREAS, many patients face delays in being diagnosed with FSGS , due both to the21 difficulty of the rare disease diagnostic odyssey averaging 5-7 years and challenges in22 accessing nephrology care that specializes in rare kidney disea ses as there is currently a23 shortage in the United States; and 24 WHEREAS, FSGS disproportionately impacts minority populations, including African25 Americans, often occurring at a rate 4–5 times higher than white Americans; and 26 WHEREAS, because of certain variants of the APOL1 gene that significantly increase the27 risk of developing FSGS and other kidney diseases, and these high-risk variants are found28 almost exclusively in individuals of African ancestry, FSGS con tributes to the29 disproportionate burden of kidney disease in Black communities; and30 WHEREAS, FSGS is a significant burden not just to the health and lives of patients and their31 families, but also incurs great challenges for the healthcare system and healthcare financing32 of Georgia; and33 WHEREAS, there is new hope for patients with FSGS, with clinica l trials underway for34 products that may delay progression of FSGS and the onset of kidney disease, including the35 S. R. 844 - 2 - 26 LC 129 1237 potential for FDA approved therapies in the near future, and significant progress being made36 by scientists, regulators, patient groups, and industry through the PARASOL Project to37 validate proteinuria as an indicator of improvement in patients; and38 WHEREAS, patients, families, advocacy organizations like NephCure, healthcare providers,39 industry, and researchers are working tirelessly to raise awareness, promote early detection,40 and develop new innovative therapies for FSGS and other rare kidney disease patients living41 in Georgia; and42 WHEREAS, FSGS Awareness Day is designated to raise awareness of FSGS, provide43 support and inspiration to patients and families struggling with the disease, and to promote44 the efforts needed for better diagnosis and access to future treatments that can transform the45 course of the disease.46 NOW, THEREFORE, BE IT RESOLVED BY THE SENATE that the members of this body47 recognize June 9, 2026, as FSGS Awareness Day in Georgia.48 BE IT FURTHER RESOLVED that the Secretary of the Senate is authorized and directed49 to make appropriate copies of this resolution available for distribution to the public and the50 press.51 S. R. 844 - 3 -