SR990: SR990 FSGS Awareness Day; recognize June 9, 2026

26 LC 129 9044 Senate Resolution 990 By: Senators Albers of the 56th, Strickland of the 42nd, Dickerson of the 21st, Payne of the 54th, Goodman of the 8th and others A RESOLUTION Recognizing June 9, 2026, as FSGS Awareness Day at the state ca pitol; and for other1 purposes.2 WHEREAS, approximately 1 in 7 American adults have chronic kidn ey disease, and the3 third leading cause of chronic kidney disease is glomerulonephr itis, often caused by rare4 kidney diseases such as focal segmental glomerulosclerosis (FSGS); and5 WHEREAS, focal segmental glomerulosclerosis is a condition referring to the scarring in the6 kidneys, often leading to a difficult journey that can in many cases result in kidney failure,7 requiring dialysis, transplant, and often cycles of remissions and relapse; and8 WHEREAS, 50 percent of patients with FSGS require dialysis or a kidney transplant within9 5–10 years of their diagnosis; and10 WHEREAS, FSGS is a severe disease because it often progresses rapidly to kidney failure11 and even for patients with primary FSGS who receive a kidney transplant, FSGS can recur12 in their transplanted kidney up to 50 percent of the time; and13 S. R. 990 - 1 - 26 LC 129 9044 WHEREAS, FSGS can be diagnosed at any age, but is most commonly diagnosed in adults14 rather than in children and most prevalent in adults over 45 years old; and15 WHEREAS, FSGS is a burden on our healthcare system, with a 2019 study estimating that16 FSGS costs Medicaid, Medicare, and private health insurance about $2 billion annually in17 direct medical costs, not including indirect and quality of life costs; and18 WHEREAS, according to the RaDaR Database, rare kidney diseases like FSGS make up just19 5-10 percent of chronic kidney disease patients but account for approximately 30 percent of20 kidney failures; and21 WHEREAS, many patients face delays in being diagnosed with FSGS , due both to the22 difficulty of the rare disease diagnostic odyssey averaging 5-7 years and challenges in23 accessing nephrology care that specializes in rare kidney disea ses as there is currently a24 shortage in the United States; and 25 WHEREAS, FSGS disproportionately impacts minority populations, including African26 Americans, often occurring at a rate 4–5 times higher than white Americans; and 27 WHEREAS, because of certain variants of the APOL1 gene that significantly increase the28 risk of developing FSGS and other kidney diseases, and these high-risk variants are found29 almost exclusively in individuals of African ancestry, FSGS con tributes to the30 disproportionate burden of kidney disease in Black communities; and31 WHEREAS, FSGS is a significant burden not just to the health and lives of patients and their32 families, but also incurs great challenges for the healthcare system and healthcare financing33 of Georgia; and34 S. R. 990 - 2 - 26 LC 129 9044 WHEREAS, there is new hope for patients with FSGS, with clinica l trials underway for35 products that may delay progression of FSGS and the onset of kidney disease, including the36 potential for FDA approved therapies in the near future, and significant progress being made37 by scientists, regulators, patient groups, and industry through the PARASOL Project to38 validate proteinuria as an indicator of improvement in patients; and39 WHEREAS, patients, families, advocacy organizations like NephCure, healthcare providers,40 industry, and researchers are working tirelessly to raise awareness, promote early detection,41 and develop new innovative therapies for FSGS and other rare kidney disease patients living42 in Georgia; and43 WHEREAS, FSGS Awareness Day is designated to raise awareness of FSGS, provide44 support and inspiration to patients and families struggling with the disease, and to promote45 the efforts needed for better diagnosis and access to future treatments that can transform the46 course of the disease.47 NOW, THEREFORE, BE IT RESOLVED BY THE SENATE that the members of this body48 recognize June 9, 2026, as FSGS Awareness Day at the state capitol.49 BE IT FURTHER RESOLVED that the Secretary of the Senate is authorized and directed50 to make appropriate copies of this resolution available for distribution to the public and the51 press.52 S. R. 990 - 3 -