American Kidney Fund and Alonzo Mourning Call for More Awareness and Understanding of APOL1-Mediated Kidney Disease (AMKD) on Capitol Hill

ROCKVILLE, Md. (April 9, 2024) – Today, the American Kidney Fund (AKF) and basketball Hall-of-Famer Alonzo Mourning are teaming up on Capitol Hill for a roundtable and policy discussion to highlight the stories of people with APOL1-mediated kidney disease (AMKD) and spread awareness of this rapidly progressive form of genetic kidney disease. The roundtable is being held in conjunction with the nation's first ever AMKD Awareness Day, which AKF is launching on April 30, 2024. AKF is urging legislators to support a resolution — which will be introduced by Congresswoman Stacey Plaskett — to recognize the day nationwide.   

AMKD results from variants (mutations) in the apolipoprotein L1 (APOL1) gene. While everyone has two copies of the APOL1 gene, people with certain African ancestry, including Black Americans, African Americans, Afro-Caribbeans, and/or Latina/Latinos, are at an increased risk of having these genetic variants that bring an increased risk of developing AMKD. 

"Although the genetic link to AMKD is still a relatively new discovery in the kidney world, it is estimated that 13% of Black Americans have two variants of the APOL1 gene, and these individuals have a one in 5 chance of developing kidney disease," said LaVarne A. Burton, President and CEO of AKF. "It is vital that more people know about the existence and implications of AMKD, especially those who are disproportionately impacted by kidney disease and more likely to have the genetic variants. We are grateful to Congresswoman Plaskett for introducing the resolution for AMKD Awareness Day and we hope this roundtable will show other legislators the importance of supporting this resolution and drawing more attention to this underrecognized disease."

Featured speaker Alonzo Mourning has been active in the effort to spread awareness of the condition since he was diagnosed with the disease. Although Mourning was diagnosed with kidney disease in the early 2000s, during the height of his basketball career, he only later learned that it was AMKD. 

"For many years, I have publicly shared my personal kidney disease story to help educate people about APOL1-mediated kidney disease," said Mourning. "I am honored to play a role in this new effort to help ensure more families and communities learn about AMKD through the first annual AMKD Awareness Day. By sharing our stories and bringing more attention to AMKD, I hope we can inspire more people to become APOL1 aware — taking charge of their health by knowing their family history of kidney disease, having regular physician checkups and talking to their health care provider about whether genetic testing is recommended."

After his remarks, Mourning will join three AKF Ambassadors as part of the roundtable discussion, which will be moderated by Burton. 

Also participating in the roundtable discussion are:

• Patrick Gee, AKF Board of Trustees and AKF Ambassador 
• Quenton Turner-Gee, age 29, AKF Ambassador, diagnosed with APOL1-mediated focal segmental glomerulosclerosis (FSGS), a form of AMKD
• Emani McConnell-Brent, age 20, AKF Ambassador, diagnosed with APOL1-mediated FSGS  
• Mary-Beth Roberts, genetic counselor at the Cleveland Clinic

Find updates and more information at KidneyFund.org/APOL1aware.  

Support for AMKD Awareness Day activities, including this roundtable discussion, is provided by Vertex Pharmaceuticals Incorporated.