American Kidney Fund Encourages People to Be APOL1 Aware with First Annual APOL1-Mediated Kidney Disease (AMKD) Awareness Day

ROCKVILLE, Md. (April 30, 2024) — Today marks the nation's first ever APOL1-Mediated Kidney Disease (AMKD) Awareness Day, launched this year by the American Kidney Fund (AKF) to increase recognition of this serious genetic disease and to urge people to consider how where they come from can impact their kidney health. Support for AMKD Awareness Day is provided by Vertex Pharmaceuticals Incorporated.

AMKD is a spectrum of kidney diseases associated with variants (mutations) in the apolipoprotein L1 (APOL1) gene and linked to an increased risk for rapidly progressing kidney disease. Everyone has two copies of the APOL1 gene, but people who have western and central African ancestry, including those who are Black, African American, Afro-Caribbean and/or Latina/Latino, are at an increased risk of having a mutation in one or both of the genes. People with mutations in both genes are at higher risk of developing genetic forms of kidney disease such as focal segmental glomerulosclerosis (FSGS).

"Scientific understanding of APOL1-mediated kidney disease is an important breakthrough in the kidney field and contributes to our understanding of how genetics factor in the health disparities we see in kidney disease," said LaVarne A. Burton, President and CEO of AKF. "With generous support from Vertex Pharmaceuticals, we are excited to establish AMKD Awareness Day to help more people — especially people of color who are most likely to be impacted by AMKD — learn about this disease and how they can take steps to protect their kidney health."

"Expanding awareness of AMKD can and does have a significant impact on patients, encouraging conversations about family health history and expanding awareness of genetic testing," said Amit Sachdev, Chief Patient and External Affairs Officer at Vertex Pharmaceuticals. "Vertex is delighted to support this important initiative, both to encourage broader understanding of AMKD and to provide educational resources to the kidney community."

As part of this inaugural event, today AKF is leading a panel about AMKD at the National Minority Quality Forum's (NMQF) Annual National Leadership Summit on Health Disparities, which will be live-streamed on the NMQF's YouTube channel.

AKF was also honored to throw out the first pitch at a Boston Red Sox game on April 12 for AMKD Awareness Day. 

In the months leading up to AMKD Awareness Day, AKF, along with AKF Ambassadors across the country, have advocated for recognition of this new observance on the federal and state level. A resolution was introduced by Congresswoman Stacey Plaskett. Legislators were encouraged to support the resolution at a patient and policy roundtable discussion that AKF hosted on Capitol Hill on April 9. The featured speaker for the event was basketball Hall-of-Famer Alonzo Mourning, who has been active in the effort to spread awareness of the condition since he was diagnosed with AMKD. In addition to the federal resolution, 12 governors have issued proclamations to recognize AMKD Awareness Day in their state.

AKF Ambassadors have also been sharing their personal stories through short videos.

Those interested in spreading awareness of AMKD and its connection to kidney disease can download the AMKD Awareness Day Community Toolkit, which includes resources to share on social media, within a workplace or community organizations, and more. They can also find AMKD Awareness Day graphics to share at kidneyfund.org/APOL1aware and use the hashtag #APOL1aware.

"For many years, I have publicly shared my personal kidney disease story to help educate people about APOL1-mediated kidney disease. I might not have learned about my own kidney disease if it weren't for a pre-season physical and I certainly did not know that I had an inherited, genetic variation that put me at greater risk of developing kidney disease," said basketball Hall-of-Famer Alonzo Mourning, a spokesperson for Vertex. "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 with regular physician checkups, and talking to their health care provider about whether genetic testing is recommended."

AMKD Awareness Day will be recognized annually on the last Tuesday of April, which is National Minority Health Month.

Additional sponsorship has been provided by Natera. The following organizations have also pledged support as Official AMKD Awareness Day Supporters: 

• Acclinate 
• Alpha Phi Alpha Fraternity 
• American Nephrology Nurses Association 
• American Society of Nephrology  
• Arkana Laboratories  
• Balm in Gilead, Inc.  
• Black Health Matters 
• Chi Eta Phi Nursing Sorority 
• Glomerular Disease Study & Trial Consortium 
• Kappa Alpha Psi 
• Kidney Health Initiative 
• Kindness for Kidneys 
• Minority Organ Tissue Transplant Education Program 
• Mt. Zion Baptist Church 
• National Association of Genetic Counselors 
• National Council of Negro Women 
• National Health Council  
• National Kidney Foundation 
• National Minority Quality Forum 
• National Organ, Eye and Tissue Donation Multicultural Action Group 
• NephCure 
• PALADIN of Tufts University 
• Renal Pathology Society 
• Renal Physicians Association