What Does it Mean to Be APOL1 Aware? American Kidney Fund Drives Efforts to Raise Awareness About AMKD, a Serious Genetic Disease Impacting the Black Community

Associated Press

29-04-2025

ROCKVILLE, Md., April 29, 2025 (GLOBE NEWSWIRE) -- Today the American Kidney Fund (AKF) announces the second annual APOL1-Mediated Kidney Disease (AMKD) Awareness Day, a day to educate communities about this genetic form of rapidly progressive kidney disease and how one's genes can impact their kidney health. AKF is encouraging people to be 'APOL1 Aware' for AMKD Awareness Day and beyond as part of this national campaign, support for which is provided by Vertex Pharmaceuticals Incorporated.
While everyone has two copies of the APOL1 gene, people of certain African ancestry are more likely to have APOL1 gene variants (mutations) that cause AMKD. People who identify as Black, African American, African, Afro-Caribbean, and/or Hispanic/Latino and who have inherited certain variations of the APOL1 gene have an increased likelihood of developing AMKD. This type of kidney disease can develop even at a young age, and it can advance faster than other kidney diseases.
'The link between APOL1 gene variants and kidney disease was discovered just 15 years ago, and as we learn more about this serious disease, we are working proactively to spark conversations in at-risk groups so they can look into their family history, learn more about how their genes may play a role in their kidney health and take steps to preserve their kidney health, potentially delaying the need for dialysis or a kidney transplant,' said LaVarne A. Burton, President and CEO of AKF. 'We are grateful to all those supporting these important efforts, including Vertex Pharmaceuticals for their continued support in raising awareness of APOL1's connection to kidney disease through AMKD Awareness Day.'
'Broadening awareness of this genetic cause of kidney disease is an important part of improving health outcomes for kidney patients,' said Amit Sachdev, Chief Patient and External Affairs Officer at Vertex Pharmaceuticals. 'Vertex is honored to support these activities around AMKD Awareness Day to drive conversations about family health history, genetic testing and building a trusting relationship with your health care team.'
This year's AMKD Awareness Day activities have included a Town Hall with Congressman Glenn Ivey (MD) on April 26, a session today at the National Minority Quality Forum's Annual National Leadership Summit on Health Disparities, a radio public service announcement and media tour with Alonzo Mourning, basketball Hall-of-Famer diagnosed with AMKD and paid spokesperson for Vertex Pharmaceuticals, a session at the National Association of Black Social Workers conference, a sponsored article in Essence magazine, and a far-reaching social media influencer campaign. Educational efforts also include delivering an educational webinar to the membership of Alpha Phi Alpha Fraternity and training AKF's Kidney Health Coaches on presenting about AMKD in their local communities.
Additionally, Congresswoman Stacey Plaskett (U.S. Virgin Islands) is introducing a resolution in Congress in recognition of the day and AKF worked with AKF Ambassadors across the country on state proclamations, submitting requests in 30 states.
It's not too late to help spread awareness of AMKD and its connection to kidney disease— supporters may 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.
AMKD Awareness Day, launched by AKF in 2024, is recognized annually on the last Tuesday of April, which is National Minority Health Month.
Additional sponsorship has been provided by Natera. AKF is joined by dozens of other organizations supporting AMKD Awareness Day, a full list of which can be found on KidneyFund.org/APOL1Aware.
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About the American Kidney Fund
The American Kidney Fund (AKF) fights kidney disease on all fronts as the nonprofit with the greatest direct impact on people with kidney disease. AKF works on behalf of 1 in 7 Americans living with kidney disease, and the millions more at risk, with an unmatched scope of programs that support people wherever they are in their fight against kidney disease — from prevention through transplant. AKF fights for kidney health for all through programs that address early detection, disease management, financial assistance, clinical research, innovation and advocacy. AKF is one of the nation's top-rated nonprofits, investing 97 cents of every donated dollar in programs, and it has received 24 consecutive 4-Star ratings from Charity Navigator as well as the Platinum Seal of Transparency from Candid, formerly known as GuideStar.
For more information, please visit KidneyFund.org, or connect with us on Facebook, Twitter, Instagram and LinkedIn.
Nancy Gregory American Kidney Fund [phone] [email protected]