American Kidney Fund Encourages People to Be APOL1 Aware with First Annual APOL1-Mediated Kidney Disease (AMKD) Awareness Day
April 30 2024 - 9:14AM
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
###
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 holds the highest 4-Star rating
from Charity Navigator for 21 consecutive years and 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
(240) 292-7077
ngregory@kidneyfund.org