Help raise awareness of AMKD with your advocacy
Proclamations help bring public attention and inform elected officials about a wide number of issues, including the need for more awareness and education about chronic diseases. As we approach the first ever AMKD Awareness Day on April 30, AKF, together with advocates across the country, is working to secure proclamations from state governors for this new observance from coast to coast.
APOL1-mediated kidney disease (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 in people of Western and Central African descent. It is estimated that 13% of Black Americans have two mutations of the APOL1 gene, and these individuals have a 1 in 5 chance of developing kidney disease.
Help us raise awareness of AMKD in 2024!
Request that your state declare the last Tuesday in April "APOL-1 Mediated Kidney Disease Day (AMKD Day)."
Already Requested? Email email@example.com
Proclamation message instructions
- COPY the message below.
- Find your state's proclamation request page.
- Fill out the form with your information.
- In the contact form or email form section asking about your request, PASTE the message.
NOTE: Feel free to edit the message to share your experience with kidney disease. The more personal your message is, the more likely we are to get a response from your governor.
- COPY one whereas clause from below and the Governor resolution language.
- PASTE your selected clause and the proclamation content in the appropriate section of the request form.
- Send your request for a proclamation.
- Share this page with your friends – the more requests sent, the more likely a proclamation will be made! Please feel free to edit this message to share your experience with kidney disease.
Message to copy/personalize
On behalf of the 37 million Americans with kidney disease and in recognition of long-standing health disparities that show Black people are more likely to develop kidney failure than any other racial/ethnic group, I am writing to request that a proclamation be issued this year for APOL1-Mediated Kidney Disease (AMKD) Awareness Day.
The American Kidney Fund (AKF), the nation's leading nonprofit working on behalf of 37 million Americans with kidney disease, is working to raise awareness about APOL1-mediated kidney disease (AMKD), a spectrum of kidney disease associated with variants in the apolipoprotein L1 (APOL1) gene that is linked to an increased risk for kidney disease in people of African ancestry.
The APOL1 gene evolved over the past 3,000-10,000 years in people who lived in Western and Central Africa. The mutation that evolved is associated with protection against a certain type of parasite that causes African sleeping sickness. As a result, people from Western or Central Africa or who have an ancestor who came from these regions are more likely to have APOL1 gene mutations. This includes people who identify as Black, African American, Afro-Caribbean and Latina/Latino.
People with two of the APOL1 genetic mutations (or variants) are at a higher risk for developing kidney disease and even kidney failure.
In the United States, an estimated 13% of Black Americans have two of the APOL1 genetic variations. Not everyone who has two copies of APOL1 genetic mutations will get kidney disease. But if you have mutations in both copies of the APOL1 gene, there is a 1 in 5 chance that you will go on to develop kidney disease.
We want to raise awareness of this genetic mutation, encouraging the affected community to get screened and to take early action to support their kidney health.
Please find below a draft of a proposed Proclamation for APOL1-Mediated Kidney Disease (AMKD) Awareness Day for the last Tuesday in April, to help build recognition and support for individuals and families fighting this disease.
You may send the proclamation to:
American Kidney Fund
Attention: AMKD Day
11921 Rockville Pike, Suite 300, Rockville, MD 20852
On behalf of all those affected by this life-altering disease, thank you for your consideration and support.
In addition to your message explaining your proclamation request, your state will ask for what the proclamation will state. This includes ALL of the below "whereas clauses" and the resolution language from the Governor. COPY the content below and PASTE it in the section of the request form/email asking for the proclamation content.
Proclamation content to copy:
Whereas, kidney disease affects an estimated 37 million Americans, and more than 550,000 are on dialysis, and
Whereas, Black people with kidney disease are more likely to develop kidney failure than any other racial/ethnic group, and
Whereas, the health disparities in kidney failure are unsustainable, with Black people making up 13% of the U.S. population but accounting for 35% of those with kidney failure, and
Whereas kidney failure places enormous physical, emotional and financial burdens on individuals and costs the Medicare program over $50 billion annually, and
Whereas, there are genetic factors that can increase an individual's risk for kidney disease, and
Whereas, one such genetic factor is having variants (mutations) in the apolipoprotein L1 (APOL1) gene, and
Whereas, people are more likely to have APOL1 gene variants if they are from Western or Central Africa or have an ancestor who came from these regions, and
Whereas, these variants can increase susceptibility for APOL1-Mediated Kidney Disease (AMKD), a rapidly progressive form of kidney disease that can lead to kidney failure and
Whereas, it is estimated that if a patient has variants in both copies of the APOL1 gene, there is a 1 in 5 chance they will go on to develop kidney disease, and an estimated 13% of Black Americans have variants in both copies of the APOL1 gene, and
Whereas, a person with AMKD may not have any symptoms of kidney disease until theirkidneys are close to failing and
Whereas, genetic testing can reveal an individual's risk for AMKD, empowering them to take the steps necessary to protect their kidney health before it is too late, and
Whereas individuals who are found to have APOL 1 genetic variants can reduce their risk for kidney failure by meeting with their doctor regularly, eating a healthy diet, taking all medications as prescribed, exercising for at least 30 minutes a day, and not smoking or using tobacco, and
Whereas additional awareness and research of APOL1 genetic mutations are needed to improve understanding of the kidney disease disparities in this population, and
Whereas there are currently no FDA-approved treatments available for APOL1-mediated kidney disease but clinical trials could provide an opportunity for researchers to develop and test safe treatments for APOL1-mediated kidney disease, and
Whereas the Governor's office can raise public awareness of APOL 1 mediated kidney disease; Now, therefore, be it
Resolved, That the Governor —
(1) designates the last Tuesday of each April as "APOL1-Mediated Kidney Disease (AMKD) Awareness Day;" and
(2) encourages each individual in the United States to become better informed about and aware of kidney disease and AMKD;
(3) encourages people from or with ancestry from Western and Central Africa to consider genetic testing for APOL 1 gene mutations.