Latest news with #LaVarneA.Burton
Associated Press
29-04-2025
- Health
- Associated Press
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
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 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 ### 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 or connect with us on Facebook, Twitter, Instagram and LinkedIn. Nancy Gregory American Kidney Fund (240) 292-7077 [email protected]
Yahoo
03-03-2025
- Health
- Yahoo
Kidney Community Comes Together for American Kidney Fund's Sixth Annual Kidney Action Week®
ROCKVILLE, Md., March 03, 2025 (GLOBE NEWSWIRE) -- Today marks the beginning of the American Kidney Fund's (AKF) sixth annual Kidney Action Week®, the only free, online conference in the nation in which people with kidney disease, health professionals, caregivers, advocates and others come together to learn and connect. The event, which every year draws thousands of participants, is a highlight of Kidney Month. Kidney disease affects approximately 1 in 7 Americans. The condition is life-altering, has no cure and frequently is not detected until later stages when symptoms are more severe, leading the disease to be referred to as a silent killer because it can lead to heart attack, stroke, kidney failure and death. While kidney damage cannot be reversed, steps can be taken to slow its progression when it is detected early through eGFR and UACR tests. Each day of Kidney Action Week will feature empowering educational sessions designed to give people the knowledge and tools they need to take charge of their kidney health, covering topics such as rare kidney disease, kidney disease prevention, detection and management, dialysis, transplant and living organ donation and clinical research and innovation. 'Given how common kidney disease is, providing people the information and tools they need to manage their kidney health is critically important,' said LaVarne A. Burton, AKF President and CEO. 'In addition to providing these vital resources, Kidney Action Week is also a chance for members of the kidney community to ask questions, share stories and connect with each other.' Kidney Action Week will include a Congressional Briefing on March 4, 'Genetic Testing: Is it the Right Choice for You?' This discussion will focus on genetic testing and counseling, give an overview of genetic causes of kidney disease and address who should receive genetic testing. Among the scheduled speakers are U.S. Rep. Adrian Smith (R-Neb.), who will deliver video remarks. Rep. Smith was the lead sponsor of H.R. 3876, the Access to Genetic Counselor Services Act of 2023. The following sessions will take place during Kidney Action Week: Monday, March 3 Behind the Diagnosis: Unique Experiences from Patients with Rare Kidney Diseases Take Control: Know Your Kidneys and Build a Plan Become a Kidney Health Coach: Inspire Others to Keep Their Kidneys Healthy Tuesday, March 4 Congressional Briefing: Genetic Testing – Is it the Right Choice for You? Path to Diagnosis: Understanding Your Rare Kidney Disease Cause Long COVID and Kidney Disease: Understanding the Impact and Advancing Care Wednesday, March 5 Infection Control in Dialysis: Best Practices for Prevention and Management Managing Resistant High Blood Pressure in Chronic Kidney Disease Patients Life After a Kidney Transplant: Embracing Change and Setting Realistic Expectations Thursday, March 6 The Power of Participation: Diversifying Clinical Research to Advance Kidney Health Breaking Barriers: Empowering Organ and Tissue Donation in Minority Communities Building Better Kidney Health Advocacy: Mapping the Lived Experiences of People with Chronic Kidney Disease Friday, March 7 General Chronic Kidney Disease Q&A Transplant Q&A Q&A with Renal (Kidney) Dietitians Patient Support Q&A More details on these sessions and the speakers, along with information on registration, is available at Kidney Action Week is part of AKF's Know Your Kidneys® kidney disease education and prevention program. Kidney Action Week is made possible thanks to the support of Event Sponsors Travere Therapeutics, Inc., Track Sponsors Boehringer Ingelheim, CorMedix Inc. and Novartis Pharmaceuticals Corporation; and Session Sponsors AstraZeneca plc and Otsuka America Pharmaceutical, Inc. 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 or connect with us on Facebook, Twitter, Instagram and LinkedIn. CONTACT: Nancy Gregory American Kidney Fund (240) 292-7077 ngregory@ in to access your portfolio
Associated Press
03-03-2025
- Health
- Associated Press
Kidney Community Comes Together for American Kidney Fund's Sixth Annual Kidney Action Week®
ROCKVILLE, Md., March 03, 2025 (GLOBE NEWSWIRE) -- Today marks the beginning of the American Kidney Fund's (AKF) sixth annual Kidney Action Week ®, the only free, online conference in the nation in which people with kidney disease, health professionals, caregivers, advocates and others come together to learn and connect. The event, which every year draws thousands of participants, is a highlight of Kidney Month. Kidney disease affects approximately 1 in 7 Americans. The condition is life-altering, has no cure and frequently is not detected until later stages when symptoms are more severe, leading the disease to be referred to as a silent killer because it can lead to heart attack, stroke, kidney failure and death. While kidney damage cannot be reversed, steps can be taken to slow its progression when it is detected early through eGFR and UACR tests. Each day of Kidney Action Week will feature empowering educational sessions designed to give people the knowledge and tools they need to take charge of their kidney health, covering topics such as rare kidney disease, kidney disease prevention, detection and management, dialysis, transplant and living organ donation and clinical research and innovation. 'Given how common kidney disease is, providing people the information and tools they need to manage their kidney health is critically important,' said LaVarne A. Burton, AKF President and CEO. 'In addition to providing these vital resources, Kidney Action Week is also a chance for members of the kidney community to ask questions, share stories and connect with each other.' Kidney Action Week will include a Congressional Briefing on March 4, 'Genetic Testing: Is it the Right Choice for You?' This discussion will focus on genetic testing and counseling, give an overview of genetic causes of kidney disease and address who should receive genetic testing. Among the scheduled speakers are U.S. Rep. Adrian Smith (R-Neb.), who will deliver video remarks. Rep. Smith was the lead sponsor of H.R. 3876, the Access to Genetic Counselor Services Act of 2023. The following sessions will take place during Kidney Action Week: Monday, March 3 Behind the Diagnosis: Unique Experiences from Patients with Rare Kidney Diseases Take Control: Know Your Kidneys and Build a Plan Become a Kidney Health Coach: Inspire Others to Keep Their Kidneys Healthy Tuesday, March 4 Congressional Briefing: Genetic Testing – Is it the Right Choice for You? Path to Diagnosis: Understanding Your Rare Kidney Disease Cause Long COVID and Kidney Disease: Understanding the Impact and Advancing Care Wednesday, March 5 Infection Control in Dialysis: Best Practices for Prevention and Management Managing Resistant High Blood Pressure in Chronic Kidney Disease Patients Life After a Kidney Transplant: Embracing Change and Setting Realistic Expectations Thursday, March 6 The Power of Participation: Diversifying Clinical Research to Advance Kidney Health Breaking Barriers: Empowering Organ and Tissue Donation in Minority Communities Building Better Kidney Health Advocacy: Mapping the Lived Experiences of People with Chronic Kidney Disease Friday, March 7 General Chronic Kidney Disease Q&A Transplant Q&A Q&A with Renal (Kidney) Dietitians Patient Support Q&A More details on these sessions and the speakers, along with information on registration, is available at Kidney Action Week is part of AKF's Know Your Kidneys® kidney disease education and prevention program. Kidney Action Week is made possible thanks to the support of Event Sponsors Travere Therapeutics, Inc., Track Sponsors Boehringer Ingelheim, CorMedix Inc. and Novartis Pharmaceuticals Corporation; and Session Sponsors AstraZeneca plc and Otsuka America Pharmaceutical, Inc. 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.
