NephCure’s Ongoing Efforts to Educate and Empower Communities in the Fight Against APOL1 Kidney Disease April 25, 2024 by Imanté Eichelberger Leave a Comment Ahead of the inaugural National APOL1 Kidney Disease Awareness Day on April 30, 2024, NephCure has been making a meaningful impact in communities across the country. The organization is joining hands with Historically Black Colleges and Universities and faith– based organizations nationwide to spread awareness about APOL1 kidney disease, a genetic form of kidney disease that impacts people of African descent. Black Americans are 3-4 times more likely to develop kidney failure than white Americans, this is due in part to genetics. Every person inherits 2 copies of the APOL1 gene. Those who inherit a change in both copies of their APOL1 genes have 10x to 30x the risk for developing kidney disease. These gene changes are only found in people of African descent. APOL1 researchers believe that up to 40% of Black Americans on dialysis have APOL1-related kidney disease. NephCure’s goal for each of these partnerships, in addition to raising awareness, is to promote early detection and prevention. Last month, a recent collaboration took place at Howard University College of Dentistry’s health fair on March 16, 2024. This health fair showcased various healthcare organizations and offered educational sessions in the D.C. Metro Area. Attendees had the opportunity to learn about the APOL1 gene and its connection to rare kidney disease, as well as to receive NephCure’s cookbook filled with kidney-friendly recipes and other educational materials, empowering individuals with more information they will need to manage their kidney health effectively. On March 24, 2024, NephCure also partnered with Fountain of Praise Church in Houston, TX, to host an APOL1 Educational Event. This event was designed to raise awareness and empower communities affected. Lauren Eva, NephCure’s Executive Vice President, delivered impactful speeches at the event, emphasizing the importance of knowledge and support in addressing the challenges associated with the APOL1 gene variant. Rhianna Sullivan, and Kimberly Figgs, and other NephCure staff members, were present as well and engaged directly with church members, providing insights into an upcoming screening event at the church scheduled for April 28th. Their empathetic and knowledgeable approach created a space where community members felt supported and understood, encouraging them to take an active role in their kidney health. In Philadelphia, NephCure partnered with Enon Tabernacle Church and the CARE and JUSTICE team, an APOL1 kidney disease registryand clinical trial from Duke University, on April 20, 2024 for the church’s Know Your Numbers Men’s Health Initiative. More than 600 men came out to the event, and 176 of them received kidney screenings. Patient advocate, Joshua Albright, was also in attendance to sit on several panels throughout the day, sharing his personal experience with APOL1 kidney disease. NephCure’s newest Board of Directors, Rev. Leroy Miles and Dr. Barbara Gillespie were both at the event, helping lead the event logistics and conducting urinalysis screenings respectively. NephCure’s CEO, Josh Tarnoff, as well as other staff members, Montrez Lucas, Erin Park, and Kylie Karley assisted in the screening process, handing out NephCure education materials, APOL1 Awareness Day t– shirts, and overall helping provide crucial early detection and intervention opportunities. Looking ahead, NephCure has planned an APOL1 awareness event at Bethel Missionary Baptist Church in Tallahassee this Saturday, April 27, 2024. NephCure has organized urinalysis screenings for the 225 expected attendees and will be distributing educational materials and APOL1 Awareness Day shirts to foster conversations, promote a sense of community, and ultimately raise awareness. NephCure has other upcoming APOL1 awareness events this Sunday, April 28, 2024, in Houston, Chicago, Atlanta, and Washington, D.C. These events aim to educate attendees about the connection between the APOL1 gene variant and rare kidney disease risk. Each event will offer informative sessions with leading nephrologists, free t-shirts, urinalysis screenings and provide attendees with invaluable resources to help them take control of their kidney health. And to round out the APOL1 Kidney Disease Awareness Day events, NephCure is hosting a live, virtual town hall on the inaugural awareness day, April 30th, at 7pm ET. The event is free to attend, and all are encouraged to register here. To learn more about APOL1 and how you can get involved in APOL1 Kidney Disease Awareness Day on April 30th, please visit resources.nephcure.org/apol1.
NephCure Announces Inaugural APOL1 Kidney Disease Awareness Day on April 30th April 11, 2024 by Imanté Eichelberger Leave a Comment NephCure, a leading nonprofit organization dedicated to finding better treatments and a cure for rare kidney disease, is proud to announce the inaugural National APOL1 Kidney Disease Awareness Day on April 30th, 2024.The day is dedicated to raising awareness of APOL1 kidney disease, a genetic form of kidney disease that predominantly impacts people of African descent. APOL1 kidney disease is caused by specific genetic variations, or changes, in the APOL1 gene, which can lead to a significantly higher risk of developing kidney disease. Individuals who inherit these gene variations have 10 to 30 times the risk of developing kidney disease, making it crucial to raise awareness and support those affected by this condition. NephCure invites everyone to join in on the movement and help raise awareness for APOL1 kidney disease by supporting the following: How you can help: Share on Social Media: Spread the word by sharing your photos and posting the downloadable APOL1 kidney disease awareness graphics on social media. Remember to use the hashtag #HopeForAPOL1 and tag @NephCure. Attend the APOL1 Day Virtual Town Hall: Join NephCure on April 30th at 7pm ET as they host an APOL1 Day Virtual Town Hall. Register for this FREE webinar where you can connect with leading APOL1 researchers, doctors, and individuals personally affected by APOL1 kidney disease. Did you Know? 13% of African Americans carry APOL1 gene changes that can lead to APOL1 kidney disease. Of these individuals, 1 in 5 will develop APOL1 kidney disease. APOL1 kidney disease can impact individuals of all ages, including children and young adults, often progressing swiftly towards kidney failure. Unfortunately, there are currently no FDA-approved treatments specifically for APOL1 kidney disease. Approximately 40% of cases of kidney failure in those without diabetes are associated with APOL1 gene variations. NephCure thanks Vertex Pharmaceuticals for their generous support in sponsoring this event and making APOL1 Kidney Disease Awareness Day possible. For more information about APOL1 Awareness Day, please visit resources.nephcure.org/apol1 About NephCure: NephCure’s mission is to empower people with rare, protein-spilling kidney disease to take charge of their health, while leading the revolution in research, new treatments, and care. Founded in 2000 by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now new treatments and more than 60 interventional drug trials for rare kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity.