The Kidney Collective

S2E4: "Our Voices Need to Be Heard", IgAN with Malkia White

Malkia White, an AKF Ambassador and member of AKF's Rare Kidney Disease Action Network (RKDAN), joins this episode of The Kidney Collective™ [https://www.kidneyfund.org/podcast] to talk with our co-hosts Tamara Ruggiero and Mike Spigler about her journey living with IgA nephropathy (IgAN). Malkia shares how she was diagnosed with "Berger's disease" (what IgAN was previously called) as a child but did not understand her disease until adulthood. After learning she was in kidney failure, she did extensive research on the subject and became a vocal advocate for herself and others. She explains how her strong will to live and to fight to survive helped her persevere through the challenges of dialysis and waiting for a kidney transplant. She also tells Tamara and Mike how she started her social media campaign #ThatGirlNeedsAKidney while leaning on her village through it all, including family, friends and members of the rare kidney disease community. She emphasizes that "this illness has no face or look to it," and someone may look like the "picture of health" when they are struggling.   More Resources: * 'A Step Ahead of IgA Nephropathy' [https://www.kidneyfund.org/all-about-kidneys/other-kidney-diseases/iga-nephropathy]  * 'We go through a lot': Life with a rare kidney disease [https://www.kidneyfund.org/article/we-go-through-lot-life-rare-kidney-disease]  * Kidney donation and transplant [https://www.kidneyfund.org/kidney-donation-and-transplant]  * Life after transplant: Rejection prevention and healthy tips [https://www.kidneyfund.org/kidney-donation-and-transplant/life-after-transplant-rejection-prevention-and-healthy-tips]   * Kidney health research and innovations [https://www.kidneyfund.org/kidney-health-innovations]  * Mental health and kidney disease [https://www.kidneyfund.org/living-kidney-disease/mental-health-and-kidney-disease]  * Rare Kidney Disease Action Network [https://www.kidneyfund.org/rare-kidney-disease-action-network]  * Unknown Causes of Kidney Disease Project [https://www.kidneyfund.org/professionals-and-research/unknown-causes-kidney-disease-project]  * IgA Nephropathy Foundation  [https://igan.org/]

S2E3: "I'm Not Just Here for Basketball", AMKD with Alonzo Mourning

In honor of APOL1-Mediated Kidney Disease (AMKD) Awareness Day, this special episode of The Kidney Collective [https://www.kidneyfund.org/podcast]™ features a conversation between AKF President and CEO LaVarne A. Burton and Basketball Hall-of-Famer Alonzo Mourning. After they discuss the Miami Heat’s impressive showing on March 10, the two discuss his journey with kidney disease. They talk about how he pushed through symptoms to win a gold medal and Olympic Basketball Player of the Year at the Summer Olympics in Syndey, Australia; how his strong family ties led to a second cousin donating his kidney to Alonzo; and how the relationship of trust he built with his nephrologist led to him participating in a study that ultimately found the connection between APOL1 gene variants and kidney disease like his. Alonzo emphasizes how he believes the struggles he has gone through with kidney disease showed him he was “not just here for basketball” and gave him the amazing opportunity to help others through service and education. LaVarne and Alonzo discuss his work on the Power Forward [https://www.powerforwardtogether.com/] campaign with Vertex Pharmaceuticals, and how he wants to encourage others facing kidney disease not to blame themselves, but to be proactive in their health journeys.   This episode is sponsored by Vertex Pharmaceuticals, Inc.  More resources: * AMKD Awareness Day [https://www.kidneyfund.org/amkd-awareness-day]  * APOL1-Mediated Kidney Disease [https://www.kidneyfund.org/all-about-kidneys/other-kidney-diseases/apol1-mediated-kidney-disease]  * APOL1 genetic counselor guide [https://www.kidneyfund.org/apol1-genetic-counselor-guide]  * Focal segmental glomerulosclerosis (FSGS) [https://www.kidneyfund.org/all-about-kidneys/other-kidney-diseases/focal-segmental-glomerulosclerosis-fsgs-symptoms-causes-and-treatment]

S2E2: "You're Not Alone", CAKUT with Vincent Ko

The Kidney Collective™ [https://www.kidneyfund.org/podcast] co-hosts Tamara Ruggiero and Mike Spigler are joined by Vincent Ko, founder of KidneyFuture (formerly the CAKUT Foundation), to discuss congenital abnormalities of the kidneys and urinary tract (CAKUT). As a parent of a child living with CAKUT, Vincent shares how he felt learning about his daughter's diagnosis before she was even born and how he has used his personal experiences to create KidneyFuture [https://kidneyfuture.org/].  The three discuss how CAKUT differs from other types of kidney diseases and the unique challenges people living with CAKUT face, including navigating the transition from being a pediatric kidney patient to an adult patient. Vincent also shares how he discovered the two greatest desires of pediatric nephrologists and of CAKUT patients/parents are aligned: (1) a better understanding of whose CAKUT progresses and whose doesn't and (2) more therapies that are safe and effective for children living with CAKUT. He also explains to Tamara and Mike how the kidney community may not be too far off from those goals. More resources:  * Congenital Abnormalities of the Kidneys and Urinary Tract (CAKUT) [https://www.kidneyfund.org/all-about-kidneys/other-kidney-diseases/cakut]  * Caring for someone with kidney disease [https://www.kidneyfund.org/living-kidney-disease/care-providers]  * Kidney disease in children [https://www.kidneyfund.org/all-about-kidneys/kidney-disease-children]  * Camp Connections [https://www.kidneyfund.org/get-involved/camp-connections] * Kidney Kitchen® [https://kitchen.kidneyfund.org/]  * Genetic testing and counseling for kidney disease [https://www.kidneyfund.org/all-about-kidneys/tests/genetic-testing-and-counseling]

S2E1: "I Found the Bright Lights and the Silver Linings", with Donna Cryer

AKF President and CEO LaVarne Burton kicks off the first episode of The Kidney Collective™ [https://www.kidneyfund.org/podcast]'s new season, "Rare Voices, Relatable Stories," with a conversation with Donna Cryer, founder of the Global Liver Institute [https://globalliver.org/], a global nonprofit patient advocacy organization. Donna lives with a rare autoimmune liver disease, received a liver transplant more than 30 years ago and has stage 3 chronic kidney disease (CKD). Donna and LaVarne discuss the ways that liver and kidney health are connected and how Donna's difficulty getting an accurate diagnosis is reflective of many people living with a rare disease — especially if they are people of color. Donna also describes how her faith, positivity and perseverance through the years have allowed her to be a fierce patient advocate, to doggedly pursue her career aspirations and to navigate the transition to being labeled "patient" with grace and humor — even if it means taking advantage of your jaundice to create an unforgettable Halloween costume. Donna and LaVarne also discuss ways that Donna believes the U.S. transplant system needs to change and how Donna's connections to the kidney community helped prepare her to manage her CKD.   Donna has recently stepped back as CEO of the Global Liver Institute and just moved with her husband to Pennsylvania to be closer to family.   More resources: * Rare Kidney Disease Action Network [https://www.kidneyfund.org/rare-kidney-disease-action-network] * Rare kidney diseases: Understanding, support and solutions [https://www.kidneyfund.org/all-about-kidneys/rare-kidney-diseases] * Global Liver Institute [https://globalliver.org/] * Join our Advocacy Network [https://www.kidneyfund.org/government-affairs-advocacy/join-our-advocacy-network] * Unknown Causes of Kidney Disease Project [https://www.kidneyfund.org/professionals-and-research/unknown-causes-kidney-disease-project] * Newly diagnosed chronic kidney disease (CKD) [https://www.kidneyfund.org/living-kidney-disease/just-diagnosed-kidney-disease] * Guide: Talking about your rare kidney disease [https://www.kidneyfund.org/talking-about-your-rare-kidney-disease] * Guide: Your Guide to Kidney Transplant [https://www.kidneyfund.org/your-guide-kidney-transplant]

Season 2 Teaser: An Introduction to Rare Voices, Relatable Stories

Our second season of The Kidney Collective™ [https://www.kidneyfund.org/podcast] features conversations about rare kidney diseases and the shared experiences that connect the entire kidney community. Watch the teaser for a sneak preview of what’s ahead in 2026!