The Kidney Collective

Malkia White, an AKF Ambassador and member of AKF's Rare Kidney Disease Action Network (RKDAN), joins this episode of The Kidney Collective™ 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' 'We go through a lot': Life with a rare kidney disease Kidney donation and transplant Life after transplant: Rejection prevention and healthy tips  Kidney health research and innovations Mental health and kidney disease Rare Kidney Disease Action Network Unknown Causes of Kidney Disease Project IgA Nephropathy Foundation 

In honor of APOL1-Mediated Kidney Disease (AMKD) Awareness Day, this special episode of The Kidney Collective™ 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 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 APOL1-Mediated Kidney Disease APOL1 genetic counselor guide Focal segmental glomerulosclerosis (FSGS) 

The Kidney Collective™ 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. 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) Caring for someone with kidney disease Kidney disease in children Camp ConnectionsKidney Kitchen® Genetic testing and counseling for kidney disease 

AKF President and CEO LaVarne Burton kicks off the first episode of The Kidney Collective™'s new season, "Rare Voices, Relatable Stories," with a conversation with Donna Cryer, founder of the Global Liver Institute, 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 NetworkRare kidney diseases: Understanding, support and solutionsGlobal Liver InstituteJoin our Advocacy NetworkUnknown Causes of Kidney Disease ProjectNewly diagnosed chronic kidney disease (CKD)Guide: Talking about your rare kidney diseaseGuide: Your Guide to Kidney Transplant

Our second season of The Kidney Collective™ 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!

In this episode of The Kidney Collective™, Tamara and Mike chat with living kidney donor Marnisha Mintlow about her decision to donate her kidney, her surgery and recovery, the barriers and fears that may prevent people from becoming donors, and the importance of more transparency around the kidney donation process. Marnisha emphasizes the need for more support and advocacy for living donor rights and protections, and the significance of finding help and a found family within the kidney community.Marnisha is a Marine Corps veteran and a current educator living in Santa Clarita, California, who recently graduated with her doctorate in education from the University of Dayton. In 2016, she made the selfless choice to become a living kidney donor.More resources: Kidney donation and transplantYour Guide to Kidney TransplantTypes of living donor kidney transplantsLiving Donor Protection Report CardFinancial support for living kidney donors

In this episode of The Kidney Collective™, Tamara and Mike talk with Leigh-Ann Williams about her dialysis journey—from in-center to home dialysis. They discuss the benefits of home dialysis, including the more flexible schedule, shorter treatment times and reduced fluid restrictions compared to in-center dialysis. Leigh-Ann also describes some of the challenges of home dialysis, from space for supplies to learning to navigate the many alarms, but encourages others considering it to not be intimidated. The three dive into how Leigh-Ann crashed into dialysis but eventually came to understand her diagnosis of focal segmental glomerulosclerosis (FSGS), lupus and APOL-1-mediated kidney disease (AMKD). Despite her kidneys failing at such a young age, Leigh-Ann has not allowed dialysis to slow her down! She has earned two masters degrees and traveled as far as Hawaii and the Bahamas and hopes to fulfill her goal of going on a cruise soon—all while receiving dialysis treatments.Leigh-Ann Williams is an AKF Ambassador and Kidney Health Coach from New Orleans who lives with kidney failure and is on home dialysis. She is an active advocate for the kidney community and was honored for her great work as the 2021 AKF Hero of Hope.More resources:Home dialysisDialysis at Home 2025Acute kidney injuryChoosing a hemodialysis treatment planFocal segmental glomerulosclerosis (FSGS)APOL1-mediated kidney diseaseUnknown Causes of Kidney Disease (UCKD) ProjectLupusGenetic testing

In this episode of The Kidney Collective™, Tamara and Mike talk with Robert “Buzz” Buchanan about his experience living with type 2 diabetes and stage 3 chronic kidney disease (CKD)—and their shared love of Jimmy Buffett. He was diagnosed with diabetes in 1998 and has managed his CKD for over 10 years, keeping it from progressing to kidney failure. In the face of the unique physical and mental challenges of a chronic disease, Buzz advises others to "not panic” and shares how he has managed his conditions through lifestyle changes, medicines and regularly monitoring his health with routine testing. The three also discuss the connection between heart, kidney and metabolic health and share the benefits of participating in clinical trials. Buzz emphasizes how important it is for people to have access to clinical trials and the latest medicines and treatments.Robert "Buzz" Buchanan is a fifth-generation resident of San Diego, California where he has lived his whole life. He was an orthopedic technician for 30 years and has been retired since 2015.More resources:Cardiovascular-kidney-metabolic (CKM) syndromeDiabetesMedicines to manage kidney diseaseTests for kidney diseaseKnow Your Kidneys®Clinical trials for kidney disease and other kidney diseasesKidney Action Week®Kidney Failure Risk Equation

In this episode of The Kidney Collective™, Tamara and Mike chat with Mary-Beth Roberts, a pediatric and adult genetic counselor, about the role of genetic counselors, the importance of genetic testing in kidney disease, and the impact of genetic information on patients' treatment plans. Mary-Beth shares insights on the APOL1 gene variants, the process of genetic testing, facing barriers and improving access to genetic counseling, the future of genetics in nephrology, and the need for increased public awareness.Mary-Beth specializes in renal genetic counseling at the Cleveland Clinic and is the co-founder of the National Society of Genetic Counselors (NSGC) Renal Genetics special interest group. She is involved in various national and international initiatives to promote better understanding of kidney genetics. We were honored to have Mary-Beth participate in a roundtable discussion on Capitol Hill for AKF’s inaugural APOL1-Mediated Kidney Disease (AMKD) Awareness Day in 2024.More resources:Genetic testing and counseling for kidney diseaseKidney health innovations and researchAPOL1-Mediated Kidney Disease (AMKD)Family history and kidney diseasePrimary hyperoxaluriaMixed & Edited by Next Day [email protected]

In this episode of The Kidney Collective™, Tamara and Mike welcome Emmitt Henderson III, a passionate advocate for lupus awareness. Emmitt discusses his personal journey with lupus and kidney disease, the challenges he faced, and the importance of prioritizing mental health and seeking support. He dives into the creation of his nonprofit organization, Male Lupus Warriors, recounts his experience climbing Mount Kilimanjaro, and emphasizes how critical it is to participate in clinical trials.Born in the Philippines and raised in San Diego, Emmitt was diagnosed with lupus in 1995 after years of undiagnosed symptoms. Despite facing severe health challenges, including chemotherapy, a kidney transplant and organ failures, he stayed active in the automotive industry. Through Male Lupus Warriors, Emmitt raises awareness of lupus, particularly among men, and promotes a positive mindset, proper care and support. His work has earned him multiple honors, including the Gibson Lupus ARC King title in 2020 and the Advocacy Trailblazer Award from the State of Georgia in 2024.To find out more about Emmitt's advocacy work and upcoming local events, follow along on Instagram at @malelupuswarrior1. Emmitt is also currently in need of a living kidney donor. For more information, please visit his website here.More resources:Mental health and kidney diseaseClinical trials for kidney diseaseLooped in on LupusCommunity ResourcesMixed & Edited by Next Day Podcast

In this episode of The Kidney Collective™, Tamara and Mike speak with AKF Ambassador, Nichole Jefferson, about her kidney disease diagnosis, experiences with dialysis and transplant, the importance of seeking answers about your physical health, and how to take care of your mental and emotional health. Mike and Tamara also find out that contrary to our preliminary research, Nichole is NOT a Dallas Cowboys fan...but she is a very good sport about it.Nichole learned she had kidney disease in 2003 when she crashed into kidney failure. However, she did not find out she has a rare kidney disease, IgA nephropathy, until 20 years later. She has an unwavering commitment to driving change, fostering awareness and amplifying patient voices within the health care landscape, and educating and uplifting the Black community on the topic of kidney health.More resources:Kidney Health for AllIgA NephropathyKnow Your CauseGenetic testing and counseling for kidney diseaseMixed & Edited by Next Day [email protected]

In this episode of The Kidney Collective™, hosts Tamara Ruggiero and Mike Spigler speak with Alex Simmons, a kidney transplant recipient and fitness instructor, about his unexpected journey with kidney disease. Alex shares his experiences from diagnosis to dialysis, the challenges he faced, and the importance of raising awareness about kidney health. Alex Simmons is an athlete, fitness instructor, “girl dad” and kidney transplant recipient. He is the owner of the Pray Focus Grind gym in Pittsburgh, Pennsylvania. Despite having been in exceptional shape his whole life, he unexpectedly was diagnosed with kidney failure on February 1, 2023. He is active in spreading awareness for kidney disease and has even worked with AKF on our AMKD Awareness Day initiative.Listeners can follow Alex on X, Instagram and TikTok at @AverageBlackMan.More resources:Mental health and kidney diseasePhysical activity and kidney healthAPOL1-Mediated Kidney Disease (AMKD)AKF's Know Your Case campaignTests for kidney diseaseMixed & Edited by Next Day [email protected]

Welcome to The Kidney Collective™, American Kidney Fund’s limited series featuring unscripted conversations with someone who shares their journey—from what it's like to crash into dialysis to becoming a living donor. Whether you're living with kidney disease yourself or caring for someone who is, join us for a personal look at what life is like in The Kidney Collective and come away with information and inspiration to help you know how to take charge of your kidney health.