When Your Loved One Has Kidney Failure:

Tamara and Mike are joined on this episode by a mother-daughter duo: Kelly Harris-DeBerry and Naomi DeBerry. Kelly’s husband and Naomi’s father, Jarvis, was diagnosed with kidney failure and began doing home dialysis treatments in 2019. In February 2020, he received a new kidney from a living donor. In this episode, we talk with Kelly and Naomi about the impact of Jarvis’s kidney disease journey on their lives. Kelly shares how she and Jarvis navigated his focal segmental glomerulosclerosis diagnosis when they were still newlyweds; the challenges they faced deciding when and how much to share with others, including their daughter; and the stress and isolation she felt before she allowed herself to lean on her community. Naomi also explains how she didn’t necessarily understand what her dad was going through, but that she could sense the fear and stress when he began at home dialysis when she was six years old. Kelly and Naomi share how Disney World® became “the happiest place on Earth” in a different way when Jarvis learned he would get a new kidney on their trip, and how Naomi was inspired by their family’s journey to write a book, “My Daddy Needs a Gift.” They also tell the hosts about Naomi’s love for LEGO builds and ambitions to become a transplant surgeon. 

More resources:

• Mental health and kidney disease
• Caring for someone with kidney disease
• Focal segmental glomerulosclerosis (FSGS)
• Home dialysis
• Kidney donation and transplant
• Naomi DeBerry’s author site

When You're Adjusting to Your Diagnosis:

AKF President and CEO LaVarne Burton kicks off a new season of The Kidney Collective focusing on the mental health impact of kidney disease by interviewing Dr. Molly Kierein. Dr. Kierein is a licensed clinical psychologist in California and the founder of the Kidney Psychologist, which provides individual and group therapy for kidney patients living in California. Dr. Kierein shares her Alport syndrome diagnosis, which led to kidney failure, a kidney transplant and ultimately, to a new direction for her clinical practice. She explains how surprised she was to realize how few mental health resources are available to kidney patients and how she decided to pursue the lesser-known field of renal psychology, with the goal of seeing exclusively kidney disease patients someday. Dr. Kierein and LaVarne also talk about some of the common mental health struggles people with kidney disease face at each stage of the disease—including symptom, education and decision burden; feelings of powerlessness; and getting comfortable in your own body again with a new organ. 

More resources:

• Alport syndrome
• Mental health and kidney disease
• Your kidney care team
• Balancing work, family & travel
• Kidney donation and transplant
• Types of living donor kidney transplants
• Immunosuppressant (anti-rejection) medicines
• Kidney Psychologist
• The Hope Line

On this episode of The Kidney Collective, Mike Spigler is joined by guest co-host, Dr. Pranav Garimella, a nephrologist and AKF’s chief medical officer. They interview special guest Dr. Chiadi Ndumele, director of obesity and cardiometabolic research, director of the Heart Failure Prevention Program and associate professor of medicine and epidemiology in the Division of Cardiology at Johns Hopkins University. Dr. Ndumele serves as chair of the cardiovascular-kidney-metabolic (CKM) syndrome guideline writing group. For his leadership efforts related to CKM health, Dr. Ndumele was awarded the American Heart Association Award for Meritorious Achievement in 2024.  

The three discuss what CKM syndrome is and why the guideline, released in June 2026 by the American Heart Association and American College of Cardiology, is an important step to addressing the rise of multiple chronic conditions in the U.S. Dr. Ndumele walks through the stages of CKM syndrome and explains how identifying the syndrome is not about labeling people, but reflecting what healthcare professionals are seeing in patients. The guideline is part of an effort to address the interconnected nature of heart, kidney and metabolic conditions (including diabetes and obesity) to improve patient outcomes overall. They also discuss the new PREVENT equation, a tool that patients and clinicians can use to determine someone’s risk and CKM stage. Finally, they talk about new therapies like GLP-1s and SGLT2 inhibitors and the importance of community-based health education programs and clinicians having a compassionate, nonjudgmental approach to help improve health outcomes. 

Our thanks to the American Heart Association for helping bring this crucial conversation on cardiovascular-kidney-metabolic health to The Kidney Collective!  

More resources:

• CKM syndrome (AKF) 
• CKM syndrome (AHA) 
• New CKM syndrome guideline: What it means for kidney health
• AHA PREVENT™ Equation 
• CKM guideline 
• Heart disease and CKD 
• GLP-1 RAs  
• SGLT2 inhibitors 
• Kidney Health Coach® 
• Kidney Health Coach: All in This Together: The CKM connection 

Mike and Tamara are joined by Ellie Kugler, an AKF Ambassador, Kidney Health Coach and bodybuilder who is living with Alport syndrome and lupus. Ellie talks about the difficulty she faced getting a diagnosis and how the relatively new understanding of Alport syndrome—along with misconceptions about who it can affect—played a role. Ellie describes how she started educating herself and others about her disease, participating in clinical trials and talking to legislators on Capitol Hill. She also shares the bittersweet story of her kidney transplant, which was a directed donation from a deceased donor. 

More resources:

• Alport syndrome 
• 'Do the hard work': How AKF Ambassador and bodybuilder Ellie Kugler navigates living with Alport Syndrome 
• Genetic testing and counseling for kidney disease 
• Kidney biopsy 
• Proteinuria (protein in the urine) 
• Hematuria (blood in the urine) 
• AKF Ambassador network 
• Become a Kidney Health Coach 

Mike and Tamara talk with Della Major, an AKF Ambassador, Kidney Health Coach, teacher and life coach who is living with lupus nephritis. As a self-proclaimed “squawker”, Della is practiced in sharing her story of learning about both kidney disease and lupus while navigating the grief associated with this change in her health. She describes her initial resistance to starting dialysis, but how an experience with another patient at her center helped turn her mindset around. 

Della also talks about receiving a “high risk” kidney for her first transplant and the challenges associated with a treatment that is often talked about like a cure. Della explains how she is “here to change the game,” through educating her community, advocating for kidney legislation and sharing her story so others know they are not alone in their kidney disease journeys.  

More resources:

• Looped In on Lupus Nephritis 
• AKF Ambassador network 
• Become a Kidney Health Coach 
• Mental health and kidney disease 
• End-stage renal disease (ESRD) or kidney failure 
• Life after transplant 
• Health Insurance Premium Program (HIPP) 

Tamara and Mike are joined by Marc Coronel, the founder of Lifestyle Athletics, a former amateur professional boxer and a TEDx speaker. He is living with focal segmental glomerulosclerosis (FSGS) — a rare type of kidney disease that causes scarring on the glomeruli (the filters in your kidneys) — and is a kidney transplant recipient. The three talk about how surprised he was to learn he had kidney disease, and Marc explains how his training as a boxer has provided a framework for helping him push through the day-to-day challenges. 

They discuss his drive to get all the information he could about his health, how he went through the stages of grief after his diagnosis and how vital it is to find people who can relate in a way that no one else can (even your loved ones). Marc shares advice for others living with chronic illnesses like his and encourages them to be vocal, because silence nearly cost him everything.

More resources: 

• Focal segmental glomerulosclerosis (FSGS) 
• Genetic testing and counseling for kidney disease 
• AKF Ambassador network 
• Become a Kidney Health Coach 
• Mental health and kidney disease 
• Kidney biopsy 

Tamara Walker joins Tamara and Mike for a conversation about polycystic kidney disease (PKD), a genetic condition that causes many cysts to grow inside your kidneys and can lead to kidney failure. Tamara shares how she was surprisingly diagnosed by her OBGYN after giving birth to her second son, the challenges she experienced with insurance coverage and how PKD factored into the difficult decision of moving from Virginia to Georgia. They also talk about how Tamara has become one of the most active patient advocates, as an AKF Ambassador and Kidney Health Coach, a speaker at AKF’s Unknown Causes of Kidney Disease Summit and recipient of one of AKF’s first-ever Ambassador Community Engagement grants—all of which earned her the 2025 Hero of Hope award. 

Tamara gives the audience advice on navigating PKD, dealing with dismissive doctors and getting involved in kidney disease advocacy.  

More Resources:

• Polycystic kidney disease 
• Kidney cancer 
• AKF Ambassador network 
• Become a Kidney Health Coach 
• Genetic testing and counseling for kidney disease 
• Insurance and costs for dialysis 
• PKD Foundation 

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 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 Connections
• Kidney Kitchen® 
• Genetic testing and counseling for kidney disease