S2E8: "You Turn Your Pain Into Purpose", Alport Syndrome with Ellie Kugler

S2E8: "You Turn Your Pain Into Purpose", Alport Syndrome with Ellie Kugler

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 [https://www.kidneyfund.org/all-about-kidneys/other-kidney-diseases/alport-syndrome]  * 'Do the hard work': How AKF Ambassador and bodybuilder Ellie Kugler navigates living with Alport Syndrome [https://www.kidneyfund.org/article/do-hard-work-how-akf-ambassador-and-bodybuilder-ellie-kugler-navigates-living-alport-syndrome]  * Genetic testing and counseling for kidney disease [https://www.kidneyfund.org/all-about-kidneys/tests/genetic-testing-and-counseling]  * Kidney biopsy [https://www.kidneyfund.org/all-about-kidneys/tests-for-kidney-disease/kidney-biopsy]  * Proteinuria (protein in the urine) [https://www.kidneyfund.org/all-about-kidneys/other-kidney-problems/protein-urine]  * Hematuria (blood in the urine) [https://www.kidneyfund.org/all-about-kidneys/other-kidney-problems/blood-urine-hematuria]  * AKF Ambassador network [https://www.kidneyfund.org/government-affairs-advocacy/join-our-advocacy-network]  * Become a Kidney Health Coach [https://www.kidneyfund.org/get-involved/kidney-health-coach]

S2E7: "My Will to Live is Stronger Than This Disease", Lupus Nephritis with Della Major

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 [https://www.kidneyfund.org/all-about-kidneys/other-kidney-diseases/lupus-nephritis-symptoms-treatment-and-complications]  * AKF Ambassador network [https://www.kidneyfund.org/government-affairs-advocacy/join-our-advocacy-network]  * Become a Kidney Health Coach [https://www.kidneyfund.org/get-involved/kidney-health-coach]  * Mental health and kidney disease [https://www.kidneyfund.org/living-kidney-disease/mental-health-and-kidney-disease]  * End-stage renal disease (ESRD) or kidney failure [https://www.kidneyfund.org/all-about-kidneys/kidney-failure-symptoms-and-causes]  * Life after transplant [https://www.kidneyfund.org/kidney-donation-and-transplant/life-after-transplant-rejection-prevention-and-healthy-tips]  * Health Insurance Premium Program (HIPP) [https://www.kidneyfund.org/get-assistance/health-insurance-premium-program]

S2E6: "The Hardest Punch I Ever Took", FSGS with Marc Coronel

Tamara and Mike are joined by Marc Coronel, the founder of Lifestyle Athletics, a former amateur professional boxer and a TEDx speaker [https://tedxlogancircle.com/marc-coronel/]. 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) [https://www.kidneyfund.org/all-about-kidneys/other-kidney-diseases/focal-segmental-glomerulosclerosis-fsgs-symptoms-causes-and-treatment-0]  * Genetic testing and counseling for kidney disease [https://www.kidneyfund.org/all-about-kidneys/tests/genetic-testing-and-counseling]  * AKF Ambassador network [https://www.kidneyfund.org/government-affairs-advocacy/join-our-advocacy-network]  * Become a Kidney Health Coach [https://www.kidneyfund.org/get-involved/kidney-health-coach]  * Mental health and kidney disease [https://www.kidneyfund.org/living-kidney-disease/mental-health-and-kidney-disease]  * Kidney biopsy [https://www.kidneyfund.org/all-about-kidneys/tests-for-kidney-disease/kidney-biopsy]

S2E5: "This is My Second Life", PKD with Tamara Walker

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 [https://www.kidneyfund.org/all-about-kidneys/types-kidney-diseases/polycystic-kidney-disease]  * Kidney cancer [https://www.kidneyfund.org/all-about-kidneys/other-kidney-problems/kidney-cancer]  * AKF Ambassador network [https://www.kidneyfund.org/government-affairs-advocacy/join-our-advocacy-network]  * Become a Kidney Health Coach [https://www.kidneyfund.org/get-involved/kidney-health-coach]  * Genetic testing and counseling for kidney disease [https://www.kidneyfund.org/all-about-kidneys/tests/genetic-testing-and-counseling]  * Insurance and costs for dialysis [https://www.kidneyfund.org/resource/insurance-and-costs-dialysis]  * PKD Foundation  [https://pkdcure.org/]

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 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/]