The Kidney Collective

American Kidney Fund

A podcast that gives voice to the many facets of living with kidney disease. Learn more at kidneyfund.org/podcast.

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

    Apr 28

    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™ 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)

    29 min
  2. S2E1: "I Found the Bright Lights and the Silver Linings", with Donna Cryer

    Mar 31

    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™'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

    34 min

Ratings & Reviews

5
out of 5
10 Ratings

About

A podcast that gives voice to the many facets of living with kidney disease. Learn more at kidneyfund.org/podcast.