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Podcast Appearances

See below for podcast appearances featuring Alport syndrome patients/medical professionals.

The podcasts appear in reverse chronological order, with the most recent appearing at the top of the page.

Below, Rachel, a 2023 Paul Silver Enrichment Award recipient, shares her patient journey.

Below, Jennie Feiger, PA-C, discusses X-Linked Alport syndrome.

Below, ASF Board Member December West shares her family’s Alport syndrome journey with the collectively coeXisting podcast.

Below, TJ Mayfield (ASF Emerging Leadership Council) conducts an interview with ASF Executive Director Lisa Bonebrake about Alport syndrome awareness and education.

Below: Dr. AC Gomez discusses Alport syndrome, medications, and how to successfully transition from pediatric to adult care.

Below: ASF Associate Director, Kevin Schnurr, experienced renal failure at age 26 that turned his life upside down overnight. He talks about the experience of diagnosis, subsequent dialysis for two years, and receiving a living donor transplant from a close friend.

Below: Dr. Matt Hall is a consultant kidney physician in Nottingham with an interest in rare and inherited kidney diseases, pregnancy and kidney disease, and clinical trial delivery. He talks about working with patients with rare kidney diseases, his passion for the rare community, and how he thinks clinicians and patient groups can build and sustain relationships.

Below: Interview with Megan Dunleavy, a female patient with (X-linked) Alport syndrome and current medical school student with a special interest in genetics and nephrology.

Below: Interview with Janine Reed, a retired nurse, ASF Board Member, and female patient with (X-linked) Alport syndrome.

Below: Interview with Afton DeLucca, a female patient with (X-linked) Alport syndrome. Afton currently serves as ASF’s Patient Engagement Coordinator.

Below: Interview with Cassie Smith, a female patient with (X-linked) Alport syndrome. Cassie currently serves as a member of ASF’s Emerging Leadership Council.

Below: Clifford Kashtan, MD and Michelle Rheault, MD give the inside scoop on Alport syndrome – when to consider the diagnosis, the role of a biopsy and genetic testing, benefits of early treatment, and surveillance and management strategies.

Below: Cassie Smith shares her journey of rare disease from the perspective of patient, parent, and nurse.

Note: Episode 260 of the “On-Air Advocate” podcast features Alport teens/young adults. A video recording of the podcast is available on YouTube.

Below: Listen in as Kevin Schnurr shares his personal journey with Alport syndrome and discusses Alport Syndrome Foundation and its resources.

Below: Grant Bonebrake discusses his Alport syndrome journey as a young adult.

Below: In 2012, at the age of 26, Kevin Schnurr was unexpectedly diagnosed with Alport syndrome after being rushed to the hospital with high blood pressure. Hear his Alport syndrome journey.

Additionally, Alport syndrome patient, Ari Decherd, and his wife, Larra Morris, recorded a 33-episode series, “The Kidneycast,” from 2016-2019. You can listen to all “The Kidneycast” episodes at this link.