The KCNA2 & Rare Epilepsy’s Podcast

In this episode of the KCNA2 and Other Rare Epilepsies Podcast, Nancy speaks with McKayla Leber, a KCNA2 mom, board member, and Air Force spouse. McKayla shares her family’s journey raising her son Aaron, now 11, while navigating frequent military moves and repeatedly rebuilding specialty care from the ground up. Aaron’s seizures began at just 7 weeks old. McKayla describes the early emergency vis...

In this episode, Nancy speaks with leaders from the Rare Epilepsy Network (REN) about what it truly takes to move rare epilepsy research forward. She is joined by Eileen Miller, Director of REN and longtime parent advocate, and Karen Utley, Chair of REN’s Coordinating Committee and President and Co-Founder of the International Foundation for CDKL5 Research. Karen’s daughter, Samantha, who lives wi...

In this episode, Barbara Wolf shares her family’s journey with KCNA2-related epilepsy as the mother of Ella, now an adult living with the condition. Barbara reflects on the earliest signs that something was not typical, including subtle blinking episodes that were later recognized as possible seizures, developmental shifts, and persistent crying that raised early concerns. She describes years of m...

In this episode of the KCNA2 and Other Rare Epilepsies Podcast, Nancy speaks with Oriana Hornick, a longtime KCNA2 community member, KCNA2 Epilepsy Foundation board member, and research coordinator. Oriana is also the mother of Avery, now 9, who was diagnosed with KCNA2-related epilepsy in infancy. Oriana walks through Avery’s early medical journey, including seizure concerns within hours of birth...

In this episode of the KCNA2 and Other Rare Epilepsies Podcast, Nancy Musarra is joined by two emergency room physicians, Dr. Katie Robottom and Dr. Rosetta Robottom, a mother-daughter team with decades of combined experience caring for patients with seizures in the ER. Together, they provide a clear and practical look at what actually happens when someone arrives in the emergency department after...

The KCNA2 and Rare Epilepsy Podcast If your child has seizures and a KCNA2 diagnosis, life can feel confusing, isolated and scary. The KCNA2 and Rare Epilepsy Podcast, hosted by Dr. Nancy Musarra, is a supportive, parent-informed show for parents, caregivers, clinicians, and researchers living and working with KCNA2-related epilepsy and neurodevelopmental disorders (and the wider rare epilepsy com...