Seizing Life

This month on Seizing Life® Dr. Kelly Tyson shares her decade-long journey to an epilepsy diagnosis. Despite numerous visits to various medical experts through the years and majoring in neuroscience in college, Kelly was never referred to a neurologist, nor did she recognize the “episodes” she experienced as seizures. Kelly details how she managed these episodes through college, graduate school, and medical school, and reveals the surprising way that she came to realize she was having seizures.

This month Seizing Life® goes on location at the Joey’s Song Freezing Man Festival to speak with Kay Hanley and John Cowsill, two musicians with personal connections to epilepsy who participated in the multiday music festival to raise money for epilepsy research.

Patricia Dean, ARNP and the Epilepsy Network Specialist in the Comprehensive Epilepsy Center at Nicklaus Children’s Hospital in Miami, discusses managing the relationship with your child’s epilepsy care team.

Dr. Madeleine Oudin shares her daughter’s epilepsy journey following a devastating genetic diagnosis and the onset of infantile spasms, and explains how it has impacted her work as a researcher in pursuing a new potential therapy around the SCN8A gene.

Joey’s Song founder Mike Gomoll shares his son’s epilepsy story and discusses the creation, growth, and evolution of Joey’s Song into the multi-artist, multi-day, “Freezing Man Festival.”

In observance of Sudden Unexpected Death in Epilepsy (SUDEP) Action Day on October 16th, we speak with the Maffie family about the tragic loss of Anthony Maffie to SUDEP and their advocacy and fundraising efforts in Anthony’s honor.

This month we welcome Matthew Summerfield to the podcast. Matthew has lived with epilepsy since his first seizure at the age of eleven. Though he was advised early on not to tell anyone about his epilepsy, Matthew has refused to be held back by seizures, studying neurosceience as a college undergraduate, and now pursuing a PhD while working in an epilepsy research lab at the University of Iowa.

This month on Seizing Life® we speak with Dr. Elisa Zanier of the Mario Negri Institute in Milan, Italy about the current state of research into Post-Traumatic Epilepsy (PTE) in the wake of a recent International Conference on PTE co-hosted by CURE Epilepsy.

After losing her son to a rare form of epilepsy called NORSE, or New Onset Refractory Status Epilepticus, Nora Wong set out to get answers from doctors and researchers. When she found little information and more questions, she founded the NORSE Institute to raise awareness and fund research into this sudden and devastating form of epilepsy.