S2E9 Tracy Dixon-Salazar: A Mother’s Journey to Reveal the Science of her Daughter’s Epilepsy

In this episode of Let’s Talk About That, Anirvan Ghosh speaks with Tracy Dixon-Salazar—neuroscientist, geneticist, and one of the most powerful advocates working to transform how we understand severe childhood epilepsy.Tracy’s journey began as a mother. When her daughter Savannah was two and a half, she began having unexplained seizures that eventually developed into Lennox-Gastaut syndrome (LGS)—a rare and devastating form of childhood epilepsy marked by multiple seizure types, developmental challenges, and a high risk of premature death. Determined to understand what was happening to her child, Tracy returned to school, eventually earning a PhD in neuroscience. Her scientific training helped uncover the genetic mechanisms underlying Savannah’s epilepsy and led to a precision-medicine insight that dramatically reduced her daughter’s seizures—giving Tracy a decade in which she could truly reconnect with her child.Today, Tracy serves as Executive Director of the Lennox-Gastaut Syndrome Foundation, where she is pushing the field to move beyond symptom control toward treating epilepsy at its biological roots.This conversation explores the intersection of science and lived experience—and how one mother’s determination is reshaping the future of rare disease research.