When Tracy Dixon-Salazar was a young mother of two she described herself as a mediocre high school student with no real academic or career ambitions. Today, she has a PhD in Neurobiology and Neurosciences, is credited with uncovering the genetic driver of a rare form of childhood-onset epilepsy, and she also identified the first precision therapy for it. Unfortunately, the spark for this remarkable change of course was her daughter Savannah’s battle with Lennox-Gastaut Syndrome (LGS) which caused hundreds of seizures a day, stopped her cognitive development and nearly killed her several times.  It all started thirty years ago at a time when the condition was poorly understood. “Nobody really knew what to do with this kid so I realized I had to fight, I had to become her advocate. You'll do anything for your babies and so I had to become educated,” she explains to host Michael Carrese. Dixon-Salazar moved on from her academic life several years ago to become a full-time advocate as executive director of the LGS Foundation where she works with over 200 gene-specific advocacy groups for rare diseases. “It gives me so much hope. The ability for patients to have a voice in the whole process has changed. Now patients have a platform.” Don’t miss this incredible story of a mother’s persistence that changed the prevailing dogma about epilepsy and LGS and ushered in new approaches to treatment that have affected many children beyond Savannah. 

Mentioned in this episode: https://www.lgsfoundation.org/

If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast