Monika Jones, an inactive lawyer, is our founder and executive director. Her first son, Henry, had a modified lateral hemispherotomy, revision surgery, then true anatomical hemispherectomy to stop seizures caused by total hemimegalencephaly. She is also the principal investigator of the Global Pediatric Epilepsy Surgery Registry, the only parent-reported data collection to understand the developmental trajectory after pediatric epilepsy surgery. A strong believer in collaboration, she serves on the Pediatric Epilepsy Research Consortium‘s Research committee, the ILAE Neurobiology Commission’s Research Advocacy Task Force, and is an active member of the Rare Epilepsy Network and the Infantile Spasms Action Network. You can review her publications as well as contributions to collaborative research and advocacy projects at orcid.org/0000-0001-6086-3236.