Monika Jones

I abandoned my legal career after my first son was born with a massive unilateral brain malformation that caused him to have drug-resistant seizures since birth. At the tender age of 3 months old he had the left half of his brain removed in an attempt to stop them - a procedure known as a hemispherectomy. Frustrated by the lack of research to help us understand how to help our son, my husband Brad Jones and I originally founded The Brain Recovery Project to initiate and fund research to better understand neurorehabilitation after hemispherectomy surgery. However, as an active member of several social media communities for families of children with intractable epilepsy who require brain surgery, I quickly learned about the underserved and poorly understood community of children who have had epilepsy surgery. At my behest, our board of directors in 2016 agreed to expand the organization’s reach to include all epilepsy surgeries, focusing on helping families understand when it’s time to consider surgery, and offering a host of programs post-operatively. We’ve changed our name to the Pediatric Epilepsy Surgery Alliance to better align with what we are - a powerful alliance of families, health care professionals, and researchers improving the lives of children who need neurosurgery to treat their seizures. I believe in the democratization of medical knowledge because well-informed parents make better health decisions for their children. Check out my research works at ORCID: https://orcid.org/0000-0001-6086-3236