About me
Monika Jones is an inactive attorney and founder/executive director of the Pediatric Epilepsy Surgery Alliance. Her first son, Henry, was born with total hemimegalencephaly that caused medication-resistant seizures starting in utero. He required multiple hemispheric surgeries as well as five surgeries to place and replace a VP shunt. She has firsthand experience navigating the neurology space as well as the maze of programs and services that support her son. Monika's advocacy champions the democratization of health information and the use of plain language in healthcare, emphasizing the importance of clear and straightforward communication in helping families understand and manage complex medical conditions.
She is also the principal investigator of the Global Pediatric Epilepsy Surgery Registry, a unique initiative that is the only patient-driven (by parent proxy) data collection effort aimed at understanding developmental outcomes following epilepsy surgery in children. Her advocacy work and research collaborations have been featured in the New York Times, People Magazine, NPR, the Netflix documentary series 'Diagnosis’, and the documentary Life With Half A Brain.
Monika amplifies the voice of our community by presenting research and speaking at national medical conferences, including annual meetings of the Congress of Neurological Surgeons Pediatric Section, American Epilepsy Society, American Academy of Audiology, American Congress of Rehabilitation Medicine, and Child Neurology Society. She has also contributed to numerous peer-reviewed publications, including a manuscript in the high-impact medical journal "Epilepsia" and a chapter in the authoritative "Epilepsy: A Comprehensive Textbook." You can review her research publications at https://orcid.org/my-orcid?orcid=0000-0001-6086-3236.
She is the former board secretary of the Council of Parent Attorneys and Advocates, the largest advocacy organization advocating for the educational rights of children with disabilities, and serves on the education committee for Perkins School for the Blind, the Pediatric Epilepsy Research Consortium’s Research Committee, and the International League Against Epilepsy’s Neurobiology Commission, Research Advocacy Task Force.
