avatar for Monika Jones, Esq.

Monika Jones, Esq.

The Brain Recovery Project
Executive Director
Los Angeles, CA
Monika Jones is founder and Executive Director of The Brain Recovery Project. Her first son, Henry, was born with total hemimegalencephaly – a rare unilateral brain malformation which caused him to have hundreds of seizures per day shortly after birth. The seizures included infantile spasms, a catastrophic epilepsy which can result in profound intellectual and motor impairment if not stopped early. Henry required multiple hemispheric surgeries, the first at three months old.

Ms. Jones is the principal investigator of the Global Pediatric Epilepsy Surgery Registry - a prospective and retrospective study, powered by parents of children with epilepsy, to better understand the developmental trajectory after surgery. She was the project lead for the award from the Patient Centered Outcomes Research Institute for the innovative 2019 stakeholder meeting to better understand the functional implications of large resective and disconnective epilepsy surgeries.

She has co-authored several papers published in peer reviewed medical journals and has presented in symposiums and workshops at the American Congress of Rehabilitation and the American Epilepsy Society. Frequently invited by patient advocacy groups to speak about epilepsy surgery or individual education plans, Ms. Jones is committed to advocacy and collaboration. She serves on the board of directors of the Council of Parent Attorneys and Advocates, is on the education committee for Perkins School for the Blind.

She lives in Altadena, California, with her husband, Brad Jones, sons Henry and Thomas, and two very bad dogs.