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2016 TASH Conference has ended
Each year, the TASH Conference strengthens the disability field by connecting attendees to innovative information and resources, facilitating connections between stakeholders within the disability movement, and helping attendees reignite their passion for an inclusive world. This year’s conference theme, “Gateway to Equity,” explores inclusive communities, schools, and workplaces that support people with disabilities, including those with complex support needs, in living a fair, just, and balanced life. Return to TASH website.

avatar for Monika Jones, Esq.

Monika Jones, Esq.

The Brain Recovery Project: Childhood Epilepsy Surgery Foundation
CEO
Los Angeles, CA
Monika Jones serves as Chief Executive Officer and is a co-founder of The Brain Recovery Project: Childhood Epilepsy Surgery Foundation. 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. Despite a cocktail of five anti-epileptic medications, Henry was put into a coma at three months old to stop the infantile spasms and other seizures.

Henry required a modified lateral hemispherotomy at three months old to stop his seizures, which unfortunately returned a year later. Despite a revision surgery, his seizures returned again, requiring a third surgery to convert to a true anatomical hemispherectomy.

Monika and her husband Brad Jones originally founded The Brain Recovery Project to initiate and fund research to better understand neurorehabilitation after hemispherectomy surgery. She served as the principal investigator for the R13 grant from the National Institutes of Health to support the 2014 scientific symposium on brain plasticity, hemispheric specialization, and neuro-rehabilitation after cerebral hemispherectomy.

An active member of several social media communities for families of children with intractable epilepsy, she quickly learned how underserved children are after having brain surgery to stop seizures. At her behest, the board of directors in 2016 agreed to expand the organization’s reach to include all resective and disconnective procedures.

For most of her professional career, Monika she was a litigator representing corporations in various matters, including lawsuits brought by employees, insurance coverage disputes, trademark infringement, or other contractual disputes. She has served as assistant general counsel of Luminent, Inc., an optical component manufacturer, general counsel of Brown and Riding Insurance Services, a national wholesale insurance broker, and then as a vice president of Brown and Riding’s casualty division. Ms. Jones abandoned her legal career to care for her son, and then to serve the community of children who have had epilepsy surgery.

She is a graduate University of California at Los Angeles and received her juris doctorate from the University of Southern California. Although no longer practicing law, Monika was recently elected to the board of directors of the Council of Parent and Attorney Advocates, the only national organization for parents and attorneys who represent children with special education needs. There, she serves as co-chair of the Parent Committee. She is a founding board member of Watkins VITAL Care Program, an innovative new program that offers an educational environment for adults with moderate-to-severe autism who have aged out of the school system. She has served on the board of Portals, one of the oldest and largest mental health organizations in Los Angeles which offers mental health services in Central and South Los Angeles.


In 2018, Ms. Jones was nominated by her peers as a Rare Champion of Hope, an award given by Global Genes to honor a person’s notable efforts in rare disease advocacy. She has been nominated again in 2019.

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 function outcomes after epilepsy surgery. She is the project lead for the award from the Patient Centered Outcomes Research Institute for the July 18, 2019, stakeholder meeting to better understand the functional implications of large resective and disconnective epilepsy surgeries.

Ms. Jones lives in Altadena, California, with her husband Brad Jones who also founded the organization, her two sons Henry and Thomas, and two extremely spoiled dogs.

Publications: J Child Neurol