Kathleen Lear

Epilepsy Disease Community Advocate Kathleen Lear.I am a stay-at-home mom to Matthew, born November 2002, diagnosed with intractable epilepsy in October 2008, who is currently treated by epileptologists at Children’s Hospital Orange County (CHOC), and Andrew, who was born February 2004 and is neurotypical.

Matthew has tried 19 drugs, had 2 partial right front lobe resections, had a full corpus callosotomy, has tried modified Atkins diet and the ketogenic diet, and has both a vagus nerve stimulator (VNS) and a deep brain stimulator (DBS) all trying to control his epilepsy. He has had periods of seizure freedom, the longest being a year and a half. We are still trying to find the right combination of medicine and stimulation that will give him seizure freedom again.

I have my bachelor’s degree in social work from the California State University of Fresno. Before becoming a mother, I worked in the nonprofit sector coordinating and facilitating supervised visits and exchanges with families going through a divorce or separation. I also set up childcare for families who were receiving government assistance.

I currently sit as the family adviser for the Neuroscience Unit Clinical Practice Council at CHOC since 2014, as well as being an active participant in the Family Advisory Council since 2015 – serving as chair for the past 4 years. I am a parent partner of the Ambulatory Service Committee and the Acute Care Committee at CHOC. I am also a parent partner for the Community Outreach Parent Empowerment (COPE) program that is run within CHOC’s neuroscience unit. I also have been part of the Cal Optima Whole Child Model Family Advisory Committee since 2019 and as of October 2021 serve as vice-chair.

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