Her first son, Henry, was born with total hemimegalencephaly – a rare unilateral brain malformation which caused him to have hundreds of seizures per day short 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.
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.
Ms. Jones is the principal investigator of the Global Pediatric Epilepsy Surgery Registry – the first registry to track functional outcomes after epilepsy surgery.
Chen MF, Meer E, Velez FG, Jones M, Mathern GW, Pineles SL. J Child Neurol. 2019 Apr 7 Etiology and Age Modifies Subjective Visual Function After Cerebral Hemispherectomy. https://www.ncbi.nlm.nih.gov/pubmed/30957613
Audrey is an active member of the Council of Parent Attorneys and Advocates (COPAA). She completed COPAA’s Special Education Advocate Training (SEAT) in 2016 and earned their Advanced Advocate Training Certificate in 2018. Audrey has also worked as a special education advocate for the Community Alliance for Special Education in San Francisco from 2016 until 2018.
Audrey has been recognized on the state and national level for her advocacy in the area of disability rights and empowering parents of children with special needs, as well as her commitment to inclusion and ability awareness. She was Support for Families 2010 Honoree, where she received an award for her community service work through Camp Bennett, a constraint-induced movement therapy camp that she founded and ran in 2010-2011. In addition, she received a Certificate of Recognition from the California State Assemblyman Tom Ammiano in recognition to her “unwavering commitment to… the children of our underserved communities.”
Audrey spent the first 15 years of her career as a photojournalist, author and teacher. Her photographs have appeared in newspapers and magazines worldwide, including The New York Times, USA Today, Time and Newsweek. She published two photography books, ‘Picture the Girl’ and ‘Unveiled,’ which use images and interviews to provide an intimate view of the lives of teenage girls and married couples, respectively. Audrey received a B.A. in journalism from San Francisco State University. She also taught photography at a private high school for 13 years. She lives in San Francisco with her husband and two sons.
Prior to The Brain Recovery Project, Nicole spent seven years at Citizen Schools, a national non-profit dedicated to closing the opportunity gap for low-income kids. Nicole served as the National Director of Growth Strategy & Development and National Director of Corporate Partnerships. Before that, Nicole worked at United Way of America, the national leadership organization for the United Way network, as a Director of Community Impact, and she also spent 3 years with Ashoka, a global organization focused on identifying and investing in leading social entrepreneurs.
Nicole and her husband, Jonathan, have two sons, Declan and Ronan. Ronan, her youngest, underwent a functional hemispherectomy at the age of 10 months at the Children’s Hospital of Philadelphia.