Monika’s 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 went into status epilepticus at three months old and was put into a coma 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. He has struggled with chronic hydrocephalus caused by the first surgery, required five ventriculoperitoneal shunt surgeries, multiple orthopedic procedures, and other challenges.

Frustrated by the lack of research to help them understand how to help their son, Monika and her husband Brad Jones originally founded The Brain Recovery Project to initiate and fund research to better understand neurorehabilitation after hemispherectomy surgery; however, as an active member of several social media communities for families of children with intractable epilepsy who require brain surgery, she quickly learned how underserved children are after having brain surgery to stop seizures.

At her behest, the board of directors in 2017 agreed to expand the organization’s reach to include all epilepsy surgeries, focusing on helping families understand when it’s time to consider epilepsy surgery, and offering a host of programs post-operatively. In 2022, the organization changed its name to the Pediatric Epilepsy Surgery Alliance.

Monika’s journey from mother to advocate for children with epilepsy is captured in Visions, The Inspirational Journeys of Epilepsy Advocates. 

Salim O, Chari A, Ben Zvi I, Batchelor R, Jones M, Baldeweg T, Cross JH, Tisdall M. Patient, parent and carer perspectives surrounding expedited paediatric epilepsy surgery. Epilepsy Res. 2024 Feb;200:107309. doi: 10.1016/j.eplepsyres.2024.107309. Epub 2024 Jan 24. PMID: 38286106.

Lueck, A., Harpster, K., Hartmann, E., Tracy, H. S. C., Jones, M., Legge, R., Kran, B., Ravenscroft, J., & Bauer, C. M. (2023). Toward Removing Barriers in the Evaluation, Diagnosis, and Care of Individuals With Cerebral Visual Impairments. Policy Insights from the Behavioral and Brain Sciences, 10(2), 296-307. https://doi.org/10.1177/23727322231195213

Wiebe, S., Josephson, C., Jones, M. Measuring Epilepsy Surgery Outcomes, invited chapter co-author in Epilepsy: A Comprehensive Textbook (Third Edition), edited by Engel J, Jr. and Moshe, S., (2023).

Puka K, Jones M, Mathern GW. Functional cognitive and language outcomes after cerebral hemispherectomy for hemimegalencephaly. Epilepsia. 2021 Dec;62(12):2932-2940. doi: 10.1111/epi.17088. Epub 2021 Oct 4.

Jones, M., Puka, K., Salorio, C. Disparities in multi-disciplinary rehabilitation after cerebral hemispherectomy: a patient-centered report from the Global Pediatric Epilepsy Surgery Registry. Archives of Physical Medicine and Rehabilitation, Volume 102, Issue 10, 2021, Page e107, ISSN 0003-9993.

Jones M, Harris WB, Perry MS, Behrmann M, Christodoulou J, Fallah A, Kolb B, Musiek F, Paul LK, Puka K, Salorio C, Sankar R, Smith ML, Naduvil Valappil AM, Walshaw P, Weiner HL, Woo R, Zeitler P, Abel TJ. Knowledge gaps for functional outcomes after multilobar resective and disconnective pediatric epilepsy surgery: Conference Proceedings of the Patient-Centered Stakeholder Meeting 2019. Epileptic Disord. 2022 Feb 1;24(1):50-66.

Penn Miller I, Hecker J, Fureman B, et al. Epilepsy Community at an Inflection Point: Translating Research Toward Curing the Epilepsies and Improving Patient Outcomes. Epilepsy Currents. June 2021. doi:10.1177/15357597211024392

Meer EA, Chen MF, Jones M, Mathern GW, Pineles SL. Long-Term Patient-Reported Outcomes of Visual Field Defects and Compensatory Mechanisms in Patients After Cerebral Hemispherectomy. J Neuroophthalmol. 2021 Jun 1;41(2):147-153. doi: 10.1097/WNO.0000000000000998. PMID: 32701758.

Jones, J., Asato, M., Brown, M., Doss, J., Felton, E., Kearney, J., Talos, D., Dacks, P., Whittemore, V. and Poduri, A., 2020. Epilepsy Benchmarks Area IV: Limit Or Prevent Adverse Consequence Of Seizures And Their Treatment Across The Life Span. [Introductory Vignette: A Parent’s Perspective By Monika Jones].

Jones, M., Puka, K., Mathern, G., Speech and cognition after hemispherectomy for hemimegalencephaly: A report from the Global Pediatric Epilepsy Surgery Registry. Poster presented at Annual Meeting of the American Epilepsy Society; 2020 Dec 1 – 5; virtual.

Jones, M., Zeitler, P. Endocrine dysfunction after pediatric epilepsy surgery: a report from the Global Pediatric Epilepsy Surgery Registry. Journal of the Endocrine Society, Volume 4, Issue Supplement_1, April-May 2020, SUN–057.

Chen MF, Meer E, Velez FG, Jones M, Mathern GW, Pineles SL. Etiology and Age Modifies Subjective Visual Function After Cerebral Hemispherectomy.  J Child Neurol. 2019 Apr 7.

Jones, M, Moshe, S., Fallah, A. A web-based, patient-driven (by proxy) registry for pediatric epilepsy surgery: the Global Pediatric Epilepsy Surgery Registry. Poster presented at Annual Meeting of the American Epilepsy Society; 2019 Dec 1 – 5; Baltimore, MD.

Ms. Jones has served on the Rare Epilepsies Network‘s steering committee, the Epilepsy Leadership Council‘s NINDS Epilepsy Benchmarks Stewards Workgroup for 2020, and represents the organization as part of the Child Neurology Foundation’s Infantile Spasms Action Network.

In addition, she represents the organization as part of the Epilepsy Learning Healthcare System’s Community Engagement Core.  She was also a member of the Cortical Vision Impairment CoLab convened by Perkins School for the Blind, a small collaborative working group of researchers, educators, and clinicians working to improve the diagnosis, treatment, and education of children with cerebral vision impairments. She serves on Perkins School for the Blind’s Education Committee, an advisory committee to Perkins’ board of directors.

She is a passionate advocate for the educational civil rights of children with disabilities, serving on the board of directors of the Council of Parent Attorneys and Advocates (COPAA) from 2018 to 2023, and regularly presents at national advocacy and medical conferences about individual education plans, including for COPAA, LGS Foundation, National Organization for Disorders of the Corpus Callosum, DEE-P Initiative, and Epilepsy Awareness Day at Disneyland.

Ms. Jones is the principal investigator of the Global Pediatric Epilepsy Surgery Registry – the first registry to track functional outcomes after epilepsy surgery.

She was the project lead for the innovative meeting Functional Outcomes After Large Resective and Disconnective Epilepsy Surgeries: Identifying Gaps and Setting Patient Centered Outcomes Research Priorities funded in large part by an almost $50,000 Eugene Washington Engagement Award from the Patient Center Outcomes Research Institute.

In 2014, she was the principal investigator of the scientific workshop on brain plasticity, hemispheric specialization, and neurorehabilitation after cerebral hemispherectomy, funded by a R13 grant from the National Institutes of Health.

Jones, M., Salorio, C., Gordon, A., Shaw., S. “Neurorehabilitation After Cerebral Hemispherectomy”, symposium presentation given at the annual meeting of the American Congress of Rehabilitation Medicine, September 28, 2021 (virtual).

Jones, M., Smith, M., Abel, T., Perry, M.S., “Functional and Medical Outcomes After Large Pediatric Epilepsy Surgeries: Neurodevelopment, Medical Comorbidities and Surveillance, and Managing Parental Expectations”, investigator workshop at the annual meeting of the American Epilepsy Society scheduled for December 5, 2021, Chicago, IL, with Mary Lou Smith, PhD., Taylor Abel, MD, and M. Scott Perry, MD.

Lawrence, L., Jones., M. (2018, July 25-29). Vision After Brain Surgeries Which Remove An Occipital Lobe [conference presentation]. Association for the Education and Rehabilitation of the Blind and Visually Impaired. Reno, CA, United States.

M. Jones, 2019 (July  5 – 6). Epilepsy Surgery Symposium, FLENI Institute, Buenos Aires, Argentina.

Bennett, R.,  Jones, M., Raimondo, B., Silverstein, B. (2019, July 11-12). [conference panelist]. Cortical Vision Impairment Symposium, Perkins School for the Blind, Watertown, MA, United States.

M. Jones, A. Vernick. (2020, March 3 – 5). Building Your Child’s IEP: A Step-By-Step Guide for Beginners [conference presentation]Council of Parent Attorneys and Advocates.

M. Jones (2019, June 1). Building Your Child’s IEP: A Step-By-Step Guide [ conference presentation]. National Organization for Disorders of the Corpus Callosum., Irvine, CA., United States.

“3D Printed Assistive Devices For Differently-Abled Children” presentation given at the Global Genes Rare Patient Impact Advocacy Summit, September 2017, Irvine, California. Co-presenter Peter Binkley.

The Nonprofit Optimist: Episode 011 – Becoming an expert 

Who Lives Like This: Changing the way the world looks at our children (June 1, 2020)

Don’t IEP Alone: IEPs, seizures, and research (March 3, 2020)

In 2018 and 2019, 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.

For most of her professional career, Monika 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 abandoned her legal career in 2011 after founding the organization.

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.

The Jones family in 2017
Ms. Jones in the ICU with her son, Henry, after his modified lateral hemispherotomy at three months old.
Ms. Jones’ son, Henry, at one year old.