Monika Jones, Founder and Executive Director of the Pediatric Epilepsy Surgery Alliance (PESA) and Principal Investigator of the Global Pediatric Epilepsy Surgery Registry, will present “The Pediatric Epilepsy Surgery Alliance Registry: Hemispherectomy Outcomes” at the Hemispherectomy Foundation Australia’s HemiCon Australia 2025.
This session will highlight findings from the Global Pediatric Epilepsy Surgery Registry, a research initiative collecting data from families worldwide to better understand life after epilepsy surgery. The registry aims to answer critical questions about long-term outcomes, post-surgical therapies, and challenges that may arise after epilepsy surgery.
Key Topics Include:
- Long-term developmental and functional outcomes after hemispherectomy
- Effective post-surgical therapies and interventions
- Unrecognized symptoms and medical issues reported by families
- The impact of epilepsy surgery on quality of life
- How registry data can drive improvements in care and research
About Monika Jones
Monika’s dedication to epilepsy surgery advocacy is deeply personal. Her son, Henry, was born with total hemimegalencephaly, a rare brain malformation that caused him to have hundreds of seizures per day beginning in infancy. Despite multiple medications, Henry experienced status epilepticus at three months old, leading to an emergency modified lateral hemispherotomy. When his seizures returned, he required two additional hemispherectomy surgeries, resulting in chronic hydrocephalus, multiple shunt procedures, and other medical challenges.
Frustrated by the lack of research and resources for post-surgical care, Monika and her husband founded The Brain Recovery Project, which later evolved into the Pediatric Epilepsy Surgery Alliance. Today, she is a leading advocate for improving epilepsy surgery education, access, and long-term support for families worldwide.
