The Jones family in 2017. Henry Jones (left, bottom) had an anatomical hemispherectomy for seizures caused by total hemimegalencephaly.

Epilepsy surgery

is not a last resort

Epilepsy surgery is not a last resort, but there remains a delay to surgery for many children. One reason for this delay is that many parents and clinicians do not understand what will happen after surgery. Will the cognitive trajectory of the child improve? Are there long-term medical side effects to be concerned about? What can be done to improve outcomes?

With your help, we can better understand the functional implications of epilepsy surgery – and how to improve them – to help parents make a well-informed decision on behalf of their child.

We hope this page helps you find the research resources you need. Whether you’re a parent considering surgery for your child or a researcher interested in working with us, there’s something here for you.

Monika Jones, Founder and Executive Director


Helping you get answers

Global Pediatric Epilepsy Surgery Registry

The first patient-powered registry to understand the developmental trajectory after pediatric epilepsy surgery.

Ongoing Research

Our current research collaborations are open to new participants.

Completed Research

Discoveries made by scientists where we inspired, funded, or assisted with participant recruitment for research studies.