What we learned about mortality in epilepsy
“This meeting lays bare the true risk of living with epilepsy.” - PAME co-chair Gardiner Lapham I attended my first PAME meeting in 2022. That was a tough meeting, and I cried. Several parent
Understanding Memory After Hemispherectomy: Insights and Outcomes
Exploring hemispherectomy and its impact on memory Many parents are cautious about allowing their child to have hemispheric surgery because of the potential outcomes such as losing some ability to move, or more importantly,
Understanding the Emotional Journey of Parents Of Children With Drug-Resistant Epilepsy
The Often Overlooked Challenge: Parental Mental Health In The Face Of Intractable Epilepsy When a child is diagnosed with drug-resistant epilepsy, the focus is naturally on their health and treatment. However, a recent study
What we learned at the American Epilepsy Society Meeting
I am excited to share some lessons learned from our time at the American Epilepsy Society earlier this month. This is one of the largest epilepsy meetings in the world, with over 6,000 attendees
Epilepsy surgery can improve health-related quality of life
Families enjoying the dance party at our family conference in 2022 Health Related Quality of Life After Pediatric Epilepsy Surgery The #1 goal of any epilepsy surgery is either to stop seizures or reduce
Epilepsy surgery improves survival in children with drug-resistant seizures
Epilepsy and Long-Term Survival The most frightening fact about epilepsy is that people with epilepsy have a higher chance of dying compared to others their age. It's one of the main reasons we want parents
Study confirms intensive rehabilitation is effective years after hemispherectomy
Robocamp Study Results Published in the Journal of Clinical Neuroscience Each summer from 2014 through 2019, we collaborated with Rancho Research Institute on an important research study: Robocamp. This was an intensive rehabilitation camp
New! Participate in research and help our community
Participating in research is a powerful way to help our community understand epilepsy surgery and its effects. We have three research studies for parents, children, and adults in our community. Please consider participating!
Understanding the decision-making process around RNS, VNS, and DBS
Does your child have an RNS, VNS, or DBS device implanted to treat drug-resistant epilepsy? Are you considering these devices for your child as a treatment after failing anti-epileptic medication? Or has your
First community report from our Global Pediatric Epilepsy Surgery Registry
This first data report reflects data collected from February 2019 - June 30, 2020. It provides an overview of some - not all - of the data in the registry. Future registry reports will break down