Share your experience and help others We’re proud to partner with the Child Neurology Foundation to conduct a survey to understand caregivers’ experiences raising children with neurologic conditions. This Needs Assessment Survey is designed
Imagine your child has many seizures every day. They have tried multiple medications, but nothing has worked. The seizures affect their ability to learn and play. You see them slipping away from you little
This is part two of our series on lessons learned from our time at the American Epilepsy Society in December 2023. You can read Part 1 here. Families and clinicians have a lot
“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
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,
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
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
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 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
Each summer from 2014 through 2019, we collaborated with Rancho Research Institute on an important research study: Robocamp. This was an intensive rehabilitation camp for children after hemispherectomy surgery. We wanted to understand whether
