How AI Can Find Hidden Cortical Dysplasia In The Brain
When my son started having seizures just 30 hours after he was born, an MRI a few days later showed us that he had hemimegalencephaly - a massive brain malformation that affected one side
Why You Need To Understand Central Auditory Processing Disorder After Epilepsy Surgery
Lessons I learned from an important neuroaudiology conference As part of my work for the Alliance, I enjoy learning about different conditions to help families in our community understand them. Because of his hemispherectomy,
Participate in research
Make a positive impact by volunteering to participate in research that improves the lives of our community. Comparing Two Treatments: Medication v. Surgery for Lennox Gastaut Syndrome A research study funded
Why Isn’t Epilepsy Surgery Used More Often?
Why Epilepsy Surgery Is Underused (And What You Should Know) As a parent of a child with epilepsy, you know how heartbreaking seizures can be. You've likely tried different medications, hoping to find the one
It’s time for a roadmap of care after hemispherectomy
Important Update on Our Symptom Surveillance After Hemispheric Surgery Initiative When my son, Henry, underwent a functional hemispherectomy at just three months old to stop seizures caused by hemimegalencephaly, I vividly remember being overwhelmed by
Symptom Surveillance After Hemispheric Surgery
Welcome Thank you for participating in this important initiative to develop recommendations for symptom surveillance and screening after hemispheric surgery. We hope that this effort will help parents, caregivers, medical providers, and other
Caregiver Survey – Your Voice Matters!
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
The harsh reality of disparities in pediatric epilepsy surgery
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
What we learned about dilemmas in genetic testing
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
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