Celebrating Siblings Day – April 10, 2024
Siblings Day is a global awareness day held on April 10 of each year. It is a special day to celebrate the unique bond between brothers and sisters. This year, we are grateful to
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
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
Quick Guide to Financial & Medical Resources for Families
Financial help before, during, and after your child's epilepsy surgery Raising a child with complex medical needs can bring various challenges, including financial burdens. You may have to pay for doctor’s visits, hospital stays,
Caregiver Supports After Epilepsy Surgery
It can be challenging and emotionally overwhelming to raise a child with drug-resistant epilepsy. Caregivers often find themselves navigating a new normal after epilepsy surgery and dealing with many concerns about their child's needs.
Call for siblings to join our new support program
Some sibling facts: Siblings of children with epilepsy often experience fear when witnessing a seizures. They often worry about seizures and wonder if they cause pain. This can lead to fear and anxiety. Siblings of children with chronic
What we learned in our Power Hour session about vision after epilepsy surgery
Recently we hosted a Power Hour on Vision After Epilepsy Surgery. Dr. Linda Lawrence, member of our scientific advisory board and a pediatric ophthalmologist who is an expert in brain-based visual impairment as well as
Power Hour: AAC and Literacy
Some children in our community use augmentative and alternative communication (AAC) devices to communicate with others. We often hear parents share that they wonder if proper reading instruction is part of their education. Does your team
Our new goal bank will help you navigate your child’s IEP
We are often asked by families, “What are good goals for my child’s IEP after epilepsy surgery?” Or “How do I know if my child is on track to meet their IEP goals?”