This week, we were invited by Sofie’s Journey – the organizers of Epilepsy Awareness Day at Disneyland – to take the lead on planning all the pediatric and adult epilepsy surgery sessions at the 11th Annual Epilepsy Awareness and Education Expo.

Of course we said yes!

We’ve been involved with EADDL since day one. My son’s surgeon, Dr. Gary Mathern, was also the surgeon who operated on Sofie. It was actually his idea to have an epilepsy awareness event in the area. Brad and Candy Levy, Sofie’s parents, took that idea and grew it into the worlds largest epilepsy awareness event. We’ve exhibited at the event each year and have watched the program blossom into what it is today.

Our team will spend the next several months ensuring a comprehensive and inspiring agenda for the event. The epilepsy surgery sessions will cover a wide range of topics, including:

  • The latest advances in epilepsy surgery
  • How to choose the right epilepsy surgery team
  • What to expect before, during, and after epilepsy surgery
  • The impact of epilepsy surgery on quality of life

We are deeply committed to providing attendees with the information they need to make informed decisions about epilepsy surgery. We’ll also invite families to share their personal stories and experiences, in order to provide hope and inspiration to those who are considering epilepsy surgery.

About Epilepsy Awareness Day at Disneyland EXPO

Epilepsy Awareness and Education Expo is a free event for people of all ages with epilepsy, their families and friends, and those whose lives are touched by epilepsy or who want to raise awareness for epilepsy. The event will feature a variety of educational sessions, workshops, and activities, as well as a chance to meet and learn from experts in the field of epilepsy.

The expo is a great opportunity to learn more about epilepsy, share your experiences, and connect with others who understand what you’re going through. We hope to see you there!

Get nominated to go for free!

Do you have an immediate family member with an epilepsy diagnosis who could benefit from this event? If so, the Chelsea Hutchison Foundation is now accepting nominations for an all-expense-paid trip to Epilepsy Awareness Expo and Day at Disneyland, taking place from October 30 to November 4, 2023.

The Chelsea Hutchison Foundation believes in the power of shared experiences and knowledge. It is committed to ensuring that those living with epilepsy and their families can participate in this important event. To submit your nomination, please visit this page. Read through the instructions and qualifiers carefully to ensure your nomination meets all the requirements. The final deadline to apply is July 16, 2023.

This scholarship and many other financial resources can be found in our (Almost) Everything List.

about the author

Monika Jones, JD, is our founder and executive director. Her first son, Henry, had a modified lateral hemispherotomy, revision surgery, then true anatomical hemispherectomy to stop seizures caused by total hemimegalencephaly. She is also the principal investigator of the Global Pediatric Epilepsy Surgery Registry, the only parent-reported data collection to understand the developmental trajectory after pediatric epilepsy surgery. You can read her research works at orcid.org/0000-0001-6086-3236.

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