November is Epilepsy Awareness month, and the 6th Annual Epilepsy Awareness Day
(EAD) November 2018 gathered nearly 4000 guests under one roof, mixing epilepsy patients, physicians and resources from all over the world. Held at the Disneyland Resort in Anaheim, California, the 3-day event included a 2-day EXPO with over 100 exhibitors including providers, resources, and national non-profit support groups. The event ended with a full day at Disneyland for families and professionals to celebrate.
Epilepsy is a brain disorder marked by recurring seizures, or convulsions, it affects 1 in 26 people with onset often beginning with children. It is also estimated that as many as one-third of individuals with autism spectrum disorder also have epilepsy. Despite affecting such a large breadth of the population, the National Institute of Health’s estimated research budget for fiscal year 2018 was only $163 million, and this year they will LOWER that to $152 million.
EAD is an annual event operated by the Irvine based non-profit foundation Sofie’s Journey/EAD, now in its seventh year which draws people from across the globe. “We wanted to create an opportunity to drive epilepsy awareness, with awareness the key to overcoming challenges created by epilepsy,” stated Candy Levy, Co-Founder of Sofie’s Journey/EAD. “At our event we bring together patients, physicians, advocates, non-profits, services, pharma and CBD, and this year we have a large section of the convention facility for people to meet their possible and future service dogs.”
“We have learned so much, met many people with similar things like us, but most importantly we learned that we are not alone in this fight with epilepsy. Awareness is spreading like wild, it’s the best,” said Mandy G. from Kansas. “We have been so lucky to work with the UCLA pediatric epilepsy department to help our son. We travel to the west coast every few months for treatment.”
Sofie’s Journey began with Sofie Levy, who had her first seizure at 5 years old. After years of pursuing treatments and options, the Levy family was given the opportunity of brain surgery for Sofie. Sofie is now in college and just passed 10 years of seizure freedom while also working towards being an EEG technologist. To further focus their passion for epilepsy awareness, and to ensure others are afforded great epilepsy care, the Levy Family created EPILEPSY AWARENESS DAY with the first event held on November 7, 2013.
“The Epilepsy Awareness Day at Disneyland has become a unique opportunity for patients with epilepsy and their caregivers to interface with non-profit and other groups to openly communicate about their needs and available services,” said neurosurgeon Dr. Gary Mathern. “This is a model meeting that should serve as an example for others around the world.”
Preparations are underway for 2019, with an expanded focus. “The good we are doing, is an incredible feeling that goes beyond description,” said Brad Levy, Co-Founder. “We are transitioning to a year-long Epilepsy Awareness campaign, with a three-day physical event as the anchor to our efforts. Planned for this year, we will have an updated site, multi-platform social media presence, video campaigns working closely with our medical board and expanding our hospitals.