(NewsUSA) – November is Epilepsy Awareness month, and this year’s 4th Annual Epilepsy Awareness Day (EAD) was the largest gathering of epilepsy patients and physicians in the world. Held at the Disneyland Resort in Anaheim, California, the 2-day event included a convention with over 90 exhibitors, 24 physician/specialist seminars, a Rick Springfield benefit concert, and a full day at Disneyland for the families.
Epilepsy is a brain disorder marked by recurring seizures, or convulsions, and it affects over 2 million Americans, 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 2017 is only $145 million.
EAD is an annual event operated by the Irvine-based non-profit foundation, Sofie’s Journey/EAD, now in its fifth year and drawing 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,” states Candy Levy, Co-Founder of Sofie’s Journey/EAD. “At our event we bring together patients, physicians, advocates, non-profits, services, and this year we had a large section of the convention facility for people to meet their possible and future service dogs.”
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 11th grade, and is eight years seizure-free. To further focus their passion for epilepsy awareness, and to ensure that others are afforded great epilepsy care, Sofie’s parent’s Candy and Brad Levy 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,” says neurosurgeon Dr. Gary Mathern. “This is a model meeting that should serve as an example for others around the world.”
There are other conventions globally, including the annual American Epilepsy Society convention held in the beginning of December. What separates EAD is that it is not a typical medical or business convention: it is about the patients and their families. “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,” says 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.”
Preparations are underway for 2017, with an expanded focus. “The good we are doing is an incredible feeling that goes beyond description, says Brad Levy, Co-Founder. “We are transitioning to a full-time Epilepsy Awareness campaign, with a three-day physical event as the anchor for our efforts. Planned for this year, we will have an updated site, multi-platform social media presence, video campaigns, and working more closely with our medical advisory board and hospitals. Our mission is now a year-long epilepsy awareness campaign.”
For more information, visit www.epilepsyawarenessday.org
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