EADDL is the combined effort of one family’s thankfulness for their daughter’s recovery (10+ years since surgery & her last seizure) and a united community’s passion for winning the fight against epilepsy.
Sofie Levy’s school day was almost always cut short. She’d suffer a seizure at noon and spend the rest of the day recovering from it. Medication was no help.
Ten years ago, the now 19 year- old underwent surgery to remove a part of her brain that her parents called “the troublemaker” which stilled the chaotic electrical storms in her head. Sofie’s freedom from seizures inspired Sofie and her folks to create Epilepsy Awareness Day at the Disneyland Resort, which returns November 4-6, 2019 for it’s SEVENTH year. EADDL needs to bring this misunderstood condition that will develop in 1 of every 26 people at some point in their lifetime, to light.
This year EADDL will be partnering with the International League Against Epilepsy (ILAE) and working with international and national leaders such as The Danny Did Foundation (DDF) and Citizens United for Research in Epilepsy (CURE) for their commitment in uniting the world’s epilepsy communities. This year’s event is expected to draw approximately 100 epilepsy support groups and 2,000 people from many continents, as far away as the UK, Germany, South America, Australia, and to Anaheim, California.
“We are so proud to be partnering with the world recognized governing body for epilepsy advocacy”, says Candy Levy event coordinator, and most importantly Sofie’s Mom.
“When Sofie’s surgeon, Dr. Gary Mathern said that his friends at the ILAE wanted to talk to us about pushing for international unity, we couldn’t wait to be a part.”
Epilepsy affects about 2.2 million Americans, 1 in every 26 people according to the Institute of Medicine of the National Academy of Sciences report. Onset occurs at any age; how ever is most common in children, the elderly and those with traumatic head injuries such as athletes and veterans.
Sofie was just 5 when her parents noticed the brief blank staring spells. “She would just check-out for a second or two, cognitively she was gone,” Brad says. “We couldn’t get a handle on it. We couldn’t tell if she was playing with us. Then she lost speech and we knew something was wrong.” Three years and many treatments later, the seizures only intensified.
Epilepsy is the fourth most common neurological disorder in the U.S. after migraine, stroke and Alzheimer’s disease, yet it receives less than a tenth of the research funding of any one of them. With no big name celebrity spokesperson and with centuries of stigma, epilepsy is in the shadows. Too few talk about it, often doctors miss epilepsy until a convulsion occurs. Epilepsy is not well understood, is under diagnosed, and new treatments are slow to come to market, leaving over 30% of the children with uncontrolled epilepsy.
Sofie was lucky, we could get to the source of the seizures. Stopping the seizures allowed the other parts of her brain to function well so she could live well. Surgery was her best option, it doesn’t always have to the last option. Since surgery she has been seizure free, she is finishing 12th grade in high school, with a special interest in writing, music & ASL. She’s currently learning to drive and she is also studying Neurodiagnostics, so that can soon be working as an EEG Tech. The Levy family business is a private, in-home EEG monitoring service, catering to kids/adults specializing in Autism & Epilepsy.
In addition to gathering folks this November, a new found focus for this event will be to spread awareness all year long with continued updates from physician advisors, blogs, new articles from Epilepsy industry leaders and more, all on our newly updated website and social media presence. “We’re hoping that all of our guests will go back to their home towns and spread the word that there is now an international day for hope. We’re just super excited.” said Brad Levy, event director.
Join us as we flood the Disneyland Park in our purple 2019 EADDL event t-shirts!