*Online pre-registration is extended until 5pm TOMORROW 10/31! Don't worry, you can still register at the expo on 11/2 starting at 10am! EVERYONE MUST be registered to participate in the expo. Thanks!
EPILEPSY AWARENESS DAY AT DISNEYLAND RESORT (EADDL) ANNOUNCED FOR NOVEMBER 2nd and 3rd, 2016
EADDL is the combined effort of one family’s thankfulness for their daughter’s recovery
(now 7 years since her last seizure) and a united community’s passion for winning the fight against epilepsy.
Epilepsy Awareness and Education Expo @ The Disneyland Hotel November 2, 2016 10am-5:00pm
Epilepsy Awareness Day @ Disneyland November 3, 2016 9am-park closing
Sofie'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.
Seven years ago, the now 16 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 Disneyland Resort, which returns this November for it’s fourth 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 again be partnering with the International League Against Epilepsy (ILAE), the International Bureau for Epilepsy (IBE), and Citizens United for Research (CURE) in their commitment to uniting the world’s epilepsy communities. This year’s event is expected to draw approximately 80 national and regional epilepsy support groups and 2,500 people from 6 continents, as far away as the UK, Germany, South America, and Australia, to Anaheim, Calif.
“We are so proud to be working with the world recognized governing body, and almost every great support group 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.”
Sofie’s Journey/ EADDL is a 501©3 Non-Profit
Epilepsy affects about 2.2 million Americans, 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.” Fortunately, the Levys found that brain surgery was Sofie’s best option, not last option. They headed to UCLA for testing and surgery, and the rest is now history.
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. Since surgery she has been seizure free, doing great in school, learned Hebrew and sign language, and has started studying Neurodiagnostics, so that she can soon be a working EEG Tech. Sofie’s father, Brad, now runs a private, in-‐‑home EEG monitoring service, EEG TO GO catering to kids with Autism and Epilepsy. Sofie plans to follow that same road.
In addition to gathering folks this November, a new found focus for this event will be to spread awareness for the new International Epilepsy Day. “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 over 2,500 anticipated ticketed participants us as we flood the Disneyland Park in our EADDL puprle event T-Shirts on what would ordinarily be a slow day! Also check the website for more information and for links for ticket purchases and discounted hotel rates.