Epilepsy Awareness Day at Disneyland Resort (EADDL) Announced for November 2nd and 3rd, 2016 to Bring Epilepsy Out of the Shadows

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 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. 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 its 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), Epilepsy Foundation of America (EFA), and Citizens United for Research in Epilepsy (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.”

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; however, 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, 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 3,000 anticipated ticketed participants as we flood the Disneyland Park in our EADDL Mickey Mouse 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.

www.epilepsyawarenessday.org

Brad Levy/ Event Director / 310-666-7484 / brad@epilepsyawarenessday.org

Candy Levy/ Event Coordinator/ Sofie’s Mom: candy@epilepsyawarenessday.org

Saving Savannah

 

One morning, about 20 years ago, Tracy Dixon-Salazar heard a strange sound coming from her daughter’s bedroom. She rushed in to find 2-year-old Savannah jerking violently in bed, apparently choking. But when the paramedics came, they couldn’t find an obstruction or anything else to cause her condition.

“No one could explain why I had a healthy 2-year old one day and the next day that was gone,” Tracy says.

Savannah was having seizures caused by a severe form of epilepsy called Lennox-Gastaut syndrome (LGS). LGS seizures typically start before age 4, according to the National Institute of Neurological Disorders and Stroke, and there are many types. Most LGS patients experience frequent seizures that do not respond to current epilepsy therapies. And they often have memory problems, learning deficits, developmental delays and behavioral issues.

For two-thirds of people with all forms of epilepsy, including Savannah, the cause is unknown. Treatment is even more challenging.
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