Epilepsy Awareness Day celebrates seven years of building communities

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The seventh Epilepsy Awareness Day at the Disneyland Resort (EADDL) in Anaheim, California, welcomed 3,400 registered guests and more than 120 exhibitors. After two days of educational sessions and visits to the exhibit hall November 4 and 5, guests enjoyed a day at Disneyland Park November 6, with many wearing their distinctive purple EADDL t-shirts.

In 2013, Brad and Candy Levy were inspired to organize the first EADDL to celebrate their daughter’s seizure freedom. Sofie Levy was diagnosed with epilepsy in 2005 and had epilepsy surgery in 2009. Her parents wanted to shed light on epilepsy and dispel some of the myths and misunderstandings around the condition. They also wanted to bring families together.

“Having epilepsy, or a family member with epilepsy, comes with a whole set of issues that are experienced only by people with this disease,” they wrote on the EADDL website. “People feel isolated … This event helps overcome that isolation, as people can come together and learn from one another.”

In the United States, epilepsy is the fourth most commonly diagnosed neurological disorder, after migraine, stroke and Alzheimer’s disease. Yet compared with these conditions, epilepsy receives less than one-tenth of their research funding.

Sessions at EADDL 2019 featured talks from physicians, pharmacists, advocates and parents, with topics such as:

  • Dealing with a recent epilepsy diagnosis
  • Anti-seizure medications
  • Sudden death in epilepsy (SUDEP)
  • Epilepsy surgery – what it is, how to find out if you are a candidate, what to expect afterward
  • How to be an advocate
  • New therapies for epilepsy
  • Drug-resistant epilepsy
  • Understanding your EEG
  • Dietary therapies
  • Dealing with trauma and stress
  • Personal stories from families
  • Transitional care and the needs of teenagers with epilepsy
  • Research and clinical trials
  • Neuromodulation
  • Genetic testing and treating the genetic epilepsies

“This is a fantastic expo!” said one attendee. “The seminars are very informative and help those with epilepsy and their families, as well as people just wanting to know more about it. If you have questions, you’ll find answers!”

“It is a community like no other,” said a woman from Fresno. “You feel embraced and accepted. That’s rare.”

ILAE is a longtime supporter of EADDL, which is free to all registrants. Everyone is welcome; there is a nominal charge for t-shirts. Parking is available at the hotel for a reduced fee, and the event publishes a list of local hotels within walking distance, as well as a discounted rate for the Disneyland Hotel. Park tickets for EADDL participants also are available at a discount.

EADDL 2020 will take place November 2nd and 3rd, with Disneyland Park Day on November 4th. Registration opens online closer to the event date, or on-site registration is available at the event.