[Did you know that 5,000 people who are personally or professionally touched by epilepsy are heading to Disneyland® on November 4-6 for…]
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Tue, 01 Oct 2019 23:08:24 GMT
Amy Levy
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Did you know that 5,000 people who are personally or professionally touched by epilepsy are heading to Disneyland® on November 4-6 for Epilepsy Awareness Day At Disneyland®? (EADDL)
Globally, over 60 million people have epilepsy, many of them without effective treatment.
In an effort to address the unmet needs for increased education for people with epilepsy and their families, Brad and Candy Levy of Irvine, CA, started a nonprofit organization called Sofie’s Journey after their own daughter battled epilepsy.
A very impressive list of the most important doctors from around the world are coming to speak on November 4 & 5.
Sofie’s Journey brings 5,000 people from around the world together to raise awareness at the 7th annual Epilepsy Awareness & Education Expo
Irvine, CA, October 1, 2019… INFORMATION IS POWER and on November 4, 5, 6, over 5,000 people from around the world including the UK, Germany, South America, Australia and Dubai whose personal and professional lives are touched by epilepsy, will converge to GATHER & SHARE INFORMATION at the 7th annual Epilepsy Awareness & Education Expo at Disneyland® Resort! And, best of all, attendance is absolutely FREE.
Globally, over 60 million people have epilepsy, many of them without effective treatment. In an effort to address the unmet needs for increased education for people with epilepsy and their families, Brad and Candy Levy of Irvine, CA, started a nonprofit organization called Sofie’s Journey after their own daughter battled epilepsy.
At the Expo, attendees and media will see ROSA the Robot on display. Surgeons will be demonstrating how she works. This is the first time ROSA will be shown to the public (usually she is only at functions for Neurology/Neurosurgery).
Ten years ago, the now 19 year-old Sofie Levy, underwent surgery to remove a part of her brain that Candy and Brad called, “the troublemaker,” because it stilled the chaotic electrical storms in her head. The surgery was a success and she never had seizures again. Her parents were so grateful that they wanted to help others affected by epilepsy and soon Sofie’s Journey and the Epilepsy Awareness & Education Expo/Epilepsy Awareness Day at Disneyland® Resort (EADDL) were born.
Their goal is to teach as many people about epilepsy and seizure disorders and help to find a cure. The Levy’s efforts are focused on bringing this misunderstood condition that will develop in 1 of every 26 people at some point in their lifetime, to light. “When Sofie’s surgeon, Dr. Gary Mathern said that his friends at the International League against Epilepsy wanted to talk to us about pushing for international unity, we couldn’t wait to be a part, said Candy Levy.” “We are so proud to be involved with the world recognized governing body for epilepsy advocacy.”
All attendees, including children, of EADDL must register to attend the free expo at http://www.epilepsyawarenessday.org. There are no exceptions.
Details about Epilepsy Awareness/Education Expo:
WHEN:
November 4, 2019: Free Expo/Education 10:00 AM – 5:00 PM
November 5, 2019: Free Expo/Education 8:00 AM – 4:00 PM
WHO:
*A FEW OF THE NATION’S TOP EPILEPSY SPECIALIST SPEAKERS WILL BE ON HAND INCLUDING, BUT NOT LIMITED TO:
· Raman Sankar, MD, PhD UCLA Mattel Children’s Hospital (Understanding Your EEG)
· William Gallentine, DO and Gerald Grant MD, FACS; Stanford Children’s Health (Who Is An
Epilepsy Surgical Candidate)
· Arnold Sansevere, MD; Boston Children’s Hospital (Newly Diagnosed Kids)
· Adam Numis, MD; UCSF Benioff Children’s Hospital (Neuroinflamation/Autoimmune)
· Laura Kalayjian, MD; Keck School of Medicine USC (Women Treating Women)
· Joseph Sirven, MD Mayo Clinic (Hard to Treat Epilepsy)
· Daniel Curry, MD Texas Children’s (Stereo EEG and Ablation in Epilepsy)
· Leading epilepsy professionals from around the world, over 60 non-profit support groups, epilepsy centers, drug/related-product manufacturers, seizure dogs and their trainers, and people whose lives are touched by epilepsy or who want to raise awareness or funds for epilepsy.
WHERE: Disneyland® Hotel’s North and South Exhibit Hall
COST: FREE to attend the first two days of this one-of-a-kind event.
However, for those attendees looking to spend November 6th at the park, they need to purchase a Disneyland® Resort park ticket either at the park or at www.epilepsyawarenessday.org which will include a participation pack and the purple shirt, to be picked up at the Expo.
PARK DAY:
Wednesday, November 6, 2019: PARK DAY* 10:00 am – Park Close
*Extra Fee for Park Entrance Required.
Annual pass holders (AP) are welcome to join, and can purchase a participation pack as well.
Ticketed participants from around the world will converge into the Disneyland® Park on Day 3, November 6th wearing their EADDL purple event t-shirts. When you wear the shirt around the park, you will easily be identified by other attendees and their families.
PARKING: Parking is available to all guests in the main parking structure for a fee (self-park or valet).
New book, “After That Day” to be released at EADDL
Sofie’s Journey will launch a new book titled, “After That Day: Stories of Epilepsy” at the Expo. The book profiles forty-five people whose lives have been forever changed by their experience with epilepsy, and it includes the perspective from doctors who are leading the charge toward the advancement of the understanding and treatment of this disorder.
The Levy’s especially want to reach people who are not able to attend the Expo. They are facilitating distribution of the book to hospitals and medical offices all over the country to promote understanding and to help both doctors and patients in their consideration of treatment options.
The beautiful over-sized book begins with Brad and Candy Levy’s personal story of their daughter’s battle with epilepsy. It includes gorgeous candid portraits taken by New York-based photographer Karen Haberberg. Readers will find a wide range of epilepsy types represented in the book, and not all of the stories have a happy tone. Writer and Editor Amyliz Pera worked from stories authored by parents, caregivers, and people with epilepsy to craft a book that highlights the diversity of experiences with this disorder.
“After That Day” introduces such people as Aliana, who was ripped from her parents’ arms at age six because of their medication choice. You will meet Zenaya, who was passed around for years because of her disorder and finally adopted by her caregiver. Hopeful stories include an introduction to Ed, whose service dog can smell a seizure coming, and Jayden, whose dad pioneered a prominent whole plant CBD product after Jayden had tried countless pharmaceuticals.
The book has strong support from the medical and epilepsy communities.
Doctors Edward H. Bertram, Gary W. Mathern, and Solomon L. Moshé are featured in the book and authored this conclusion:
“One of the problems for people with epilepsy is that they often don’t know when they’ve had a seizure or what actually happened during the seizure. They are told something happened, but they have no recollection of the event. Their lives are held hostage by these unrecognized occurrences. We all want to have control of our behavior, especially in public places, and we don’t want to attract unwanted attention. With epilepsy, control is taken away, which causes many to withdraw from public activities. Many people feel their experiences are one-of-a-kind and that no one else has ever had to deal with all of the consequences of the disease. Perhaps the greatest message from the stories we hear is to never give in and always look for ways to find your own sense of normalcy.”
The book is available for pre-order on Amazon and directly through the Sofie’s Journey web site https://epilepsyawarenessday.org/sofies-journey
About Sofie’s Journey:
In an effort to address the unmet needs for increased education for people with epilepsy and their families, Sofie’s Journey created the Epilepsy Awareness & Education Expo and Epilepsy Awareness Day at Disneyland®. The organization works with the finest professionals from epileptologists to nonprofits and everything in between. It is the leading source for all things epilepsy! Sofie’s Journey, Inc. is a qualified 501(c) 3 tax-exempt organization (EIN: 47-5662411) managed by volunteers and 100% of the funds raised go directly to producing the Expo.
Media Inquiries: For additional information about the 7th Annual Epilepsy Awareness Day at Disneyland® (EADDL), please contact Amy Levy Public Relations at 310-444-5250.