Epigraph Vol. 18 Issue 2, Fall 2016
Epilepsy Awareness Day
Epilepsy Awareness Day at Disneyland began in 2013. Our main goal in starting this patient- and family-oriented celebration was to help raise awareness about the common challenges that are faced every day by people affected by the disease and to end the stigma that so many with epilepsy face. The event has been held each November, and in 2015 the third annual Epilepsy Awareness Day and Education Expo at Disneyland took place. The program has grown from 972 people in 2013 to 2,000 at the most recent in 2015, and it has become a truly national and international event. Participants came from 13 countries and all of the continents, and almost all of the 50 states in the U.S. In addition, the event has brought in many patient organizations and enjoyed the support of 27 sponsors, and the participation of 60 patient organizations.
The event began simply with the goal of bringing patients and families with a member with epilepsy together for support at Disneyland. However, at that event, we were approached inside the Disneyland park by an epileptologist who noted that we had done a great job gathering people, but that we had failed in our duty to educate and empower people with a learning and networking venue. From that comment, the Educational EXPO was born. We have used the EXPO to provide new information about new treatment options, new medications, new technologies and devices. It also gives people whose lives have been affected by epilepsy the opportunity to share experiences about treatments and how they are dealing with the challenges brought by epilepsy. Several physicians paid us the ultimate compliment by saying that they had never seen such a gathering of physicians and patients anywhere before.
Our own involvement in creating this event came from having a child with epilepsy. Having epilepsy or a family member with epilepsy, especially uncontrolled epilepsy, comes with a whole set of issues that are experienced only by people with this disease. As a result, people feel isolated and have no one to talk to about the problems, and they don’t know how to deal with these problems. This event helps overcome the isolation as people can come together and learn from one another how to find solutions. In addition, participants have the opportunity to learn from vendors about products that are available that can alleviate some of the burden.
Each year, we have seen how people leave the event with a greater understanding of what they can do. They leave with a greater sense of empowerment because they know they are not alone and have met others who can help. We receive numerous emails, many with photos from prior events and the most heartfelt stories telling us how much the event meant to them. For many, it was life changing, being able to meet and speak to doctors and with other people who had a complete understanding of their specific condition. People leave the event feeling stronger about spreading the word to raise awareness about epilepsy.
Making this event known has been purely grassroots. Epilepsy Awareness Day has no major corporate backing, no celebrity spokespeople and no advertising budget. We use Facebook, Instagram, and our website to promote and create attention. We ship boxes of postcards to epilepsy groups around the nation and they distribute them at group gatherings and to physicians’ offices. We have an email version as well that our supporters use to help increase awareness. Last year, we were fortunate enough to have the International League Against Epilepsy (ILAE) promoting the event, which gathered attention from a more international audience that traveled to California. The participation of the ILAE, the International Bureau for Epilepsy (IBE), Epilepsy Foundation of America (EFA) and Citizens United for Research in Epilepsy (CURE) helped them fulfill their commitment to unite the world’s epilepsy communities and greatly increased EADDL’s visibility.
For the 2016 event, we will continue to use the methods that have worked to get the word out, but we have also strengthened the partnership with CURE to promote their new initiative, the Day of Science program, and we expect CURE to add a new level of media attention. For 2016, we expect to draw approximately 80 national and regional epilepsy support groups, more than 20 national epilepsy centers and over 2,500 guests from six continents. We have been able to add epilepsy centers from Canada, Guatemala and all across the USA in order to accommodate the demographics of our guests. We are also offering more physician guest speakers, as well as in-depth workshops on some of the most requested topics such as diet for epilepsy, understanding more about EEG, and service and seizure dogs.
Our journey into epilepsy was not planned, but rather brought on by having a child with uncontrolled epilepsy. Our family’s path started with uncontrolled seizures, a long road of being misdiagnosed, and ending with successful epilepsy surgery in February 2009. Our daughter, Sofie, has been seizure free for over seven years, and she is acting like a teenager, enjoying aerial acrobatics, and beginning her courses to become a registered EEG technologist, in addition to finishing her sophomore year of high school. Life has been quite a ride, but making this journey with Sofie gave us a commitment to help other families who are dealing with all of the problems that epilepsy brings, and to find a way to have a normal life. The comments we receive back from participants tell us that there is a great need for gatherings such as Epilepsy Awareness Day.
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