Epilepsy Day Supporters Hope to ‘Speak With One Global Voice’

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by Mary Chapman |

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International Epilepsy Day | Dravet Syndrome News | illustration of rare person in a crowd

On the second Monday of every February, International Epilepsy Day supporters all over the world bring attention to the challenges and needs of the epilepsy community. This year, the event falls on Feb. 14.

Participants in more than 130 countries are poised to mark the day — from sharing stories and “shining a light” on epilepsy, to participating in webinars and taking “50 million steps.” Their goal is to heighten awareness about the 50 million people estimated to be affected by epilepsy, including the 1 in 20,000 to 40,000 globally living with Dravet syndrome, a type of epilepsy characterized by episodes of prolonged seizures that begin in the first year of life.

The annual observance is presented by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy.

“This is a day for everyone, no matter where you are, no matter how small your group or large your area, no matter whether you focus on the medical or the social aspects of the disease,” the organizers state on their webpage. “We want you to help us celebrate International Epilepsy Day! Let’s speak with one global voice.”

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The event will again feature “50 Million Steps for Epilepsy,” an IBE campaign to raise awareness about epilepsy and funds for epilepsy organizations throughout the world. The effort, named for the number of people thought to have the condition, involves getting at least 500 people to take 20,000 steps each between Jan. 10 and Feb. 14.

Supporters may view online videos of patients sharing their stories, including issues such as stigmas associated with epilepsy. Another returning effort, called “Let’s Shine A Light,” seeks to get landmarks and structures worldwide to “go purple” for the day to highlight problems faced by patients and caregivers. In recent years, the Colosseum in Rome, Italy, and Tower 42, a skyscraper in London, England, have been illuminated in purple, the official color that represents epilepsy.

There are also plenty of resources available, including downloadable social media logos, graphics, and posters, which participants can use along with the hashtag #EpilepsyDay and #IED22.

For its part, the Epilepsy Foundation is encouraging supporters to help spread awareness on social media by sharing a photo of themselves holding an International Epilepsy Day sign, and creating and posting an epilepsy awareness video. The organization is also offering downloadable “seizure first aid” posters which are available in several languages.

Supporters can also create a Facebook fundraiser, attend Epilepsy Day events, meet the International Epilepsy Day mascot “Campi,” and join #StreamForEpilepsy for an inaugural streaming event, #LoveFest, on Feb. 14.

In addition, the organization is offering a host of epilepsy facts for tweeting, including the fact that four of every 10 people with epilepsy in the industrialized world do not receive proper treatment for their condition.

Because International Epilepsy Day falls on Valentine’s Day in the United States and other parts of the world, the foundation suggests celebrating a loved one who has epilepsy by creating a fundraiser in their name that will support the organization’s programming.

“Creating a campaign to benefit the Epilepsy Foundation is an incredible gift to honor or remember a loved one,” the foundation states on its webpage.

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Elsewhere, Epilepsy Ireland is launching a campaign that will be announced on Feb. 14, and offers ways to educate people about what to do when someone is having a seizure. It also is offering images for posting on social media as well as patient stories to help the general public better understand epilepsy.

Another organization, Cure Epilepsy, is offering a webinar on the impact of epilepsy in Africa, and suggests establishing an International Epilepsy Day fundraiser to help support the community.