SUDEP Action

Making every epilepsy death count
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Online Epilepsy Memorial Day


This is an opportunity to remember all those who have died from epilepsy, across our social media platforms.

It is the most special day in our charity calendar. Now coming up to our eighth event in May 2023, SUDEP Action launched this day to enable the bereaved community to connect around the world.

Order of the day

8am (GMT) onwards

We share our first post of the day on Facebook where you're invited to also share photos, poems and memories of someone special who you have lost to epilepsy.

11amReading by our Support Team
Keep a look out on our Facebook or Twitter pages.


Reading by one of our supporters
Keep a look out on our Facebook or Twitter pages.


Join us in lighting a candle at home to commemorate those who have died from epilepsy. Our CEO, Jane Hanna OBE, will be lighting a candle on our Facebook page and we would love for you to share with us your own photos if you would like to.


How you can get involved 

There are a few ways you can get involved in Online Epilepsy Memorial Day, Wednesday 3 May.

1. Online social media MAIN event on our Facebook page

SUDEP Action will be sharing a main post on our social media platforms on the 3 May. If you would like to get involved online, you can join us on our main page on Facebook.

Many bereaved people, from all over the world, will join together to share photos, poems and memories of their loved ones, who have lost their lives to epilepsy. 

Follow us on Facebook to keep up to date with the Day's activity.

You can also change your Facebook Cover image to show your support. 


2. Join us in lighting a candle on the Day at 7pm

We understand that not everyone is on social media and will not be able to take part online.

So, as well as the usual online ways to be involved, we are inviting everyone at home to light their own candle of remembrance at 7pm on 3 May.

Our CEO, Jane Hanna OBE, will be lighting a candle on our Facebook page, and we would love for you to share your own photos with us, under her post.

For those you who don’t use Facebook, but who would like to share either your candle image, or an image of your loved one – please email us your image by Monday 1 May and we will post on your behalf (unfortunately we can’t take hard copies via post). Alternatively, if you have friends or family members who use Facebook – they may be able to do this for you.


3. Online dedications

Another way you can get involved in the event, is to add a dedication to our online dedication wall - Forever remembered, forever missed. Cherry blossom has been chosen as the theme for the wall, as cherry blossom represents the beauty and the fragility of life.
Just click the purple button on the page to add your dedication and follow the instructions. 
You may want to decide in advance the words you would like to share, plus a photo if you would like to include one.

Making a donation as part of this campaign is optional.
We want you to be able to take part, whatever your circumstances, and to know that this campaign is first and foremost about joining together and sharing your memories.

You can add your dedication to the wall until Friday 26 May. But after this date, visits can still be made to view all the dedications.

If you would like more information or need help creating an online dedication, contact our team on [email protected]  

4. Share your story

Every story, regardless of when it happened, is precious to us and deserves to be told.

The stories are of loved ones who have died from epilepsy.
Those who have shared their story find it helpful to know that they are part of a bigger voice. Sharing a story can be a way of supporting others, who have been through a similar experience.

Sharing your story with us can make a real difference.

If you think this is something you can help us with, we would be keen to hear from you. For more details, please contact us on [email protected] or 01235 772850.


5. If you don't have social media

If you would still like to see what we're sharing on the day but you don't use social media then you can visit our page here, where we will be sharing updates on the day.


If you have been affected by an epilepsy death, and would like to speak to someone, please contact the SUDEP Action support team on 01235 772852 or [email protected]

If you are outside the UK, we can provide email support, or where available, details of a service local to you, in your country.


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