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Online Epilepsy Memorial Day

Online Epilepsy Memorial Day, 10th May, is a global opportunity to remember all those who have died from epilepsy, across our social media platforms.

Now in its fourth year, SUDEP Action launched this special day enabling the bereaved community to connect around the world.

Jane Hanna OBE, CEO at SUDEP Action has written a moving and reflective blog about the importance of the day.

How you can get involved in this year’s event

This year’s event is on – Friday 10 May 2019

SUDEP Action will be sharing posts on social media platforms throughout the day, as well as before and after.

Hundreds of bereaved families will join in by sharing photos, poems, memories and journeys of their lost loved ones.

Follow us on Facebook and Twitter today to keep up to date with the day’s activity.

Resources

To help create awareness and show your support for the Day, download the Facebook cover image to use on your own profile page

Online Epilepsy Memorial Day – FB cover image 2019

My Story

My Story – is an important and powerful way for you to join our campaign. As ‘the voice of the bereaved’ for over 20 years, we use information shared with us to good purpose. We are very experienced in supporting those who wish to share their stories and who find it helpful to know that they are part of the ‘voice.’ The stories are those of people who have died from epilepsy, whatever the cause. With permission we share these stories where they will have most impact in highlighting epilepsy mortality.

The stories in this section are from the UK and are used to help us to influence change and to reduce unnecessary deaths from epilepsy. They also help people feel less alone, knowing that others have walked a similar path.

With your permission we can use your stories alongside our research and the information compiled from over 500 reports to The Epilepsy Deaths Register, to help people to try and understand the experiences of families.

Our voices are stronger together and as the only charity solely dedicated to supporting and working with the bereaved to make change, we are calling on people to share their story too. With your help we are able to shout louder, we can and will always represent your views, we provide services that the bereaved have asked for.

If you would like to share your story and be part of our ‘voice’ please contact our Communications Manager, shelly.johnson@sudep.org.

Please note that it may take some time to upload your stories and we may need to contact you further prior to publishing.

If you live outside the UK, you may be able to share your story via our international project with Epilepsy Australia and SUDEP Aware Canada:  www.sudepglobalconversation.com/

View The Stories

1000Voices

SUDEP Action is giving a platform to the bereaved community to share their experiences. We would like to hear from YOU, about your journey and how you have connected with the charity during the last 21 years.

We are aiming to gather 1000 voices to help support the Prevent21 campaign. There are already over 700 voices on The Epilepsy Deaths Register, but we need more.

Here’s how you can get involved:

What is 1000voices?

1000voices is a project, (that sits within the national Prevent21 campaign), which opens up the platform to the bereaved community to share their experiences.

We would like to hear from our supporters about their experiences and your journey alongside SUDEP Action over the last 21 years.

Your stories are important and help us evidence the fight for change.

Why should I get involved?

The more voices we gather, the more stories we can share – presents a wider and more accurate picture of our bereaved community and what they experience after an epilepsy-related death.

Your voice is important and needs to be heard. It needs to be heard by the health professions, policy-makers, and Government, to help them understand that urgent action needs to be taken so that future lives can be saved.

Every epilepsy death does count, so please add your voice and help us to be heard.

How will my voice be used?

We treasure all voices shared with us and will be gathering them together over time. All voices received will be gratefully received. They will be documented, and may then go on to help add weight to upcoming campaign work for SUDEP Action.

  • This could be via:
  • PAME presentation (June)
  • SUDEP Action Day (October)
  • SUDEP Action Summit (November) – more info coming soon

Not all voices will be shared publicly, but we value every voice that is shared with us, and each voice adds to our power to create change.

How can I get involved?

Firstly, we would like to take part in our survey. This survey will help us capture your journey with the charity.

1000voices survey

Afterward, we would love you to take part in two other ways, such as:

Share your story

My Story – is an important and powerful way for you to join our campaign. We are very experienced in supporting those who wish to share their stories and who find it helpful to know that they are part of the collective ‘voice. Personal stories help to bond and encourage those that are bereaved. It’s also a wonderful way to celebrate the life of a loved one.
Stories can be shared on our website, social media, newsletters and on a more global scale, via SUDEP Global Conversation.
Contact shelly.johnson@sudep.org for more details on how you could be involved.

Epilepsy Deaths Register

The Epilepsy Deaths Register is a single point for reporting all epilepsy-related deaths.
We urgently require your help to gather vital information.
A death can be reported more than once and can be reported by anyone as family, friends, neighbours, and colleagues may have different information.
If you have yet to add information to the register, you can do so via the link or you can call 0330 088 1220 for support.

Although writing about your loved one and your experiences can be therapeutic, we also understand that it can bring up painful emotions and memories.
If at any point you feel you would like to contact the support team, please email: support@sudep.org or give us a call on 01235 772852.

SUDEP Action Day - A global awareness day
SUDEP-The Global Conversation
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