SUDEP Action

Making every epilepsy death count
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Take part in Online Epilepsy Memorial Day

Join us today on Wednesday 5th May to watch our friends and supporters of SUDEP Action read poetry to mark Online Epilepsy Memorial Day.

To take part in this international event, you can leave a photo and memory of your loved one, on our Facebook page.

You can also leave a dedication, via our cherry blossom dedication page.

Remember, we are always here to support you and your family.

A poem by Leo Buscaglia - 8am 

Poetry reading by Dame Stephanie Shirley CH - available from 12pm 

Listen to Dame Stephanie Shirley CH share a very special reading for us, in support of Online Epilepsy Memorial day. 

Philanthropist and entrepreneur Dame Stephanie Shirley came to the UK as a child refugee from Germany.

She was an IT pioneer, starting her company in 1962, employing women, using flexible working and making her staff shareholders. Now she devotes her time and resources to charity and research projects with a focus on autism.

Dame Stephanie’s son Giles had autism and epilepsy. She will be reading a poem as part of SUDEP Action’s Online Epilepsy Memorial Day in memory of Giles, and for all who have lost their lives to epilepsy. 

Below are the words to the poem read by Dame Stephanie. This poem was written by Bruce Bateman, for Lynda.


Now you have gone - By Bruce Bateman in memory of Lynda. I’ll love you ‘till I die And maybe after then In the valleys of the sky You will hear my song again And the song will speak of love A love that never dies From the cloud-hills of the wind

Poetry reading by Victoria MacDonald - available from 2pm


SUDEP Action supporter and Channel 4 news Health and Social Care Editor, Victoria MacDonald records another special reading to mark Online Epilepsy Memorial Day.

Victoria Macdonald is an award-winning journalist, who has been covering health and social care issues for Channel 4 News since 1999.

She reports on changes in the NHS - the reforms and the politics - whether it is in hospitals or in the community or, indeed in Westminster.

She closely follows the care system and how it impacts on the elderly and those with disabilities as well as investigating issues, including mental health, HIV/Aids and TB, and child health.

Victoria is originally from New Zealand and worked for the Sunday Telegraph before joining Channel 4 News. 
Source: Channel 4

Below are the words read by Victoria. This poem was written by Sue Wills in memory of James.

We Painted The Sky By Sue Wills in memory of James


The poems that have been read today by Dame Stephanie Shirley CH and Victoria Macdonald are taken from the poetry book ‘We Painted The Sky’. This book was published by SUDEP Action (then known as Epilepsy Bereaved) in 1999 and was made up of poems written by bereaved people in memory of their loved ones. We thank and pay tribute to all the bereaved people who contributed their poems, and are pleased that we can share some poems from this book today.


Candle lighting with our CEO Jane Hanna, OBE available from 7pm

Join us in lighting a candle to remember your loved one at 7pm. If you would like to share a photo of your candle and a message about your loved one visit our Facebook page. 

To find out why Online Epilepsy Memorial Day is such a special day in the SUDEP Action calander, you can read Jane's reflectve and moving blog.

We would like to say thank you for joining us today, to remember loved ones that we have lost to epilepsy. Support will always be here for you, no matter how much time has passed.

Our specialist bereavement team offers support for as long as you need it, we are always by your side. If you have any questions or would like to speak to someone, please get in touch with us on 01235 772 852 or email [email protected] 


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