SUDEP Action

Making every epilepsy death count
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Online Epilepsy Memorial Day 2019

OEMD

 

Online Epilepsy Memorial Day is the most special day in the charity calendar.  

We live with memories, thoughts, feelings throughout the year. At SUDEP Action we understand that, and are here for you whenever you may need us.

Online Epilepsy Memorial Day is special because it’s the day which can unite us all, in our common cause of remembering together. It is a day when we can share our memories of those who have died suddenly.  

Alan, my first partner, died many many years ago aged 27, and like many other supporters, I will never forget the early years, when grief was overwhelming. Today, you will be sharing with others who will be feeling this pain, and with others whose pain has possibly changed. Changed to a new place of peace, or even joy at time spent thinking about their loved one.  

How they acted,

How they thought,

How they looked,

Who they influenced stays with all those they touched. 

They all remind us of all that it is to be human.

At SUDEP Action, our team embraces some of these shared values. Working together, we strive to be courageous, innovative, impactful, collaborative and above all compassionate – we make sure that every epilepsy death truly does count, and is never forgotten. We hope this helps pay tribute to the humanity of those to all who have died, and to all those that are remembering loved ones today.

For me, there will always be life before Alan died, and life after, as my life was changed for ever. Meeting and working with so many courageous people to fight for change, we are always united by the photos and memories of the beautiful people, who have had their lives cut short because of epilepsy. It is our sharing of their lives, that has helped change the practice of doctors and nurses around the world, and has brought the risk of epilepsy to the attention of people who can make a difference. It is the sharing of these young lives lost, that continues to keep the pressure on for change.

We are proud on Online Epilepsy Memorial Day to share that SUDEP Action has won the British Medical Journal Education Team of the Year, for the work we have done to develop epilepsy safety and risk communication tools.

With 21 deaths a week, and huge gaps in recognising and tackling risk, we are focused on putting people and life-saving knowledge and support first.

This award is a real tribute to the people we remember today, and to the struggles of bereaved families and clinicians over so many years. This recognition, and the recognition of our PREVENT21 campaign, the epilepsy community will continue to help change the culture and move some of the obstacles to change.

So today, I will imagine Alan smiling with his broad grin, and hope you can join us in remembering those you love.

Jane Hanna OBE,
CEO SUDEP Action

 

For more information:

Our recent BMJ award win

Prevent21 Campaign - preventing epilepsy deaths

If you want to know more about epilepsy safety and managing risks, visit our information pages or contact us on info@sudep.org

If you have been affected by an epilepsy death, please contact the SUDEP Action support team on 01235 772852 or support@sudep.org