We hope you will be as encouraged as we are by reading about all the latest developments in this issue of our enews. Read about Professor Martin Elliot’s lecture on SUDEP which highlighted its devastating impact, and the vital need to continue making steps now to help prevent further deaths. We stood united on SUDEP Awareness Day and reached over 13 million people and unified more than 266 organisations and patient groups. Better still our most important news is about action and prevention. Our epilepsy digital tool EpSMon is backed now by the NHS as one of only eight innovations. The app also won the Health Business Award for Healthcare IT! Just as exciting you can read here that we are now funding a clinical research trial of WADD – a wearable device that alerts people when someone with epilepsy stops breathing. What we are doing is urgently needed but not easy. You will also read inspiring personal stories from some of our supporters. We get no government funding; our fabulous fundraisers and donors make our work possible. It is your support that makes SUDEP Action special, respected and influential.
Jane Hanna OBE, Chief Executive
News
Read the latest research news and developments from the charity.
Professor Martin Elliot gave a lecture on Sudden Death in the Young; What a terrible Waste read
Epilepsy self-monitoring app joins the NHS Innovation Accelerator programme read
SUDEP Action safety tools flagged in international Neurology Journal as tools benefiting the care of people with epilepsy read
In memory of Charlie Burns, South Western Ambulance Service launches SUDEP Training Videos to reduce deaths read
SUDEP Action funds clinical trial of Wearable Apnoea Device (WADD) to stop deaths read
We stood 'united' on SUDEP Awareness Day 2016 & helped raise much needed awareness of SUDEP read
Features
Read inspiring stories and poems from our supporters and fundraisers.
Trustee John Hirst raises over £11,500 for SUDEP Action with LEJOG cycle challenge read
My sister, my inspiration - by Carly Clemenston read
Lizzie Johnson & her Sister Fran walk iconic Camino de Santiago in memory of her son Gregread
Diane Player shares her year of Bereavement Support with SUDEP Action read
Gideon Taylor raises awareness with a song - ‘Walking with An Angel’ in memory Jen Hobbs read
Our London Memorial Service in memory of all those who have died from epilepsy is on May 20 read
Fundraising
A very big thank you to each and every fundraiser, donor and supporter. The total amount raised in the last quarter was £92, 600.
Whether you need fundraising ideas, advice, inspiration or materials, our Fundraising and Administration Officer Katie is happy to help. Email her on fundraising@sudep.org or call 01235 772850.
Have you made your purple plans for Purple Day on March 26? Download our Purple Pack here
Skyline are trying to beat their own Tandem World Record Attempt and we have places reserved for SUDEP Action supporters to take part! Visit our website for more information.
EpSMon is now available for download in the UK here
Our Bereavement support team is here for you on 01235 772852 or email: support@sudep.org
SUDEP Action & SUDEP Action Scotland are the working names of Epilepsy Bereaved. Registered charity number 1050459 (England & Wales), SC045208 (Scotland)
