At SUDEP Action, we supports people who have lost someone they love to epilepsy or Sudden Unexpected Death in Epilepsy (SUDEP). We also campaign for change and fund research to prevent epilepsy deaths in the future.
What you can do
We currently have an urgent campaign that we are raising money for. We need to raise £165,000 by the end of September 2015 to allow Consultant Neurologist Professor John Duncan to test a Wearable Apnoea Detection Device on 50 people with epilepsy. So far we have received roughly £120,000 in donations so we desperately need more people to raise funds and donate.
Professor Duncan believes that if the trials prove to be successful then the device may help prevent some SUDEP deaths.
A motivation of Professor Duncan is the death of one of his epilepsy patients, Kate Odd. Kate passed away from SUDEP in 1997 at just 19 years of age. Professor Duncan still keeps a picture of Kate at the front of his work folder to remind him to “do better”.
You can donate to our WADD campaign via the following link
https://www.justgiving.com/SUDEPActionWADD/.
If you would like to fundraise for the WADD project please email fundraising@sudep.org. Visit our website via the following link for some fundraising inspiration as well as further information about SUDEP and the WADD campaign www.sudep.org/i-want-get-involved.
Other ways you can help
Even if you are pushed for time or don’t have any spare cash you can still help. SUDEP Action have entered an Aviva competition to win £5000 so we can set up local coffee meetings enabling those who have lost loved ones to epilepsy to meet others who have shared a similar experience.
SUDEP Action supporters Shirley West and Linda Joy met after losing loved ones to epilepsy. Their friendship has helped them to cope following the loss of Shirley’s son Jack, and Linda’s daughter, Karen. Shirley and Linda shared with us how important it is to have a friend who understands your grief:
“No one other than somebody who has experienced what we have can understand the pain and distress we are going through. Knowing that I can tell Shirley anything and that she will not judge me and will understand is such a comfort. Knowing that she is there when I have a bad day and can call round for a hug, means such a lot.” (Linda )
“To share the pain with someone who truly understands helps release some of the pain because they always understand and you never have to explain the way you feel because they feel the same. I can tell Linda anything and not be judged on things other family members would never understand. I know she is there for me no matter what just wish everyone who has lost a child to SUDEP could find their own Linda.” (Shirley)
Please click the following link and vote for us to win £5000 https://community-fund.aviva.co.uk/voting/Project/View/2589. Voting won’t take long and won’t cost you anything.
To donate visit: www.sudep.org/i-want-donate-0
Sudep Action
SUDEP Action works to prevent deaths from epilepsy. It is a reporting and support centre for all epilepsy deaths. The charity is the leading voluntary organisation in the UK and internationally on Sudden Unexpected Death in Epilepsy (SUDEP) and other epilepsy related deaths. SUDEP is when a person with epilepsy dies suddenly and unexpectedly and no other cause of death can be found at post-mortem. SUDEP Action works with leading experts to reduce unnecessary deaths from epilepsy through research education and awareness.
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