This is probably our last post on this blog and is a simple, big thank you to everyone who has contributed to our charity. We have now raised over £5000 towards SUDEP Action, which is a fantastic figure to have reached and far exceeds our wildest hopes.
This has allowed us to sponsor the Epilepsy Deaths Register that SUDEP Action has set up at the behest of the government and researchers to provide a national database to record all the circumstances and details surrounding each epilepsy related death. As I mentioned at the start of the fund raising last year, SUDEP (Sudden and Unexpected Death from EPilepsy) is a significant killer, accounting for about 3 deaths per day in the UK (i.e. over 1000 per year), mainly amongst young people in their late teens to early 30’s age range. (This makes it one of the top ten causes of death amongst young people). The aim of the Register is to provide one comprehensive data base which researchers in the UK and overseas can tap into to try to determine what factors might make sufferers more susceptible to SUDEP (such as life style, medication change, diet, activity, etc). Most epilepsy suffers set out to lead a normal life but epilepsy often enforces restrictions on them so the aim of the Register is to provide education and guidance to sufferers and clinicians and hopefully to ultimately identify the means by which SUDEP can be avoided. More information is available at Sudep Register
Our thanks also once again to all those who transported us up and down the country and who took the time to meet up with us, sail with us and e mail us, all of which we greatly appreciated.
A following wind and fair weather to you all.
Yvonne and John