MP Ed Vaizey supports launch of SUDEP Awareness Day-23 October
Mr Vaizey is also the charity’s first president, he said: “I am honoured to be the first President of SUDEP Action, a Wantage-based charity with global reach which works on such an important but little-known cause. I am also delighted to be supporting SUDEP Awareness Day on October 23rd which I hope will help many more people to be aware of the risks some of us face and, in particular, how they can be minimised. ”
Karen Osland, Acting Chief Executive for SUDEP Action commented: “We are delighted that Ed is supporting our campaign and that he has agreed to take on the important role of charity President. The charity has grown much in the last 20 years and is now recognised as a global leader in its field. While people are increasingly far more aware of the risk of SUDEP, there is still much more for us to do. We are confident that Ed will help us, not only to keep epilepsy mortality high on the political agenda but in supporting us where he can to deliver our message.”
SUDEP is extremely rare and SUDEP Awareness Day is part of SUDEP Action’s Call for Openness Campaign which calls for a common sense approach to alert people at risk of ways to reduce their risk. The campaign encourages people with epilepsy to be open about their condition, to report their seizures accurately and to take their medications regularly and as prescribed. It also encourages doctors and nurses to talk about risk, including the risk of SUDEP, on or soon after diagnosis.
Today we are urging people with epilepsy, through the tag line ‘Be smart, be safe’, on ways in which they can reduce their risk.
We are holding an information stall near Sainsbury’s in Wantage where we are providing information and answering questions from the public about SUDEP and reducing risk for people with epilepsy. Apart from raising awareness, we are also raising funds for SUDEP research and commemorating those who have died from the condition.
SUDEP Action was founded in 1993 as a self-help group. It was the first organisation in the UK and internationally to champion the SUDEP cause and is the leading organisation worldwide on this issue.