SUDEP Action Keeping in touch Making every epilepsy death count December 2014 Thinking of you ... FromSUDEP the Trustees, Management and Staff, we MP for Wantage and Minister of State for hope you had a peacefulAc Christmas.tion This time Culture and the Digital Economy ED Vaizey, ofMaking the year everymay be epilepsydifficult for death some countof you. I was appointed as first President for SUDEP hope that reading through our newsletter can Action. The first ever SUDEP Awareness bring some comfort in knowing you are not day was held on 23 October and it received alone. Our supporters have been amazing support from all over the world. this last year, campaigning, raising awareness, sharing their stories and fundraising, all of In this issue, read The Epilepsy Deaths which will help us to work towards our aim Register report on the findings in the first ofSUDEP reducing deaths from epilepsy. We can’t year, our advice on seizure monitors, and an thank you enough. Action article on maternal epilepsy deaths. There is a lot planned for 2015 which will be our 20 AMaking lot has happenedevery epilepsy over the death year andcount you year anniversary and we hope that you will will no doubt find reading some of the stories follow our progress, hold an event and join informative and inspiring. We launched the our campaigns. third SUDEP - Global Conversation, as an online resource, at the American Epilepsy The team at SUDEP Action wish you a Society Annual Meeting in Seatle, USA in prosperous new year. December, 2014. sudep.org Newly appointed SUDEP Action President welcomes launch of first ever SUDEP Awareness Day SUDEP Action held the first ever SUDEP Awareness Day on 23 October, 2014. The day is dedicated to raising awareness and promoting ways that people with epilepsy can reduce their risk of SUDEP. Newly appointed SUDEP Action President, Ed Vaizey, who is MP for Wantage, where the charity is based 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 have supported 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. ” our SUDEP Awareness Day campaign. The charity has grown a lot in the last 20 years Ed, who is also Minister of State at the and is now recognised as a global leader in Department for Culture, Media and Sport its field. While people are increasingly far and the Department for Business, Innovation more aware of the risk of SUDEP, there is still and Skills, with responsibility for digital much more for us to do. We are confident industries, hosted a reception at parliament that Ed will help us, not only to keep epilepsy in support of SUDEP Awareness Day. The mortality high on the political agenda but in reception was attended by nine Members supporting us where he can to deliver our of Parliament: Maria Eagle, Helen Goodman, message.” Ivan Lewis, Andrew Stephenson, Rob Wilson, Henry Bellingham, Philip Hollobone, David SUDEP Awareness Day is part of SUDEP Tredinnick and Paul Maynard. SUDEP Action Action’s Call for Openness Campaign, which supporters Rachel Shah and Vivek-Anand calls for a common sense approach to alert Dattani attended the reception to talk about people at risk of ways to reduce their risk. their personal experience of a loved one The campaign encourages people with dying from epilepsy. Rachel Groves, SUDEP epilepsy to be open about their condition, to Action’s Fundraising and Operations Manager report their seizures accurately and to take was there on behalf of the charity. MP Stuart their medications regularly and as prescribed. Andrew also supported SUDEP Awareness It also encourages doctors and nurses to talk Day through a statement on his website. about risk, including the risk of SUDEP, on or soon after diagnosis. Karen Osland, Acting Chief Executive for SUDEP Action commented: “We are delighted On the day, the charity urged people with that Ed has agreed to take on the important epilepsy, through the tag line ‘Be smart, be role of Charity President and for supporting safe’, on ways in which they can reduce their risk. SUDEP Action held a stall in Wantage We also received 23 times the usual number where members of staff provided information of visits to our website information section and answered questions from the public on this day. about SUDEP and reducing risk for people with epilepsy. The charity raised funds for We also had requests for well over 1,000 of SUDEP research and commemorated those our “be smart be safe” leaflets to be sent out who have died from the condition. and over twenty of our supporters visited their GP to ask them to display our epilepsy Many SUDEP Action supporters organised and risk leaflets at their surgeries. various activities in support of SUDEP Awareness Day which will be held annually. We aim to build on this success for 2015. For We were fortunate, for example, to achieve more information on how you can take part press coverage across much of the UK, and this year, please contact SUDEP Action on reached over 4 million people in total with 01235 772850 or email [email protected]. stories about SUDEP. Much of this coverage was thanks to individual supporters getting in touch with their local paper to share their story, so thank you very much to those of you who were able to help in this way. UCL and charities welcome $5.9 million boost to UK SUDEP research A research team at UCL is one of nine Each year, SUDEP occurs in 1 out of 1000 projects to share $5.9 million from the people with epilepsy, often in people between US government to speed up the pace of 20 to 40 years old. SUDEP refers to deaths research into Sudden Unexpected Death with no known causes in individuals with in Epilepsy (SUDEP). The announcement epilepsy. In the UK, it is estimated that there comes at the same time as two of the UK’s are 600 deaths a year from SUDEP. Current epilepsy charities have invested major funds efforts are focused on risk reduction through in essential infrastructure to support this control of seizures, but there are no proven research. prevention strategies. Dr. Thom and her colleagues at Epilepsy The UCL team is one of nine groups of Society Brain and Tissue Bank, based at the scientists who will receive funding totalling UCL Institute of Neurology, will use a variety $5.9 million, over five years, to work together of techniques to examine the brain in SUDEP. on increasing the understanding of SUDEP. The team have access to one of the world’s largest collections of brains from individuals Maria Thom who leads the research team who have died from SUDEP as well as to at UCL said: “This funding from the United tissue collected from individuals undergoing States means we can speed up our efforts epilepsy surgery. Together with US colleagues to prevent SUDEP deaths. This injection of in the Center for SUDEP Research, they will funding from the US will enable us to make look at the role of two chemicals, adenosine best use of our valuable resources, working and serotonin, in SUDEP. with SUDEP Action and the Epilepsy Society.” SUDEP Action’s Epilepsy Deaths Register Karen Osland from SUDEP Action said: will promote the project in the community “These deaths are sudden and, like cot and provide support for bereaved families deaths, are traumatic. Families want answers. and coroners in the UK. In the US, this role Funding raised by bereaved families in the will be performed by the SUDEP North UK has been used to establish an Epilepsy American Registry. Epilepsy Society, which Deaths Register that can provide a supportive established the Epilepsy Society Brain and environment for families to help research, Tissue Bank in 2013, will lead on promoting and can coordinate work with coroners. We the initiative with people living with epilepsy are delighted to work closely with the team in the UK. at UCL.” Seizures are common, affecting almost 1 in Angela Geer, Epilepsy Society’s chief 20 people. Epilepsy-related death occurs at executive said: “This is an exciting project a younger age than in most other conditions. combining our research with that carried out Epilepsy is the fifth leading cause in males, in the United States and a huge opportunity and eighth in females, of avoidable years of to understand more about epilepsy related life lost. Causes of death include accidents, deaths. The sooner we can turn our research suicide, status and Sudden Unexpected into clinical practice the sooner we can save Death in Epilepsy (SUDEP). lives.” Source - Epilepsy Research UK Epilepsy Deaths Register – the first year W Henry Smithson, Professor of General Practice, University College Cork, National University of Ireland Jane Hanna, CEO, SUDEP Action Karen Osland Dep. CEO, SUDEP Action The Epilepsy Deaths Register (EDR) We now have over 300 registrations which was set up in March 2013. The register is is a great start and reflects the motivation of owned and managed by SUDEP Action in families and the dedicated team at SUDEP collaboration with research teams (https:// Action who promoted the register online www.epilepsydeathsregister.org/en/ and through liaising with professionals and expert-team). The Project Management patient organisations. A similar register set up Committee includes senior researchers from by experts and bereaved families in France in King’s College, London; University College, 2010 relies on a network of neurologists in London; University College, Cork; Exeter regions and has attracted 160 reports so far.