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Keeping in Touch July 2013

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Keeping in Touch July 2013 SUDEP Action is committed to preventing Sudden Unexpected Death in Epilepsy (SUDEP) and other epilepsy related deaths through research, awareness and influencing change. We also work to support the bereaved and to help them channel their grief into preventing future epilepsy-related deaths. Bereavement support: [email protected] Getting involved & campaigns: [email protected] Keeping in touch SUDEP Media: [email protected] Action July 2013 Making every epilepsy death count On 16th March 2013, the charity held a main search term that brought people to special event to announce its rebranding from us. While our name has changed our focus Epilepsy Bereaved to SUDEP Action and to has not, we still remain fully committed to introduce The Epilepsy Deaths Register. The reducingSUDEP unnecessary deaths from epilepsy” event was held at Dunchurch Park Hotel Action near Rugby. It was attended by more than 100 Jane introducedMaking everyThe Epilepsy epilepsy Deaths death Register count families, health professionals and staff. and explained that it is the only existing register of all epilepsy deaths in the UK. She Jane Hanna also announced at the event that revealed that SUDEP Action has embarked over the next year she will be dedicating on The Epilepsy Deaths Register campaign her time to research and the deaths register. aimed at increasing support for the register Karen Osland, who was recently appointed and workSUDEP on prevention of deaths. Deputy Chief Executive will take over as Action Acting Chief Executive for this period. Norman Lamb MP, minster for care said in debateMaking on every29th Januaryepilepsy 2013: death “I count met Unveiling the charity’s new name, Jane representatives of Epilepsy Bereaved to explained that the charity had adopted SUDEP discuss sudden unexpected death resulting Action as a new working name and ‘making from epilepsy, and I found it an incredibly every epilepsy death count’ as the strap line useful session. I learned a lot about the extent SUDEP Action as it clearly distinguished the charity’s area of to which, through better care, we could PO Box 112 focus. Jane said SUDEP Action is also an easier significantly reduce the number of people Wantage name for people with epilepsy, policy makers who die in such circumstances. It is, therefore, Oxon and potential funders. incumbent on the whole NHS to ensure that we raise the level of care to the standard OX12 8XT Explaining the reason for the change of name of the best. If we can do that, we will make a in 2013, Karen said many supporters had real difference”. Call: 01235 772850 asked the charity to do so. She said awareness Email: [email protected] of SUDEP as a term was developing on the Paul Burstow MP, former minister for care, THE internet adding that: “some of the reasons why tabled two Early Day Motions to raise EPILEPSY DEATHs REGISTER Epilepsy Bereaved was chosen as a name for awareness in Parliament. sudep.org the charity no longer exist. Our web statistics Making every epilepsy death count showed Epilepsy Bereaved was no longer the sudep.org THE EPILEPSY DEATHs REGISTER Making every epilepsy death count can register an Epilepsy related death. This Jones, Mr Paul Flynn, Mr Paul Maynard, Mrs information will be used for medical research, Heather Wheeler, Ms Tracy Crouch, Mr Peter in the hope that it will one day help towards Aldous, Sir James Paice, Mr Simon Hart, Mr finding a cure and prevent more unnecessary Andrew Percy, Mr Alec Shelbrooke and Mr SUDEP Actionloss staff, of trustees life. This and information supporters will at alsothe parliamentaryhighlight Jim reception Shannon. to launch The Epilepsy Deaths SUDEPthe Actionnumber staff, of trusteespeople who and supportersare losing attheir the parliamentary reception to launch The Epilepsy Deaths Register (EDR)Register on Tuesday (EDR) on 4June Tuesday 2013. 4June 2013. SUDEP Actionlives staff, to SUDEP”. trustees and supporters at the parliamentaryIf you reception are interested to launch in Themeeting Epilepsy with Deaths your MP to ask for their support for the register, Register (EDR) on Tuesday 4June 2013. SUDEPThe fifteenAction staff, MPs trustees that attendedand supporters the atevent the parliamentaryplease email reception [email protected] to launch The Epilepsy Deaths SUDEP ActionRegisterSUDEP staff, Action (EDR) trustees onstaff, Tuesday and trustees supporters 4June and 2013. supporters at the parliamentary at the parliamentary reception receptionto launch Theto launch Epilepsy The Deaths Epilepsy Deaths Registerwere Ms (EDR) Claire on Perry,Tuesday Mr 4June Damian 2013. Hinds, Mr or call 01235 772850 SUDEP Action staff, trustees and supporters at the parliamentary reception to launch The Epilepsy Deaths Register (EDR) on Tuesday 4June 2013. Stuart Andrew, Mr John Howell, Mr Andrew Register (EDR) on Tuesday 4June 2013. Fifteen MPs attend Westminster launch of The Epilepsy Deaths Register Fifteen MPs attended the SUDEP Action to help patients avoid fatal accidents or launch of The Epilepsy Deaths Register. prolonged seizures, much less is known The Parliamentary Reception was held on about SUDEP. The Epilepsy Deaths Register Tuesday, 4 June 2013. The campaign is aimed has been launched to help with the prevention SUDEP ActionSUDEP Chief Action Executive Chief ExecutiveJane Hanna, Jane Jan Hanna, Burns Jan BurnsSouth DerbyshireSouth Derbyshire MP Heather MP Wheeler Heather supports Wheeler the supports the at preventing epilepsy deaths. The reception of epilepsy deaths and provide some answers and Claireand Perry Claire MP whoPerry hosted MP who the hosted reception the reception EDR EDR SUDEP Action Chief Executive Jane Hanna, Jan Burns South Derbyshire MP Heather Wheeler supports the was hosted by Ms Claire Perry MP. Politicians to SUDEP. heard of the experience of SUDEP Action and ClaireSUDEP Perry MPAction who Chief hosted Executive the reception Jane Hanna, Jan BurnsEDR South Derbyshire MP Heather Wheeler supports the andSUDEP Claire Action Perry Chief MP Executive who hosted Jane Hanna, the reception Jan Burns and South DerbyshireEDR MP Heather Wheeler supports the EDR supporters, the Burns family, whose son SUDEP Action Acting CEO Karen Osland SUDEP ActionSUDEPClaire Chief Perry Action Executive MP whoChief hosted ExecutiveJane the Hanna, reception Jane Jan Hanna, Burns Jan BurnsSouth DerbyshireSouth Derbyshire MP Heather MP Wheeler Heather supports Wheeler the supports the Charlie aged 10 died from SUDEP following highlighted the importance of the register and Claire andPerry Claire MP whoPerry hosted MP who the hosted reception the reception EDR EDR a seizure that occurred during his sleep. His commenting that: “registers of epilepsy family had never heard of Sudden Unexpected death are a vital new development in work Death in Epilepsy (SUDEP). on prevention across the world. We need everyone who knows of a death to report Commenting on the campaign, Norman and we need as many supporters as possible Lamb MP, Minister for Care and Support, said: joining our campaign to develop the register. “I am hugely supportive of the important I urge anyone with information about a death work being undertaken by SUDEP Action, to contact the register via www.sudep.org” and in particular their work to establish an Epilepsy Deaths Register. Their register will SUDEP Action Chair of Trustees Professor Blackpool North and Cleveleys MP Paul Maynard Mr Paul Flynn MP Newport West at the EDR launch help to develop a clearer picture of epilepsy- Stephen Brown emphasised that information Blackpool North and Cleveleys MP Paul Maynard Mr Paul Flynn MP Newport West at the EDR launch attends theattends launchBlackpool the of theNorthlaunch EDR and of Cleveleys the EDR MP Paul Maynard attends Mr Paul Flynn MP Newport West at the EDR launch related deaths nationwide, will help to from the register is desperately needed as a Blackpool North and Cleveleys MP Paul Maynard Mr Paul Flynn MP Newport West at the EDR launch Blackpool Norththe launch and of Cleveleysthe EDR MP Paul Maynard Mr Paul Flynn MP Newport West at the EDR launch improve clinicians’ understanding of epilepsy, research tool. His comment was echoed by attends theattends launch the of launchthe EDR of the EDR and will ultimately help to reduce sudden and Dr Henry Smithson who is providing research Blackpool North and Cleveleys MP Paul Maynard Mr Paul Flynn MP Newport West at the EDR launch unexpected deaths in epilepsy and improve support for The Epilepsy Deaths Register. Blackpool North and Cleveleys MP Paul Maynard Mr Paul Flynn MP Newport West at the EDR launch attends theattends launch the of thelaunch EDR of the EDR patients’ care”. Campaigners and policy makers are working There are 3 epilepsy deaths every day in the to raise awareness amongst Coroners who UK every day often in the young. This puts can play a key role in recording deaths which epilepsy in the top ten of all causes of early can help to educate the public and improve death. Sudden Unexpected Death in Epilepsy services. (SUDEP) is used when someone with Jan Burns who spoke about her son Charlie’s epilepsy dies suddenly- often after a seizure death from SUDEP said: “The most significant that involves loss of consciousness. SUDEP development has been the launch of the Mr Jim Shannon MP Strangford, Ireland with SUDEP Action Roger and Sandie Scrivens with their MP Mr Damian Hinds accounts for at least half of all epilepsy deaths Epilepsy Deaths Register by SUDEP Action, in the UK. Whilst doctors have information a place where bereaved families and friends CEO Jane Hanna and Mr Mike Glynn, CEO Epilepsy Ireland Mr Jim ShannonMr Jimand MP presidentShannon Strangford, of ILAE.MP Strangford, Ireland with Ireland SUDEP with SUDEPRoger andRoger Sandie and Scrivens Sandie with Scrivens their withMP Mr their Damian MP Mr Damian Action CEOAction JaneMr Jim HannaCEO Shannon Jane and Hanna MrMP Mike Strangford, and Glynn, Mr Mike Ireland CEO Glynn, with CEO SUDEP Hinds RogerHinds and Sandie Scrivens with their MP Mr Damian EpilepsyMr Jim Ireland EpilepsyShannonAction and Ireland CEOMP president Strangford,Jane and Hanna presidentof ILAE.
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