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SUDEP ACTION
Our services include bereavement support, counselling, help with understanding the inquest process and in collaboration with UK research teams, the involvement of bereaved families and professionals in research through the Epilepsy Deaths Register. If you have been affected by an epilepsy death, please contact our support team on01235 772852.
WHAT IS SUDEP?
The definition of SUDEP was first debated at the first international research workshop on sudden death in epilepsy in London in 1997. The definition that was widely used and adopted by NICE guidelines was proposed by Dr Lina Nashef: “Sudden, unexpected, witnessed or unwitnessed, nontraumatic and nondrowning death in patients withepilepsy
LEAFLETS AND DOWNLOADABLE INFORMATION Prevent21 campaign leaflet (PARENTS and CARERS) (PARENTS and CARERS) Epilepsy: Reducing risk SUDEP: What you need to know SUDEP Action: What we do Epilepsy - Be smart, be safe SUDEP - explained - A short guide SUDEP - reducing your risk -for the health professional information for teenagers and young adults SUDEP - understanding the risk information and guidance NATIONAL EPILEPSY WEEK 2021 (24-30 MAY) National Epilepsy Week is an annual event where the epilepsy community comes together to raise awareness about what living with epilepsy is like. But this year, like the last, remains very different. Things are starting to return to ‘normal’ as we move #BeyondCOVID, but many things have also changed dramatically for people with epilepsy, their clinicians/services, their families and forABOUT THE REGISTER
The Epilepsy Deaths Register is endorsed by the government and promoted by professional and patient organisations around the UK to provide: a single-point for reporting deaths. reports on information provided. support for anyone wishing to help research into SUDEP and epilepsy deaths. coordination of involvement in research. EPSMON: EPILEPSY SELF-MONITORING It can also help you decide whether to seek help earlier than your next planned visit. EpSMon is designed so that you can be aware of why and when a medical review of your epilepsy is important. EpSMon cannot guarantee that you are never at risk, but it can help STORIES | SUDEP ACTION Bea aged 18. Bea only ever had four seizures in the past. Read more. Becky aged 11. On a wet spring morning in May 2004, just three months short of her twelfth birthday, Becky became a victim of SUDEP. Read more. Ben aged 27. Benjamin was born on Christmas Eve 1989. Read more. MBRRACE MATERNAL DEATHS INQUIRY 2020 MBRRACE Maternal Deaths Inquiry (2020)Showing a doubling of epilepsy deaths among pregnant women with epilepsy The 2020 MBRRACE (Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries in UK) report has found that the number of maternal deaths of women with epilepsy has doubled in three years, during 2016 to 2018. RAISING AWARENESS OF EPILEPSY RISKS WITH PEOPLE WITH Every day in this country, 3 people die from epilepsy. Studies have shown people with both epilepsy and a learning disability, are at an increased risk of Sudden Unexpected Death in Epilepsy (SUDEP) . A recent study in Leicester found that epilepsy is the second most common cause of death for people with learning disabilities. PROFESSOR MIKE KERR TO RECEIVE EXCELLENCE AWARD We are very happy to announce that the British Branch of the International League Against Epilepsy (ILAE) ‘Excellence in Epilepsy Award’ for 2019 has been awarded to Professor Mike Kerr, who is a Trustee and vice-chair of SUDEP Action. The accolade is for lifetime achievement in the field of epilepsy.Professor Kerr specialises in managing epilepsy in people with intellectualSUDEP ACTION
Our services include bereavement support, counselling, help with understanding the inquest process and in collaboration with UK research teams, the involvement of bereaved families and professionals in research through the Epilepsy Deaths Register. If you have been affected by an epilepsy death, please contact our support team on01235 772852.
WHAT IS SUDEP?
The definition of SUDEP was first debated at the first international research workshop on sudden death in epilepsy in London in 1997. The definition that was widely used and adopted by NICE guidelines was proposed by Dr Lina Nashef: “Sudden, unexpected, witnessed or unwitnessed, nontraumatic and nondrowning death in patients withepilepsy
LEAFLETS AND DOWNLOADABLE INFORMATION Prevent21 campaign leaflet (PARENTS and CARERS) (PARENTS and CARERS) Epilepsy: Reducing risk SUDEP: What you need to know SUDEP Action: What we do Epilepsy - Be smart, be safe SUDEP - explained - A short guide SUDEP - reducing your risk -for the health professional information for teenagers and young adults SUDEP - understanding the risk information and guidance NATIONAL EPILEPSY WEEK 2021 (24-30 MAY) National Epilepsy Week is an annual event where the epilepsy community comes together to raise awareness about what living with epilepsy is like. But this year, like the last, remains very different. Things are starting to return to ‘normal’ as we move #BeyondCOVID, but many things have also changed dramatically for people with epilepsy, their clinicians/services, their families and forABOUT THE REGISTER
The Epilepsy Deaths Register is endorsed by the government and promoted by professional and patient organisations around the UK to provide: a single-point for reporting deaths. reports on information provided. support for anyone wishing to help research into SUDEP and epilepsy deaths. coordination of involvement in research. EPSMON: EPILEPSY SELF-MONITORING It can also help you decide whether to seek help earlier than your next planned visit. EpSMon is designed so that you can be aware of why and when a medical review of your epilepsy is important. EpSMon cannot guarantee that you are never at risk, but it can help STORIES | SUDEP ACTION Bea aged 18. Bea only ever had four seizures in the past. Read more. Becky aged 11. On a wet spring morning in May 2004, just three months short of her twelfth birthday, Becky became a victim of SUDEP. Read more. Ben aged 27. Benjamin was born on Christmas Eve 1989. Read more. MBRRACE MATERNAL DEATHS INQUIRY 2020 MBRRACE Maternal Deaths Inquiry (2020)Showing a doubling of epilepsy deaths among pregnant women with epilepsy The 2020 MBRRACE (Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries in UK) report has found that the number of maternal deaths of women with epilepsy has doubled in three years, during 2016 to 2018. RAISING AWARENESS OF EPILEPSY RISKS WITH PEOPLE WITH Every day in this country, 3 people die from epilepsy. Studies have shown people with both epilepsy and a learning disability, are at an increased risk of Sudden Unexpected Death in Epilepsy (SUDEP) . A recent study in Leicester found that epilepsy is the second most common cause of death for people with learning disabilities. PROFESSOR MIKE KERR TO RECEIVE EXCELLENCE AWARD We are very happy to announce that the British Branch of the International League Against Epilepsy (ILAE) ‘Excellence in Epilepsy Award’ for 2019 has been awarded to Professor Mike Kerr, who is a Trustee and vice-chair of SUDEP Action. The accolade is for lifetime achievement in the field of epilepsy.Professor Kerr specialises in managing epilepsy in people with intellectualWHAT IS SUDEP?
The definition of SUDEP was first debated at the first international research workshop on sudden death in epilepsy in London in 1997. The definition that was widely used and adopted by NICE guidelines was proposed by Dr Lina Nashef: “Sudden, unexpected, witnessed or unwitnessed, nontraumatic and nondrowning death in patients withepilepsy
ABOUT US | SUDEP ACTION Epilepsy is one of the top-ten causes of early death. Sudden Unexpected Death in Epilepsy or SUDEP can often be traumatic for families and distressing for professionals, all of whom have questions. At SUDEP Action, we focus our efforts on the priorities that bereaved families tell us are important:• To prevent deaths• To be supported• To be involvedWe have won national andI WANT TO DONATE
With your donations, we can save lives.Help fund our Prevent21 Campaign. For a breakdown of how your donations could help, take a look at the campaign leaflet. To see what else your money could go towards, take a look the charity annual reports to see how money has been spent.There are lots of ways you can donate to SUDEP Action:You can donate online or via our Facebook page ONLINE EPILEPSY MEMORIAL DAY There are a few ways you can get involved in Online Epilepsy Memorial Day, Wednesday 5 May. 1. Online social media MAIN event on our Facebook page. SUDEP Action will be sharing a main post on our social media platforms on the 5 May. If you would like to get involved online, you can join us on our main page on Facebook. CONTACT US | SUDEP ACTION You can do this in any of the following ways:By post - SUDEP Action, 18 Newbury Street, Wantage, Oxfordshire, OX12 8DABy phone -Support line 01235 772852Main Office 01235 772850SUDEP Action Scotland 0131 516 7987By email: For general enquiries info@sudep.orgFor support support@sudep.orgFor fundraising fundraising@sudep.org By contact form below - Please note: We EPILEPSY SAFETY DEVICES They are designed to recognise that a seizure has occurred or that breathing has been disrupted, triggering an alarm so that assistance can be provided.This is a rapidly developing area of research. Investigation into the development and the benefit of such monitors is ongoing and at this time there is no evidence to show that using an alarm or device can guarantee the safety THE EPILEPSY DEATHS REGISTER Fill out our online form The Epilepsy Deaths register needs your help to gather vital information. Please tell us if you know of the death of someone with epilepsy, or of someone who was awaiting diagnosis. Epilepsy is one of the top ten causes ofOUR TRUSTEES
Trustee. I first contacted SUDEP Action after my son, Tim, died from Sudden Unexpected Death in Epilepsy at the age of 27. Although it was very sad to learn about others who had lost their loved ones in the same way, I felt as if a huge weight had been lifted off me. Until then, I thought that Tim was the only person who had died from SUDEP. RAISING AWARENESS OF EPILEPSY RISKS WITH PEOPLE WITH Every day in this country, 3 people die from epilepsy. Studies have shown people with both epilepsy and a learning disability, are at an increased risk of Sudden Unexpected Death in Epilepsy (SUDEP) . A recent study in Leicester found that epilepsy is the second most common cause of death for people with learning disabilities. LIGHT UP THE SKY IN MEMORY “Walking this journey is made a little easier when you know you're not walking it alone.”This November & December, SUDEP Action asks you to join us to Light Up the Sky with love and with memories, as a way of remembering those we have lost and supporting others together.Taking part is easy. Simply follow the link to visit the page, and leave your dedicationSUDEP ACTION
Our services include bereavement support, counselling, help with understanding the inquest process and in collaboration with UK research teams, the involvement of bereaved families and professionals in research through the Epilepsy Deaths Register. If you have been affected by an epilepsy death, please contact our support team on01235 772852.
WHAT IS SUDEP?
The definition of SUDEP was first debated at the first international research workshop on sudden death in epilepsy in London in 1997. The definition that was widely used and adopted by NICE guidelines was proposed by Dr Lina Nashef: “Sudden, unexpected, witnessed or unwitnessed, nontraumatic and nondrowning death in patients withepilepsy
NATIONAL EPILEPSY WEEK 2021 (24-30 MAY) National Epilepsy Week is an annual event where the epilepsy community comes together to raise awareness about what living with epilepsy is like. But this year, like the last, remains very different. Things are starting to return to ‘normal’ as we move #BeyondCOVID, but many things have also changed dramatically for people with epilepsy, their clinicians/services, their families and forABOUT THE REGISTER
The Epilepsy Deaths Register is endorsed by the government and promoted by professional and patient organisations around the UK to provide: a single-point for reporting deaths. reports on information provided. support for anyone wishing to help research into SUDEP and epilepsy deaths. coordination of involvement in research. EPILEPSY SAFETY DEVICES They are designed to recognise that a seizure has occurred or that breathing has been disrupted, triggering an alarm so that assistance can be provided.This is a rapidly developing area of research. Investigation into the development and the benefit of such monitors is ongoing and at this time there is no evidence to show that using an alarm or device can guarantee the safety EPSMON: EPILEPSY SELF-MONITORING It can also help you decide whether to seek help earlier than your next planned visit. EpSMon is designed so that you can be aware of why and when a medical review of your epilepsy is important. EpSMon cannot guarantee that you are never at risk, but it can help STORIES | SUDEP ACTION Bea aged 18. Bea only ever had four seizures in the past. Read more. Becky aged 11. On a wet spring morning in May 2004, just three months short of her twelfth birthday, Becky became a victim of SUDEP. Read more. Ben aged 27. Benjamin was born on Christmas Eve 1989. Read more. MBRRACE MATERNAL DEATHS INQUIRY 2020 MBRRACE Maternal Deaths Inquiry (2020)Showing a doubling of epilepsy deaths among pregnant women with epilepsy The 2020 MBRRACE (Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries in UK) report has found that the number of maternal deaths of women with epilepsy has doubled in three years, during 2016 to 2018. THE WALES EPILEPSY RESEARCH NETWORK The Wales Epilepsy Research Network (WERN) is supporting SUDEP Action’s national register of epilepsy-related deaths, and sees this as a major opportunity to understand better the epidemiology and the preventable risk factors of this tragic outcome. WERN has strong existing databases of epilepsy patients attending specialistclinicians in
PROFESSOR MIKE KERR TO RECEIVE EXCELLENCE AWARD We are very happy to announce that the British Branch of the International League Against Epilepsy (ILAE) ‘Excellence in Epilepsy Award’ for 2019 has been awarded to Professor Mike Kerr, who is a Trustee and vice-chair of SUDEP Action. The accolade is for lifetime achievement in the field of epilepsy.Professor Kerr specialises in managing epilepsy in people with intellectualSUDEP ACTION
Our services include bereavement support, counselling, help with understanding the inquest process and in collaboration with UK research teams, the involvement of bereaved families and professionals in research through the Epilepsy Deaths Register. If you have been affected by an epilepsy death, please contact our support team on01235 772852.
WHAT IS SUDEP?
The definition of SUDEP was first debated at the first international research workshop on sudden death in epilepsy in London in 1997. The definition that was widely used and adopted by NICE guidelines was proposed by Dr Lina Nashef: “Sudden, unexpected, witnessed or unwitnessed, nontraumatic and nondrowning death in patients withepilepsy
NATIONAL EPILEPSY WEEK 2021 (24-30 MAY) National Epilepsy Week is an annual event where the epilepsy community comes together to raise awareness about what living with epilepsy is like. But this year, like the last, remains very different. Things are starting to return to ‘normal’ as we move #BeyondCOVID, but many things have also changed dramatically for people with epilepsy, their clinicians/services, their families and forABOUT THE REGISTER
The Epilepsy Deaths Register is endorsed by the government and promoted by professional and patient organisations around the UK to provide: a single-point for reporting deaths. reports on information provided. support for anyone wishing to help research into SUDEP and epilepsy deaths. coordination of involvement in research. EPILEPSY SAFETY DEVICES They are designed to recognise that a seizure has occurred or that breathing has been disrupted, triggering an alarm so that assistance can be provided.This is a rapidly developing area of research. Investigation into the development and the benefit of such monitors is ongoing and at this time there is no evidence to show that using an alarm or device can guarantee the safety EPSMON: EPILEPSY SELF-MONITORING It can also help you decide whether to seek help earlier than your next planned visit. EpSMon is designed so that you can be aware of why and when a medical review of your epilepsy is important. EpSMon cannot guarantee that you are never at risk, but it can help STORIES | SUDEP ACTION Bea aged 18. Bea only ever had four seizures in the past. Read more. Becky aged 11. On a wet spring morning in May 2004, just three months short of her twelfth birthday, Becky became a victim of SUDEP. Read more. Ben aged 27. Benjamin was born on Christmas Eve 1989. Read more. MBRRACE MATERNAL DEATHS INQUIRY 2020 MBRRACE Maternal Deaths Inquiry (2020)Showing a doubling of epilepsy deaths among pregnant women with epilepsy The 2020 MBRRACE (Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries in UK) report has found that the number of maternal deaths of women with epilepsy has doubled in three years, during 2016 to 2018. THE WALES EPILEPSY RESEARCH NETWORK The Wales Epilepsy Research Network (WERN) is supporting SUDEP Action’s national register of epilepsy-related deaths, and sees this as a major opportunity to understand better the epidemiology and the preventable risk factors of this tragic outcome. WERN has strong existing databases of epilepsy patients attending specialistclinicians in
PROFESSOR MIKE KERR TO RECEIVE EXCELLENCE AWARD We are very happy to announce that the British Branch of the International League Against Epilepsy (ILAE) ‘Excellence in Epilepsy Award’ for 2019 has been awarded to Professor Mike Kerr, who is a Trustee and vice-chair of SUDEP Action. The accolade is for lifetime achievement in the field of epilepsy.Professor Kerr specialises in managing epilepsy in people with intellectualWHAT IS SUDEP?
The definition of SUDEP was first debated at the first international research workshop on sudden death in epilepsy in London in 1997. The definition that was widely used and adopted by NICE guidelines was proposed by Dr Lina Nashef: “Sudden, unexpected, witnessed or unwitnessed, nontraumatic and nondrowning death in patients withepilepsy
ABOUT US | SUDEP ACTION Epilepsy is one of the top-ten causes of early death. Sudden Unexpected Death in Epilepsy or SUDEP can often be traumatic for families and distressing for professionals, all of whom have questions. At SUDEP Action, we focus our efforts on the priorities that bereaved families tell us are important:• To prevent deaths• To be supported• To be involvedWe have won national and STORIES | SUDEP ACTION Bea aged 18. Bea only ever had four seizures in the past. Read more. Becky aged 11. On a wet spring morning in May 2004, just three months short of her twelfth birthday, Becky became a victim of SUDEP. Read more. Ben aged 27. Benjamin was born on Christmas Eve 1989. Read more.I WANT TO DONATE
With your donations, we can save lives.Help fund our Prevent21 Campaign. For a breakdown of how your donations could help, take a look at the campaign leaflet. To see what else your money could go towards, take a look the charity annual reports to see how money has been spent.There are lots of ways you can donate to SUDEP Action:You can donate online or via our Facebook page EPILEPSY RELATED DEATHS Epilepsy Related Deaths. There are over 1000 epilepsy- related deaths each year in the UK – but this figure is likely to be underestimated. Many epilepsy deaths are due to: However it is thought that up to 50% are due to Sudden Unexpected Death in Epilepsy (SUDEP). It can be scary to think about the risk of death related to along-term health
RAISING AWARENESS OF EPILEPSY RISKS WITH PEOPLE WITH Every day in this country, 3 people die from epilepsy. Studies have shown people with both epilepsy and a learning disability, are at an increased risk of Sudden Unexpected Death in Epilepsy (SUDEP) . A recent study in Leicester found that epilepsy is the second most common cause of death for people with learning disabilities. NATIONAL CONFERENCE 2019 What happened at the 2019 National Conference?The National Conference 2019, in Leamington Spa was an emtional and inspiring event.Allowing for supporters to spend valuable time together, building up new and existing relationships, and to hear the latest research and project updates from the charity.It started with an interactive Q&A session with Dr Rhys Thomas and Dr Arjune COFFEE CLUB MEETINGS There are three deaths a day from epilepsy and the people affected are spread throughout the UK; access to local meetings can be a lifesaver for them while they struggle to understand what happened and why.SUDEP Action Coffee Club meetings are in areas all around the UK and throughout the year.People grieve in different ways, even within thesame family.
MARKETING AND FUNDRAISING MANAGER JOB DESCRIPTION … MARKETING AND FUNDRAISING MANAGER JOB DESCRIPTION Post: Marketing and Fundraising Manager Reporting to: CEO Hours: 30 hours (full-time considered - 37.5 hours per week) Salary: £26,000 - £28,000 (for full-time position) Background to CharityEPILEPSY BEREAVED
Purple Day Pack. Purple Day began in 2008, when Cassidy Megan, motivated by her own struggles with epilepsy, wanted to dispel epilepsy myths & raise awareness across the world.SUDEP ACTION
There are at least three epilepsy-related deaths a day in the UK. SUDEP Action is dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths including Sudden Unexpected Death inEpilepsy.
WHAT IS SUDEP?
What are the criteria for categorising a death as SUDEP? The definition of SUDEP was first debated at the first international research workshop on sudden death in epilepsy in London in 1997.. The definition that was widely used and adopted by NICE guidelines was proposed by Dr Lina Nashef: NATIONAL EPILEPSY WEEK 2021 (24-30 MAY) National Epilepsy Week is an annual event where the epilepsy community comes together to raise awareness about what living with epilepsy is like. But this year, like the last, remains very different. Things are starting to return to ‘normal’ as we move #BeyondCOVID, but many things have also changed dramatically for people with epilepsy, their clinicians/services, their families and forABOUT THE REGISTER
If you are reading about the register, you probably already know or have experience of SUDEP (Sudden Unexpected Death in Epilepsy) or anepilepsy death.
EPILEPSY SAFETY DEVICES They are designed to recognise that a seizure has occurred or that breathing has been disrupted, triggering an alarm so that assistance can be provided.This is a rapidly developing area of research. Investigation into the development and the benefit of such monitors is ongoing and at this time there is no evidence to show that using an alarm or device can guarantee the safety STORIES | SUDEP ACTION Disclaimer. SUDEP Action have permission from the families involved in all the stories on our website. Please do not reproduce any of theseimages or
EPSMON: EPILEPSY SELF-MONITORING Safety in your pocket Download now for free Life can get busy. Keeping track of your epilepsy or general well-being may not be easy. National guidelines encourage regular review of your epilepsy with your GP, but this may only be once in a year. How do you check your risk the restof the time?
MBRRACE MATERNAL DEATHS INQUIRY 2020 MBRRACE Maternal Deaths Inquiry (2020)Showing a doubling of epilepsy deaths among pregnant women with epilepsy The 2020 MBRRACE (Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries in UK) report has found that the number of maternal deaths of women with epilepsy has doubled in three years, during 2016 to 2018. THE WALES EPILEPSY RESEARCH NETWORK WERN has strong existing databases of epilepsy patients attending specialist clinicians in Wales and has been active in investigating sudden deaths in epilepsy. Unexplained and unexpected deaths are too common in epilepsy and are a powerful motivation behind people volunteering to help us at WERN; both for our family genetics projects and for our patient research and PROFESSOR MIKE KERR TO RECEIVE EXCELLENCE AWARD We are very happy to announce that the British Branch of the International League Against Epilepsy (ILAE) ‘Excellence in Epilepsy Award’ for 2019 has been awarded to Professor Mike Kerr, who is a Trustee and vice-chair of SUDEP Action. The accolade is for lifetime achievement in the field of epilepsy.Professor Kerr specialises in managing epilepsy in people with intellectualSUDEP ACTION
There are at least three epilepsy-related deaths a day in the UK. SUDEP Action is dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths including Sudden Unexpected Death inEpilepsy.
WHAT IS SUDEP?
What are the criteria for categorising a death as SUDEP? The definition of SUDEP was first debated at the first international research workshop on sudden death in epilepsy in London in 1997.. The definition that was widely used and adopted by NICE guidelines was proposed by Dr Lina Nashef: NATIONAL EPILEPSY WEEK 2021 (24-30 MAY) National Epilepsy Week is an annual event where the epilepsy community comes together to raise awareness about what living with epilepsy is like. But this year, like the last, remains very different. Things are starting to return to ‘normal’ as we move #BeyondCOVID, but many things have also changed dramatically for people with epilepsy, their clinicians/services, their families and forABOUT THE REGISTER
If you are reading about the register, you probably already know or have experience of SUDEP (Sudden Unexpected Death in Epilepsy) or anepilepsy death.
EPILEPSY SAFETY DEVICES They are designed to recognise that a seizure has occurred or that breathing has been disrupted, triggering an alarm so that assistance can be provided.This is a rapidly developing area of research. Investigation into the development and the benefit of such monitors is ongoing and at this time there is no evidence to show that using an alarm or device can guarantee the safety STORIES | SUDEP ACTION Disclaimer. SUDEP Action have permission from the families involved in all the stories on our website. Please do not reproduce any of theseimages or
EPSMON: EPILEPSY SELF-MONITORING Safety in your pocket Download now for free Life can get busy. Keeping track of your epilepsy or general well-being may not be easy. National guidelines encourage regular review of your epilepsy with your GP, but this may only be once in a year. How do you check your risk the restof the time?
MBRRACE MATERNAL DEATHS INQUIRY 2020 MBRRACE Maternal Deaths Inquiry (2020)Showing a doubling of epilepsy deaths among pregnant women with epilepsy The 2020 MBRRACE (Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries in UK) report has found that the number of maternal deaths of women with epilepsy has doubled in three years, during 2016 to 2018. THE WALES EPILEPSY RESEARCH NETWORK WERN has strong existing databases of epilepsy patients attending specialist clinicians in Wales and has been active in investigating sudden deaths in epilepsy. Unexplained and unexpected deaths are too common in epilepsy and are a powerful motivation behind people volunteering to help us at WERN; both for our family genetics projects and for our patient research and PROFESSOR MIKE KERR TO RECEIVE EXCELLENCE AWARD We are very happy to announce that the British Branch of the International League Against Epilepsy (ILAE) ‘Excellence in Epilepsy Award’ for 2019 has been awarded to Professor Mike Kerr, who is a Trustee and vice-chair of SUDEP Action. The accolade is for lifetime achievement in the field of epilepsy.Professor Kerr specialises in managing epilepsy in people with intellectualWHAT IS SUDEP?
What are the criteria for categorising a death as SUDEP? The definition of SUDEP was first debated at the first international research workshop on sudden death in epilepsy in London in 1997.. The definition that was widely used and adopted by NICE guidelines was proposed by Dr Lina Nashef: ABOUT US | SUDEP ACTION Epilepsy is one of the top-ten causes of early death. Sudden Unexpected Death in Epilepsy or SUDEP can often be traumatic for families and distressing for professionals, all of whom have questions. At SUDEP Action, we focus our efforts on the priorities that bereaved families tell us are important:• To prevent deaths• To be supported• To be involvedWe have won national and STORIES | SUDEP ACTION Disclaimer. SUDEP Action have permission from the families involved in all the stories on our website. Please do not reproduce any of theseimages or
I WANT TO DONATE
With your donations, we can save lives.Help fund our Prevent21 Campaign. For a breakdown of how your donations could help, take a look at the campaign leaflet. To see what else your money could go towards, take a look the charity annual reports to see how money has been spent.There are lots of ways you can donate to SUDEP Action:You can donate online or via our Facebook page EPILEPSY RELATED DEATHS Research has shown that many epilepsy deaths are known to be potentially avoidable – which shows there is much that people with epilepsy, their clinicians and their families can do to reduce risks.. That’s why we believe in giving people as much information as possible about what the risks are, so they can make informed choices about their epilepsy, and why we provide free information and RAISING AWARENESS OF EPILEPSY RISKS WITH PEOPLE WITH Every day in this country, 3 people die from epilepsy. Studies have shown people with both epilepsy and a learning disability, are at an increased risk of Sudden Unexpected Death in Epilepsy (SUDEP) . A recent study in Leicester found that epilepsy is the second most common cause of death for people with learning disabilities. COFFEE CLUB MEETINGS There are three deaths a day from epilepsy and the people affected are spread throughout the UK; access to local meetings can be a lifesaver for them while they struggle to understand what happened and why.SUDEP Action Coffee Club meetings are in areas all around the UK and throughout the year.People grieve in different ways, even within thesame family.
NATIONAL CONFERENCE 2019 What happened at the 2019 National Conference?The National Conference 2019, in Leamington Spa was an emtional and inspiring event.Allowing for supporters to spend valuable time together, building up new and existing relationships, and to hear the latest research and project updates from the charity.It started with an interactive Q&A session with Dr Rhys Thomas and Dr Arjune SUDEP.ORG SUDEP ACTION How can you reduce your risk? The strongest risk factor is a generalised tonic-clonic seizure (which some people call a ‘grand mal’). The more frequent MARKETING AND FUNDRAISING MANAGER JOB DESCRIPTION … MARKETING AND FUNDRAISING MANAGER JOB DESCRIPTION Post: Marketing and Fundraising Manager Reporting to: CEO Hours: 30 hours (full-time considered - 37.5 hours per week) Salary: £26,000 - £28,000 (for full-time position) Background to CharitySUDEP ACTION
There are at least three epilepsy-related deaths a day in the UK. SUDEP Action is dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths including Sudden Unexpected Death inEpilepsy.
WHAT IS SUDEP?
What are the criteria for categorising a death as SUDEP? The definition of SUDEP was first debated at the first international research workshop on sudden death in epilepsy in London in 1997.. The definition that was widely used and adopted by NICE guidelines was proposed by Dr Lina Nashef: NATIONAL EPILEPSY WEEK 2021 (24-30 MAY) National Epilepsy Week is an annual event where the epilepsy community comes together to raise awareness about what living with epilepsy is like. But this year, like the last, remains very different. Things are starting to return to ‘normal’ as we move #BeyondCOVID, but many things have also changed dramatically for people with epilepsy, their clinicians/services, their families and forABOUT THE REGISTER
If you are reading about the register, you probably already know or have experience of SUDEP (Sudden Unexpected Death in Epilepsy) or anepilepsy death.
EPILEPSY SAFETY DEVICES They are designed to recognise that a seizure has occurred or that breathing has been disrupted, triggering an alarm so that assistance can be provided.This is a rapidly developing area of research. Investigation into the development and the benefit of such monitors is ongoing and at this time there is no evidence to show that using an alarm or device can guarantee the safety STORIES | SUDEP ACTION Disclaimer. SUDEP Action have permission from the families involved in all the stories on our website. Please do not reproduce any of theseimages or
EPSMON: EPILEPSY SELF-MONITORING Safety in your pocket Download now for free Life can get busy. Keeping track of your epilepsy or general well-being may not be easy. National guidelines encourage regular review of your epilepsy with your GP, but this may only be once in a year. How do you check your risk the restof the time?
MBRRACE MATERNAL DEATHS INQUIRY 2020 MBRRACE Maternal Deaths Inquiry (2020)Showing a doubling of epilepsy deaths among pregnant women with epilepsy The 2020 MBRRACE (Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries in UK) report has found that the number of maternal deaths of women with epilepsy has doubled in three years, during 2016 to 2018. THE WALES EPILEPSY RESEARCH NETWORK WERN has strong existing databases of epilepsy patients attending specialist clinicians in Wales and has been active in investigating sudden deaths in epilepsy. Unexplained and unexpected deaths are too common in epilepsy and are a powerful motivation behind people volunteering to help us at WERN; both for our family genetics projects and for our patient research and PROFESSOR MIKE KERR TO RECEIVE EXCELLENCE AWARD We are very happy to announce that the British Branch of the International League Against Epilepsy (ILAE) ‘Excellence in Epilepsy Award’ for 2019 has been awarded to Professor Mike Kerr, who is a Trustee and vice-chair of SUDEP Action. The accolade is for lifetime achievement in the field of epilepsy.Professor Kerr specialises in managing epilepsy in people with intellectualSUDEP ACTION
There are at least three epilepsy-related deaths a day in the UK. SUDEP Action is dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths including Sudden Unexpected Death inEpilepsy.
WHAT IS SUDEP?
What are the criteria for categorising a death as SUDEP? The definition of SUDEP was first debated at the first international research workshop on sudden death in epilepsy in London in 1997.. The definition that was widely used and adopted by NICE guidelines was proposed by Dr Lina Nashef: NATIONAL EPILEPSY WEEK 2021 (24-30 MAY) National Epilepsy Week is an annual event where the epilepsy community comes together to raise awareness about what living with epilepsy is like. But this year, like the last, remains very different. Things are starting to return to ‘normal’ as we move #BeyondCOVID, but many things have also changed dramatically for people with epilepsy, their clinicians/services, their families and forABOUT THE REGISTER
If you are reading about the register, you probably already know or have experience of SUDEP (Sudden Unexpected Death in Epilepsy) or anepilepsy death.
EPILEPSY SAFETY DEVICES They are designed to recognise that a seizure has occurred or that breathing has been disrupted, triggering an alarm so that assistance can be provided.This is a rapidly developing area of research. Investigation into the development and the benefit of such monitors is ongoing and at this time there is no evidence to show that using an alarm or device can guarantee the safety STORIES | SUDEP ACTION Disclaimer. SUDEP Action have permission from the families involved in all the stories on our website. Please do not reproduce any of theseimages or
EPSMON: EPILEPSY SELF-MONITORING Safety in your pocket Download now for free Life can get busy. Keeping track of your epilepsy or general well-being may not be easy. National guidelines encourage regular review of your epilepsy with your GP, but this may only be once in a year. How do you check your risk the restof the time?
MBRRACE MATERNAL DEATHS INQUIRY 2020 MBRRACE Maternal Deaths Inquiry (2020)Showing a doubling of epilepsy deaths among pregnant women with epilepsy The 2020 MBRRACE (Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries in UK) report has found that the number of maternal deaths of women with epilepsy has doubled in three years, during 2016 to 2018. THE WALES EPILEPSY RESEARCH NETWORK WERN has strong existing databases of epilepsy patients attending specialist clinicians in Wales and has been active in investigating sudden deaths in epilepsy. Unexplained and unexpected deaths are too common in epilepsy and are a powerful motivation behind people volunteering to help us at WERN; both for our family genetics projects and for our patient research and PROFESSOR MIKE KERR TO RECEIVE EXCELLENCE AWARD We are very happy to announce that the British Branch of the International League Against Epilepsy (ILAE) ‘Excellence in Epilepsy Award’ for 2019 has been awarded to Professor Mike Kerr, who is a Trustee and vice-chair of SUDEP Action. The accolade is for lifetime achievement in the field of epilepsy.Professor Kerr specialises in managing epilepsy in people with intellectualWHAT IS SUDEP?
What are the criteria for categorising a death as SUDEP? The definition of SUDEP was first debated at the first international research workshop on sudden death in epilepsy in London in 1997.. The definition that was widely used and adopted by NICE guidelines was proposed by Dr Lina Nashef: ABOUT US | SUDEP ACTION Epilepsy is one of the top-ten causes of early death. Sudden Unexpected Death in Epilepsy or SUDEP can often be traumatic for families and distressing for professionals, all of whom have questions. At SUDEP Action, we focus our efforts on the priorities that bereaved families tell us are important:• To prevent deaths• To be supported• To be involvedWe have won national and STORIES | SUDEP ACTION Disclaimer. SUDEP Action have permission from the families involved in all the stories on our website. Please do not reproduce any of theseimages or
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With your donations, we can save lives.Help fund our Prevent21 Campaign. For a breakdown of how your donations could help, take a look at the campaign leaflet. To see what else your money could go towards, take a look the charity annual reports to see how money has been spent.There are lots of ways you can donate to SUDEP Action:You can donate online or via our Facebook page EPILEPSY RELATED DEATHS Research has shown that many epilepsy deaths are known to be potentially avoidable – which shows there is much that people with epilepsy, their clinicians and their families can do to reduce risks.. That’s why we believe in giving people as much information as possible about what the risks are, so they can make informed choices about their epilepsy, and why we provide free information and RAISING AWARENESS OF EPILEPSY RISKS WITH PEOPLE WITH Every day in this country, 3 people die from epilepsy. Studies have shown people with both epilepsy and a learning disability, are at an increased risk of Sudden Unexpected Death in Epilepsy (SUDEP) . A recent study in Leicester found that epilepsy is the second most common cause of death for people with learning disabilities. COFFEE CLUB MEETINGS There are three deaths a day from epilepsy and the people affected are spread throughout the UK; access to local meetings can be a lifesaver for them while they struggle to understand what happened and why.SUDEP Action Coffee Club meetings are in areas all around the UK and throughout the year.People grieve in different ways, even within thesame family.
NATIONAL CONFERENCE 2019 What happened at the 2019 National Conference?The National Conference 2019, in Leamington Spa was an emtional and inspiring event.Allowing for supporters to spend valuable time together, building up new and existing relationships, and to hear the latest research and project updates from the charity.It started with an interactive Q&A session with Dr Rhys Thomas and Dr Arjune MARKETING AND FUNDRAISING MANAGER JOB DESCRIPTION … MARKETING AND FUNDRAISING MANAGER JOB DESCRIPTION Post: Marketing and Fundraising Manager Reporting to: CEO Hours: 30 hours (full-time considered - 37.5 hours per week) Salary: £26,000 - £28,000 (for full-time position) Background to CharityEPILEPSY BEREAVED
Purple Day Pack. Purple Day began in 2008, when Cassidy Megan, motivated by her own struggles with epilepsy, wanted to dispel epilepsy myths & raise awareness across the world.Okay
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If you have been bereaved by an epilepsy-related death, please contact us on 01235 772852 or email support@sudep.orgRead more
LATEST RESEARCH - LIVES CUT SHORT Learn more about the report on urgent measures to tackle deaths in epilepsy and support the bereaved during the COVID-19 pandemicRead more
WHAT IS SUDEP?
Sudden Unexpected Death in Epilepsy (SUDEP) is when a person with epilepsy dies suddenly and prematurely and no reason for death isfound.
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WE INVITE YOU TO SHARE YOUR STORY Your experience has the power to make an impact and help SUDEP Action to break down barriers for change. Contact us to learn more.Read more
EPILEPSY DEATHS REGISTER During the current pandemic, epilepsy risk is changing - services are stretched and, tragically, deaths are still happening.The Epilepsy Deaths Register is a trusted place for learning from deaths and, now more than ever, sharing your experiences can inspire the change that can help save lives.Read more
WE NEED YOUR HELP - COVID-19 RESEARCH SURVEYS We are committed to making sure every voice is heard. If you're interested in contributing to our research on COVID-19 and #epilepsy, take a look at our international research projects.Read more
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I want to get involved I want to get involved I want to report a death I want to report a death WELCOME TO SUDEP ACTION Welcome to SUDEP Action THERE ARE AT LEAST THREE EPILEPSY-RELATED DEATHS A DAY IN THE UK. SUDEP Action is dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths including Sudden Unexpected Death in Epilepsy. We are the only UK charity specialised in supporting and involving people bereaved by epilepsy. Our services include bereavement support, counselling, help with understanding the inquest process and in collaboration with UK research teams, the involvement of bereaved families and professionals in research through the Epilepsy Deaths Register. If you have been affected by an epilepsy death, please contact our support team on01235 772852.
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Epilepsy Self-Monitor SUDEP and Seizure Safety Checklist FOR PROFESSIONALS: Learn moreLATEST NEWS
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NATIONAL EPILEPSY WEEK 2021 (24-30 MAY)24th May 2021
EPILEPSY SAFETY APP ACHIEVE CLEAN BILL OF DIGITAL HEALTH FROM LEADINGAPP REVIEWER
20th May 2021
CHARITY BLOG FROM SUDEP ACTION CEO - MAY 20214th May 2021
LATEST COVID-19 AND EPILEPSY RESEARCH SHOWS RISE IN RISKS AND DROP INACCESS TO SERVICES
15th Apr 2021
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