Knowledge saves lives
#Prevent21 Find out more at: www.sudep.org/prevent21
SUDEP Action Keeping in touch Making every epilepsy death count January 2018
Hello there ...
I hope that you will feel uplifted by the good award of an MBE this month to Dr Rohit newsSUDEP we are able to share. The pages here Shankar. Recent coverage in Channel 4 are full of stories ofAc couragetion and inspirational News and Sky One has boosted the charity, people,Making as wellevery poems epilepsy and stories death of personalcount as we start 2018, with our innovations linked grief from those we support and work to falling deaths; at a time when the NHS and alongside. others are finally recognising SUDEP and epilepsy deaths as an issue requiring attention. We have set a date for our upcoming National Conference - a great chance Boosted by all this good news, we have for supporters to meet and hear what’s launched PREVENT21 our new campaign happeningSUDEP at the charity. focused on the 21 deaths a week, and what Action can be done to stop deaths and help families News about our successful appeal to fund a now. clinicalMaking trial every into a wearableepilepsy epilepsy death detectioncount device, has led directly to development Finally, with this newsletter, there is a funding for the next five years - the feedback survey. We are looking to revamp largest funding to a researcher working the newsletter and learn more about what on SUDEP in the UK since the charity was is important to you. Is it a new format? Or founded. Read this amazing story here! getting the news more regularly? We would love to hear from you. HM The Queen has also recognised the importance of our safety tools through the Jane Hanna OBE Chief Executive, SUDEP Action sudep.org President’s Reception A closer look at the MBRRACE Maternal event to launch - Deaths Report SUDEP Action’s event took place Epilepsy claims the lives of at least 21 Women with epilepsy are dying report (Mothers & Babies: Reducing on Friday 17 November, hosted by people each week in the UK, mostly in and unaware of the risks they face Risk through Audits and Confidential Wantage and Didcot MP Ed Vaizey, the the young and healthy, leaving families according to a new report. But what Enquiries across the UK) focused on charity’s President. broken and searching for answers. steps are being taken to reduce deaths epilepsy as one of its main conditions. in mothers with epilepsy? The Mayor of Wantage, the Deputy Ed Vaizey MP congratulated the charity 2,500 women with epilepsy become Lord Lieutenant for Oxfordshire on its achievements over the last 21 A recent enquiry into maternal deaths pregnant each year, a time which has (Mrs. Diana Bagnall) along with many years on behalf of people with epilepsy has shown significant failings in care for been flagged in research as being members of the local community and and families who have lost a loved one women with epilepsy during and after particularly risky for women with local businesses all attended in support to epilepsy. pregnancy; leading to many potentially epilepsy (Nashef, 2014). This is a time of Prevent21, a national appeal aiming “Leaving no stone unturned, while avoidable deaths. The MBRRACE which should be their happiest, yet for to raise over £1 million over the next also supporting bereaved families at some, it can prove fatal. four years to tackle these young the darkest time of their lives, this sudden deaths. small and determined team have been Our EpSMon app for people with working together alongside supportive epilepsy and our SUDEP and Seizure clinicians from the UK and beyond, with Safety Checklist for clinicians, as well a shared conviction - which is to shine a as resources such as the Pregnancy light on these sudden epilepsy deaths.” Toolkit created by Kim Morely (Epilepsy Specialist Midwife) are examples of how solutions to these problems can be made freely available and accessible now to those who need them. Jane Hanna CEO, spoke of the journeys taken by those supported by the charity and the charity itself. Jane highlighted the urgent need for action to be taken SUDEP Action partner with Epilepsy Action to reduce the number of potentially Australia for global awareness campaign (Pictured Jim Convery, Ed Vaizey MP, preventable epilepsy deaths. Cath Convery, Barrie Burns, Jan Burns) “It is ENTIRELY due to the strength and SUDEP Action has established an exciting new collaboration with, and Hosted by charity president, Ed Vaizey generosity of our bereaved community that such significant understanding funded by, Epilepsy Action Australia in MP, the event gave the SUDEP Action time for SUDEP Action Day 2017. This team a chance to showcase their work and progress has been made so far, and I can’t thank them enough for joining collaboration provides the most current over the last 21 years and highlight the information related to epilepsy-related key vision for the new appeal: us in taking this fight forward! At a time when the worst thing imaginable death to families across Australia. has happened to them, it shows just SUDEP Action’s new information how true the quote from Dante is ‘that Epilepsy affects approximately 250,000 pages on epilepsy risks, mortality Reducing deaths from Australians, and yet very few people and risk reduction. They will also be epilepsy and ensuring that from small sparks may burst a mighty flame’.” are aware that people with epilepsy distributing specially adapted versions critical lifesaving knowledge and are at risk of Sudden Unexpected of our information leaflets to clinicians, awareness of risk management Death from Epilepsy (SUDEP). families, and people with epilepsy is brought to the attention More information about the campaign and across Australia; starting with SUDEP of hundreds and thousands The first phase of this project has Explained for Health Professionals and of people. how to get involved can be found at www.sudep.org/prevent21. seen Epilepsy Action Australia adopt Reducing Risks leaflets. 2 3 The choker-style necklace that could save MPs express support for SUDEP Action and hundreds of lives their bereaved families at Westminster event
SUDEP Action Chief Executive, Jane help drive this issue forward, and help A tiny wearable device that resembles be available on the NHS to every young Hanna OBE, attended an event (17 overcome some of the barriers faced in a necklace could in the future save person that needs it within six years. Oct) with MPs and Ministers held getting information and tools to people the lives of hundreds of young people at Portcullis House, Westminster. with epilepsy, their families, and each year. Convulsive night-time seizures – where Organised by Ed Vaizey MP (pictured), clinicians. As well as, helping improve the person’s limbs shake and they brought together a dedicated group of signposting to support services The choker-style gadget, which is worn lose consciousness – can be the most SUDEP Action supporters, clinicians, following an epilepsy death. We look around the neck at night, alerts a dangerous and are one of many known and MPs to highlight the issues faced forward to working closely with these nearby parent, partner or friend, that risk factors associated with sudden by the Charity and urge MPs to do what MPs and sharing news of how this their loved-one is suffering from a life- death. they could to help us tackle this issue develops over the coming months. threatening event, such as a pause in head-on and prevent future epilepsy their breathing (apnoea) or a change in Each year, 600 British people die as a deaths. SUDEP Action wish to thank all our how their heartbeats. result of SUDEP – Sudden Unexpected supporters who contacted their MP Death in Epilepsy – more than four The one-hour event saw 20 MPs (some about this event, as well as the families By sending a wireless signal to an times the number of babies who suffer of which attended at the request of and clinicians who supported us at the alarm, the carer has enough time cot death. their constituents who support SUDEP event, and spoke so powerfully during to put the patient into the recovery Action), hear about the devastating the meeting: Jan, Barrie and Izzie position – which can be enough to kick- Most at risk from SUDEP are young impact of epilepsy deaths first hand, Burns, Roger and Sandie Scrivens, start breathing again - to administer people aged between 20 and 40, and as well as hearing about the amazing Michelle Samuel, Professor Leone CPR, or call for help. include those who leave home for work achieved by the charity over the Ridsdale and Dr Gabriella Wojewodka. college, university or work, and women last 21 years. Bereaved families at SUDEP Action, who stop epilepsy medication during Jane Hanna (also pictured) who led the launched a fundraising campaign for the pregnancy. Bereaved families who crowdfunded meeting commented, “We know our device at a Downing Street reception, early trials of a SUDEP alert device, major challenge is to the taboo that hosted by Samantha Cameron in 2014 Early trials, led by Professor Esther which has led to funding of 2 million still persists in - hope it will prevent other parents Rodriguez-Villegas at Imperial College Euros to a research team, announced the 21st century from suffering the nightmare of losing London, along with researchers at this news to MPs. They also highlighted towards a child. University College London, have that SUDEP Action had solutions these deaths. yielded positive results among a available to save lives now, that they Families Two million euros have been granted sample of apnoea sufferers. A further wanted attention drawn to what could were hugely from the European Research Council 50 people with epilepsy are set to take be done to help, and called for support encouraged (ERC) to carry out research towards part in the program this year, thanks to for an enquiry into avoidable deaths. by the strong the creation of a wearable device, to the crowdfunding campaign by SUDEP support we pick up and alert to life-threatening Action and their bereaved family Many of the MPs in attendance have received from signals. A device which they hope will community. since pledged to do what they can to MPs today.” 4 5 SUDEP Action Day – A global day of awareness
SUDEP Action Day is a special day which brings organisations and people together to raise awareness of SUDEP worldwide. Launched on 23 October 2014 (as SUDEP Awareness Day), it shines a light on the largest cause of death in people with epilepsy, helping empower people through increased awareness, honour the lives lost and raise funds for SUDEP research.
So, what happened during the 2017 event?
Epilepsy organisations in the United States, Europe, Australia and around the world recognized the global awareness day for SUDEP. This international collaboration has grown stronger since 2008. Initiated by families and advocates who were desperate for answers, this movement now includes scientists, clinicians, medical examiners, non-profit organizations, and governmental agencies. This broad group of stakeholders has rallied to end sudden death in epilepsy by launching innovative research projects, awareness and educational campaigns, and bereavement support services.
Progress in the U.S. is supported by a multi-day event devoted to epilepsy mortality known as Partners Against Mortality in Epilepsy (PAME). The fourth PAME meeting will be held June 14-16, 2018 in Alexandria, Virginia. Details about PAME are at http://pame.aesnet.org/.
Tom Stanton, Executive Director of the Danny Did Foundation and Co-Chair of PAME said, “This is the fourth time that we will celebrate SUDEP Action Day, which includes the opportunity to honor the special relationship with bereaved families both in the UK and in the U.S. The SUDEP movement takes daily action to bring us closer to prevention, but October 23rd is an especially lives saved. Ensuring people have a cantilever crane in Dunbartonshire SUDEP Action Day – A global day of awareness powerful day when we can all share common messages and raise our voices together. We are reliable source of information is the first was evengrateful to SUDEP Action lit up in orange and purple to important step. Through combining our mark the day. strengths, we hope to reach as many professionals and families as possible across Australia,” said Carol.
Supporters, again, did amazingly well at raising the profile of SUDEP, many in memory of their loved ones. Sharing their stories, writing blog posts, contacting their local media and raising money.
On 22 October, there was a SUDEP SUDEP Action Day is a special day Progress in the U.S. is supported by a Awareness Walk through London, which brings organisations and people multi-day event devoted to epilepsy which was caught on camera for Sky together to raise awareness of SUDEP mortality known as Partners Against One’s What’s Up TV (new series aired worldwide. Mortality in Epilepsy (PAME). The from 27 January). The 150ft TitanClinical lead for SUDEP & Seizure Safety Checklist fourth PAME meeting will be held June Launched on 23 October 2014 (as 14-16, 2018 in Alexandria, Virginia. awarded MBE SUDEP Awareness Day), it shines a light on the largest cause of death in people Tom Stanton, Executive Director of the Dr. Shankar (Cornwall Partnership NHS Foundation Trust) has been awarded an MBE in this years’ New Clinical lead for SUDEPYear’s Honours & List inSeizure recognition of his dedicationSafety to providing services for people with learning with epilepsy, helping empower people Danny Did Foundation and Co-Chair of disabilites (many of which also have epilepsy). through increased awareness, honour PAME said, Checklist awarded MBESUDEP Action has supported and worked alongside Dr. Shankar for many years on research projects the lives lost and raise funds for SUDEP “This is the fourth time that we will which have developed an understanding of epilepsy deaths, SUDEP and epilepsy risks. His work with the research. celebrate SUDEP Action Day, which Dr. Shankar (Cornwall Partnership CharityDr. includesShankar the Epilepsy is also Life Projectone ofand hasthe since four developed into the SUDEP and Seizure Safety includes the opportunity to honor the NHS Foundation Trust) has beenChecklist Partners, research project, alongside which has SUDEP helped to significantly Action, improve risk awareness and overall safety for So, what happened during the 2017 special relationship with bereaved people with epilepsy, including those living with epilepsy and a learning disability; reducing the number awarded an MBE in this years’ New of epilepsyPlymouth deaths University across Cornwall. and Royal Cornwall event? families both in the UK and in the Year’s Honours List in recognition ofDr. ShankarHospitals is also NHS one ofTrust, the four who Partners, form alongside the NHS SUDEP Action, Plymouth University and Royal U.S. The SUDEP movement takes daily his dedication to providing servicesCornwall supported Hospitals EpSMonNHS Trust, w project.ho form the NHS supported EpSMon project. Epilepsy organisations in the United action to bring us closer to prevention, for people with learning disabilites States, Europe, Australia and around but October 23rd is an especially (many of which also have epilepsy). the world recognized the global powerful day when we can all share awareness day for SUDEP. common messages and raise our voices SUDEP Action has supported and This international collaboration has together. We are grateful to SUDEP worked alongside Dr. Shankar for grown stronger since 2008. Initiated Action for taking the lead to engage many years on research projects which by families and advocates who were all advocates around the world to take have developed an understanding of desperate for answers, this movement part.” epilepsy deaths, SUDEP and epilepsy now includes scientists, clinicians, risks. His work with the Charity includes medical examiners, non-profit SUDEP Action has always welcomed the Epilepsy Life Project and has since
organizations, and governmental collaborations with organisations in the developed into the SUDEP and Seizure (Dr Brendan(Dr Brendan Mclean fromMclean Royal Cornwallfrom RoyalHospitals Cornwall Trust, Jane Hanna from SUDEP Action, Dr Craig Newman agencies. This broad group of UK and across the globe, most recently Safety Checklist research project, which fromHospitals Plymouth University Trust, PeninsulaJane Hanna Schools fromof Medicine SUDEP and Dentistry and Dr Rohit Shankar from Cornwall Partnership NHS Foundation Trust) stakeholders has rallied to end with Epilepsy Action Australia. has helped to significantly improve Action, Dr Craig Newman from Plymouth sudden death in epilepsy by launching Carol Ireland, Chief Executive Officer risk awareness and overall safety for University Peninsula Schools of Medicine and innovative research projects, awareness of Epilepsy Action Australia, said she people with epilepsy, including those Dentistry and Dr Rohit Shankar from Cornwall and educational campaigns, and was “delighted to launch this powerful living with epilepsy and a learning Partnership NHS Foundation Trust) bereavement support services. partnership that I hope will lead to disability; reducing the number of more research, awareness and more epilepsy deaths across Cornwall. 6 7 Why I'm involved with SUDEP Action - Toni SUDEP; so, we weren’t aware of what the weather, everyone that took part we could do to try and reduce his risks, enjoyed the whole experience and it Slade except to try to stop his seizures. All he went like clockwork from start to finish. Our involvement with SUDEP Action wanted was to feel better. In October 2016, we held a Charity Ball came about after my son died on the at Wortley House Hotel in Scunthorpe. 14 August 2015 – he was 26 years old. A charity football match took place 200 people attended, and everyone The post-mortem result came back as on Friday 30 October 2015 at Appleby enjoyed it. We held a Bowling SUDEP and this was the first time we Frodingham, and the local supermarket Tournament at AMF Bowl in May 2017. had heard of it. Family and friends now where Nathan worked in Ashby, held We also produced a Cheeky Charity want to bring awareness of epilepsy and a cake sale and other activities over Calendar for 2017 and one person ran SUDEP to the fore and help raise funds October half term week 2015. in the Grimsby 10k in July 2017. for much-needed research because we are all searching for answers as to what Other events included, a Ten-Pin A Charity Swim took place on Sunday happened. Bowling Tournament held at Ashby 13 August, (on the cusp of the two- Bowl on Sunday 15 November 2015 year anniversary of Nathan’s death) by Nathan is a twin with his sister Taryn fundraising for Epilepsy Society and Derek Cartwright swimming 40 lengths who is 1 minute older. They were born SUDEP Action. at Riddings Pool. A Casino Charity Ball, in South Africa on the 21 December was also held on Saturday 21 October. 1988. Taryn was always a leader We had three runners championing I would like to thank all those people and Nathan a follower. Nathan was our cause, enter the North Lincolnshire who have helped to support us with dyslexic and struggled at school. He Half Marathon on Sunday 15 May 2016. our efforts in fundraising. Especially was bullied at school and struggled to Then, on the 22 May 2016 we had a to those people who are still helping make friends. He struggled with self- Zumbathon held in Gainsborough. to support us today, two years on confidence and trying to understand and struggling with our emotions, as why his peers were not accepting of A Coast to Coast Cycling Charity though it was only yesterday. him. Once Nathan started college and Event (#Ride4Nath) took place from work, he came into his own. He made Southport to Hornsea, 215 miles over He was a sweet soul and never had a friends and was involved with ten-pin a better-paid job. He eventually had no four days from the 24 June 2016 - bad word to say about anyone, very bowling and enjoyed going to the gym. choice but to do two-hour shifts at the where we had 12 people cycling, a considerate, polite and cared - OUR local supermarket, because he felt so driver and two support people. The BEAUTIFUL BOY. Nathan attended adult education to exhausted. He had worked there for first two days were wet ones, the last improve his Maths and English, so eight years and was well loved by all two days were sunny, but no matter Toni Slade he could earn more in a better-paid who worked with him. He had his first job. He bought an expensive camera girlfriend at the age of 25, he was a late and equipment and went to college bloomer! to study photography. He passed his driving test, but twice had to surrender The five years before he passed were his license because of seizures; he difficult. Nathan’s seizures progressed really wanted to be able to drive again. to nocturnal seizures, which remained He bought an expensive bicycle and uncontrolled, despite many changes to went riding whenever he could. his medication. He was having seizures every two weeks. Even though he felt Nathan looked up to his sister and terrible, looked sallow and fatigued for wished he could be like her. He saw a long time, and had visibly lost weight, her moving on in life and felt left he still tried to lead a fairly normal life. behind. She bought her own car and We didn’t have a clue that Nathan was he couldn’t have the same. She earned at risk or that he could die from his more than him, but he couldn’t manage epilepsy, and we weren’t told about 8 9
For Bella For Bella A story of Grief by Diane Player
Pride of Self Grief is a deep dark abyss of despair; Pride of Other it encompasses your mind and your Pride of Possession thoughts. It’s the inability of trying to Pride of Achievement make sense of what has happened to Rising above the surface the one you love so much. The sudden I always felt so uncomfortable with pride shock of them no longer being there is insurmountable; the hurt from the pain But it came true and I felt it strong is never-ending. You keep hoping it’s a For you at your Graduate Show nightmare and that you will wake up and find everything is back to normal; We were all so happy which of course it never will be. Ballerina–perfect You danced amongst us I have flashbacks of that morning of In the warm evening glow having to make phone calls to tell people the dreadful news. I found it So much free wine surreptitiously sipped very difficult using the dreaded D-word Almost as if I would never drink again then and I still do. It’s as if by not Awe of work and talented company saying the D-word it isn’t final and they Smile growing beyond my face haven’t left you, therefore it can’t be Pride of Self true. What else would you have gone on to make?Pride of Other Such energy and creative focus The adjustment you have to make I can now laugh and chat with people Future exhibitions and joy Pride of Possession to your life is never-ending. It’s so whilst feeling lost and sad inside. I Perhaps even us showing together Pride of Achievement overwhelming when your thoughts am very good at silently crying whilst Rising above the surface are devastated by your loss. Lying in reading a book or watching the It's so hard to smile at all these days bed in the morning when you know television. Sadness sweeps rolling–foamed breakers I always felt so uncomfortable with pride you have to face the day but without Lifting and pushing me towards fortunes coast the enthusiasm to do so. Just going I have to disagree with those people But it came true and I felt it strong through the motions of normality is so who say in time the sadness will heal; Searching I will find you on that sweet shore ForBella you at your Graduate Show difficult. Time drags so the days seem it doesn’t. A crucial part of your heart And we will hold hands longer than ever, crying incessantly died that day, along with the one you Children laughing is so exhausting, as you try so hard loved. There isn’t anything you can do Playing in the sun and sculpting sand foreverWe were all so happy to gain control of your emotions but to revive it. One learns to cope and Ballerina–perfect failing dismally. become adept at hiding one’s true Poem by Colin Eveleigh after his daughter Annabel died in 2004. feelings, behind a smile. You danced amongst us I found it so difficult the first time I went SUDEP Action offer telephone supportIn the warm after evening a death, glow as well to the supermarket after Richard’s By Diane Player death. I just wanted to shout at the (Diane’s son Richard is pictured) as ongoing support for people where deaths have happened people, who were laughing and talking, years before. Each milestone Soand much anniversary free wine can surreptitiously be sipped how dare they as my darling son had difficult, our support is ongoingAlmost and open as if ended.I would To never get in drink again just died and how insensitive of them touch please contact us onAwe 01235 of work 772852 and or talented company to behave like that. I wanted people Smile growing beyond my face to realise this but of course, I didn’t as email [email protected] they wouldn’t have understood.
10 What else would you have gone on to make? 11 Such energy and creative focus Future exhibitions and joy Perhaps even us showing together
It's so hard to smile at all these days Sadness sweeps rolling–foamed breakers Lifting and pushing me towards fortunes coast
Searching I will find you on that sweet shore Bella And we will hold hands Children laughing
Playing in the sun and sculpting sand forever
Poem by Colin Eveleigh after his daughter Annabel died in 2004.
Nichola May's Wing Walk
Thank you to our amazing fundraisers Nichola May's Wing At SUDEP Action we are so grateful to all our fundraisers. Your efforts,Walk whatever you do, At SUDEP Action we are so grateful to all howeverour fundraisers. active and Yourhowever efforts, much you whatever raise, makes a difference to what we can do. you do, however active and however much you raise, makes a difference to My Sister Samantha, died 10 years London 10k what we can do.
Knowledge saves lives (Felix’s mother) informed us: “Our lives were devastated when Felix died. The the support of our friends, and the sun Join our national campaign to prevent epilepsy deaths. Take a look at our leaflet for more details. climb was a wonderful thing to do in shone as we started the ascent. As we his memory. We were buoyed up by got higher, surrounded by the stunning 12 13
mountains, we felt elated but also cold water but was so determined to Lynn and Billy McGoff desperately sad that Felix was not with raise money for SUDEP Action that she us. His 17-year-old brother Lucian, swam in that icy loch – the first time along with his friend Kavyian, were she’s swum in UK waters in 25 years!” Lynn and Billy McGoff held a fabulous first to the summit. Special mention The brave team raised over £2000 for quiz night in memory of Samantha must go to Judy Marshall, who detests SUDEP Action in memory of Felix. Ahearn. Lynn informed us: “On Friday 10th November we hosted a charity quiz night in memory of our daughter Julie Coutts Samantha Ahearn who died of SUDEP aged 19. As Sam’s birthday is today Julie Coutts and a tough team of we wanted to do something in her ladies took part in a muddy obstacle memory and at the same time raise course in memory of Marie Morrison. funds and awareness into the dreaded Julie commented: “I participated in SUDEP/Epilepsy. The evening was well ‘Mintlaw Mudder’ in Aberdeenshire attended and people as you can see on Saturday 5th of August with a team from the photo were very competitive. of ladies from Buchan Netball Club. It SUDEP Action, in memory of my sister It was a very successful evening and was an eight-mile run with 27 obstacles who passed away two years ago. It was we can say it is definitely one that we most of which were very muddy and a tough eight miles but lots of fun and would host again.” very wet! I wanted to raise money for giggles along the way!” Lynn and Billy McGoff held a fabulous quiz night in memory of Samantha Ahearn. Lynn informed us: “On Friday 10 November we hosted a charity quiz night in memory of our daughter Samantha Michelle Charlton Ahearn who diedth of SUDEP aged 19. As Sam’s birthday is today we wanted to do something in her memory and at the same time raise funds and awareness into the dreaded SUDEP/Epilepsy. The Michelle Charlton along with many evening was well attended and people as you can see from the photo were very competitive. It was a friends and family held a balloon very successful evening and we can say it is definitely one that we would host again.” release, in memory of Lisa Charlton. Michelle told us: “It was such an unexpected shock when we lost Lisa from our lives, that it left so much unsaid. We decided to do a balloon release as a symbolic way of sending Lisa a message with everything we wish we could say to her. We used this as an opportunity to raise awareness and funds in Lisa's memory for SUDEP Action.”
SUDEP Action staff Katie, Shelly and Vicky
SUDEP Action staff Katie, Shelly and team wore our t-shirts for their warm Vicky attended the Watford Ladies vs up prior to the event and we got to Arsenal Football Ladies football match talk at half time, raising much needed on 16 November. Katie commented awareness. We took along collection SUDEP Action staff Katie, Shelly and Vicky attended the “It was a great event, the Watford buckets and had some friendly young Watford Ladies vs Arsenal Football Ladies football match on 16 November. Katie commented “It was helpers help us collect donations.” 14 a great event, the Watford team15 wore our t-shirts for their warm up prior to the event and we got to talk at half time, raising much needed awareness. We took along collection buckets and had some friendly young helpers help us collect donations.”
Michelle Charlton along with many friends and family held a balloon release, in memory of Lisa Charlton. Michelle told us: “It was such an unexpected shock when we lost Lisa from our lives, that it left so much unsaid. We decided to do a balloon release as a symbolic way of sending Lisa a message with everything we wish we could say to her. We used this as an opportunity to raise awareness and funds in Lisa's memory for SUDEP Action.”
SUDEP Action is dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths, including Sudden Unexpected Death in Epilepsy (SUDEP). We are the only UK charity specialised in supporting and involving people bereaved by epilepsy.
Bereavement support: [email protected] Getting involved and campaigns: [email protected] Fundraising: [email protected]
SUDEP Action Call: 01235 772850 12a Mill Street Email: [email protected] Wantage Oxon OX12 9AQ SUDEP Action, registered charity 1164250 (England & Wales), SC047223 (Scotland) sudep.org