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. Meeting and talking to other families was a lifeline for me. I offered to help the charity with applications to the National Lottery, and to Trusts and Foundations. In due course I was invited to become a Trustee, and I am still involved with Trust funding and awareness-raising. Helping the charity is my way of remembering and honouring my son’s life.
Chair of SUDEP Action; Chair of SUDEP Research Initiative
I wrote about the urgent problem of sudden death in epilepsy in the late 1980s before SUDEP was defined or accepted. I worked with the charity as a scientific advisor from the early 1990s and was honoured to be asked to chair the organisation in 2010. I’m a former consultant neuropsychiatrist at Cornwall NHS Trust; Convenor of the first international research workshop into SUDEP and Co-Chair and editor of Epilepsia: Sudden Unexpected Death in Epilepsy (1995); Co-author of the National Sentinel Clinical Audit of Epilepsy-Related Death (2002); former Chair Epilepsy Task Force; Co-Founder of Epilepsy Research Foundation (now Epilepsy Research UK); former Chair of the British Epilepsy Association (now Epilepsy Action).
A qualified social worker by profession with 40 years’ experience in the charitable, private and local government sectors, spending the last 30 of those in senior positions. I was Chief Executive of Epilepsy Society for 13 years retiring in September 2013. I became a trustee of SUDEP Action in October that year after being involved with them professionally for many years.
Our son James died after an epilepsy seizure when he was 21. He had just graduated and was about to set off on the big adventure we call life. Until that morning I had accepted that his epilepsy was inconvenient but never thought it was seriously life threatening. Mixed with the wave of sadness I was massively angry that we didn't know, and frustrated that I could perhaps have done something about it. I searched to understand, ran marathons to raise money (and burn off some of the emotion) and worked with a number of epilepsy charities to try to help prevent such loss in the future. SUDEP Action found a special place with me because its mission matches exactly with mine. All the people associated with it are hugely committed, working hard to provide support, campaign for greater understanding and recognition and to raise funds to help research.
Professor Mike Kerr studied medicine in Bristol (UK), General Practice in York and Psychiatry in Cardiff. He came to Wales in 1990. His clinical practice is in the epilepsies associated with learning disability and in the assessment and treatment of epilepsy and psychiatric disorder. He has been closely associated with initiatives in improving the public health of people with an intellectual disability including developing the Cardiff Health Check, which is used across England and Wales. Academically he has published widely on healthcare, epilepsy and intellectual disability and held research grants from many funding bodies. He is chair of the Advisory Board for Wales of Epilepsy Action, a trustee of Epilepsy Research UK and is a medical advisor for the Rett Society, and SUDEP ACTION. He is a member of the International League Against Epilepsy (ILAE) commission on neuropsychiatric aspects of epilepsy and an editor of the Cochrane collaboration epilepsy group. He has been appointed as a clinical Champion for Wales. In 2015 he was appointed as an Ambassador for epilepsy by the international league against epilepsy.
My brother John was diagnosed with epilepsy at university and sadly died from SUDEP in 1995. He was 41. I was 26 when I was diagnosed with epilepsy. After nearly losing my life to the condition in 1999, I studied epilepsy vocationally at university, and presented to audiences while also helping the charity with its leaflets, by giving interviews on BBC Radio 4 and helping with the 2002 Sentinel Audit. As a Trustee since 2004, I’ve used my experience in Quality Assurance and knowledge of epilepsy to help SUDEP Action with education and research. I continue to present to a wide range of audiences and I’m determined to prove to professionals the advantages of educating about SUDEP in a sensitive way.
On retirement in 2000 I hoped to use my experience in the NHS, local government and the voluntary sector in a useful capacity. I responded to an advert for the post of chair of EB and was pleased to be appointed even though I had no personal experience of SUDEP. I held the position of chair for about 10 years before standing down. During that time the charity has grown, providing good support to our members and using its influence on the NHS and government by bringing SUDEP to the forefront of epilepsy concerns. I am particularly encouraged by the development of the research arm of SUDEP Action in the last couple of years. I remain as a Trustee and serve on the Joint Research Initiative with Kings.
Any treasurer, or money man, in the current climate, must now have a very low profile. Happily, SUDEP Action looks on money as a Servant, not as a Master. But it is an important Servant and I hope I do my bit, constantly reminding everyone of the need to keep the income flowing in these testing times.
After the shock and grief of our daughter Lucy's sudden death at the age of 15, my wife and I found the support provided by SUDEP Action to be invaluable. Two years later I was asked to consider becoming a Trustee for the charity. I have now fulfilled that role for almost 10 years and have found it to be an ongoing source of therapeutic help in my bereavement. To be able to provide some input to such an excellent organisation is something relevant and worthwhile that I can do in Lucy’s memory. My particular motivation is the continuing hope that by raising awareness of the risk of death from epilepsy we will eventually see a significant number of the avoidable deaths actually being prevented.
Malisa Pierri is a clinical nurse specialist in epilepsy for Cardiff and Vale University Health Board. After qualifying as a registered nurse in 1998 she started work in Neurosurgery at the University Hospital of Wales and following a period of working in Sydney, Australia, returned and took up the post of Neurology Nurse Practitioner. In 2004 she commenced her current post within the epilepsy team with special interests in epilepsy surgery, epilepsy and women and management of suspected first seizures. In 2011 she was awarded a Florence Nightingale travel scholarship to look at experiences following first seizures in America and Australia and in 2012 she was awarded the inaugural Betsi Cadwaladar scholarship by the Chief Nursing Officer for Wales.
Our son, William, died as a result of an epilepsy seizure in 1988. He was 22-years-old and had just come down from Oxford. In 1994, The Guardian published an article about a boy called Matthew who had died in a similar way. It was the first time I realised there were other deaths like William’s. As a result of this article, I met Matthew’s mother, Catherine, and Jane Hanna, whose partner, Alan had died. Together with Alan’s parents, and Sue Kelk, whose daughter, Natalie, had also died, we formed the charity Epilepsy Bereaved in 1995.
My wife, Sandie, and I lost our youngest daughter, Becky, to Sudden Unexpected Death in Epilepsy in 2004, when she was 11 years old. In common with so many others, we knew nothing of SUDEP at the time. The charity provided insight, help, guidance and comfort during our darkest hours. I was invited to join the Board of Trustees in 2009 and like to feel that I bring my considerable small business experience to the charity, particularly in the areas of corporate governance, marketing, fundraising and media relationships.
“My youngest daughter, Emily, who only had four seizures, died aged 19 at Leeds University in 2012. My husband and I had no idea that Emily could die and had never heard of SUDEP. The shock and grief were overwhelming but we have found that supporting SUDEP Action has given us a positive focus for our grief. Our eldest daughter also benefitted hugely from the counselling she received from the charity. I firmly believe that had we been educated about SUDEP then Emily might be alive today. My background as a Chartered Accountant and my various volunteering roles as secretary and treasurer for small societies will stand me in good stead for my trusteeship of SUDEP Action. These are exciting times for the charity as the medical profession and the wider world begin to listen and engage with both the charity’s message and it’s work and I am excited to be part of the team.”
My elder sister, Catherine, died from SUDEP at age 29, in 1989. This was before SUDEP Action or Epilepsy Bereaved had been established and when information was almost impossible to find. I know now how much it would have helped us to have the support and access to information which SUDEP Action provides. We read an article in the national press shortly after Epilepsy Bereaved was formed, and we went to an early meeting. My mother became involved in the family support side as a volunteer, but it took a lot longer for me to feel I could actively participate. I became involved with a very active group of volunteers in the North West who were raising funds and awareness, and I then became a Trustee in 2010. My background is as a speech therapist working for the NHS and now for a charity so I have some relevant professional as well as personal experience. My main role as a Trustee is to maintain close links with Karen and Tracy in their bereavement support and counselling roles. I wanted to be involved because I have seen the huge positive difference the charity has made, not only in terms of the support it provides bereaved families, but in the health promotion, awareness raising and research elements to its work, which means that SUDEP is now recognised internationally, and people living with epilepsy and families are beginning to get access to the information they deserve.