Focus Newsletter - Autumn 2022

Focus

REACHING TIPPING POINT

The World Health Organization (WHO) Intersectoral Global Action Plan (IGAP) on Epilepsy has the potential to bring about real change in policy and practice around the world. The International League Against Epilepsy (ILAE) played an important role in the development of the plan. Here, ILAE and Epilepsy Research UK President, Professor Helen Cross, explains what the IGAP, alongside other important policy developments, will mean for the epilepsy community.

For people living with epilepsy, the condition has a lifelong impact - not just on them, but on their families and friends too. For epilepsy clinicians, diagnosing, treating and managing a person’s epilepsy and associated conditions is not always straightforward. This is not just the case for my colleagues and I in the UK, but for epilepsy healthcare professionals and people affected by the condition around the world, and particularly so in less developed countries.

Epilepsy has been critically and chronically neglected, and there is an urgent need for global action. This is why I’m so pleased the WHO IGAP has been approved, to not only address challenges in providing epilepsy care around the world, but most importantly to challenge governments to prioritise the care of people living with this condition.

The IGAP details a number of

recommendations for research initiatives to foster research innovation and strengthen information systems. An important aspect of these recommendations is that they focus on significant systematic changes –increased research investment, national and international collaborations, and strengthened research infrastructure. Imperative to this, the WHO has recognised the involvement of people living with and affected by the condition.

Epilepsy Research UK is already pioneering this through the Shape Network, UK Epilepsy Priority Setting Partnership (PSP) and, now, through our national epilepsy research collaborative and community led campaign. This programme of work will call on the government to commit to a research investment of £100 for everyone living with epilepsy in the UK – that’s £100 for every 1 in 100 and £60 million in total. The programme

#Every1EndingEpilepsy – will raise awareness of the impact of epilepsy and demonstrate how by working collaboratively we will bring about a radical change within a generation.

In this issue of Focus, we will be sharing the Top Ten research priorities gathered in the UK Epilepsy PSP. These results, together with the publication of the updated NICE Guidelines for Epilepsy and the WHO IGAP, means we are finally reaching a tipping point.

The evidence is mounting – there has never been a more compelling argument for much-needed investment in research into epilepsy. The time is now for everyone to come together to end epilepsy.

Professor J Helen Cross OBE

President, Epilepsy Research UK & ILAE

The Prince of Wales’s Chair of Childhood

Epilepsy, UCL Great Ormond Street

Institute of Child Health

#Every1EndingEpilepsy

The

and

Epilepsy Priority Setting Partnership (PSP) all present a significant opportunity to radically scale up epilepsy research. To ensure we leverage this momentum, we have developed a national epilepsy research collaborative, led by three of the UK’s pre-eminent clinicians and researchers – Professor Helen Cross (UCL Great Ormond Street Institute of Child Health), Professor Mark Richardson (King’s College London) and Professor Tony Marson (The Walton Centre, University of Liverpool). This research collaborative will identify and prioritise a programme to drive research

in diagnostics, treatments and the prevention of epilepsy as programme director, Professor Tony Marson, explains.

As a Consultant Neurologist and Epileptologist at The Walton Centre and Professor of Neurology at The University of Liverpool, I have the pleasure of working with a highly talented multidisciplinary team and seeing the difference good quality care makes to patients. At the same time, as a researcher, I see the barriers that are slowing down the development of better epilepsy treatment and care services.

Of course, the greatest barrier to better treatments and care is the massive underinvestment in epilepsy research, despite the significant individual, social and economic burden it causes. It’s staggering that as one of the most prevalent serious neurological diseases, epilepsy research receives far less funding than other less prevalent neurological conditions. This historic underfunding has hampered research and slowed progress. But, things are changing. I’m pleased to see that the scales are finally starting to tip in our favour, and now, thanks to a number of recent developments, epilepsy is emerging out of the shadows.

The updated NICE Guidelines on Epilepsy will help professionals improve the quality of care and services delivered to people with epilepsy. The James Lind Alliance Priority Setting Partnership (PSP) will help researchers focus on the research priorities of the epilepsy community. The IGAP will foster greater political will to bring about changes in both policy and practice for epilepsy across the globe. And now we, the epilepsy community, must come together to make the most of this momentum across policy, research and patient care.

Through the #Every1EndingEpilepsy programme, we will bring together our collective UK expertise, build capacity and address, through research, the massive challenges faced by people with epilepsy. We will provide the UK government will a fully costed road map, to assist and enable them to implement the recommendations from the IGAP, NICE Guidelines and the UK Epilepsy PSP.

Dementia

Patient

EMERGING THEMES

The research collaborative is seeking to identify key themes to explore with the epilepsy community that will help scale up epilepsy research. Examples of these include:

DATA ENABLERS

Digitally capturing all patients diagnosed with epilepsy, offering opportunities to be entered into trials and research studies aiming to predict and prevent epilepsy, as well as inform the development of novel therapies and technologies. Other disease areas, such as cancer, have made advances in this area, benefitting both patients and research.

“To progress improvements in care and research, we need to move on from the stand-alone platform or database. We need seamless data collection, where clinicians do not feel they are inputting data into separate audit or research platforms.” from stakeholder research.

TRANSLATION ACCELERATORS

Identifying and evaluating a translational pipeline of therapies that have fallen into the ‘valley of death’ funding gap.

“We need a network of scientists collecting data and samples, sequencing DNA, RNA, proteins, analysis for common mutations: computational chemistry, cell testing, organoid ormini-brain testing.” from stakeholder research.

RESEARCH

Making the UK the best place to conduct research into epilepsy through capacity building activities.

“With very limited funding in epilepsy, many applications are unsuccessful, and researchers apply elsewhere.” from stakeholder research.

We will demonstrate how through, through greater investment, we have the potential to reduce the £2 billion annual cost of epilepsy to the NHS.

I’m proud to be part of this research collaborative, made up of many of the best and brightest epilepsy researchers and clinicians from 12 academic institutions and universities. From genetics to diagnostics, this collaboration covers every corner of epilepsy research.

The work has already begun. Through a series of workshops and consultations we are beginning to identify a number of emerging themes. These themes are building research capacity, driving innovations in digital enablers, and ensuring we have a solid pipeline of therapies and promising treatments identified through research that can progress to clinical trials and be implemented rapidly, if successful.

With the right investment, these themes will radically accelerate progress in the field as they have done for other conditions. Our next step is to build a research network across the epilepsy community, to enable us to design a fully costed research programme that will mark a step change in our approach to targeting epilepsy.

While we, as researchers, can (and will) develop a robust, evidence-based roadmap, it is those personally affected who are best placed to convey the urgency that more must

be done. To make the human case for greater research investment, Epilepsy Research UK will bring together the programmatic themes with the costed roadmap and launch an awareness and influencing campaign led by those affected. The campaign will call on the government to commit to a research investment of £100 for each of the estimated 600,000 people living with epilepsy in the UK. That’s £100 for every 1 in 100 – a £60 million accelerator fund. A notable improvement on the £21 invested for every person living with epilepsy in the UK, as reported by the UK Health Research Analysis in 2018.

Through #Every1EndingEpilepsy we will increase public awareness of the impact of epilepsy and demonstrate how, by working collaboratively, we can bring about a radical change within a generation. I’ve been working in the field for many years, but never before have I felt so encouraged that we will be able to finally see epilepsy research given the investment it needs to stop the devastation this condition causes to so many lives.

Professor Tony Marson

#Every1EndingEpilepsy Programme Leader

ANNOUNCING THE TOP TEN PRIORITIES FOR EPILEPSY RESEARCH

Over the past year, in collaboration with the James Lind Alliance and the National Institute for Health Research (NIHR), we asked the epilepsy community – those affected, healthcare professionals and charities – what questions they would like to see addressed by research. The UK Epilepsy

Priority Setting Partnership (PSP) is now pleased to announce the Top Ten priorities for research into epilepsy.

We are delighted to share with you the results of this once in a generation, national survey. The publication of the Top Ten unanswered research questions for epilepsy is a significant step forward in ensuring research addresses what matters most to those affected. Not only will it enable research to be focused on evidenced priorities, but it will act as a catalyst for collaborations within epilepsy and associated conditions charities. Thank you to everyone who contributed to the survey and the subsequent workshop, enabling us to compile this Top Ten list.

THANK YOU

Over 100 epilepsy and associated conditions charities and organisations supported the UK Epilepsy PSP.

Over 5,000 individual responses from people living with epilepsy, their family and friends and healthcare professionals.

OUR PROMISE

The publication of the Top Ten is only the beginning. Our task now is to share these priorities with everyone connected with epilepsy - the research community and all those affected by and working in epilepsy. These Top Ten priorities will provide the evidence needed to influence government and institutional funders to invest more in epilepsy research.

Next steps for the UK Epilepsy PSP

PUBLISH TOP

2022

INTO

Scan the QR code below to find out more about the UK Epilepsy PSP

YOUR TOP TEN PRIORITIES

1 2 3 4 5

What are the causes and contributing factors of epilepsy-related deaths, including Sudden Unexpected Death in Epilepsy (SUDEP), and how can these deaths be prevented?

What underlying mechanisms cause epilepsy in children and in adults?

7 8

What impact do epilepsy, seizures and anti-seizure medication (ASMs) have on brain health - including cognition, memory, learning, behaviour and mental health?

How does epilepsy and epilepsy treatment impact neurodevelopment, and can this be managed or prevented?

How can targeted, personalised medicine, such as gene therapy, be used to treat and/or prevent epilepsy?

How can tools, devices and biological markers be used to accurately predict and prevent seizures and the onset of epilepsy?

How do hormonal changes in women throughout the lifespan (puberty, pregnancy, menopause) impact epilepsy, and how can this impact be addressed?

How can quality of life be improved for people with epilepsy, their families and carers, including those bereaved by epilepsy?

What causes drug-resistant (refractory) epilepsy, and how can it be best treated?

How can big data analysis, through artificial intelligence (AI) and machine learning, aid the diagnosis and management of epilepsy?

MEET OUR 2022 FELLOWS

Our annual Fellowship Awards allow us to attract the best clinicians and scientists to develop their expertise and place them at the heart of epilepsy research. By supporting the careers of researchers and enabling them to develop into future leaders, we are building the capacity of the epilepsy

research environment.

In 2022, we awarded over £1.5 million – our largest single investment to date. This funding was invested in four Emerging Leader Fellowships and five Endeavour Projects. To help you get acquainted with our new Fellows, we asked each of them four questions.

2022 Grant Awards

Orange: Emerging Leader Fellowships

White: Endeavour Projects

Why did you decide to become a researcher?

Dr Kathryn Bush Newcastle University

Working as a doctor with people with epilepsy has given me some insight into just how challenging living with the condition can be, but also how these challenges disproportionately affect our most deprived populations. I became a researcher because I want more people to understand that this is preventable, but that we need to make changes to our health system to allow this to happen.

UNDERSTANDING EPILEPSY INEQUALITIES IN THE UK

What does this Epilepsy Research UK funding mean to you?

The funding is absolutely essential to my project, and I am so excited about getting started with the work in the new year. I passionately believe in the importance of first recognising, and then working to reduce inequalities (preventable differences), around who gets epilepsy and the effects that it has on people’s lives. This research funding will allow me to focus on this important area and enable me to bring about much needed change.

What do you enjoy most about your work?

Big data research is a challenging and exciting field to work within – and I love to challenge myself! I enjoy working in the university with amazing people and the culture of learning that exists there. It is a privilege to work in research, both with and for people with epilepsy.

What are your hopes for future research into epilepsy?

I hope that there will be an increased focus on inequalities in epilepsy and how epilepsy could be prevented at a population level. Whilst exploring treatments into epilepsy remains vitally important, it would be wonderful if we could stop some groups of people from developing epilepsy in the first place.

Dr Faye McLeod

University

EXPLORING THE MECHANISMS BEHIND EARLY-ONSET GENETIC EPILEPSIES USING HUMAN BRAIN TISSUE

What does this Epilepsy Research UK funding mean to you?

This fellowship provides a crucial stepping stone for me to become an independent scientist. The techniques I’m developing offer so much potential for translation, from understanding how some genes may cause epilepsy, to testing novel therapies on human brain cells. Epilepsy Research UK and its supporters will enable me to continue developing myself, my team, and my ideas as an aspiring academic specialising in epilepsy.

Why did you decide to become a researcher?

I’m absolutely fascinated by how the brain works. I am also a naturally curious person who enjoys researching new things, so I pursued a career as a neuroscientist to combine both passions. There is still so much to discover.

What do you enjoy most about your work?

I feel privileged to work with the human samples in my studies. I love experiencing a new breakthrough as it really makes me feel like I’m making a difference, which is incredibly rewarding.

What are your hopes for future research into epilepsy?

I hope that future research will focus on identifying better, more personalised treatment options for children and adults with epilepsy. We can achieve this with the integration of basic science, neurology, and commercial collaborations. For example, I’m a basic scientist with strong links with clinical epilepsy experts – together we have been actively working on the translational capabilities of my work.

FIND OUT MORE

Dr Amol Bhandare

of Warwick

INVESTIGATING THE ROLE OF MICROGLIA IN SEIZURES, SUDDEN DEATH AND MEMORY FUNCTION IN EPILEPSY

What does this Epilepsy Research UK funding mean to you?

This funding will help me to build my career as an independent epilepsy researcher. It has offered me freedom to conduct my research on a global scale through international collaborations and to find ways to improve quality of life for people with epilepsy.

Why did you decide to become a researcher?

During my undergraduate and masters study, I realised how rewarding the research is. It offers freedom to work on scientific topics that make a real difference in our life and in my case in people with epilepsy.

What do you enjoy most about your work?

My daily research findings in the lab always intrigue me and that is what I enjoy the most. Knowing that, in the long-term, these findings will make a real difference always brings me joy.

What are your hopes for future research into epilepsy?

In the last couple of decades, we’ve made enormous technical advancement in research. This has provided in-depth knowledge and novel mechanisms of the conditions that are currently untreatable in people with epilepsy. I’m very optimistic that in the future all these advances will help to find new treatment options to improve the quality of life in people with epilepsy.

To read more about the fellowship projects and other research we funded in 2022, please scan the QR code or visit https://epilepsyresearch.org.uk/our-research/research-awards-2022/

OUR UNITED COMMUNITY

Research that has led to improvements in treatment and care would not have happened without our amazing supporters. Some choose to do something active, while others get together with family and friends to create special moments. Regardless of how you support us, we’re one community united behind the same goal.

We love sharing your unique, creative and inspiring efforts. Thank you for being part of #TeamERUK, a powerful community working together with researchers to achieve a life free from epilepsy.

This is what makes us strong. Thank you.

Iain’s trio of cycling challenges

Iain took on three huge cycling events this summer, covering an incredible 630km. The warm-up event was Ride London-Essex 100 in May (yes, warm up!) before taking on the 300km Dragon Ride in June. The grand finale was the world famous L’Etape du Tour de France in July. The route covers the same course as stage 12 of the Tour de France and involves a total altitude gain of 4,700 metres – over half the height of Mount Everest.

Iain shared with us his motivation to ride: “I took on these three cycling challenges for my amazing daughter, Isabelle, who has been diagnosed with an extremely rare mutation of her DNM1 gene, which is the cause of her drug resistant epilepsy. I understand how difficult epilepsy is to live with and how scary it can be due to its unpredictable nature. I also wanted to raise awareness of epilepsy and the fantastic work Epilepsy Research UK do in enabling lifechanging research.”

Wedding bells for Joanne and Craig

After personally seeing the impact of research on their daughter Grace, Joanne and Craig decided to use their wedding day to raise funds, by asking their guests to donate instead of buying a gift. The couple raised £2,200 for Epilepsy Research UK and Great Ormond Street Children’s Hospital (GOSH).

Joanne said: “Our daughter, Grace, was diagnosed with complex epilepsy at six. Since then, she has experienced many challenges which she has tackled very bravely. In March, she underwent life-changing brain surgery at Great Ormond Street Children’s Hospital in London. She has since shown a marked improvement and so to show our appreciation for the care she has received over the years, and help fund research into epilepsy, we are raising money for GOSH and Epilepsy Research UK.”

Graham family and friends 10k & Tri Challenge for Andrew

The Graham family and friends recently staged their regular 10K & Tri challenge in memory of Kevin and Jill’s son, Andrew, and Jill’s sister, Lynne. Most took on the 10K walk, with Kevin doing a full triathlon. Andrew’s sister Nicola took on the swim and uncle Stephen completed the cycling leg of the event. The day included raffle and auction prizes and raised a fantastic £4,300 for vital research. Kevin then went onto complete the London Triathlon a few weeks later. Our sincere thanks to the Graham family for their ongoing and hugely generous support of Epilepsy Research UK through the Andrew Graham Memorial Fund.

Jill, Andrew’s mother, said: “It would be great to think that Andrew had helped other children and families avoid the pain and loss that we feel each day – this is why we keep going.”

Butterfly Ball in memory of Ellen raises record amount for research into epilepsy

John and Lynne Mezzetti have been long-term supporters since tragically losing their daughter, Ellen, to epilepsy in 2006, aged just 16. The family have organised The Butterfly Ball event biennially since 2012: however, Covid restrictions meant recent events had to be postponed.

The 2022 event took place in July at Norfolk’s Sprowston Manor and featured a huge array of auction and raffle prizes generously donated by the local community. Due to incredible ongoing support of family and friends, a phenomenal £13,482 was raised for vital research into epilepsy – the most they’ve ever raised at a single event. We would like to give our sincere thanks to each and every person who has supported The Butterfly Ball and made the events such a fantastic success.

John said: “Both Lynne and myself are once again totally overwhelmed by the support we continue to receive, from the businesses and friends who donated the amazing prizes and to all who attended the event.

After four years out and still recovering from the pandemic, we were very unsure how well The Butterfly Ball would be attended, but as soon as we started advertising, the response was amazing. The amount raised was phenomenal and our best to date and hopefully will help with the continued research which remains extremely important to us.”

We are truly humbled and enormously grateful to John and Lynne for their unwavering support. Over £150,000 has now been raised through the Ellen Mezzetti Memorial Fund – an incredible contribution to advancing research. This remarkable sum reflects the exceptional commitment that the family, friends and local community have shown in supporting our research.

WAYS YOU CAN MAKE A DIFFERENCE

You don’t need to pull on a #TeamERUK running vest to make a difference. There are so many ways to support Epilepsy Research UK. From buying Christmas cards to send to family and friends, to leaving a gift in your Will, or signing up to a regular gift. Any and every action contributes towards our ability to fund the most promising research carried out by the most talented researchers.

GIFTS IN WILLS

Gifts in Wills currently make up roughly half of our annual income and play a vital role in securing the future of research into epilepsy. By choosing to leave us a gift, you will ensure that this research continues and that together, we can STOP epilepsy interrupting lives.

Of course, we understand that your loved ones come first. Once you’ve remembered them, would you consider leaving a gift in your Will to Epilepsy Research UK? No matter how large or small, your gift will be a lasting legacy and provide help for today and hope for tomorrow.

I believe the gift in my Will to Epilepsy Research UK will benefit future generations living with epilepsy and help prevent other families going through the terrible pain of losing a loved one to this devastating condition. Dawn, Epilepsy Research UK supporter

We’ve produced a guide to help you through the process that you can access on our website or by using the QR code. We’ve also teamed up with The Goodwill Partnership which offer a Will writing service. For more information or to download our Gifts in Wills guide see: epilepsyresearch.org.uk/gifts-in-wills or contact Jo Finnerty on 020 3096 7887 or email jo.finnerty@eruk.org.uk.

CHRISTMAS CARDS ON SALE

Why not spread a little Christmas cheer this year by sending a beautiful card? There’s a card to suit everyone’s taste in our 2022 range. Last year we sold out in record time, so get those orders in early to avoid disappointment. Order in whatever way is easiest for you – via our website epilepsyresearch.org. uk/support-us/shop/, scan the QR code, use the form enclosed or call 020 3096 7887.

SUPPORTING RESEARCH WITH A REGULAR GIFT

Regular gifts are hugely important to us as a charity, enabling us to plan ahead and make long term commitments to research. This support helps fund life changing, life saving research that helps STOP epilepsy interrupting lives. Your donations really do make a difference. Thank you.

Set up a regular donation via direct debit: epilepsyresearch.org.uk/donate. Don’t want to go online? Set up a standing order on the enclosed donation form instead.

GIVE AS YOU EARN FOR A TAX EFFICIENT DONATION

Payroll Giving is a simple way to donate. You choose how much you’d like to donate every month. The donations are taken direct from your salary, before tax is deducted, meaning your gift will be increased by tax relief. For example, if you decide to give £10 a month, it will only cost you £8 if you pay tax at the basic rate.

To donate through Payroll Giving, ask your employer if they have a Payroll Giving scheme. If they haven’t already got one, find out how they can register here: www.gov.uk/payroll-giving

PAYROLL GIVING

make a difference every pay day.

GIVE TO WHO YOU WANT, WHEN YOU WANT WITH THE TOUCAN MOBILE APP!

Looking for an easy, flexible way to give to the causes you care about? Want to donate but don’t necessarily want to share your details? The new #ToucanGiving mobile app is a regular giving platform designed to streamline all the good you do.

You may have seen the episode of Dragon’s Den featuring Toucan – and the dragons loved it. Stephen Bartlett, the famous entrepreneur who founded Social Chain, was ‘in’ and invested immediately!

Toucan takes care of all your giving but doesn’t pass on any of your details, so the charities you donate to won’t be in touch (we’ll try not to take it personally!). You can be flexible about how much you commit, take a payment break and you can split your donations between all the causes that matter to you.

Scan the QR code to download the app

Setting up is easy!

1. Download the app.

2. Pick your charities - you can add Epilepsy Research UK with this link: join. thetoucan.app/ EpilepsyResearchUK

3. Set up your giving portfolio of up to three charities.

4. Choose your monthly donation amount... and you’re done!

They said someone with epilepsy could never be a firefighter. Thanks to research, they were wrong. Mark, Epilepsy Research UK supporter

#TEAMERUK OPPORTUNITIES YOU DON’T WANT TO MISS!

SEPT

GREAT NORTH RUN 2023

Missed out on this year’s Great North Run? You could be there with us next year – join #TeamERUK for the biggest and best half marathon in the world.

MAY

APRIL

-28 MAY

RIDE LONDON 2023

Enjoy going for a weekend bike ride? Why not challenge yourself in 2023 and take on this prestigious event which attracts cyclists from across the country.

MARCH - 2 APRIL

LONDON LANDMARKS

HALF 2023

With incredible views of London’s most iconic landmarks including Big Ben, St Paul’s Cathedral, the Tower of London and the London Eye – this half marathon is like no other.

EDINBURGH MARATHON FESTIVAL 2023

Fast and flat, this course is ideal if it’s your first marathon or you are looking for a personal best. Not quite at marathon level yet? We have places in the 5k, 10k and half marathon events too.

AFTER SOMETHING A BIT DIFFERENT?

BRIGHTON MARATHON

FESTIVAL 2023

The Brighton Marathon is a beautiful coastal route, finishing at the beach in front of hundreds of spectators. Places also available in the Brighton Half Marathon and the 10k too.

Don’t worry if running isn’t for you, you can still support vital research into epilepsy with our other weird and wonderful events:

IT’S BEGINNING TO LOOK A LOT LIKE CHRISTMAS (WELL... ALMOST!)

Get in the festive spirit with friends and family with the iconic Santa in the City run. Starting and finishing outside Tate Modern, London, the 5k run returns this year on 7th & 8th December. Register today to receive your own Santa Suit (includes a Santa hat & beard) and get fundraising for Epilepsy Research UK.

TAKE ON AN EVENT FOR EPILEPSY RESEARCH UK WITH YOUR COLLEAGUES

The customer service team at Yoozoom decided to take on a challenge as a team, opting for the Leeds 10K. Al explains: “The team signed up with enthusiasm over a year ago. As the time grew nearer, the challenge of doing their first ever run dawned on them. I have to admit, I thought they were going to drop out at one point, but they all went through with it on the day. The team loved the day and felt a real sense of accomplishment for raising money for a great cause!”

Taking on an event with colleagues is a great way to bring the team together, build relationships and boost morale. Not only does fundraising in the workplace bring benefits to both employers and employees, but you’ll also be helping to drive research to enable a better future for people living with epilepsy.

WHY SHOULD I TAKE ON AN EVENT FOR EPILEPSY RESEARCH UK?

• We are solely funded through the generosity of our supporters and we need YOUR help to continue driving life changing, life saving research.

• Whatever the event, you’ll receive support from our Marketing & Events Manager, Becca, who’ll be with you every step of the way!

• You’ll be the proud owner of our stylish charity running/cycling top.

• Most importantly, you’ll be joining a powerful community working together to stop epilepsy interrupting lives.

But don’t just take our word for it...

“A few years ago I lost a very dear friend of mine to epilepsy. Since then I’ve been wanting to raise money in his honour and what better way than to run the Brighton Marathon for Epilepsy Research UK. The training wasn’t easy but running the marathon was one of the best days of my life and I couldn’t recommend it more. Thanks to all my amazing family and friends for their generous donations.”

Frankie

If you’re interested in taking on any event for Epilepsy Research UK, please do get in touch with our Marketing & Events Manager, Becca (rebecca.mee@eruk.org.uk), or visit epilepsyresearch.org.uk/ support-us/events/ for more information.

GOODBYE TO OUR DEAR FRIEND JOHN

Dr John Percival Mumford 30th December 1933 – 3rd July 2022

We recently said goodbye to former Epilepsy Research UK Trustee Dr John Mumford at a service attended by his family, friends and colleagues, to whom he meant and gave so much. John died on 3rd July, aged 88, following a short illness. He was much loved by Julia, Nicola, Jo, Simon and Tim and will be greatly missed by all who knew him.

John began his career in Manchester, qualifying in medicine in 1957. After 13 years in Hospital and General Practice in the North of England, he joined the Pharmaceutical Industry in the Netherlands, becoming Head of International Medical Services in Organon International. John then moved to Denmark in 1977 to become the Vice President of Medical Affairs in Novo Pharmaceuticals. In 1981 he joined Merrell Dow, holding various posts including in the UK and France, where he directed the Global Clinical Research Program for vigabatrin in epilepsy. He retired as Global Therapeutic Area Director (CNS) in January 1996 to become an independent Consultant in Pharmaceutical Medicine.

John was elected a Fellow of the Faculty of Pharmaceutical Medicine of the Royal College of Physicians in 1989, and an ‘Ambassador for Epilepsy’ by the IBE and the ILAE in 1995. In 1998, he became a trustee of the Epilepsy Research Foundation (now Epilepsy Research UK) and in 1999 a member of the Scientific Advisory Board, becoming Chairman in 2000. He went on to become Chairman of the Trustees between 2002-2005.

At John’s funeral, there was a vibrant exchange of stories about John’s wit, intelligence and personal and professional impact. Up until the very last few days of his life, John was still providing guidance and sharing his wisdom with those close to him. And that was the recurring theme of all the stories about John; his unwavering support and encouragement for everyone around him.

John remained in regular contact with fellow Trustees Helen Cross and Barrie Akin, with whom he had served on the board at Epilepsy Research UK, checking in on progress and providing insights into strategy development. I too had regular calls and emails, the last one ended “I’ve got to get out of this hospital Maxine, it’s full of old codgers…”

Rest in peace John and thank you.

Maxine Smeaton

Chief Executive, Epilepsy Research UK

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