Page 1

Driving research inspiring collaboration transforming lives Annual Review 2018


Contents

Foreword

Foreword

Professor Matthew Walker Chair of Trustees

Epilepsy remains one of the commonest serious neurological conditions with about one in twenty people developing epilepsy in their lives. Although many have their epilepsy controlled with medication, about one third of people with epilepsy continue to have seizures despite optimum treatment, and unfortunately that has not changed significantly over the last few decades, despite the availability of many new antiepileptic drugs. People with drug-resistant epilepsy live with not only unpredictable seizures but also increased rates of depression, social isolation, and unemployment. There is also an increased mortality rate and a risk of sudden unexpected death. Despite the high prevalence of this potentially devastating disorder, research into the causes, diagnosis and treatment of epilepsy remains chronically underfunded. This may partly stem from the stigma that epilepsy engenders, but also, in-between the seizures, people with epilepsy often appear well – epilepsy thus often remains a “hidden condition”. Epilepsy Research UK is a charity that is dedicated to funding research into epilepsy with the mission of improving the lives of all people with epilepsy.

Contents Foreword

3

About epilepsy

4

About Epilepsy Research UK

5

Driving research

6

Inspiring collaboration

16

Transforming lives

20

A good investment?

26

Finance

28

Governance

30

Epilepsy Research UK, however, aims to achieve more than just funding, it aims to attract the best young scientists and clinicians and to encourage them to pursue a career in epilepsy research. We also aim to create a community of and dialogue between scientists, clinicians and people whose lives have been touched by epilepsy in order that we support the best and most impactful epilepsy research. On behalf of the trustees, I would like to thank our dedicated team in the ERUK office, the scientific advisory board and, most of all, our numerous supporters without whom none of this research would be possible. Professor Matthew Walker Chair of Trustees

2

3


Contents

Foreword

Foreword

Professor Matthew Walker Chair of Trustees

Epilepsy remains one of the commonest serious neurological conditions with about one in twenty people developing epilepsy in their lives. Although many have their epilepsy controlled with medication, about one third of people with epilepsy continue to have seizures despite optimum treatment, and unfortunately that has not changed significantly over the last few decades, despite the availability of many new antiepileptic drugs. People with drug-resistant epilepsy live with not only unpredictable seizures but also increased rates of depression, social isolation, and unemployment. There is also an increased mortality rate and a risk of sudden unexpected death. Despite the high prevalence of this potentially devastating disorder, research into the causes, diagnosis and treatment of epilepsy remains chronically underfunded. This may partly stem from the stigma that epilepsy engenders, but also, in-between the seizures, people with epilepsy often appear well – epilepsy thus often remains a “hidden condition”. Epilepsy Research UK is a charity that is dedicated to funding research into epilepsy with the mission of improving the lives of all people with epilepsy.

Contents Foreword

3

About epilepsy

4

About Epilepsy Research UK

5

Driving research

6

Inspiring collaboration

16

Transforming lives

20

A good investment?

26

Finance

28

Governance

30

Epilepsy Research UK, however, aims to achieve more than just funding, it aims to attract the best young scientists and clinicians and to encourage them to pursue a career in epilepsy research. We also aim to create a community of and dialogue between scientists, clinicians and people whose lives have been touched by epilepsy in order that we support the best and most impactful epilepsy research. On behalf of the trustees, I would like to thank our dedicated team in the ERUK office, the scientific advisory board and, most of all, our numerous supporters without whom none of this research would be possible. Professor Matthew Walker Chair of Trustees

2

3


About Epilepsy

About Epilepsy Research UK

About epilepsy Epilepsy is one of the most common neurological conditions in the world. There are approximately 600,000 people in the UK with a known diagnosis. This means around 1 in every 100 people are living with epilepsy. The main symptom of epilepsy is repeated seizures that start in the brain, the effects and impact of which vary depending on which part of the brain is affected. Over 65% of people do not know the cause of their epilepsy. The onset may be at any age or stage of life. For some, it may be as a result of head injury, stroke or brain tumour. Whilst there are many drugs and therapies available, 30% of people live with uncontrolled seizures that do not respond to medication. The impact on families and carers can be significant if they face the challenge of managing round-the-clock care. Shockingly, there are 21 epilepsy-related deaths in the UK every week.

Epilepsy Research UK Epilepsy is one of the most common neurological conditions.

1 in 103

people in the UK have epilepsy.

In

65 %

of cases there is no known cause.

30 %

Epilepsy Research UK (ERUK) is the only UK-based charity exclusively dedicated to funding independent research into epilepsy. Our mission is to drive investment into research, inspire collaboration across clinical, scientific and academic disciplines, and transform the lives of people living with epilepsy and their families and carers. In the past year we invested over £1 million in 12 projects ranging from basic science and clinical research to patient data and resources that will enable future research.

As well as funding research, we bring clinicians and scientists together for technical workshops and scientific meetings at which we disseminate learning and develop ideas for future innovations. We regularly join forces with partners who are working with associated conditions to ensure our efforts are combined. We work in partnership with other epilepsy-related charities to share knowledge and skills and campaign for better treatments for people living with epilepsy.

Our projects and scientists are based across the UK, from Exeter to Edinburgh – and the impact of their work is global.

of people with epilepsy live with uncontrolled seizures that do not respond to medication. Every week in the UK:

Over

600

people are diagnosed with epilepsy. There are

21

epilepsy-related deaths.

4

5


About Epilepsy

About Epilepsy Research UK

About epilepsy Epilepsy is one of the most common neurological conditions in the world. There are approximately 600,000 people in the UK with a known diagnosis. This means around 1 in every 100 people are living with epilepsy. The main symptom of epilepsy is repeated seizures that start in the brain, the effects and impact of which vary depending on which part of the brain is affected. Over 65% of people do not know the cause of their epilepsy. The onset may be at any age or stage of life. For some, it may be as a result of head injury, stroke or brain tumour. Whilst there are many drugs and therapies available, 30% of people live with uncontrolled seizures that do not respond to medication. The impact on families and carers can be significant if they face the challenge of managing round-the-clock care. Shockingly, there are 21 epilepsy-related deaths in the UK every week.

Epilepsy Research UK Epilepsy is one of the most common neurological conditions.

1 in 103

people in the UK have epilepsy.

In

65 %

of cases there is no known cause.

30 %

Epilepsy Research UK (ERUK) is the only UK-based charity exclusively dedicated to funding independent research into epilepsy. Our mission is to drive investment into research, inspire collaboration across clinical, scientific and academic disciplines, and transform the lives of people living with epilepsy and their families and carers. In the past year we invested over £1 million in 12 projects ranging from basic science and clinical research to patient data and resources that will enable future research.

As well as funding research, we bring clinicians and scientists together for technical workshops and scientific meetings at which we disseminate learning and develop ideas for future innovations. We regularly join forces with partners who are working with associated conditions to ensure our efforts are combined. We work in partnership with other epilepsy-related charities to share knowledge and skills and campaign for better treatments for people living with epilepsy.

Our projects and scientists are based across the UK, from Exeter to Edinburgh – and the impact of their work is global.

of people with epilepsy live with uncontrolled seizures that do not respond to medication. Every week in the UK:

Over

600

people are diagnosed with epilepsy. There are

21

epilepsy-related deaths.

4

5


Driving research

Driving research

Driving research

Our grant funding process

ERUK supports a wide portfolio of research that can be divided into two broad streams: experimental studies of epilepsy, from laboratory research of the cellular and molecular mechanisms of epilepsy, to novel diagnostics and treatments for epilepsy in the clinic, and more patient-focussed studies, for example on the impact of co-morbidities and antiepileptic drugs on quality of life.

Epilepsy Research UK offers three types of research grant: fellowship awards (£250,000), project grants (£200,000) and pilot grants (£30,000).

This research is funded after rigorous scrutiny of grant applications in a multi-stage process that involves both experts on the Scientific Advisory Committee (SAC), external expert opinion, and, in the case of fellowships, involves a three-panel interview. Through this process we can be assured of the quality of the proposal and the likelihood of delivery of novel insights into the causes, diagnosis, treatments and impact of epilepsy. Our funded projects can be found all over the UK and are building epilepsy research capacity in many universities and hospitals. In addition to supporting the research activities of established academics and clinicians, our funding schemes, in particular our fellowships, are encouraging the next generation of epilepsy scientists who will be able to take advantage of novel genomic, physiological and imaging technology to deliver better outcomes for people with epilepsy. The research we fund is having considerable impact. This can be measured through both the many research publications that acknowledge our support, and in the additional funding that our support enables; currently for

6

Step

1

Step

2

In November, preliminary applications are shortlisted by our Scientific Advisory Committee (SAC) – a panel of the UK’s leading neurologists, neuroscientists and expert epilepsy researchers.

Step

Shortlisted applicants are then invited to submit a full application, which is sent externally for independent consideration by some of the world’s leading experts in epilepsy research. This is a process known as peer review.*

3 every £1 ERUK spends on research, our scientists and clinicians can leverage an additional £4.90 from other funding sources. This in itself is a testament to the quality of the research that we identify to fund, but that we can only do with your support, and for which the SAC and I are extremely grateful.

Every year we run a competitive grant round that is open for preliminary applications for ten weeks from mid-July until the end of September. Applications are accepted from all areas of epilepsy research, including basic science and clinical research.

Step

4

The SAC then rigorously reviews each full application, taking into consideration the peer review comments.

Step

Finally, the SAC meets in March to recommend to the Board which applications should be funded. This selection is typically made up of a variety of fellowship, project and pilot grants in epilepsy research, depending on what funding is available.

5

In 2018 we were able to fund 1 fellowship award, 7 projects grants and 4 pilot grants. This is the highest number of applications ever funded by ERUK. * The smaller pilot grants follow a simpler single stage application process. Shortlisted fellowship candidates are also interviewed.

Professor Bruno Frenguelli Chair, Scientific Advisory Committee

7


Driving research

Driving research

Driving research

Our grant funding process

ERUK supports a wide portfolio of research that can be divided into two broad streams: experimental studies of epilepsy, from laboratory research of the cellular and molecular mechanisms of epilepsy, to novel diagnostics and treatments for epilepsy in the clinic, and more patient-focussed studies, for example on the impact of co-morbidities and antiepileptic drugs on quality of life.

Epilepsy Research UK offers three types of research grant: fellowship awards (£250,000), project grants (£200,000) and pilot grants (£30,000).

This research is funded after rigorous scrutiny of grant applications in a multi-stage process that involves both experts on the Scientific Advisory Committee (SAC), external expert opinion, and, in the case of fellowships, involves a three-panel interview. Through this process we can be assured of the quality of the proposal and the likelihood of delivery of novel insights into the causes, diagnosis, treatments and impact of epilepsy. Our funded projects can be found all over the UK and are building epilepsy research capacity in many universities and hospitals. In addition to supporting the research activities of established academics and clinicians, our funding schemes, in particular our fellowships, are encouraging the next generation of epilepsy scientists who will be able to take advantage of novel genomic, physiological and imaging technology to deliver better outcomes for people with epilepsy. The research we fund is having considerable impact. This can be measured through both the many research publications that acknowledge our support, and in the additional funding that our support enables; currently for

6

Step

1

Step

2

In November, preliminary applications are shortlisted by our Scientific Advisory Committee (SAC) – a panel of the UK’s leading neurologists, neuroscientists and expert epilepsy researchers.

Step

Shortlisted applicants are then invited to submit a full application, which is sent externally for independent consideration by some of the world’s leading experts in epilepsy research. This is a process known as peer review.*

3 every £1 ERUK spends on research, our scientists and clinicians can leverage an additional £4.90 from other funding sources. This in itself is a testament to the quality of the research that we identify to fund, but that we can only do with your support, and for which the SAC and I are extremely grateful.

Every year we run a competitive grant round that is open for preliminary applications for ten weeks from mid-July until the end of September. Applications are accepted from all areas of epilepsy research, including basic science and clinical research.

Step

4

The SAC then rigorously reviews each full application, taking into consideration the peer review comments.

Step

Finally, the SAC meets in March to recommend to the Board which applications should be funded. This selection is typically made up of a variety of fellowship, project and pilot grants in epilepsy research, depending on what funding is available.

5

In 2018 we were able to fund 1 fellowship award, 7 projects grants and 4 pilot grants. This is the highest number of applications ever funded by ERUK. * The smaller pilot grants follow a simpler single stage application process. Shortlisted fellowship candidates are also interviewed.

Professor Bruno Frenguelli Chair, Scientific Advisory Committee

7


Driving research

Driving research

Current funding

Grants awarded in 2018

We are currently funding:

We received 57 applications for the 2017/18 grant round. Following a rigorous selection process, we were able to fund 1 fellowship grant, 7 project grants and 4 pilot grants.

32

3

research projects at institutes and universities throughout the UK.

Research areas funded

Edinburgh

14

Causes and diagnosis

1 Newcastle

13

5

Treatment

Life-threatening

Leeds

1 Liverpool

1

1

Manchester

1 Birmingham

3

Cardiff

2 Oxford

1

Type of award

Institution

Lead researcher

Surgical techniques to improve seizure control after a brain tumour

Fellowship grant

Newcastle University

Mr Ashan Jayasekera

Vesicle reorganisation: A new subcellular therapeutic target for seizure prevention

Project grant

University of Leicester

Predicting seizure occurrence using wearable device technology

Project grant

Management of patients with status epilepticus in intensive care

Amount

Years of funding

£173,924

2

Dr Vincenzo Marra

£56,852

3

King’s College London

Prof Mark Richardson

£149,372

2

Project grant

Royal London Hospital, Barts Health

Dr Vasiliki Tsirka

£149,290

3

Imaging networks in the brain to predict medication seizure control

Project grant

University of Liverpool

Dr Simon Keller

£73,220

1.5

Can the relationship between epilepsy and migraine help identify therapeutic targets?

Project grant

University College London

Prof Kirill Volynski

£149,931

2

Absence epilepsy: Exploring perineuronal nets as a new therapeutic target

Project grant

University of Leeds

Dr Jessica Kwok

£149,633

3

The Epilepsy Research UK Corsellis Brain Collection

Project grant

University College London

Prof Maria Thom

£47,000

2

Do more experienced hospitals have improved outcomes in status epilepticus?

Pilot grant

Birmingham (hospital)

Dr Tonny Veenith

£5,000

1

Electrical stimulation as a potential treatment for juvenile myoclonic epilepsy

Pilot grant

King’s College London

Dr David Carmichael

£29,960

1

A new role for epilepsy gene TBC1D24

Pilot grant

University of Oxford

Prof Peter Oliver

£20,000

1.5

Nicotine patch treatment for sleep-related hypermotor epilepsy

Pilot grant

King’s College London

Prof Deb Pal

£30,000

2

Leicester

2

7

Warwick

2 London

8

Study title

14

5

1

1 7 1 5 1

University College London St George’s Hospital Kings College, London Royal London St Barts Health

Exeter 9


Driving research

Driving research

Current funding

Grants awarded in 2018

We are currently funding:

We received 57 applications for the 2017/18 grant round. Following a rigorous selection process, we were able to fund 1 fellowship grant, 7 project grants and 4 pilot grants.

32

3

research projects at institutes and universities throughout the UK.

Research areas funded

Edinburgh

14

Causes and diagnosis

1 Newcastle

13

5

Treatment

Life-threatening

Leeds

1 Liverpool

1

1

Manchester

1 Birmingham

3

Cardiff

2 Oxford

1

Type of award

Institution

Lead researcher

Surgical techniques to improve seizure control after a brain tumour

Fellowship grant

Newcastle University

Mr Ashan Jayasekera

Vesicle reorganisation: A new subcellular therapeutic target for seizure prevention

Project grant

University of Leicester

Predicting seizure occurrence using wearable device technology

Project grant

Management of patients with status epilepticus in intensive care

Amount

Years of funding

£173,924

2

Dr Vincenzo Marra

£56,852

3

King’s College London

Prof Mark Richardson

£149,372

2

Project grant

Royal London Hospital, Barts Health

Dr Vasiliki Tsirka

£149,290

3

Imaging networks in the brain to predict medication seizure control

Project grant

University of Liverpool

Dr Simon Keller

£73,220

1.5

Can the relationship between epilepsy and migraine help identify therapeutic targets?

Project grant

University College London

Prof Kirill Volynski

£149,931

2

Absence epilepsy: Exploring perineuronal nets as a new therapeutic target

Project grant

University of Leeds

Dr Jessica Kwok

£149,633

3

The Epilepsy Research UK Corsellis Brain Collection

Project grant

University College London

Prof Maria Thom

£47,000

2

Do more experienced hospitals have improved outcomes in status epilepticus?

Pilot grant

Birmingham (hospital)

Dr Tonny Veenith

£5,000

1

Electrical stimulation as a potential treatment for juvenile myoclonic epilepsy

Pilot grant

King’s College London

Dr David Carmichael

£29,960

1

A new role for epilepsy gene TBC1D24

Pilot grant

University of Oxford

Prof Peter Oliver

£20,000

1.5

Nicotine patch treatment for sleep-related hypermotor epilepsy

Pilot grant

King’s College London

Prof Deb Pal

£30,000

2

Leicester

2

7

Warwick

2 London

8

Study title

14

5

1

1 7 1 5 1

University College London St George’s Hospital Kings College, London Royal London St Barts Health

Exeter 9


Driving Research

Driving Research

Focus on

Unknown cause Professor Kirill Volynski, from the Institute of Neurology at University College London, is researching whether the relationship between epilepsy and migraine can help identify new targets for antiepileptic drugs (AEDs). “Epilepsy and migraine occur together more often than would be expected from chance: a diagnosis of epilepsy doubles the risk of migraine. The ‘aura’ of migraine is, however, very different from a seizure. Funding from ERUK is enabling us to investigate the enigmatic mechanisms that predispose cortical neuronal networks either to seizures or to a slowly propagating wave of inexcitability typical for migraine aura”. Whilst some epilepsies have a clear cause, in 65% of cases there is no known reason for the development of the condition. However, epilepsy and migraine exhibit substantial similarities: both conditions are episodic, several antiepileptic drugs are effective in migraine treatment, and both seizures and ‘migraine headaches’ can be induced by brain trauma. In addition, mutations of the same genes can lead either to epilepsy or to a severe form of migraine with aura. So why is it that the excessive firing of neurons in some people leads to epilepsy, and in others to the aura associated with some forms of migraine? In this project Professor Kirill Volynski and colleagues aim to understand the

10

relationship between seizures and migraine aura mechanisms, which may lead to new therapeutic targets for both epilepsy and migraine.

James Nelson has never discovered the cause of his epilepsy. He tells us his experience of developing the condition and his hopes for advances in research. “I first developed a mild form of epilepsy aged 16 whilst at school. Like the vast majority of the population, I had no idea what the word signified and what the condition was. I ignored it for some time, thinking it might have been due to an increase in A-level studies and an active lifestyle. These strange, indescribable feelings weren’t occurring every day, so I just brushed it off. I arrived home from school one day and casually mentioned it to my mum, who immediately diagnosed the condition. She’s not in the medical

James Nelson has never discovered the cause of his epilepsy

profession but has an astute knowledge of all things medical! An appointment with my GP was made and I further embarked on a lifetime of scans, tests and consultant meetings. All of my investigations, scans and tests have shown my brain to be normal and herein lies the problem. In my case, like 65% of people diagnosed with epilepsy, there is no known cause. I was offered surgery in more recent years but the chances of success were relatively low and the danger of infection relatively high. I decided against it.

I may well be on medication for the rest of my life and the deterioration of my memory is worrying but as my wonderful neurologist has mentioned to me, the advances in technology and research are in constant development; in 5 years’ time, I may be able to have my complex-partial seizures eliminated. Who knows?”

In

65 %

of cases of epilepsy there is no known cause.

11


Driving Research

Driving Research

Focus on

Unknown cause Professor Kirill Volynski, from the Institute of Neurology at University College London, is researching whether the relationship between epilepsy and migraine can help identify new targets for antiepileptic drugs (AEDs). “Epilepsy and migraine occur together more often than would be expected from chance: a diagnosis of epilepsy doubles the risk of migraine. The ‘aura’ of migraine is, however, very different from a seizure. Funding from ERUK is enabling us to investigate the enigmatic mechanisms that predispose cortical neuronal networks either to seizures or to a slowly propagating wave of inexcitability typical for migraine aura”. Whilst some epilepsies have a clear cause, in 65% of cases there is no known reason for the development of the condition. However, epilepsy and migraine exhibit substantial similarities: both conditions are episodic, several antiepileptic drugs are effective in migraine treatment, and both seizures and ‘migraine headaches’ can be induced by brain trauma. In addition, mutations of the same genes can lead either to epilepsy or to a severe form of migraine with aura. So why is it that the excessive firing of neurons in some people leads to epilepsy, and in others to the aura associated with some forms of migraine? In this project Professor Kirill Volynski and colleagues aim to understand the

10

relationship between seizures and migraine aura mechanisms, which may lead to new therapeutic targets for both epilepsy and migraine.

James Nelson has never discovered the cause of his epilepsy. He tells us his experience of developing the condition and his hopes for advances in research. “I first developed a mild form of epilepsy aged 16 whilst at school. Like the vast majority of the population, I had no idea what the word signified and what the condition was. I ignored it for some time, thinking it might have been due to an increase in A-level studies and an active lifestyle. These strange, indescribable feelings weren’t occurring every day, so I just brushed it off. I arrived home from school one day and casually mentioned it to my mum, who immediately diagnosed the condition. She’s not in the medical

James Nelson has never discovered the cause of his epilepsy

profession but has an astute knowledge of all things medical! An appointment with my GP was made and I further embarked on a lifetime of scans, tests and consultant meetings. All of my investigations, scans and tests have shown my brain to be normal and herein lies the problem. In my case, like 65% of people diagnosed with epilepsy, there is no known cause. I was offered surgery in more recent years but the chances of success were relatively low and the danger of infection relatively high. I decided against it.

I may well be on medication for the rest of my life and the deterioration of my memory is worrying but as my wonderful neurologist has mentioned to me, the advances in technology and research are in constant development; in 5 years’ time, I may be able to have my complex-partial seizures eliminated. Who knows?”

In

65 %

of cases of epilepsy there is no known cause.

11


Driving Research

Driving Research

Focus on

Uncontrolled seizures Dr Simon Keller from the University of Liverpool tells us about his work in understanding brain networks in those with epilepsy to see how the different parts of the brain are connected. “Being able to predict whether a patient with epilepsy will respond to antiepileptic drug (AED) therapy will increase the likelihood of bringing seizures under control sooner, through an earlier exploration of alternative or adjunctive treatments. Imaging the brain’s structural and functional networks may offer that possibility”.

30 %

of people with epilepsy live with uncontrolled seizures that do not respond to medication.

12

Nick Christian has first-hand experience of how research can change lives. His daughter Rachel, now 16, was first diagnosed with epilepsy at the age of three. “We started noticing that Rachel was having periods where she went completely vacant and would tense up and almost shut down. These absences varied in duration from a few seconds to as long as 10 minutes, during which time she would lose her hearing, speech and awareness. If she was in the midst of doing something she would fall over or just curl up into a ball. As a result she required constant supervision for fear that she would have a seizure and injure herself.

The reasons why treatment fails in some patients are unknown, and there is currently no way of predicting which patients will not respond to treatment. This often means patients are required to trial numerous medications for months at a time, without success. Dr Keller is investigating brain networks in those with epilepsy to see how the different parts of the brain are connected. This work seeks to identify reliable non-invasive brain imaging biomarkers of AED treatment. The hope is that the findings will enable us to predict, at the point of diagnosis, which patients will not respond to this treatment. This may lead to earlier exploration of alternative or adjunctive treatments, such as surgery, for these patients, to bring their seizures under control sooner.

Uncontrolled seizures have been a research priority for ERUK since the charity began. Research funded by ERUK into paediatric epilepsy surgery and neuroimaging has led to crucial developments in surgical techniques. These techniques have benefitted patients such as Rachel Christian, whose seizures were not controlled by AEDs.

Dr Simon Keller from the University of Liverpool

AED therapy is the first line of treatment for someone newly diagnosed with epilepsy. However, it fails to control seizures in over 30% of people with epilepsy.

Rachel was diagnosed with epilepsy at the age of three and put on medication. Some drugs made her puffy and bloated; others made her slow and confused, but they didn’t stop the almost daily seizures which hampered her development. Unfortunately, she was one of the 30% of people with epilepsy who live with uncontrolled seizures, but luckily for us, surgery was an option.

Nick Christian and his daughter Rachel

In February 2010 a piece of tissue the size of a 20 pence piece was removed from Rachel’s brain and we saw a dramatic and instant transformation in her. Since her surgery Rachel has come off all her medication and hasn’t had a seizure since. Rachel’s successful operation was ground breaking and only possible because of research partly funded by Epilepsy Research UK, which has led to advances in neuroimaging and surgical techniques.”

13


Driving Research

Driving Research

Focus on

Uncontrolled seizures Dr Simon Keller from the University of Liverpool tells us about his work in understanding brain networks in those with epilepsy to see how the different parts of the brain are connected. “Being able to predict whether a patient with epilepsy will respond to antiepileptic drug (AED) therapy will increase the likelihood of bringing seizures under control sooner, through an earlier exploration of alternative or adjunctive treatments. Imaging the brain’s structural and functional networks may offer that possibility”.

30 %

of people with epilepsy live with uncontrolled seizures that do not respond to medication.

12

Nick Christian has first-hand experience of how research can change lives. His daughter Rachel, now 16, was first diagnosed with epilepsy at the age of three. “We started noticing that Rachel was having periods where she went completely vacant and would tense up and almost shut down. These absences varied in duration from a few seconds to as long as 10 minutes, during which time she would lose her hearing, speech and awareness. If she was in the midst of doing something she would fall over or just curl up into a ball. As a result she required constant supervision for fear that she would have a seizure and injure herself.

The reasons why treatment fails in some patients are unknown, and there is currently no way of predicting which patients will not respond to treatment. This often means patients are required to trial numerous medications for months at a time, without success. Dr Keller is investigating brain networks in those with epilepsy to see how the different parts of the brain are connected. This work seeks to identify reliable non-invasive brain imaging biomarkers of AED treatment. The hope is that the findings will enable us to predict, at the point of diagnosis, which patients will not respond to this treatment. This may lead to earlier exploration of alternative or adjunctive treatments, such as surgery, for these patients, to bring their seizures under control sooner.

Uncontrolled seizures have been a research priority for ERUK since the charity began. Research funded by ERUK into paediatric epilepsy surgery and neuroimaging has led to crucial developments in surgical techniques. These techniques have benefitted patients such as Rachel Christian, whose seizures were not controlled by AEDs.

Dr Simon Keller from the University of Liverpool

AED therapy is the first line of treatment for someone newly diagnosed with epilepsy. However, it fails to control seizures in over 30% of people with epilepsy.

Rachel was diagnosed with epilepsy at the age of three and put on medication. Some drugs made her puffy and bloated; others made her slow and confused, but they didn’t stop the almost daily seizures which hampered her development. Unfortunately, she was one of the 30% of people with epilepsy who live with uncontrolled seizures, but luckily for us, surgery was an option.

Nick Christian and his daughter Rachel

In February 2010 a piece of tissue the size of a 20 pence piece was removed from Rachel’s brain and we saw a dramatic and instant transformation in her. Since her surgery Rachel has come off all her medication and hasn’t had a seizure since. Rachel’s successful operation was ground breaking and only possible because of research partly funded by Epilepsy Research UK, which has led to advances in neuroimaging and surgical techniques.”

13


Driving Research

Driving Research

The Trafford family share their story of the sudden loss of their son, Hector.

Focus on

Preventing deaths Professor Mark Richardson, from King’s College London, tells us about his work in predicting seizure occurrence using wearable device technology. “Living with epilepsy involves living with the uncertainty about when the next seizure will happen. Research work has been going on for nearly 30 years, to find ways to ‘forecast’ when an individual person will have their next seizure. Excitingly, some fantastic progress has been made in the last few years. We hope to build on this progress, to find a way to forecast seizures using the latest generation of home EEG and smartwatches. We hope to see seizure forecasting become a reality within the next few years.” Uncontrolled seizures are one of the most difficult and dangerous aspects of epilepsy and can increase the risk of death. This project aims to find a way to forecast seizures using the latest generation of EEG and smartwatches. Participants will be asked to give information about sleep, stress and medication, and will record their own EEG at home for 10 minutes, twice every day. They will also wear a

21 There are

smartwatch device that records movement and heart rate. The researchers hope that outcomes from this study will enable seizure forecasting within the next few years. This, in turn, may help people with epilepsy to reduce their risk factors for life-threatening epilepsy, such as SUDEP (sudden unexpected death in epilepsy). Professor Richardson’s project has been supported by our memorial funds. Our heartfelt thanks go to all our memorial fund supporters for their tremendous commitment to providing hope for others for the future.

Professor Mark Richardson, from King’s College London

“Hector was diagnosed with absences when he was 10 and at aged 12 had his first tonic-clonic seizure. We never managed to control either his absence seizures or his epilepsy with drugs. He was on his fourth set of medication, but nothing worked. At his worst he had one fit a week and sometimes there were gaps of 4 or 5 weeks. Without us really understanding, he fell into a higher risk category for SUDEP, a young male with uncontrolled seizures. Hector was 13 when he had an epileptic seizure just a few metres away from us but in a different room. We don’t know exactly what happened, but when we found him some minutes later he wasn’t breathing.” There are over 21 epilepsy-related deaths a week in the UK of which half are due to SUDEP. SUDEP is given as a cause of death when a person with epilepsy dies suddenly and prematurely and no other cause is found.

epilepsy-related deaths every week

14

15


Driving Research

Driving Research

The Trafford family share their story of the sudden loss of their son, Hector.

Focus on

Preventing deaths Professor Mark Richardson, from King’s College London, tells us about his work in predicting seizure occurrence using wearable device technology. “Living with epilepsy involves living with the uncertainty about when the next seizure will happen. Research work has been going on for nearly 30 years, to find ways to ‘forecast’ when an individual person will have their next seizure. Excitingly, some fantastic progress has been made in the last few years. We hope to build on this progress, to find a way to forecast seizures using the latest generation of home EEG and smartwatches. We hope to see seizure forecasting become a reality within the next few years.” Uncontrolled seizures are one of the most difficult and dangerous aspects of epilepsy and can increase the risk of death. This project aims to find a way to forecast seizures using the latest generation of EEG and smartwatches. Participants will be asked to give information about sleep, stress and medication, and will record their own EEG at home for 10 minutes, twice every day. They will also wear a

21 There are

smartwatch device that records movement and heart rate. The researchers hope that outcomes from this study will enable seizure forecasting within the next few years. This, in turn, may help people with epilepsy to reduce their risk factors for life-threatening epilepsy, such as SUDEP (sudden unexpected death in epilepsy). Professor Richardson’s project has been supported by our memorial funds. Our heartfelt thanks go to all our memorial fund supporters for their tremendous commitment to providing hope for others for the future.

Professor Mark Richardson, from King’s College London

“Hector was diagnosed with absences when he was 10 and at aged 12 had his first tonic-clonic seizure. We never managed to control either his absence seizures or his epilepsy with drugs. He was on his fourth set of medication, but nothing worked. At his worst he had one fit a week and sometimes there were gaps of 4 or 5 weeks. Without us really understanding, he fell into a higher risk category for SUDEP, a young male with uncontrolled seizures. Hector was 13 when he had an epileptic seizure just a few metres away from us but in a different room. We don’t know exactly what happened, but when we found him some minutes later he wasn’t breathing.” There are over 21 epilepsy-related deaths a week in the UK of which half are due to SUDEP. SUDEP is given as a cause of death when a person with epilepsy dies suddenly and prematurely and no other cause is found.

epilepsy-related deaths every week

14

15


Inspiring collaboration

Inspiring collaboration

Inspiring collaboration

Céline Stephanie Newman

Something incredible happens when you bring together people who share a common overall purpose.

“Our beautiful daughter Céline was eight months old when she started to have noticeable seizures. On her first birthday, we received the news that she had tuberous sclerosis. Like everyone who has a child with special needs, or a sick child, our family life changed drastically, as we were doing what we could to give our daughter the best quality of life possible. Anxiety, questions, worries were from then onwards our daily, routine life.

That’s why at Epilepsy Research UK we host specialist workshops and other events that connect clinicians, researchers, scientists, patients and supporters as they share knowledge, exchange ideas and build relationships. We know that by doing this, we will drive further innovations and greater investment in research into epilepsy. We have many tactics for undertaking this work, whether through regional ‘Meet the Researcher’ events or expert workshops. We also know that inspiring collaboration helps many of our supporters to feel part of a better future for those affected by epilepsy. For the Newman family, funding a scientific prize in memory of their daughter and working with us on a programme to promote Anglo-French collaborations is a way of saying thank you for the research that their daughter benefitted from and to achieve something of which she would have been proud.

Bringing regional researchers together We kick-started the year with the first of our regional ‘Meet the Researcher’ evenings in Leeds, followed by another successful event in Newcastle. These events offer a great opportunity to share experiences between our supporters and funded researchers.

16

Researchers bring news of their recent findings and ongoing projects, whilst supporters share their motivation for getting involved with the charity and their hopes for how research will improve the quality of life for people living with epilepsy. Recent recipients of the ERUK Céline Newman Prize for Epilepsy Research: 2017 Dr Andreas Lieb, University College London Closed-loop gene therapy for intractable focal epilepsy - a potential future gene therapy that can detect and block seizures at a particular stage.  016 Dr Ryley Parrish, 2 Newcastle University Homeostatic conflict in cortical interneurons: evidence from gene-expression studies - looking at a particular class of nerve cells that help to resist seizure activity and how they may hold clues to determining whether someone might develop epilepsy following brain trauma. 2015 Dr Vincent Magloire, University College London Differential roles of somatic inhibition in interictal and ictal discharges.

As a family, we just had to adapt. At the age of three, she was on skis; age four, she was swimming like a fish. At the age of nine, Céline had brain surgery at Great Ormond Street Hospital to remove as many of the lesions as possible and the results were extremely positive. As a family, we started to holiday-travel far away, and everything was geared towards Céline’s intense love of nature… Her wonderful consultant at Great Ormond Street, the late Professor Brian Neville, had to convince her that she really could not go scuba-diving, and so she joined a shark hunting expedition trip in South Africa, where she helped the divers to prepare. Our last family trip together was an unforgettable week in the Galapagos. Her absolute dream come true. Céline took a lot, but she gave back so much more. With her smile, her humour and her bouncy and positive personality through all

her ups and downs, she was always popular with both our friends and hers. One early morning in her hall of residence far away in Berkeley, CA, where she lived while studying in San Francisco, Céline passed away, having suffered an acute nocturnal fit. Céline was bilingual French-English, and although she had a very troubled first nine years of life, during the following sixteen years, she packed in more than many

Céline Stephanie Newman people do in a normal life span. She is with us at all times, laughing, travelling, enjoying life, and bringing happiness and joy to everyone and everything around her. This was Céline. As proud parents of such a girl, who was able to benefit so much from the developments of research science, we are very happy to have been involved with support for the ERUK Céline Newman Prize for Epilepsy Research.” Paul and Fanette Newman

17


Inspiring collaboration

Inspiring collaboration

Inspiring collaboration

Céline Stephanie Newman

Something incredible happens when you bring together people who share a common overall purpose.

“Our beautiful daughter Céline was eight months old when she started to have noticeable seizures. On her first birthday, we received the news that she had tuberous sclerosis. Like everyone who has a child with special needs, or a sick child, our family life changed drastically, as we were doing what we could to give our daughter the best quality of life possible. Anxiety, questions, worries were from then onwards our daily, routine life.

That’s why at Epilepsy Research UK we host specialist workshops and other events that connect clinicians, researchers, scientists, patients and supporters as they share knowledge, exchange ideas and build relationships. We know that by doing this, we will drive further innovations and greater investment in research into epilepsy. We have many tactics for undertaking this work, whether through regional ‘Meet the Researcher’ events or expert workshops. We also know that inspiring collaboration helps many of our supporters to feel part of a better future for those affected by epilepsy. For the Newman family, funding a scientific prize in memory of their daughter and working with us on a programme to promote Anglo-French collaborations is a way of saying thank you for the research that their daughter benefitted from and to achieve something of which she would have been proud.

Bringing regional researchers together We kick-started the year with the first of our regional ‘Meet the Researcher’ evenings in Leeds, followed by another successful event in Newcastle. These events offer a great opportunity to share experiences between our supporters and funded researchers.

16

Researchers bring news of their recent findings and ongoing projects, whilst supporters share their motivation for getting involved with the charity and their hopes for how research will improve the quality of life for people living with epilepsy. Recent recipients of the ERUK Céline Newman Prize for Epilepsy Research: 2017 Dr Andreas Lieb, University College London Closed-loop gene therapy for intractable focal epilepsy - a potential future gene therapy that can detect and block seizures at a particular stage.  016 Dr Ryley Parrish, 2 Newcastle University Homeostatic conflict in cortical interneurons: evidence from gene-expression studies - looking at a particular class of nerve cells that help to resist seizure activity and how they may hold clues to determining whether someone might develop epilepsy following brain trauma. 2015 Dr Vincent Magloire, University College London Differential roles of somatic inhibition in interictal and ictal discharges.

As a family, we just had to adapt. At the age of three, she was on skis; age four, she was swimming like a fish. At the age of nine, Céline had brain surgery at Great Ormond Street Hospital to remove as many of the lesions as possible and the results were extremely positive. As a family, we started to holiday-travel far away, and everything was geared towards Céline’s intense love of nature… Her wonderful consultant at Great Ormond Street, the late Professor Brian Neville, had to convince her that she really could not go scuba-diving, and so she joined a shark hunting expedition trip in South Africa, where she helped the divers to prepare. Our last family trip together was an unforgettable week in the Galapagos. Her absolute dream come true. Céline took a lot, but she gave back so much more. With her smile, her humour and her bouncy and positive personality through all

her ups and downs, she was always popular with both our friends and hers. One early morning in her hall of residence far away in Berkeley, CA, where she lived while studying in San Francisco, Céline passed away, having suffered an acute nocturnal fit. Céline was bilingual French-English, and although she had a very troubled first nine years of life, during the following sixteen years, she packed in more than many

Céline Stephanie Newman people do in a normal life span. She is with us at all times, laughing, travelling, enjoying life, and bringing happiness and joy to everyone and everything around her. This was Céline. As proud parents of such a girl, who was able to benefit so much from the developments of research science, we are very happy to have been involved with support for the ERUK Céline Newman Prize for Epilepsy Research.” Paul and Fanette Newman

17


Inspiring collaboration

Inspiring collaboration

The Epilepsy Research UK Corsellis Brain Collection – enabling future research “The Epilepsy Research UK Corsellis Brain Collection is a unique archive of brain samples from patients with epilepsy, collected during the second half of the last century. Restoration and systematic cataloguing of this archive will facilitate modern day epilepsy research.” Professor Maria Thom, UCL

Professor John Corsellis

Between 1950 and 1997, brain tissue samples from people with epilepsy who had died and had a post-mortem examination were systematically studied by the eminent neuropathologist, Professor John Corsellis. Professor Corsellis published important studies based on what became known as the Corsellis Collection – one of the foremost and largest brain tissue banks. His epilepsy publications remain highly regarded and relevant to this day, including seminal works on temporal lobe epilepsy and the brain alterations following status epilepticus.

Professor Maria Thom

18

University College London has recently acquired this historical tissue archive of epilepsy cases, the restoration of which has been awarded £47,000 funding by ERUK. Professor Maria Thom’s aim is to restore, re-examine and catalogue the Corsellis Epilepsy Collection for use in modern research. Up-to-date pathology

Looking ahead to our expert workshop and genetic methods can now be applied to re-examine and re-classify these cases to compare with modern surgical series. Over a two-year period, Professor Thom and colleagues plan to restore this tissue collection, publish their findings and make this archive available to researchers. The collection is particularly valuable because epilepsy post-mortem tissue samples are becoming scarce due to medical advances and changing attitudes. Furthermore, the archive was collected from people with epilepsy who were alive during the 19th and 20th centuries, many with poorly controlled seizures, before effective medical and surgical treatments were available. This new collection will be known as the Epilepsy Research UK Corsellis Brain Collection.

Every two to three years, Epilepsy Research UK brings together world-leading experts to address upcoming and important areas of epilepsy research at its expert workshop. Our March 2019 workshop will focus on neurodevelopmental disorders and epilepsy. Children with neurodevelopmental disorders often experience difficulties with speech and language, motor skills, behaviour, memory, learning and neurological functions. Many of them also have epilepsy that is extremely difficult to treat, and this adds to an enormous burden of care and reduced quality of life. Workshop speakers and attendees will develop an optimal research strategy for the development of more effective treatments and improved quality of life for children with neurodevelopmental disorders and epilepsy. Along with the UK’s leading experts we will also be hearing from Professor Ingrid Scheffer (University of Melbourne), Professor Dennis Lal (Broad Institute of MIT and Harvard), and Professor David Henshall (The Royal College of Surgeons in Ireland).

19


Inspiring collaboration

Inspiring collaboration

The Epilepsy Research UK Corsellis Brain Collection – enabling future research “The Epilepsy Research UK Corsellis Brain Collection is a unique archive of brain samples from patients with epilepsy, collected during the second half of the last century. Restoration and systematic cataloguing of this archive will facilitate modern day epilepsy research.” Professor Maria Thom, UCL

Professor John Corsellis

Between 1950 and 1997, brain tissue samples from people with epilepsy who had died and had a post-mortem examination were systematically studied by the eminent neuropathologist, Professor John Corsellis. Professor Corsellis published important studies based on what became known as the Corsellis Collection – one of the foremost and largest brain tissue banks. His epilepsy publications remain highly regarded and relevant to this day, including seminal works on temporal lobe epilepsy and the brain alterations following status epilepticus.

Professor Maria Thom

18

University College London has recently acquired this historical tissue archive of epilepsy cases, the restoration of which has been awarded £47,000 funding by ERUK. Professor Maria Thom’s aim is to restore, re-examine and catalogue the Corsellis Epilepsy Collection for use in modern research. Up-to-date pathology

Looking ahead to our expert workshop and genetic methods can now be applied to re-examine and re-classify these cases to compare with modern surgical series. Over a two-year period, Professor Thom and colleagues plan to restore this tissue collection, publish their findings and make this archive available to researchers. The collection is particularly valuable because epilepsy post-mortem tissue samples are becoming scarce due to medical advances and changing attitudes. Furthermore, the archive was collected from people with epilepsy who were alive during the 19th and 20th centuries, many with poorly controlled seizures, before effective medical and surgical treatments were available. This new collection will be known as the Epilepsy Research UK Corsellis Brain Collection.

Every two to three years, Epilepsy Research UK brings together world-leading experts to address upcoming and important areas of epilepsy research at its expert workshop. Our March 2019 workshop will focus on neurodevelopmental disorders and epilepsy. Children with neurodevelopmental disorders often experience difficulties with speech and language, motor skills, behaviour, memory, learning and neurological functions. Many of them also have epilepsy that is extremely difficult to treat, and this adds to an enormous burden of care and reduced quality of life. Workshop speakers and attendees will develop an optimal research strategy for the development of more effective treatments and improved quality of life for children with neurodevelopmental disorders and epilepsy. Along with the UK’s leading experts we will also be hearing from Professor Ingrid Scheffer (University of Melbourne), Professor Dennis Lal (Broad Institute of MIT and Harvard), and Professor David Henshall (The Royal College of Surgeons in Ireland).

19


Transforming lives

Transforming lives

Transforming lives As you can read in this report, the evidence is clear: scientific research transforms lives. But despite this knowledge, government investment in research remains under threat. Budget cuts, political uncertainty and reduced collaboration opportunities all have the potential to halt the progress of research into epilepsy. At ERUK we are committed to ensuring that innovations and novel ideas are advanced. The scientists and clinicians you see profiled throughout this report are dedicated to finding ways to stop seizures, develop new therapies and ultimately find a cure. Their sole focus: to transform the lives of people living with epilepsy. We know that, as one of our supporters, you want this too. And it is only through your investment that we can safeguard the progression of this vital work.

How does sensory stimulation affect how seizures spread across the brain?

Dr Jason Berwick, University of Sheffield

Project grant: £147,758

Status: Completed

Dr Berwick and colleagues’ project has helped to illustrate how seizures spread and the role that sensory stimulation may play. “This project enabled me to meet people with epilepsy as well as people who raise money for ERUK. It was a humbling experience. My job is to not let these people down.”

Whether you give regularly or occasionally, have baked a cake or run a marathon, given your time or shared your story, made a gift through a company or charitable trust, we are truly thankful.

Recent research

Predicting risk of post-stroke epilepsy

Dr Beate Diehl, National Hospital for Neurology and Neurosurgery

Pilot grant: £29,080

Status: Completed

Stroke is the most common cause of epilepsy in people over the age of 60. Using computerised analysis of the damage caused by a stroke and its extent and location, the researchers found that people with post-stroke epilepsy had a considerably larger volume of damage than those without. In fact, the stroke was roughly double the size in people who developed post-stroke epilepsy. Therefore, a larger stroke is a risk factor for developing post-stroke epilepsy. “I am very grateful that ERUK enabled us to investigate why some people with stroke develop epilepsy and others do not using a huge existing MRI database.” Cutting-edge techniques to explore brain cell activity in epilepsy

Dr Robert Wykes, Institute of Neurology, University College London Status: Completed

Investigating how epilepsy is triggered after a brain injury

Professor Andrew Trevelyan, Newcastle University

Fellowship award: £211,516

Project grant: £147,334

Status: Completed

Dr Wykes was among the first to apply optical imaging of neocortical network activity to study important questions in the field of epilepsy. Using a cutting-edge technique called fluorescence microscopy he examined the activity of large populations of brain cells to see how they behave before and during a seizure. This method can now be used to help guide new treatments to prevent seizures, and can also be applied to detect post-seizure spreading depression, which may be important in the induction of sudden unexpected death in epilepsy (SUDEP).

In 65% of cases, the cause of a person’s epilepsy is not known. This recently completed project explored how brain injuries (such as stroke or head injury) can lead to changes in how brain cells function, causing epilepsy. This project may enable the development of future treatments and preventative measures. “Research is a slow process, that requires committed people who have been trained over many years. Only then can we start to make real inroads into understanding this difficult and complex condition. This funding has enabled me to keep talented, key members of my research team.”

20

“The research fellowship awarded to me by ERUK has allowed me to develop a new technique for epilepsy research, consolidate and enhance my reputation in the epilepsy community, prepare me for the transition to independence, and secure further funding for epilepsy research. ERUK have been fantastic.”

21


Transforming lives

Transforming lives

Transforming lives As you can read in this report, the evidence is clear: scientific research transforms lives. But despite this knowledge, government investment in research remains under threat. Budget cuts, political uncertainty and reduced collaboration opportunities all have the potential to halt the progress of research into epilepsy. At ERUK we are committed to ensuring that innovations and novel ideas are advanced. The scientists and clinicians you see profiled throughout this report are dedicated to finding ways to stop seizures, develop new therapies and ultimately find a cure. Their sole focus: to transform the lives of people living with epilepsy. We know that, as one of our supporters, you want this too. And it is only through your investment that we can safeguard the progression of this vital work.

How does sensory stimulation affect how seizures spread across the brain?

Dr Jason Berwick, University of Sheffield

Project grant: £147,758

Status: Completed

Dr Berwick and colleagues’ project has helped to illustrate how seizures spread and the role that sensory stimulation may play. “This project enabled me to meet people with epilepsy as well as people who raise money for ERUK. It was a humbling experience. My job is to not let these people down.”

Whether you give regularly or occasionally, have baked a cake or run a marathon, given your time or shared your story, made a gift through a company or charitable trust, we are truly thankful.

Recent research

Predicting risk of post-stroke epilepsy

Dr Beate Diehl, National Hospital for Neurology and Neurosurgery

Pilot grant: £29,080

Status: Completed

Stroke is the most common cause of epilepsy in people over the age of 60. Using computerised analysis of the damage caused by a stroke and its extent and location, the researchers found that people with post-stroke epilepsy had a considerably larger volume of damage than those without. In fact, the stroke was roughly double the size in people who developed post-stroke epilepsy. Therefore, a larger stroke is a risk factor for developing post-stroke epilepsy. “I am very grateful that ERUK enabled us to investigate why some people with stroke develop epilepsy and others do not using a huge existing MRI database.” Cutting-edge techniques to explore brain cell activity in epilepsy

Dr Robert Wykes, Institute of Neurology, University College London Status: Completed

Investigating how epilepsy is triggered after a brain injury

Professor Andrew Trevelyan, Newcastle University

Fellowship award: £211,516

Project grant: £147,334

Status: Completed

Dr Wykes was among the first to apply optical imaging of neocortical network activity to study important questions in the field of epilepsy. Using a cutting-edge technique called fluorescence microscopy he examined the activity of large populations of brain cells to see how they behave before and during a seizure. This method can now be used to help guide new treatments to prevent seizures, and can also be applied to detect post-seizure spreading depression, which may be important in the induction of sudden unexpected death in epilepsy (SUDEP).

In 65% of cases, the cause of a person’s epilepsy is not known. This recently completed project explored how brain injuries (such as stroke or head injury) can lead to changes in how brain cells function, causing epilepsy. This project may enable the development of future treatments and preventative measures. “Research is a slow process, that requires committed people who have been trained over many years. Only then can we start to make real inroads into understanding this difficult and complex condition. This funding has enabled me to keep talented, key members of my research team.”

20

“The research fellowship awarded to me by ERUK has allowed me to develop a new technique for epilepsy research, consolidate and enhance my reputation in the epilepsy community, prepare me for the transition to independence, and secure further funding for epilepsy research. ERUK have been fantastic.”

21


Transforming lives

Transforming lives

Transforming lives We asked our supporters why they give to epilepsy research and we asked the researchers what they hope to achieve with the funding they receive.

“Epilepsy research is incredibly under-funded and has little media attention and we hope that by raising funds we can start to change that a little at a time.” The Abba family

“Pilot grant funding from ERUK has been invaluable in our goal to improve care of children with refractory epilepsy. We have been able to complete sufficient work to create a publication that will influence our field in the short-term.” Professor Stefano Seri, Aston University

“Through early genetic testing in children with seizures we can choose the right medication, control seizures, give families answers and help make the future less uncertain.” Professor Sameer Zuberi, Royal Hospital for Children, Glasgow

“A good friend’s son was born with severe epilepsy and was having seizures from only a few weeks old. Six years on his epilepsy is still not under control. After being diagnosed with epilepsy myself this has become more of an incentive to help fund vital research so one day everyone can live seizure free.” Simon walking the Thames Path

“Many individuals with epilepsy also suffer from depression, which adds to the burden of coping with seizures. Our research contributes to the understanding of the brain mechanisms involved in depression in epilepsy and will help to identify those who may be more vulnerable to depression.” Dr Jackie Foong, National Hospital for Neurology and Neurosurgery

“Without research into the right medication, I would never be able to do a trip like this. I spoke with so many people from different countries about epilepsy, most of whom knew little about it.” Francesca walking the Camino de Santiago

“My twin has lived with epilepsy for about 7 years now. We are still on the search for the root cause and await a complete diagnosis in order to hopefully find ways to improve her life. I was so determined to do something amazing for her and other people with epilepsy.”

“We as a family want to keep Elena’s memory alive by raising vital funds for research which will help others.” Elena’s family

Annabel on running the Brighton Marathon

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23


Transforming lives

Transforming lives

Transforming lives We asked our supporters why they give to epilepsy research and we asked the researchers what they hope to achieve with the funding they receive.

“Epilepsy research is incredibly under-funded and has little media attention and we hope that by raising funds we can start to change that a little at a time.” The Abba family

“Pilot grant funding from ERUK has been invaluable in our goal to improve care of children with refractory epilepsy. We have been able to complete sufficient work to create a publication that will influence our field in the short-term.” Professor Stefano Seri, Aston University

“Through early genetic testing in children with seizures we can choose the right medication, control seizures, give families answers and help make the future less uncertain.” Professor Sameer Zuberi, Royal Hospital for Children, Glasgow

“A good friend’s son was born with severe epilepsy and was having seizures from only a few weeks old. Six years on his epilepsy is still not under control. After being diagnosed with epilepsy myself this has become more of an incentive to help fund vital research so one day everyone can live seizure free.” Simon walking the Thames Path

“Many individuals with epilepsy also suffer from depression, which adds to the burden of coping with seizures. Our research contributes to the understanding of the brain mechanisms involved in depression in epilepsy and will help to identify those who may be more vulnerable to depression.” Dr Jackie Foong, National Hospital for Neurology and Neurosurgery

“Without research into the right medication, I would never be able to do a trip like this. I spoke with so many people from different countries about epilepsy, most of whom knew little about it.” Francesca walking the Camino de Santiago

“My twin has lived with epilepsy for about 7 years now. We are still on the search for the root cause and await a complete diagnosis in order to hopefully find ways to improve her life. I was so determined to do something amazing for her and other people with epilepsy.”

“We as a family want to keep Elena’s memory alive by raising vital funds for research which will help others.” Elena’s family

Annabel on running the Brighton Marathon

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A massive thank you to everyone who has helped support our research.

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A massive thank you to everyone who has helped support our research.

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A good investment?

A good investment?

A good investment? Here’s all you need to know... Research impact

Quality hallmark – AMRC

Using Researchfish – the independent research impact assessment platform – we have tracked the successes of research we have funded in the last five years.

Membership of the Association of Medical Research Charities (AMRC) is the hallmark of quality and credibility. It means we fund high-quality research that is associated with a published research strategy and has a robust peer-review process and an exhaustive conflicts of interest policy.

During this period we invested almost £3.5 million in research grants and these have leveraged a further £18.4 million in follow-on funding from other sources. Every pound invested by Epilepsy Research UK has therefore generated a further £4.90 for epilepsy research. Using Researchfish we can closely monitor the impact of our grants to ensure that your donations support the highest quality research. Researchfish enables our researchers to tell us where their findings have been disseminated and the likely impact on future epilepsy research. Often, the research we fund is the first step in a long journey to developing vital new treatments.

As members, our research procedures are audited every five years to ensure they meet the exacting membership standards. For universities, government and other funding bodies, AMRC membership is a recognised indicator of quality. We also attend regular training alongside other research charities to develop best practice approaches and share learning.

Medical research charities contributed

Here’s a summary of the investment AMRC members make to improving health care:

• Capital investments of £71 million were made in the UK by charities in 2017

Economic impact of research • Every £1 invested in medical research delivers a return equivalent to around 25p every year, for ever.

• £1.6 billion of research funding in the UK in 2017 • £13 billion in research in the UK since the sector started collecting data in 2008 • AMRC members fund nearly half of all publicly funded medical research nationally

• Over 17,000 researcher salaries were funded by medical research charities in 2017

• Every £1 of public or charity investment in medical research is also associated with an additional £0.83-£1.07 of private sector R&D spend. This spill-over effect leads to a real annual rate of return on the investment of 15–18%.

£1

£4.90

• Combined, the total annual rate of return on public or charitable investment in medical research is 24-28%.

Generated for epilepsy research

26

27


A good investment?

A good investment?

A good investment? Here’s all you need to know... Research impact

Quality hallmark – AMRC

Using Researchfish – the independent research impact assessment platform – we have tracked the successes of research we have funded in the last five years.

Membership of the Association of Medical Research Charities (AMRC) is the hallmark of quality and credibility. It means we fund high-quality research that is associated with a published research strategy and has a robust peer-review process and an exhaustive conflicts of interest policy.

During this period we invested almost £3.5 million in research grants and these have leveraged a further £18.4 million in follow-on funding from other sources. Every pound invested by Epilepsy Research UK has therefore generated a further £4.90 for epilepsy research. Using Researchfish we can closely monitor the impact of our grants to ensure that your donations support the highest quality research. Researchfish enables our researchers to tell us where their findings have been disseminated and the likely impact on future epilepsy research. Often, the research we fund is the first step in a long journey to developing vital new treatments.

As members, our research procedures are audited every five years to ensure they meet the exacting membership standards. For universities, government and other funding bodies, AMRC membership is a recognised indicator of quality. We also attend regular training alongside other research charities to develop best practice approaches and share learning.

Medical research charities contributed

Here’s a summary of the investment AMRC members make to improving health care:

• Capital investments of £71 million were made in the UK by charities in 2017

Economic impact of research • Every £1 invested in medical research delivers a return equivalent to around 25p every year, for ever.

• £1.6 billion of research funding in the UK in 2017 • £13 billion in research in the UK since the sector started collecting data in 2008 • AMRC members fund nearly half of all publicly funded medical research nationally

• Over 17,000 researcher salaries were funded by medical research charities in 2017

• Every £1 of public or charity investment in medical research is also associated with an additional £0.83-£1.07 of private sector R&D spend. This spill-over effect leads to a real annual rate of return on the investment of 15–18%.

£1

£4.90

• Combined, the total annual rate of return on public or charitable investment in medical research is 24-28%.

Generated for epilepsy research

26

27


Finance

Summary accounts

Finance 2017–18 has been an unprecedented year, with Epilepsy Research UK investing over £1 million in 12 outstanding research studies. Our overall incoming resources were £2,227,790 due to an exceptional level of legacy income and a few generous bequests. This has enabled us to increase our commitment to awarding research grants by 64% compared with the previous year. Whilst recognising the income on a number of legacies will not give rise to realised funds for a period of time, most of the surplus for the year has been allocated to a designated research reserve for awarding the coming year.

Trustees’ statement The financial information included in this report is extracted and summarised from the accounts of Epilepsy Research UK for the year ending 31st March 2018. The summarised accounts may not contain sufficient information for a full understanding of the financial affairs of the charity. For further information, the full annual accounts, the auditors’ report on those accounts and the trustees’ annual report should be consulted. Copies of these can be obtained from Epilepsy Research UK, PO Box 3004, London W4 4XT. The annual accounts were approved by the trustees on 21st June 2018 and the annual report and accounts have been submitted to the Charity Commission. The accounts have been audited and have been given an unqualified report by our auditors.

Summary accounts Statement of Financial Activities (including the Income & Expenditure Account) for the year ended 31st March 2018.

Income

Unrestricted Restricted Funds (£) Funds (£)

Total Funds 2018 (£)

Total Funds 2017 (£)

Income Donations and legacies

£781,620 Donations

£1,362,933 Legacies

£23,210 Investment income

£29,962 Trading

2,139,553

5,000

2,144,553

1,250,991

Charitable activities – research grants not required

30,065

30,065

104,454

Other trading activities

29,962

29,962

31,438

Investments

23,210

23,210

16,115

2,222,790

5,000

2,227,790

1,402,998

240,907

240,907

299,202

1,029,182

5,000

1,034,182

629,980

387,939

1,204

389,143

412,070

Total income

Expenditure Raising funds

£30,065 Grants written back

Charitable activities Research grants committed Other charitable activities

Expenditure

Total charitable activities Total expenditure

Net (loss)/gains on investments

1,417,121

6,204

1,423,325

1,042,050

1,658,028

6,204

1,664,232

1,341,252

(10,195)

(10,195)

12,487

Net income/(expenditure) for the year

554,567

(1,204)

553,363

74,233

Net movement in funds for the year

554,567

(1,204)

553,363

74,233

763,425

31,199

794,624

720,391

1,317,992

29,995

1,347,987

794,624

Reconciliation of funds £1,034,182 Research grants committed £389,143 Other charitable activities

£240,907 Raising funds

Total funds brought forward at 1 April 2017 Total funds carried forward at 31 March 2018

The statement of financial activities includes all gains and losses in the year. All incoming resources and resources expended derive from continuing activities.

Judith Spencer-Gregson, Honorary Treasurer

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Finance

Summary accounts

Finance 2017–18 has been an unprecedented year, with Epilepsy Research UK investing over £1 million in 12 outstanding research studies. Our overall incoming resources were £2,227,790 due to an exceptional level of legacy income and a few generous bequests. This has enabled us to increase our commitment to awarding research grants by 64% compared with the previous year. Whilst recognising the income on a number of legacies will not give rise to realised funds for a period of time, most of the surplus for the year has been allocated to a designated research reserve for awarding the coming year.

Trustees’ statement The financial information included in this report is extracted and summarised from the accounts of Epilepsy Research UK for the year ending 31st March 2018. The summarised accounts may not contain sufficient information for a full understanding of the financial affairs of the charity. For further information, the full annual accounts, the auditors’ report on those accounts and the trustees’ annual report should be consulted. Copies of these can be obtained from Epilepsy Research UK, PO Box 3004, London W4 4XT. The annual accounts were approved by the trustees on 21st June 2018 and the annual report and accounts have been submitted to the Charity Commission. The accounts have been audited and have been given an unqualified report by our auditors.

Summary accounts Statement of Financial Activities (including the Income & Expenditure Account) for the year ended 31st March 2018.

Income

Unrestricted Restricted Funds (£) Funds (£)

Total Funds 2018 (£)

Total Funds 2017 (£)

Income Donations and legacies

£781,620 Donations

£1,362,933 Legacies

£23,210 Investment income

£29,962 Trading

2,139,553

5,000

2,144,553

1,250,991

Charitable activities – research grants not required

30,065

30,065

104,454

Other trading activities

29,962

29,962

31,438

Investments

23,210

23,210

16,115

2,222,790

5,000

2,227,790

1,402,998

240,907

240,907

299,202

1,029,182

5,000

1,034,182

629,980

387,939

1,204

389,143

412,070

Total income

Expenditure Raising funds

£30,065 Grants written back

Charitable activities Research grants committed Other charitable activities

Expenditure

Total charitable activities Total expenditure

Net (loss)/gains on investments

1,417,121

6,204

1,423,325

1,042,050

1,658,028

6,204

1,664,232

1,341,252

(10,195)

(10,195)

12,487

Net income/(expenditure) for the year

554,567

(1,204)

553,363

74,233

Net movement in funds for the year

554,567

(1,204)

553,363

74,233

763,425

31,199

794,624

720,391

1,317,992

29,995

1,347,987

794,624

Reconciliation of funds £1,034,182 Research grants committed £389,143 Other charitable activities

£240,907 Raising funds

Total funds brought forward at 1 April 2017 Total funds carried forward at 31 March 2018

The statement of financial activities includes all gains and losses in the year. All incoming resources and resources expended derive from continuing activities.

Judith Spencer-Gregson, Honorary Treasurer

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Governance President

Vice-Presidents

Scientific Advisory Committee

Professor Helen Cross OBE

Mr John Bowis OBE

Professor Bruno Frenguelli (Chair) Professor of Neuroscience University of Warwick

Dr John Mumford

Trustees Dr Graeme Sills Chair (outgoing) Professor Matthew Walker Chair (incoming) Mr Barrie Akin The Rt Hon Mr David Cameron Professor Bruno Frenguelli Ms Mary Gavigan Dr Yvonne Hart Dr John Hirst CBE Mr Simon Lanyon Professor Mark Rees Professor Mark Richardson Mr Harry Salmon

Mr Paul Newman Dr Jolyon Oxley Lord Stevenson of Coddenham CBE

Chief Executive Ms Maxine Smeaton

Mr Alasdair Ball (Vice-chair and lay representative) Head of Collection Management British Library Dr Andrew Bagshaw Reader in Imaging Neuroscience University of Birmingham Professor Michael Cousin Chair of Neuronal Cell Biology University of Edinburgh Mrs Anne Coxon (lay representative) Currently studying for a health psychology doctorate Professor Mark Cunningham Professor of Neurophysiology of Epilepsy Trinity College Dublin

Dr John Livingston Consultant Paediatric Neurologist Leeds Teaching Hospitals NHS Trust Dr Adam Noble Lecturer in Psychology University of Liverpool Professor Mark Richardson Professor in Epilepsy King’s College London Professor Stephanie Schorge Chair in Translational Neuroscience University College London Professor Matthew Walker (ex-officio as Chair of Trustees) Head of the Department of Clinical and Experimental Epilepsy and Professor of Neurology, UCL Institute of Neurology, and the National Hospital for Neurology and Neurosurgery

Miss Judith Spencer-Gregson

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Governance President

Vice-Presidents

Scientific Advisory Committee

Professor Helen Cross OBE

Mr John Bowis OBE

Professor Bruno Frenguelli (Chair) Professor of Neuroscience University of Warwick

Dr John Mumford

Trustees Dr Graeme Sills Chair (outgoing) Professor Matthew Walker Chair (incoming) Mr Barrie Akin The Rt Hon Mr David Cameron Professor Bruno Frenguelli Ms Mary Gavigan Dr Yvonne Hart Dr John Hirst CBE Mr Simon Lanyon Professor Mark Rees Professor Mark Richardson Mr Harry Salmon

Mr Paul Newman Dr Jolyon Oxley Lord Stevenson of Coddenham CBE

Chief Executive Ms Maxine Smeaton

Mr Alasdair Ball (Vice-chair and lay representative) Head of Collection Management British Library Dr Andrew Bagshaw Reader in Imaging Neuroscience University of Birmingham Professor Michael Cousin Chair of Neuronal Cell Biology University of Edinburgh Mrs Anne Coxon (lay representative) Currently studying for a health psychology doctorate Professor Mark Cunningham Professor of Neurophysiology of Epilepsy Trinity College Dublin

Dr John Livingston Consultant Paediatric Neurologist Leeds Teaching Hospitals NHS Trust Dr Adam Noble Lecturer in Psychology University of Liverpool Professor Mark Richardson Professor in Epilepsy King’s College London Professor Stephanie Schorge Chair in Translational Neuroscience University College London Professor Matthew Walker (ex-officio as Chair of Trustees) Head of the Department of Clinical and Experimental Epilepsy and Professor of Neurology, UCL Institute of Neurology, and the National Hospital for Neurology and Neurosurgery

Miss Judith Spencer-Gregson

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Cover image credit: Dr Peter Taylor, University of Newcastle

Epilepsy Research UK PO Box 3004, London W4 4XT 020 8747 5024 info@eruk.org.uk www.epilepsyresearch.org.uk Registered in England charity number 1100394 Registered office: Chiswick Town Hall, Heathfield Terrace, London W4 4JN Epilepsy Research UK is a member of the Association of Medical Research Charities Registered with the Fundraising Regulator Annual Review 2017/18. Published December 2018

Profile for Epilepsy Research UK

ERUK Annual Review 2018  

ERUK Annual Review 2018