Focus Newsletter - Spring 2018

PURPLE DAY AND NATIONAL EPILEPSY WEEK With Purple Day approaching on 26 March and National Epilepsy Week from 13 – 20 May, we’re looking forward to hearing all about your plans to raise funds and awareness through these two events.

Our website will be going purple for the day on 26 March and it’s not too late to ‘go purple’ to raise awareness of epilepsy.

Do send us your stories and photos after the event so we can share these on our social media too.

During National Epilepsy Week we’ll be announcing our latest grant awards at our annual London reception and asking you to join in with our fundraising activities.

Whether you hold a coffee morning, bake sale, or dress down day in the office or school, there are lots of ways you can show your support. Get in touch with us for your fundraising pack or to talk through any ideas.

It is only through research that we will bring about real benefits for those living with epilepsy and your help is vital to achieving this.

Regional ‘Meet a Researcher’ evenings - open to all!

Many thanks to all who supported our research this Christmas by buying our cards, organising card sales, and volunteering in the Cards for Good Causes and other charity Christmas card shops around the country.

Thanks to our membership of the National Free Wills Network we can offer you the opportunity to have your will written, or an existing will changed, by a local solicitor.

There is no obligation on you to leave a gift to Epilepsy Research UK if you take up this offer, although we hope you may wish to do so to support our research to benefit future generations. The offer is limited to the writing or amending of simple wills.

Just call us on 020 8747 5024 or email shona@eruk.org.uk and we will arrange for the National Free Wills Network to send you a pack with details of two firms of solicitors local to you taking part in the scheme. You make an appointment with the participating solicitor of your choice who will then draw up your will at no cost to you.

ERUK pays a small fee for any wills written.

For your fundraising pack for Purple Day or National Epilepsy Week please contact info@eruk.org.uk. Tell us about your plans and share your photos on social media by visiting facebook.com/EpilepsyResearchUK or tweeting @EpilepsyRUK.

If you would like to join our team of card shop volunteers next Christmas, or can help get our cards stocked in your local charity card shop, please email shona@ eruk.org.uk.

We’ve already started our regional ‘Meet a Researcher’ series with evenings in Leeds and Newcastle. These great events give you the opportunity to hear first-hand from some of our funded researchers about the work that they have been doing – research you have helped to fund – and us the chance to meet more of our supporters

Raise money for ERUK by simply shopping, searching or selling online.

HOW TO GET INVOLVED

Just use the websites below and donations will automatically be generated for us at no cost to you.

Use our direct link for Amazon via our website and we will receive 5% of the value of all eligible purchases

There are many different events available on our website for which we have guaranteed entry including: Great North Run, Thames Bridge Trek, Great Manchester Run, Great Bristol Run, Edinburgh Marathon, Thames Path Challenge, Royal Parks Foundation Half Marathon, London to Brighton Challenge, British 10K London Run, London 10,000, Leeds Half Marathon, Big Fun Run and the Dog Jog! You can sign up to any event which is local to you too, and just get in touch for your ERUK fundraising pack and running vest or t-shirt.

Your sponsorship really does make a difference to the research that we are able to fund and we really do appreciate all the commitment and support from all of our active fundraisers!

Cheering teams Not able to run? We’re looking for cheering volunteers to help us cheer Team ERUK along to the finish line at our events in London, Brighton and Manchester. If you’re able to support us in this way, please get in touch with jo@eruk.org.uk for dates and times available.

in person. We’re planning our next locations so look on our website or sign up for our enewsletter for details as they are announced. If you’d like to add your name to the list when we’re in your area, then please email jo@eruk.org.uk who will let you know once dates are finalised.

No cost fundraising!

Shop online via easyfundraising.org.uk or giveasyoulive.com and we will receive a percentage of what you spend!

“We love the atmosphere, love catching up with the ERUK staff, and most of all love supporting the awesome runners.”

Joyce and Kenny Meads at the London Marathon.

Search online via everyclick.com to generate donations to us every time you search Have a spring clear out and sell unwanted goods online – you can donate all or a percentage of the proceeds to charity.

Giveacar If you own a vehicle that you want to sell or get rid of then do think about donating it to us through Giveacar.

Giveacar arrange free collection, then either sell your car at auction or scrap it at an authorised facility with the proceeds going to charity. Scrap donations raise about £100 for the charity (depending on the price of metal) while auction cars can raise much more. To find out more or arrange donation of a car, visit www. giveacar.co.uk or call 020 7736 4242, quoting Epilepsy Research UK as your preferred charity.

Supermarket charity schemes Visit your local supermarket and see if you can nominate ERUK as the good cause for the month. Every month, charities get selected and receive a share of monies donated. Simply speak to Customer Services in store to find out how you can nominate us.

“My son has epilepsy. I’d like to help, in a small way, to fund research” Sue Erskine

Our 2018 research grant awards will be announced in National Epilepsy Week. You can help us now to fund even more promising research in the future by making a regular monthly gift to Epilepsy Research UK. If you would like to support us with a regular donation, or a single gift, please complete and return the donation form enclosed or donate online at: www.epilepsyresearch.org.uk.

Thank you

13443-ERF-Spring newsletter.indd 1-3

Designed and printed by Eclipse Creative Ltd: 01252 517341 www.eclipse-creative.co.uk

Page 5

Epilepsy Research UK Newsletter

Looking ahead At the end of 2017 we welcomed Angela Geer as interim Chief Executive of Epilepsy Research UK following the departure of Mike Rich. We thank Mike for his time with the charity and wish him well with his future plans.

Angela is a former Chief Executive of Epilepsy Society and brings with her a wealth of experience in leadership roles in the health, social care and education sectors.

PO Box 3004, London W4 4XT t: 020 8747 5024 e: info@eruk.org.uk w: www.epilepsyresearch.org.uk • Registered charity number: 1100394

transforming lives through research

focus

Christmas cards

How we select the best research projects to fund At Epilepsy Research UK, we identify the best research to support and provide those scientists and clinicians with the funds to turn their ideas into reality. We look for innovative research questions, of the highest scientific merit, that have the greatest potential for making a real difference to patients’ lives. Our funding is open to researchers affiliated to an academic or medical institution anywhere in the UK. Through a competitive annual grant round we offer three types of research grant:

We are pleased to share the exciting news that Epilepsy Research UK will be the featured charity of the BBC Radio 4 Appeal on 25th March, and delighted that long-standing ERUK supporter Nick Christian, and his daughter Rachel, are presenting the appeal for us. Please encourage all your family and friends to listen in on 25 March (full broadcast times on p2 inside), and help us make the appeal a resounding success.

• Project grants (up to £150,000) to support a top-quality research project lasting a maximum of three years

Our Scientific Advisory Committee (SAC) met in the autumn and shortlisted twenty-seven research proposals to be considered for funding. Their final decisions will be announced in May during National Epilepsy Week. See right to read about how the SAC select which research to fund.

Our Scientific Advisory Committee

Your generous donations, fundraising activities, and the proceeds of the Radio 4 Appeal, will support our annual research grant round. With your help we’ll look to fund as many promising research projects as possible, research that will bring hope of change for people with epilepsy. Thank you for your support.

See page 2 to find out more about our BBC Radio 4 Appeal on 25 March.

Spring 2018

• Fellowship awards (up to £250,000) to bring exceptional young scientists into the field of epilepsy research • Pilot grants (up to £30,000) to support, for up to two years, exciting pilot or start-up studies that have the potential to develop into ground-breaking research

The grant selection process is carried out by our Scientific Advisory Committee (SAC) which advises the charity on all scientific matters.

The SAC consists of eight epilepsy researchers from a variety of scientific and clinical backgrounds, and two lay people with strong links to epilepsy. They use a two-stage process to evaluate the project and fellowship research proposals (with a single-stage process for the pilot grants), before making the final decision about which applications to fund. Along with evaluating the applications themselves, the SAC also call on the expertise of independent specialist researchers around the world (a process known as peer review).

The current Chair of the SAC is Professor Bruno Frenguelli of the University of Warwick. Bruno has been a recipient of ERUK funding and has been a member of the SAC since 2012, before being elected as Chair in 2017. His main epilepsy interests revolve around the actions of a brain chemical called adenosine that is released during epileptic seizures and helps to switch seizures off. The current list of SAC members can be found here: www.epilepsyresearch.org.uk/ research-scientists/sac-membership/

transforming lives through research

The grant awarding process A call for research proposals is advertised in July, for submission of preliminary applications in September. All applications received are independently scored by each member of the SAC. They are then discussed at the SAC meeting in November, and the most promising project and fellowship proposals are invited to submit a more in-depth proposal in January.

These full applications are then sent for peer review by two to three independent, external reviewers before being rigorously reviewed and independently scored by the SAC members.

Shortlisted fellowship candidates are also interviewed in person by three members of the SAC. The smaller pilot grants, follow a simpler single-stage application process, and the more promising are sent to one external reviewer.

Among the many questions the SAC need to consider are: • Is the question being asked worth answering?

• Are the investigations proposed the best way to find an answer to the question?

• Do the applicants have the necessary expertise to successfully complete the project?

• Is the proposal value for money?

• Which proposals have the greatest potential for patient benefit?

Throughout the selection process members of the SAC follow a strict conflict of interest procedure to ensure they are not involved in any assessment or decision-making process involving applicants from their own institution, or someone they have previously collaborated with or know personally. Should there be a conflict the SAC member is not given access to the application or the reviews, and they excuse themselves from the meeting for the duration of the discussion.

At their final meeting in March the SAC discuss the applications in the context of their own opinions, the external reviews and, for fellowships, the views of the interview panel members. After this rigorous assessment the shortlisted proposals are scored and decisions are made as to which projects to recommend to the Trustees for funding.

Each year we receive approximately 60 applications, shortlist about one-third of these, and finally award six to eight grants. The 2018 grant awards will be announced in May during National Epilepsy Week.

Page 1 12/03/2018 10:14

UK International League Against Epilepsy annual conference 2017 Nick and Rachel Christian step into the BBC limelight

There was a fantastic turnout at the UK ILAE annual conference in Leeds in October last year, and the location of our exhibition stand allowed us to engage with more epilepsy researchers and clinicians than ever before. Delegates were treated to some excellent presentations, which shared the latest advances in a wide range of epilepsy fields. These included: the appearance of seizures in different age groups; metabolic disorders and epilepsy; epilepsy and pregnancy; more targeted epilepsy treatments; and psychosocial outcomes of epilepsy surgery.

It was a really worthwhile meeting and it was very encouraging to see researchers discussing new collaborative opportunities.

Neurobiology of epilepsy and its clinical relevance prize Long-standing supporter Nick Christian, and his teenage daughter Rachel will be talking about the impact of surgery on Rachel’s epilepsy and explaining the work we do when they present the BBC Radio 4 Charity Appeal on Sunday 25th March at 7.54am and 9.26pm, and on Thursday 29th March at 3.27pm.

For a number of years, Epilepsy Research UK has co-hosted with the UK ILAE a basic science session at the conference - a competition for a £500 prize, generously supported by ICAP.

This is open to early-stage researchers who are studying epilepsy at a molecular level, in order to understand the mechanisms that underlie the condition. This type of work, known as ‘basic science’ (although it is far from basic!), is fundamental to the development of new epilepsy treatments, and one of the aims of the competition is to encourage young researchers into the field. Shortlisted applicants must present, in ten minutes, their latest findings and explain how it stands to benefit people with epilepsy.

The winner of the ‘Neurobiology of epilepsy and its clinical relevance’ prize for 2017 was Dr Andreas Lieb, from University College London.

His talk, entitled ‘Closed-loop gene therapy for intractable focal epilepsy’, explained a potential future gene therapy that can detect and block seizures at a particular stage. We would like to congratulate Dr Lieb on his achievement and we will follow the progress of his work with great interest.

Dr Andreas Lieb (right), with Prof Matthew Walker (left)

Rachel was diagnosed with epilepsy at the age of 3 and put on medication which caused unpleasant side effects and didn’t stop her seizures. However, at the age of 7 she underwent ground-breaking brain surgery. The operation transformed her life.

As Rachel herself says: “When I woke up after the operation, I felt like a new person once the headache disappeared! Before I had struggled at school. I was quiet and lethargic and needed constant help and support.

I was always trying to catch up but now I am doing really well. I’ve come off all medication and I haven’t had a seizure since the operation.”

Rachel’s surgery was only possible because of research partly funded by Epilepsy Research UK which has led to advances in neuroimaging and surgical techniques. But not everyone with epilepsy is as lucky as Rachel, and not everyone is suitable for surgery.

So please listen in to the appeal and donate whatever you can to Epilepsy Research UK so that we can fund more research that will help people affected by this debilitating condition.

Tune in on Radio 4 on Sunday 25th March or Thursday 29th March, listen again on the BBC Radio 4 website if you miss it, or visit the Radio 4 Appeal page on our website: www.epilepsyresearch.org.uk

Allscott AFC’s 3 Peaks Challenge

Francesca Turauskis walking the Camino de Santiago

Members of Allscott AFC completed a Three Peaks Challenge and held a memorial football match for team mate Harry Hall raising over £2,530 in his memory. Our thanks go to all involved for their generous support.

Last summer Francesca went on a solo hike along the Camino de Santiago in Spain – a walk of 500 miles. Francesca was diagnosed with epilepsy in her mid-twenties, some four years after her first seizure. She views her diagnosis as the best thing that could have happened as with medication controlling her seizures she can live an independent life.

Talking about her hike along the Camino Francesca says, “My epilepsy meant that I had to take a few precautions, have the right travel insurance and enough medication to last the full length of my trip. And I had a little tag on my bag saying, “I have epilepsy” and the Spanish, “tengo epilepsia”. (I was told this made me look like Paddington Bear!)”

Thames Bridge Trek Simon and Caroline Redfern took part in the Thames Bridge Trek raising money for their daughter Amanda’s memorial fund. This is the latest of many challenges that the Redferns have taken on to raise money for ERUK and they have just signed up to do the event again in 2018!

Huge thanks once again to everyone involved in the 2017 Great Yorkshire Bike Ride. John Taylorson MBE has nominated ERUK as a beneficiary of the ride for many years and we were delighted to receive £8474 from the event.

We couldn’t do this without the support of John Boulton from the Wetherby Lions who organises the marshals, and the wonderful ERUK volunteers who give up their morning to marshal the cyclists along the course. All the riders raise money for charity and it’s a fantastic event, one we’re proud to be associated with. Our sincere thanks to everyone involved.

New Year’s Day Dip Three generations of the Graham and Smith families, along with many hardy friends and supporters braved the waters of Loch Goil on a wet and cold New Year’s Day for their annual Andrew Ross Graham Ne’er Day Dip raising £520 for Andrew’s memorial fund. Thank you all for your impressive fortitude and generosity!

“A lot of people asked me if I was scared and told me that I was brave to walk alone. The further I walked and the more I talked, the stronger I became and the more people began to see what a person with epilepsy can do. Over half of us in the UK are living seizure free. And yes, it sometimes worries me that my seizures could return at any time.

But that is the case whether I am at home or abroad – so why not walk across Spain in the meantime?”

Charity in the workplace Many of our supporters receive extraordinary levels of support in the workplace from colleagues and employers, reflecting the impact of epilepsy on their life.

Companies we’ve received support from recently include:

It was with great sadness that we heard of the death in January 2018 of Isabel Little, founding Administrator of the Epilepsy Research Foundation.

Isabel developed a life-long determination to contribute to improvements in the understanding and treatment of epilepsy after taking up her first job at the British Epilepsy Association (BEA). Before taking time away from work to start her family she also worked for the International Bureau for Epilepsy, helping organise conferences and getting to know epilepsy professionals around the world. Many years later the founding trustees of Epilepsy Research Foundation turned to Isabel to run their newly established charity.

Isabel was the Administrator, later Executive Director, of the Epilepsy Research Foundation from 1991 through to her

Thank you to all who have been fundraising for us at home and in your local communities – it is all your efforts that make our research possible!

Great Yorkshire Bike Ride

Remembering Isabel Little

transforming lives through research 13443-ERF-Spring newsletter.indd 4-6

FUNDRAISERS IN ACTION

Bridge McFarland, Grimsby and Louth offices, where colleagues of Rachel Abba are supporting her fundraising activities in memory of her son Robert. Activities so far include a charity cycle ride, skydive and Halloween quiz.

Running in memory of Caspar Gaze retirement in October 2001. With the support of Lord Hastings as Chairman (and later his successor Prof Alan Richens), Isabel set up the Epilepsy Research Foundation, initially running the charity alone from a desk in her study at home. She had immense energy and passion for improving outcomes for people with epilepsy, and rapidly built a successful and dynamic small charity for epilepsy research.

Isabel leaves a lasting legacy in the continuing work of Epilepsy Research UK, and is remembered with much affection and gratitude for her role in championing the need for increased research into epilepsy.

Page 2

Poppy, MiIlly, Beeze and Justin Gaze, and Poppy’s boyfriend Rian Kealey, have been running in memory of their nephew and cousin Caspar Gaze who very sadly died in April 2017.

Milly took on the Sydney Marathon in September, and Beeze, Justin and Rian ran the Oxford Half Marathon in October. Unfortunately Poppy broke her foot in training just before the Half Marathon so was unable to race, but did sterling work cheering on the rest of the team from the sidelines!

MacDonald Martin who have selected ERUK as their charity of the year to support employee Ricky Osborn’s fundraising in memory of his son Oliver. A monthly challenge is set for the team and a generous company donation made to ERUK each time the challenge is met. Director Andy Trafford welcomed Prof Mark Cunningham to their offices recently to talk to the team and receive the first donation cheque.

Danisco UK where staff fundraised throughout the autumn and run-up to Christmas to support staff member Andrew Harker following the loss of his son Tom, with donations from staff and the company raising over £1,500.

Through the amazing generosity of family and friends, they have raised a phenomenal amount of over £22,000 from these two running events alone for Caspar’s memorial fund.

transforming lives through research

Page 3

The National Federation of Roofing Contractors, South Western Region who are supporting us as their charity of the year, through their AGM at Chepstow Racecourse and their annual dinner dance in Torquay.

Premier Farnell who once again held their fantastic annual golf day in June 2017, organised by Tracey Hall and the Farnell team, raising over £10,000 for ERUK. A2 Dominion who support Catherine Booth’s regular community fundraising activities with matched donations.

transforming lives through research

Our thanks go to all who support us in their workplace, whether for a day, a month or a year!

Page 4 12/03/2018 10:15

UK International League Against Epilepsy annual conference 2017 Nick and Rachel Christian step into the BBC limelight

There was a fantastic turnout at the UK ILAE annual conference in Leeds in October last year, and the location of our exhibition stand allowed us to engage with more epilepsy researchers and clinicians than ever before. Delegates were treated to some excellent presentations, which shared the latest advances in a wide range of epilepsy fields. These included: the appearance of seizures in different age groups; metabolic disorders and epilepsy; epilepsy and pregnancy; more targeted epilepsy treatments; and psychosocial outcomes of epilepsy surgery.

It was a really worthwhile meeting and it was very encouraging to see researchers discussing new collaborative opportunities.

Neurobiology of epilepsy and its clinical relevance prize Long-standing supporter Nick Christian, and his teenage daughter Rachel will be talking about the impact of surgery on Rachel’s epilepsy and explaining the work we do when they present the BBC Radio 4 Charity Appeal on Sunday 25th March at 7.54am and 9.26pm, and on Thursday 29th March at 3.27pm.

For a number of years, Epilepsy Research UK has co-hosted with the UK ILAE a basic science session at the conference - a competition for a £500 prize, generously supported by ICAP.

This is open to early-stage researchers who are studying epilepsy at a molecular level, in order to understand the mechanisms that underlie the condition. This type of work, known as ‘basic science’ (although it is far from basic!), is fundamental to the development of new epilepsy treatments, and one of the aims of the competition is to encourage young researchers into the field. Shortlisted applicants must present, in ten minutes, their latest findings and explain how it stands to benefit people with epilepsy.

The winner of the ‘Neurobiology of epilepsy and its clinical relevance’ prize for 2017 was Dr Andreas Lieb, from University College London.

His talk, entitled ‘Closed-loop gene therapy for intractable focal epilepsy’, explained a potential future gene therapy that can detect and block seizures at a particular stage. We would like to congratulate Dr Lieb on his achievement and we will follow the progress of his work with great interest.

Dr Andreas Lieb (right), with Prof Matthew Walker (left)

Rachel was diagnosed with epilepsy at the age of 3 and put on medication which caused unpleasant side effects and didn’t stop her seizures. However, at the age of 7 she underwent ground-breaking brain surgery. The operation transformed her life.

As Rachel herself says: “When I woke up after the operation, I felt like a new person once the headache disappeared! Before I had struggled at school. I was quiet and lethargic and needed constant help and support.

I was always trying to catch up but now I am doing really well. I’ve come off all medication and I haven’t had a seizure since the operation.”

Rachel’s surgery was only possible because of research partly funded by Epilepsy Research UK which has led to advances in neuroimaging and surgical techniques. But not everyone with epilepsy is as lucky as Rachel, and not everyone is suitable for surgery.

So please listen in to the appeal and donate whatever you can to Epilepsy Research UK so that we can fund more research that will help people affected by this debilitating condition.

Tune in on Radio 4 on Sunday 25th March or Thursday 29th March, listen again on the BBC Radio 4 website if you miss it, or visit the Radio 4 Appeal page on our website: www.epilepsyresearch.org.uk

Allscott AFC’s 3 Peaks Challenge

Francesca Turauskis walking the Camino de Santiago

Members of Allscott AFC completed a Three Peaks Challenge and held a memorial football match for team mate Harry Hall raising over £2,530 in his memory. Our thanks go to all involved for their generous support.

Last summer Francesca went on a solo hike along the Camino de Santiago in Spain – a walk of 500 miles. Francesca was diagnosed with epilepsy in her mid-twenties, some four years after her first seizure. She views her diagnosis as the best thing that could have happened as with medication controlling her seizures she can live an independent life.

Talking about her hike along the Camino Francesca says, “My epilepsy meant that I had to take a few precautions, have the right travel insurance and enough medication to last the full length of my trip. And I had a little tag on my bag saying, “I have epilepsy” and the Spanish, “tengo epilepsia”. (I was told this made me look like Paddington Bear!)”

Thames Bridge Trek Simon and Caroline Redfern took part in the Thames Bridge Trek raising money for their daughter Amanda’s memorial fund. This is the latest of many challenges that the Redferns have taken on to raise money for ERUK and they have just signed up to do the event again in 2018!

Huge thanks once again to everyone involved in the 2017 Great Yorkshire Bike Ride. John Taylorson MBE has nominated ERUK as a beneficiary of the ride for many years and we were delighted to receive £8474 from the event.

We couldn’t do this without the support of John Boulton from the Wetherby Lions who organises the marshals, and the wonderful ERUK volunteers who give up their morning to marshal the cyclists along the course. All the riders raise money for charity and it’s a fantastic event, one we’re proud to be associated with. Our sincere thanks to everyone involved.

New Year’s Day Dip Three generations of the Graham and Smith families, along with many hardy friends and supporters braved the waters of Loch Goil on a wet and cold New Year’s Day for their annual Andrew Ross Graham Ne’er Day Dip raising £520 for Andrew’s memorial fund. Thank you all for your impressive fortitude and generosity!

“A lot of people asked me if I was scared and told me that I was brave to walk alone. The further I walked and the more I talked, the stronger I became and the more people began to see what a person with epilepsy can do. Over half of us in the UK are living seizure free. And yes, it sometimes worries me that my seizures could return at any time.

But that is the case whether I am at home or abroad – so why not walk across Spain in the meantime?”

Charity in the workplace Many of our supporters receive extraordinary levels of support in the workplace from colleagues and employers, reflecting the impact of epilepsy on their life.

Companies we’ve received support from recently include:

It was with great sadness that we heard of the death in January 2018 of Isabel Little, founding Administrator of the Epilepsy Research Foundation.

Isabel developed a life-long determination to contribute to improvements in the understanding and treatment of epilepsy after taking up her first job at the British Epilepsy Association (BEA). Before taking time away from work to start her family she also worked for the International Bureau for Epilepsy, helping organise conferences and getting to know epilepsy professionals around the world. Many years later the founding trustees of Epilepsy Research Foundation turned to Isabel to run their newly established charity.

Isabel was the Administrator, later Executive Director, of the Epilepsy Research Foundation from 1991 through to her

Thank you to all who have been fundraising for us at home and in your local communities – it is all your efforts that make our research possible!

Great Yorkshire Bike Ride

Remembering Isabel Little

transforming lives through research 13443-ERF-Spring newsletter.indd 4-6

FUNDRAISERS IN ACTION

Bridge McFarland, Grimsby and Louth offices, where colleagues of Rachel Abba are supporting her fundraising activities in memory of her son Robert. Activities so far include a charity cycle ride, skydive and Halloween quiz.

Running in memory of Caspar Gaze retirement in October 2001. With the support of Lord Hastings as Chairman (and later his successor Prof Alan Richens), Isabel set up the Epilepsy Research Foundation, initially running the charity alone from a desk in her study at home. She had immense energy and passion for improving outcomes for people with epilepsy, and rapidly built a successful and dynamic small charity for epilepsy research.

Isabel leaves a lasting legacy in the continuing work of Epilepsy Research UK, and is remembered with much affection and gratitude for her role in championing the need for increased research into epilepsy.

Page 2

Poppy, MiIlly, Beeze and Justin Gaze, and Poppy’s boyfriend Rian Kealey, have been running in memory of their nephew and cousin Caspar Gaze who very sadly died in April 2017.

Milly took on the Sydney Marathon in September, and Beeze, Justin and Rian ran the Oxford Half Marathon in October. Unfortunately Poppy broke her foot in training just before the Half Marathon so was unable to race, but did sterling work cheering on the rest of the team from the sidelines!

MacDonald Martin who have selected ERUK as their charity of the year to support employee Ricky Osborn’s fundraising in memory of his son Oliver. A monthly challenge is set for the team and a generous company donation made to ERUK each time the challenge is met. Director Andy Trafford welcomed Prof Mark Cunningham to their offices recently to talk to the team and receive the first donation cheque.

Danisco UK where staff fundraised throughout the autumn and run-up to Christmas to support staff member Andrew Harker following the loss of his son Tom, with donations from staff and the company raising over £1,500.

Through the amazing generosity of family and friends, they have raised a phenomenal amount of over £22,000 from these two running events alone for Caspar’s memorial fund.

transforming lives through research

Page 3

The National Federation of Roofing Contractors, South Western Region who are supporting us as their charity of the year, through their AGM at Chepstow Racecourse and their annual dinner dance in Torquay.

Premier Farnell who once again held their fantastic annual golf day in June 2017, organised by Tracey Hall and the Farnell team, raising over £10,000 for ERUK. A2 Dominion who support Catherine Booth’s regular community fundraising activities with matched donations.

transforming lives through research

Our thanks go to all who support us in their workplace, whether for a day, a month or a year!

Page 4 12/03/2018 10:15

UK International League Against Epilepsy annual conference 2017 Nick and Rachel Christian step into the BBC limelight

There was a fantastic turnout at the UK ILAE annual conference in Leeds in October last year, and the location of our exhibition stand allowed us to engage with more epilepsy researchers and clinicians than ever before. Delegates were treated to some excellent presentations, which shared the latest advances in a wide range of epilepsy fields. These included: the appearance of seizures in different age groups; metabolic disorders and epilepsy; epilepsy and pregnancy; more targeted epilepsy treatments; and psychosocial outcomes of epilepsy surgery.

It was a really worthwhile meeting and it was very encouraging to see researchers discussing new collaborative opportunities.

Neurobiology of epilepsy and its clinical relevance prize Long-standing supporter Nick Christian, and his teenage daughter Rachel will be talking about the impact of surgery on Rachel’s epilepsy and explaining the work we do when they present the BBC Radio 4 Charity Appeal on Sunday 25th March at 7.54am and 9.26pm, and on Thursday 29th March at 3.27pm.

For a number of years, Epilepsy Research UK has co-hosted with the UK ILAE a basic science session at the conference - a competition for a £500 prize, generously supported by ICAP.

This is open to early-stage researchers who are studying epilepsy at a molecular level, in order to understand the mechanisms that underlie the condition. This type of work, known as ‘basic science’ (although it is far from basic!), is fundamental to the development of new epilepsy treatments, and one of the aims of the competition is to encourage young researchers into the field. Shortlisted applicants must present, in ten minutes, their latest findings and explain how it stands to benefit people with epilepsy.

The winner of the ‘Neurobiology of epilepsy and its clinical relevance’ prize for 2017 was Dr Andreas Lieb, from University College London.

His talk, entitled ‘Closed-loop gene therapy for intractable focal epilepsy’, explained a potential future gene therapy that can detect and block seizures at a particular stage. We would like to congratulate Dr Lieb on his achievement and we will follow the progress of his work with great interest.

Dr Andreas Lieb (right), with Prof Matthew Walker (left)

Rachel was diagnosed with epilepsy at the age of 3 and put on medication which caused unpleasant side effects and didn’t stop her seizures. However, at the age of 7 she underwent ground-breaking brain surgery. The operation transformed her life.

As Rachel herself says: “When I woke up after the operation, I felt like a new person once the headache disappeared! Before I had struggled at school. I was quiet and lethargic and needed constant help and support.

I was always trying to catch up but now I am doing really well. I’ve come off all medication and I haven’t had a seizure since the operation.”

Rachel’s surgery was only possible because of research partly funded by Epilepsy Research UK which has led to advances in neuroimaging and surgical techniques. But not everyone with epilepsy is as lucky as Rachel, and not everyone is suitable for surgery.

So please listen in to the appeal and donate whatever you can to Epilepsy Research UK so that we can fund more research that will help people affected by this debilitating condition.

Tune in on Radio 4 on Sunday 25th March or Thursday 29th March, listen again on the BBC Radio 4 website if you miss it, or visit the Radio 4 Appeal page on our website: www.epilepsyresearch.org.uk

Allscott AFC’s 3 Peaks Challenge

Francesca Turauskis walking the Camino de Santiago

Members of Allscott AFC completed a Three Peaks Challenge and held a memorial football match for team mate Harry Hall raising over £2,530 in his memory. Our thanks go to all involved for their generous support.

Last summer Francesca went on a solo hike along the Camino de Santiago in Spain – a walk of 500 miles. Francesca was diagnosed with epilepsy in her mid-twenties, some four years after her first seizure. She views her diagnosis as the best thing that could have happened as with medication controlling her seizures she can live an independent life.

Talking about her hike along the Camino Francesca says, “My epilepsy meant that I had to take a few precautions, have the right travel insurance and enough medication to last the full length of my trip. And I had a little tag on my bag saying, “I have epilepsy” and the Spanish, “tengo epilepsia”. (I was told this made me look like Paddington Bear!)”

Thames Bridge Trek Simon and Caroline Redfern took part in the Thames Bridge Trek raising money for their daughter Amanda’s memorial fund. This is the latest of many challenges that the Redferns have taken on to raise money for ERUK and they have just signed up to do the event again in 2018!

Huge thanks once again to everyone involved in the 2017 Great Yorkshire Bike Ride. John Taylorson MBE has nominated ERUK as a beneficiary of the ride for many years and we were delighted to receive £8474 from the event.

We couldn’t do this without the support of John Boulton from the Wetherby Lions who organises the marshals, and the wonderful ERUK volunteers who give up their morning to marshal the cyclists along the course. All the riders raise money for charity and it’s a fantastic event, one we’re proud to be associated with. Our sincere thanks to everyone involved.

New Year’s Day Dip Three generations of the Graham and Smith families, along with many hardy friends and supporters braved the waters of Loch Goil on a wet and cold New Year’s Day for their annual Andrew Ross Graham Ne’er Day Dip raising £520 for Andrew’s memorial fund. Thank you all for your impressive fortitude and generosity!

“A lot of people asked me if I was scared and told me that I was brave to walk alone. The further I walked and the more I talked, the stronger I became and the more people began to see what a person with epilepsy can do. Over half of us in the UK are living seizure free. And yes, it sometimes worries me that my seizures could return at any time.

But that is the case whether I am at home or abroad – so why not walk across Spain in the meantime?”

Charity in the workplace Many of our supporters receive extraordinary levels of support in the workplace from colleagues and employers, reflecting the impact of epilepsy on their life.

Companies we’ve received support from recently include:

It was with great sadness that we heard of the death in January 2018 of Isabel Little, founding Administrator of the Epilepsy Research Foundation.

Isabel developed a life-long determination to contribute to improvements in the understanding and treatment of epilepsy after taking up her first job at the British Epilepsy Association (BEA). Before taking time away from work to start her family she also worked for the International Bureau for Epilepsy, helping organise conferences and getting to know epilepsy professionals around the world. Many years later the founding trustees of Epilepsy Research Foundation turned to Isabel to run their newly established charity.

Isabel was the Administrator, later Executive Director, of the Epilepsy Research Foundation from 1991 through to her

Thank you to all who have been fundraising for us at home and in your local communities – it is all your efforts that make our research possible!

Great Yorkshire Bike Ride

Remembering Isabel Little

transforming lives through research 13443-ERF-Spring newsletter.indd 4-6

FUNDRAISERS IN ACTION

Bridge McFarland, Grimsby and Louth offices, where colleagues of Rachel Abba are supporting her fundraising activities in memory of her son Robert. Activities so far include a charity cycle ride, skydive and Halloween quiz.

Running in memory of Caspar Gaze retirement in October 2001. With the support of Lord Hastings as Chairman (and later his successor Prof Alan Richens), Isabel set up the Epilepsy Research Foundation, initially running the charity alone from a desk in her study at home. She had immense energy and passion for improving outcomes for people with epilepsy, and rapidly built a successful and dynamic small charity for epilepsy research.

Isabel leaves a lasting legacy in the continuing work of Epilepsy Research UK, and is remembered with much affection and gratitude for her role in championing the need for increased research into epilepsy.

Page 2

Poppy, MiIlly, Beeze and Justin Gaze, and Poppy’s boyfriend Rian Kealey, have been running in memory of their nephew and cousin Caspar Gaze who very sadly died in April 2017.

Milly took on the Sydney Marathon in September, and Beeze, Justin and Rian ran the Oxford Half Marathon in October. Unfortunately Poppy broke her foot in training just before the Half Marathon so was unable to race, but did sterling work cheering on the rest of the team from the sidelines!

MacDonald Martin who have selected ERUK as their charity of the year to support employee Ricky Osborn’s fundraising in memory of his son Oliver. A monthly challenge is set for the team and a generous company donation made to ERUK each time the challenge is met. Director Andy Trafford welcomed Prof Mark Cunningham to their offices recently to talk to the team and receive the first donation cheque.

Danisco UK where staff fundraised throughout the autumn and run-up to Christmas to support staff member Andrew Harker following the loss of his son Tom, with donations from staff and the company raising over £1,500.

Through the amazing generosity of family and friends, they have raised a phenomenal amount of over £22,000 from these two running events alone for Caspar’s memorial fund.

transforming lives through research

Page 3

The National Federation of Roofing Contractors, South Western Region who are supporting us as their charity of the year, through their AGM at Chepstow Racecourse and their annual dinner dance in Torquay.

Premier Farnell who once again held their fantastic annual golf day in June 2017, organised by Tracey Hall and the Farnell team, raising over £10,000 for ERUK. A2 Dominion who support Catherine Booth’s regular community fundraising activities with matched donations.

transforming lives through research

Our thanks go to all who support us in their workplace, whether for a day, a month or a year!

Page 4 12/03/2018 10:15

PURPLE DAY AND NATIONAL EPILEPSY WEEK With Purple Day approaching on 26 March and National Epilepsy Week from 13 – 20 May, we’re looking forward to hearing all about your plans to raise funds and awareness through these two events.

Our website will be going purple for the day on 26 March and it’s not too late to ‘go purple’ to raise awareness of epilepsy.

Do send us your stories and photos after the event so we can share these on our social media too.

During National Epilepsy Week we’ll be announcing our latest grant awards at our annual London reception and asking you to join in with our fundraising activities.

Whether you hold a coffee morning, bake sale, or dress down day in the office or school, there are lots of ways you can show your support. Get in touch with us for your fundraising pack or to talk through any ideas.

It is only through research that we will bring about real benefits for those living with epilepsy and your help is vital to achieving this.

Regional ‘Meet a Researcher’ evenings - open to all!

Many thanks to all who supported our research this Christmas by buying our cards, organising card sales, and volunteering in the Cards for Good Causes and other charity Christmas card shops around the country.

Thanks to our membership of the National Free Wills Network we can offer you the opportunity to have your will written, or an existing will changed, by a local solicitor.

There is no obligation on you to leave a gift to Epilepsy Research UK if you take up this offer, although we hope you may wish to do so to support our research to benefit future generations. The offer is limited to the writing or amending of simple wills.

Just call us on 020 8747 5024 or email shona@eruk.org.uk and we will arrange for the National Free Wills Network to send you a pack with details of two firms of solicitors local to you taking part in the scheme. You make an appointment with the participating solicitor of your choice who will then draw up your will at no cost to you.

ERUK pays a small fee for any wills written.

For your fundraising pack for Purple Day or National Epilepsy Week please contact info@eruk.org.uk. Tell us about your plans and share your photos on social media by visiting facebook.com/EpilepsyResearchUK or tweeting @EpilepsyRUK.

If you would like to join our team of card shop volunteers next Christmas, or can help get our cards stocked in your local charity card shop, please email shona@ eruk.org.uk.

We’ve already started our regional ‘Meet a Researcher’ series with evenings in Leeds and Newcastle. These great events give you the opportunity to hear first-hand from some of our funded researchers about the work that they have been doing – research you have helped to fund – and us the chance to meet more of our supporters

Raise money for ERUK by simply shopping, searching or selling online.

HOW TO GET INVOLVED

Just use the websites below and donations will automatically be generated for us at no cost to you.

Use our direct link for Amazon via our website and we will receive 5% of the value of all eligible purchases

There are many different events available on our website for which we have guaranteed entry including: Great North Run, Thames Bridge Trek, Great Manchester Run, Great Bristol Run, Edinburgh Marathon, Thames Path Challenge, Royal Parks Foundation Half Marathon, London to Brighton Challenge, British 10K London Run, London 10,000, Leeds Half Marathon, Big Fun Run and the Dog Jog! You can sign up to any event which is local to you too, and just get in touch for your ERUK fundraising pack and running vest or t-shirt.

Your sponsorship really does make a difference to the research that we are able to fund and we really do appreciate all the commitment and support from all of our active fundraisers!

Cheering teams Not able to run? We’re looking for cheering volunteers to help us cheer Team ERUK along to the finish line at our events in London, Brighton and Manchester. If you’re able to support us in this way, please get in touch with jo@eruk.org.uk for dates and times available.

in person. We’re planning our next locations so look on our website or sign up for our enewsletter for details as they are announced. If you’d like to add your name to the list when we’re in your area, then please email jo@eruk.org.uk who will let you know once dates are finalised.

No cost fundraising!

Shop online via easyfundraising.org.uk or giveasyoulive.com and we will receive a percentage of what you spend!

“We love the atmosphere, love catching up with the ERUK staff, and most of all love supporting the awesome runners.”

Joyce and Kenny Meads at the London Marathon.

Search online via everyclick.com to generate donations to us every time you search Have a spring clear out and sell unwanted goods online – you can donate all or a percentage of the proceeds to charity.

Giveacar If you own a vehicle that you want to sell or get rid of then do think about donating it to us through Giveacar.

Giveacar arrange free collection, then either sell your car at auction or scrap it at an authorised facility with the proceeds going to charity. Scrap donations raise about £100 for the charity (depending on the price of metal) while auction cars can raise much more. To find out more or arrange donation of a car, visit www. giveacar.co.uk or call 020 7736 4242, quoting Epilepsy Research UK as your preferred charity.

Supermarket charity schemes Visit your local supermarket and see if you can nominate ERUK as the good cause for the month. Every month, charities get selected and receive a share of monies donated. Simply speak to Customer Services in store to find out how you can nominate us.

“My son has epilepsy. I’d like to help, in a small way, to fund research” Sue Erskine

Our 2018 research grant awards will be announced in National Epilepsy Week. You can help us now to fund even more promising research in the future by making a regular monthly gift to Epilepsy Research UK. If you would like to support us with a regular donation, or a single gift, please complete and return the donation form enclosed or donate online at: www.epilepsyresearch.org.uk.

Thank you

13443-ERF-Spring newsletter.indd 1-3

Designed and printed by Eclipse Creative Ltd: 01252 517341 www.eclipse-creative.co.uk

Page 5

Epilepsy Research UK Newsletter

Looking ahead At the end of 2017 we welcomed Angela Geer as interim Chief Executive of Epilepsy Research UK following the departure of Mike Rich. We thank Mike for his time with the charity and wish him well with his future plans.

Angela is a former Chief Executive of Epilepsy Society and brings with her a wealth of experience in leadership roles in the health, social care and education sectors.

PO Box 3004, London W4 4XT t: 020 8747 5024 e: info@eruk.org.uk w: www.epilepsyresearch.org.uk • Registered charity number: 1100394

transforming lives through research

focus

Christmas cards

How we select the best research projects to fund At Epilepsy Research UK, we identify the best research to support and provide those scientists and clinicians with the funds to turn their ideas into reality. We look for innovative research questions, of the highest scientific merit, that have the greatest potential for making a real difference to patients’ lives. Our funding is open to researchers affiliated to an academic or medical institution anywhere in the UK. Through a competitive annual grant round we offer three types of research grant:

We are pleased to share the exciting news that Epilepsy Research UK will be the featured charity of the BBC Radio 4 Appeal on 25th March, and delighted that long-standing ERUK supporter Nick Christian, and his daughter Rachel, are presenting the appeal for us. Please encourage all your family and friends to listen in on 25 March (full broadcast times on p2 inside), and help us make the appeal a resounding success.

• Project grants (up to £150,000) to support a top-quality research project lasting a maximum of three years

Our Scientific Advisory Committee (SAC) met in the autumn and shortlisted twenty-seven research proposals to be considered for funding. Their final decisions will be announced in May during National Epilepsy Week. See right to read about how the SAC select which research to fund.

Our Scientific Advisory Committee

Your generous donations, fundraising activities, and the proceeds of the Radio 4 Appeal, will support our annual research grant round. With your help we’ll look to fund as many promising research projects as possible, research that will bring hope of change for people with epilepsy. Thank you for your support.

See page 2 to find out more about our BBC Radio 4 Appeal on 25 March.

Spring 2018

• Fellowship awards (up to £250,000) to bring exceptional young scientists into the field of epilepsy research • Pilot grants (up to £30,000) to support, for up to two years, exciting pilot or start-up studies that have the potential to develop into ground-breaking research

The grant selection process is carried out by our Scientific Advisory Committee (SAC) which advises the charity on all scientific matters.

The SAC consists of eight epilepsy researchers from a variety of scientific and clinical backgrounds, and two lay people with strong links to epilepsy. They use a two-stage process to evaluate the project and fellowship research proposals (with a single-stage process for the pilot grants), before making the final decision about which applications to fund. Along with evaluating the applications themselves, the SAC also call on the expertise of independent specialist researchers around the world (a process known as peer review).

The current Chair of the SAC is Professor Bruno Frenguelli of the University of Warwick. Bruno has been a recipient of ERUK funding and has been a member of the SAC since 2012, before being elected as Chair in 2017. His main epilepsy interests revolve around the actions of a brain chemical called adenosine that is released during epileptic seizures and helps to switch seizures off. The current list of SAC members can be found here: www.epilepsyresearch.org.uk/ research-scientists/sac-membership/

transforming lives through research

The grant awarding process A call for research proposals is advertised in July, for submission of preliminary applications in September. All applications received are independently scored by each member of the SAC. They are then discussed at the SAC meeting in November, and the most promising project and fellowship proposals are invited to submit a more in-depth proposal in January.

These full applications are then sent for peer review by two to three independent, external reviewers before being rigorously reviewed and independently scored by the SAC members.

Shortlisted fellowship candidates are also interviewed in person by three members of the SAC. The smaller pilot grants, follow a simpler single-stage application process, and the more promising are sent to one external reviewer.

Among the many questions the SAC need to consider are: • Is the question being asked worth answering?

• Are the investigations proposed the best way to find an answer to the question?

• Do the applicants have the necessary expertise to successfully complete the project?

• Is the proposal value for money?

• Which proposals have the greatest potential for patient benefit?

Throughout the selection process members of the SAC follow a strict conflict of interest procedure to ensure they are not involved in any assessment or decision-making process involving applicants from their own institution, or someone they have previously collaborated with or know personally. Should there be a conflict the SAC member is not given access to the application or the reviews, and they excuse themselves from the meeting for the duration of the discussion.

At their final meeting in March the SAC discuss the applications in the context of their own opinions, the external reviews and, for fellowships, the views of the interview panel members. After this rigorous assessment the shortlisted proposals are scored and decisions are made as to which projects to recommend to the Trustees for funding.

Each year we receive approximately 60 applications, shortlist about one-third of these, and finally award six to eight grants. The 2018 grant awards will be announced in May during National Epilepsy Week.

Page 1 12/03/2018 10:14

PURPLE DAY AND NATIONAL EPILEPSY WEEK With Purple Day approaching on 26 March and National Epilepsy Week from 13 – 20 May, we’re looking forward to hearing all about your plans to raise funds and awareness through these two events.

Our website will be going purple for the day on 26 March and it’s not too late to ‘go purple’ to raise awareness of epilepsy.

Do send us your stories and photos after the event so we can share these on our social media too.

During National Epilepsy Week we’ll be announcing our latest grant awards at our annual London reception and asking you to join in with our fundraising activities.

Whether you hold a coffee morning, bake sale, or dress down day in the office or school, there are lots of ways you can show your support. Get in touch with us for your fundraising pack or to talk through any ideas.

It is only through research that we will bring about real benefits for those living with epilepsy and your help is vital to achieving this.

Regional ‘Meet a Researcher’ evenings - open to all!

Many thanks to all who supported our research this Christmas by buying our cards, organising card sales, and volunteering in the Cards for Good Causes and other charity Christmas card shops around the country.

Thanks to our membership of the National Free Wills Network we can offer you the opportunity to have your will written, or an existing will changed, by a local solicitor.

There is no obligation on you to leave a gift to Epilepsy Research UK if you take up this offer, although we hope you may wish to do so to support our research to benefit future generations. The offer is limited to the writing or amending of simple wills.

Just call us on 020 8747 5024 or email shona@eruk.org.uk and we will arrange for the National Free Wills Network to send you a pack with details of two firms of solicitors local to you taking part in the scheme. You make an appointment with the participating solicitor of your choice who will then draw up your will at no cost to you.

ERUK pays a small fee for any wills written.

For your fundraising pack for Purple Day or National Epilepsy Week please contact info@eruk.org.uk. Tell us about your plans and share your photos on social media by visiting facebook.com/EpilepsyResearchUK or tweeting @EpilepsyRUK.

If you would like to join our team of card shop volunteers next Christmas, or can help get our cards stocked in your local charity card shop, please email shona@ eruk.org.uk.

We’ve already started our regional ‘Meet a Researcher’ series with evenings in Leeds and Newcastle. These great events give you the opportunity to hear first-hand from some of our funded researchers about the work that they have been doing – research you have helped to fund – and us the chance to meet more of our supporters

Raise money for ERUK by simply shopping, searching or selling online.

HOW TO GET INVOLVED

Just use the websites below and donations will automatically be generated for us at no cost to you.

Use our direct link for Amazon via our website and we will receive 5% of the value of all eligible purchases

There are many different events available on our website for which we have guaranteed entry including: Great North Run, Thames Bridge Trek, Great Manchester Run, Great Bristol Run, Edinburgh Marathon, Thames Path Challenge, Royal Parks Foundation Half Marathon, London to Brighton Challenge, British 10K London Run, London 10,000, Leeds Half Marathon, Big Fun Run and the Dog Jog! You can sign up to any event which is local to you too, and just get in touch for your ERUK fundraising pack and running vest or t-shirt.

Your sponsorship really does make a difference to the research that we are able to fund and we really do appreciate all the commitment and support from all of our active fundraisers!

Cheering teams Not able to run? We’re looking for cheering volunteers to help us cheer Team ERUK along to the finish line at our events in London, Brighton and Manchester. If you’re able to support us in this way, please get in touch with jo@eruk.org.uk for dates and times available.

in person. We’re planning our next locations so look on our website or sign up for our enewsletter for details as they are announced. If you’d like to add your name to the list when we’re in your area, then please email jo@eruk.org.uk who will let you know once dates are finalised.

No cost fundraising!

Shop online via easyfundraising.org.uk or giveasyoulive.com and we will receive a percentage of what you spend!

“We love the atmosphere, love catching up with the ERUK staff, and most of all love supporting the awesome runners.”

Joyce and Kenny Meads at the London Marathon.

Search online via everyclick.com to generate donations to us every time you search Have a spring clear out and sell unwanted goods online – you can donate all or a percentage of the proceeds to charity.

Giveacar If you own a vehicle that you want to sell or get rid of then do think about donating it to us through Giveacar.

Giveacar arrange free collection, then either sell your car at auction or scrap it at an authorised facility with the proceeds going to charity. Scrap donations raise about £100 for the charity (depending on the price of metal) while auction cars can raise much more. To find out more or arrange donation of a car, visit www. giveacar.co.uk or call 020 7736 4242, quoting Epilepsy Research UK as your preferred charity.

Supermarket charity schemes Visit your local supermarket and see if you can nominate ERUK as the good cause for the month. Every month, charities get selected and receive a share of monies donated. Simply speak to Customer Services in store to find out how you can nominate us.

“My son has epilepsy. I’d like to help, in a small way, to fund research” Sue Erskine

Our 2018 research grant awards will be announced in National Epilepsy Week. You can help us now to fund even more promising research in the future by making a regular monthly gift to Epilepsy Research UK. If you would like to support us with a regular donation, or a single gift, please complete and return the donation form enclosed or donate online at: www.epilepsyresearch.org.uk.

Thank you

13443-ERF-Spring newsletter.indd 1-3

Designed and printed by Eclipse Creative Ltd: 01252 517341 www.eclipse-creative.co.uk

Page 5

Epilepsy Research UK Newsletter

Looking ahead At the end of 2017 we welcomed Angela Geer as interim Chief Executive of Epilepsy Research UK following the departure of Mike Rich. We thank Mike for his time with the charity and wish him well with his future plans.

Angela is a former Chief Executive of Epilepsy Society and brings with her a wealth of experience in leadership roles in the health, social care and education sectors.

PO Box 3004, London W4 4XT t: 020 8747 5024 e: info@eruk.org.uk w: www.epilepsyresearch.org.uk • Registered charity number: 1100394

transforming lives through research

focus

Christmas cards

How we select the best research projects to fund At Epilepsy Research UK, we identify the best research to support and provide those scientists and clinicians with the funds to turn their ideas into reality. We look for innovative research questions, of the highest scientific merit, that have the greatest potential for making a real difference to patients’ lives. Our funding is open to researchers affiliated to an academic or medical institution anywhere in the UK. Through a competitive annual grant round we offer three types of research grant:

We are pleased to share the exciting news that Epilepsy Research UK will be the featured charity of the BBC Radio 4 Appeal on 25th March, and delighted that long-standing ERUK supporter Nick Christian, and his daughter Rachel, are presenting the appeal for us. Please encourage all your family and friends to listen in on 25 March (full broadcast times on p2 inside), and help us make the appeal a resounding success.

• Project grants (up to £150,000) to support a top-quality research project lasting a maximum of three years

Our Scientific Advisory Committee (SAC) met in the autumn and shortlisted twenty-seven research proposals to be considered for funding. Their final decisions will be announced in May during National Epilepsy Week. See right to read about how the SAC select which research to fund.

Our Scientific Advisory Committee

Your generous donations, fundraising activities, and the proceeds of the Radio 4 Appeal, will support our annual research grant round. With your help we’ll look to fund as many promising research projects as possible, research that will bring hope of change for people with epilepsy. Thank you for your support.

See page 2 to find out more about our BBC Radio 4 Appeal on 25 March.

Spring 2018

• Fellowship awards (up to £250,000) to bring exceptional young scientists into the field of epilepsy research • Pilot grants (up to £30,000) to support, for up to two years, exciting pilot or start-up studies that have the potential to develop into ground-breaking research

The grant selection process is carried out by our Scientific Advisory Committee (SAC) which advises the charity on all scientific matters.

The SAC consists of eight epilepsy researchers from a variety of scientific and clinical backgrounds, and two lay people with strong links to epilepsy. They use a two-stage process to evaluate the project and fellowship research proposals (with a single-stage process for the pilot grants), before making the final decision about which applications to fund. Along with evaluating the applications themselves, the SAC also call on the expertise of independent specialist researchers around the world (a process known as peer review).

The current Chair of the SAC is Professor Bruno Frenguelli of the University of Warwick. Bruno has been a recipient of ERUK funding and has been a member of the SAC since 2012, before being elected as Chair in 2017. His main epilepsy interests revolve around the actions of a brain chemical called adenosine that is released during epileptic seizures and helps to switch seizures off. The current list of SAC members can be found here: www.epilepsyresearch.org.uk/ research-scientists/sac-membership/

transforming lives through research

The grant awarding process A call for research proposals is advertised in July, for submission of preliminary applications in September. All applications received are independently scored by each member of the SAC. They are then discussed at the SAC meeting in November, and the most promising project and fellowship proposals are invited to submit a more in-depth proposal in January.

These full applications are then sent for peer review by two to three independent, external reviewers before being rigorously reviewed and independently scored by the SAC members.

Shortlisted fellowship candidates are also interviewed in person by three members of the SAC. The smaller pilot grants, follow a simpler single-stage application process, and the more promising are sent to one external reviewer.

Among the many questions the SAC need to consider are: • Is the question being asked worth answering?

• Are the investigations proposed the best way to find an answer to the question?

• Do the applicants have the necessary expertise to successfully complete the project?

• Is the proposal value for money?

• Which proposals have the greatest potential for patient benefit?

Throughout the selection process members of the SAC follow a strict conflict of interest procedure to ensure they are not involved in any assessment or decision-making process involving applicants from their own institution, or someone they have previously collaborated with or know personally. Should there be a conflict the SAC member is not given access to the application or the reviews, and they excuse themselves from the meeting for the duration of the discussion.

At their final meeting in March the SAC discuss the applications in the context of their own opinions, the external reviews and, for fellowships, the views of the interview panel members. After this rigorous assessment the shortlisted proposals are scored and decisions are made as to which projects to recommend to the Trustees for funding.

Each year we receive approximately 60 applications, shortlist about one-third of these, and finally award six to eight grants. The 2018 grant awards will be announced in May during National Epilepsy Week.

Page 1 12/03/2018 10:14