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2023-01-31-accounts

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Dravet Syndrome UK

ANNUAL REVIEW & UNAUDITED FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 JANUARY 2023 Registered charity number: 1128289

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Dravet Syndrome UK

CONTENTS

Trustees' Annual Report

Year Ended 31 January 2023

The trustees present their report and the unaudited financial statements of the charity for the year ended 31 January 2023.

Reference and administrative details

5 Welcome from our Chair

6

Highlights of our year

8 Supporting families affected by Dravet Syndrome

12 Raising awareness and understanding of Dravet Syndrome

16 Funding medical research

18 Fundraising focus

22 FINANCIAL STATEMENTS

22

Independent examiner's report to the trustees

Dravet Syndrome UK

Registered charity name Dravet Syndrome UK Charity registration number 1128289 Principal office PO Box 756 Chesterfield Derbyshire S43 9EB The trustees K Hughes G Wilson-John J D R Lloyd N Williamson Independent examiner T G Leeman FCA MCABA Limited trading as Mitchells Chartered Accountants and Business Advisers 91 - 97 Saltergate Chesterfield Derbyshire S40 1LA

Structure, governance and management

23 Statement of financial activities (incorporating income and expenditure account)

24

Statement of financial position

25

Notes to the financial statements

Governing Document

Dravet Syndrome UK is currently constituted under the original Declaration of Trust dated 31 January 2009 and supplemental deed dated 18th July 2018. Dravet Syndrome UK is registered as a charity with the Charity Commission.

Trustees Selection Methods

The following pages to not form part of the financial statements

35 Detailed statement of financial activities (incorporating income and expenditure account)

The appointment of trustees is governed by the Declaration of Trust. Trustees must act in the best interests of the charity at all times. Future trustees must be appointed for terms of office of four years by resolution of the trustees and be re-appointed at the end of the term of office. All trustees must be over 18 and there must be a minimum of 2 and a maximum of 6 trustees. Under the trust deed a trustee may be appointed or removed by resolution of the trustees.

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ABOUT DRAVET SYNDROME UK

Dravet Syndrome UK was established in 2009 by a group of parents who came together looking for support, resources and information relating to this rare condition. Today, much more is known about Dravet Syndrome and we are privileged to support many families affected by the condition in England, Wales, Scotland and Northern Ireland.

We are the only registered charity in the UK dedicated to improving the lives of families affected by Dravet Syndrome.

Our mission is to bring hope to families through support, education and medical research.

OBJECTIVES AND ACTIVITIES

The objective and main activities of the charity are expressed in the Trust Deed and are the "general purposes of such charitable bodies or for such other purpose as shall be exclusively charitable as the trustees may from time to time decide". The trustees must apply the income of the charity in furthering the following objects ("the objects"):

RESEARCH

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EDUCATION
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SUPPORT
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To fund medical research to increase understanding of Dravet Syndrome, improve its management, work towards better outcomes and hopefully one day find a cure.

To raise awareness and understanding of Dravet Syndrome.

To support families affected by Dravet Syndrome emotionally, practically and financially.

All our activities are underpinned by guidance and support from a world-renowned Medical Advisory Board.

PUBLIC BENEFIT

The trustees confirm that they have complied with the requirements of Section 17 of the Charities Act 2011, having due regard to the public benefit guidance published by the Charity Commission for England and Wales.

To find out more about Dravet Syndrome UK, visit www.dravet.org.uk

WELCOME

February 2022 to January 2023 was a tough year for our community of families affected by Dravet Syndrome, a rare and life-limiting neurological condition. While the immediate challenges of the Covid-19 pandemic subsided, the ever-changing political climate, cost-of-living rises, and the impact on health and social care provision meant that our families still faced a great deal of uncertainty and worry, making the vital services provided by Dravet Syndrome UK ever more important.

At Dravet Syndrome UK, we put the needs of families at the heart of everything we do. During the pandemic, we put emergency measures in place to inform and support families during unprecedented times. In 2022 to 2023, we have been able to refocus efforts on moving forward with the implementation of our five-year strategy – reaching and empowering more families, educating more professionals and supporting more research.

As we look ahead, there is much to feel positive about. There are new treatments on the horizon and a growing awareness of Dravet Syndrome and its devastating impact on families.

We want to say a huge thank you to all our staff, volunteers, advisors, researchers, health professionals, fundraisers, families and every member of the Dravet Syndrome community. Together we work towards our mission to improve the lives of all those affected by Dravet Syndrome.

Through our support services, we reached more families than ever before, empowering caregivers through emotional, practical and financial help. This year, following the easing of COVID-19 restrictions, we were able to host our Annual Family Weekend Away once again, bringing over 60 families together to help overcome the isolation of living with a rare condition. We conducted research to gather more data and evidence to support the needs of families. We also spoke at key medical meetings, and met with experts to raise awareness and understanding among healthcare professionals.

Galia Wilson

Chair of Trustees

In 2022 to 2023, we have refocused efforts on moving forward with the implementation of our five-year strategy – reaching and empowering more families, educating more professionals and supporting more research.

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HIGHLIGHTS OF OUR YEAR

SHARED

information about Dravet Syndrome with over 34 000 , website visitors – an increase of over 4,000 OR 12% OR 12% 12%

CELEBRATED winners of , IN 2022-23, DRAVET SYNDROME UK: website visitors – an increase of over our annual 16 ‘Sibling Awards’, 4,000 OR 12% OR 12% 12% recognising the kindness and compared to the previous year. patience of super brothers and sisters of those living with Dravet Syndrome. SUPPORTED WELCOMED HELPED ongoing research projects new families, growing improve the lives of ATTENDED to improve treatment, care our registered number young adults living with scientific conferences and family life with Dravet 41of beneficiaries toof beneficiaries to 29 Dravet Syndrome with to raise awareness Syndrome, including two the award totalling more than 4 among healthcare gene therapy projects. A professionals. ~~— ®~~ £25,500 from our 16+ Assistance Fund. RAISED AWARENESS 502 about all aspects of living with Dravet Syndrome children/adults with Dravet Syndrome, via regular posts to our social media channels, LAUNCHED which achieved a combined reach of over the healthcare professional section of our website, initially focusing on diagnosing and INCREASED 650[,] 000 689 managing Dravet Syndrome. our online support forum parents/carers and across Facebook, Instagram, Twitter and (our private Facebook LinkedIn, while our videos gained over group) from 384 to 498 siblings. 72[,] 000 410 views on YouTube. MEMBERS PROVIDED some reassurance and peace of FACILITATED GATHERED TOGETHER mind to parents/carers, funding research focus groups families living with Dravet Syndrome seizure monitors that to highlight the needs at our Annual Weekend Away, building provide an early alert 5of parents/carers and 66 lasting connections in a welcoming and 29 to seizures occurring. the challenges they face. supportive environment. ~~eo~~ DRAVET SYNDROME UK ANNUAL REVIEW 2022-23 7

new families, growing our registered number 41of beneficiaries toof beneficiaries to 502 children/adults with Dravet Syndrome, 689 parents/carers and 498 siblings.

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Practical and emotional advice

As a parent, living with Dravet Syndrome is mentally and physically draining. And I always think it must be for the children too. At the Annual Family Weekend Away, they’re surrounded by other brothers and sisters who know exactly what it’s like to live that life. It’s great just to watch them have fun, play and run around together. They come away with so many memories. It’s a massive benefit mentally as well. Mum of a 12-year-old with Dravet Syndrome

Our Family Support Manager (who is also a parent to a young adult living with Dravet Syndrome) provides practical assistance (such as writing letters to support access to care) and emotional support to caregivers. She is available to provide one-toone advice to families, or simply be there to listen to caregivers who need to talk to someone, who understands what they are going through.

The feedback from caregivers who have received 1:1 emotional and practical support provided has been consistently positive. In multiple cases, outcomes demonstrate specific and tangible . a>i benefits, such as the approval of applications for |y social care or schooling. In other cases, contact ‘cee a an cite aie iy , ’ has helped to relieve the isolation and anxiety associated with living with a rare and devastating condition such as Dravet Syndrome.

The Annual Family Weekend is a rare opportunity for alleviating isolation and meeting other families going through similar challenges. The itinerary includes lots of opportunities for families to get together. It’s a safe, inclusive and supportive environment for parents/carers and siblings to relax, knowing medical support is there if they need it, as they spend time with others who really understand what living with Dravet Syndrome is like.

We know that our families gain a huge amount of support from each other. In 2022-23, our private Facebook group grew from 384 to 410 members. There are usually around four or five new posts every day. Topics range from seizure medication to residential care options, as well as the ups and downs of everyday life with Dravet Syndrome. The forum is rooted in lived-experience and plays an essential part in reducing people’s isolation and helping parents/carers and siblings feel less alone.

SUPPORT

We support families affected by Dravet Syndrome emotionally, practically and financially

Bringing families together

In June 2022, 66 families living with Dravet Syndrome joined us at Center Parcs in Sherwood forest for our Annual Family Weekend Away . Children and adults with Dravet Syndrome are prone to ‘status epilepticus’, prolonged seizures or clusters of seizures that are close together with no recovery time, necessitating emergency treatment. For many families this means they are unable to enjoy a holiday for fear of being unable to access medical care in time. That’s why we fund two emergency paramedic crews and ambulances to be onsite with us throughout the weekend. Knowing that emergency medical support is there if needed is a key factor in enabling families to attend this weekend. We also provide a financial grant of £300 per family to help with costs.

Key achievements

Family support services

When they register with Dravet Syndrome UK, families:

Receive a welcome pack of information. Become eligible for our grants.

In 2022-23, 41 new families joined our Dravet Syndrome UK community . We now have 502 children/adults with Dravet Syndrome, 689 parents/carers and 498 siblings registered with us.

Gain access to our private Facebook group.

Access to one-to-one advice from our Family Support Manager.

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Sibling awards

I just wanted to let you know that we are all loving our daughter’s beach wheelchair, funded by a Dravet Syndrome UK 16+ Assistance Fund grant. We’ve just had a fabulous holiday in an accessible safari tent and we got to explore beaches that would have been impossible without it. Thank you so much to everyone who made this possible.

Children who have a sibling with Dravet Syndrome have to adapt to day-to-day challenges – plans are cancelled, parents are stressed and exhausted, and they might see their sibling undergo upsetting emergency medical care. Our Sibling Awards recognise these unsung heroes of the Dravet Syndrome community. Last year, 12 children aged 5 to 15 were nominated for our Super Sibling Awards. We also introduced a new award for adult siblings, with 4 over-16s receiving our Sibling Recognition Awards. They each receive a gift voucher and certificate.

Mum to a young adult with Dravet Syndrome

Sadly, we also provided three bereavement grants to families who lost a child with Dravet Syndrome. The grants of £1,000 each help families manage funeral costs and can be a financial lifeline at the toughest time in their lives. The bereavement grants we offer are supported by funding we received from St James’s Place Charitable Foundation.

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Empowering parents/carers with knowledge,

Financial support

We offer a range of financial grants to support families living with Dravet Syndrome, none of which are means-tested. In 2022-23, our Seizure Monitor Fund awarded 29 seizure monitors, helping alert parents/carers early when their child or adult has a seizure. Responding early to a seizure can potentially reduce the risks of serious harm.

Organising informative plenary and

Our 16+ Assistance Fund aims to help address the gap in grants available to families caring for disabled adults. We offer an annual grant of up to £1,000. The grant can be used to fund any items of equipment or assistance that will improve the life of a young adult with Dravet Syndrome, aged 16 or older. In 20222023, we awarded 29 grants totalling over £25,000. We funded a range of items including special educational apps, a beach wheelchair and sensory garden equipment.

Proactively supporting families by phoning

CASE STUDY

We’ve been supported by Dravet Syndrome UK from the start and that has made such a huge difference to us

condition and to find ways to better manage it. There is activity happening behind the scenes all the time, and we would highly recommend attending a future conference, if you can get there.

Meet Carrie, Mum to 5-year-old Penny

who lives with Dravet Syndrome. Here, they share the impact that support from Dravet Syndrome UK has had on their lives.

We’ve had an amazing time at the Annual Family Weekend Away, meeting other families living with Dravet Syndrome. Sometimes, it can be quite an isolating condition and no matter how hard people try, they never fully understand what a Dravet family goes through on a daily, hourly and sometimes minute by minute basis. This is what makes the Family Weekend so special, there are lots of people there who are in the same situation as you and your family.

“Although the diagnosis of Dravet Syndrome was difficult, it also made things a lot easier. Because Penny had an early diagnosis, it’s meant that we’ve been supported by Dravet Syndrome UK from the start and that has made such a huge difference to us. The private Facebook forum for parents/carers, for example, has been so useful. It’s so reassuring talking to other parents and sharing knowledge and understanding.

Dravet Syndrome UK provided us with a grant from their Seizure Monitor Fund for a Pulse Oximeter, which monitors Penny’s heart rate and oxygen levels and alerts us to potential seizures.

Our other children, Ruby and Teddy, were nominated by family members for a Dravet Syndrome UK Sibling Award. The excitement for them was immense when they received something through the post with their names on. They are both such valuable members of the family, so this really gave them some great encouragement to keep up the good work.”

We’ve attended the Dravet Syndrome UK Conferences, which have left us feeling very positive – it became apparent that there are professionals fighting to get better understanding of our child’s

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Raising public awareness

June is Dravet Syndrome Awareness Month. In 2022, we ran our biggest ever press campaign, supporting families to share their experiences with the media. We had coverage in local, national, print and online media, including BBC News Online where we were their eighth most read story on the day after publication.

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Other press included The Mirror, The Daily Record, Edinburgh Evening News, The Northern Echo and a front-page mention on the Belfast Telegraph . Families and Dravet Syndrome UK spokespeople were interviewed on BBC Radio and on regional stations across the UK. They made TV appearances on BBC Look North and ITV News West Country .

Our Medical Advisory Board member, Amanda Tomalin, had an opinion piece published in the Nursing Times , raising vital awareness among nurses.

Other awareness-raising activities during June’s awareness month included:

EDUCATION

We raise awareness and understanding of Dravet Syndrome

Key achievements

Educating health professionals

We educate health professionals involved in the care of people with Dravet Syndrome, aiming to increase diagnosis and improve the way the condition is managed. Last year, we developed a new section

of our website for health professionals , launched at the British Paediatric Neurology Association conference in January 2023. The online content includes essential information on diagnosing and managing Dravet Syndrome and supporting families. We plan to grow this resource throughout 2023.

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Educating professionals at medical meetings and events

Every year, our staff and trustees attend leading medical conferences so they can engage with health professionals and raise awareness of Dravet Syndrome. In 2022-23, we attended:

European Paediatric Neurology Society (EPNS) Congress where we had an exhibition stand and distributed our Could it be Dravet? leaflet.

European Epilepsy Congress (EEC) , a leading scientific meeting attended by neurologists from across Europe. Our Chair gave a presentation on ‘Climate change and epilepsy: what to know and what to do’, raising awareness of the impact of temperature change on people with Dravet Syndrome.

American Epilepsy Society (AES) Annual Meeting , where our Chair and Director learnt about the latest developments in Dravet Syndrome and met with other patient organisations and leading experts.

British Paediatric Neurology Association (BPNA) Annual Conference where we launched our new website for health professionals and gave a presentation on gastrostomy (tube feeding). We also had an exhibition stand where we distributed our Could it be Dravet? leaflet and engaged one-to-one with professionals to help raise awareness.

Making sure parents/carers’ voices are heard

In 2022-23, we spoke at a range of meetings with other organisations involved in developing and providing current and future treatments for Dravet Syndrome. This included those from the rare diseases sectors, other charities with an interest in epilepsy/neurological conditions, the pharmaceutical industry, the NHS and National Institute for Health and Care Excellence (NICE).

In particular, we were pleased to represent families affected by Dravet Syndrome, during a review of the drug fenfluramine (Fintepla), a new anti-seizure treatment specifically used for Dravet Syndrome. Initially, NICE had not recommended the treatment, but it was eventually approved to be used by the NHS in England and Wales in July 2022.

It was a long journey to get to this point and Dravet Syndrome UK was there every step of the way. We spoke up for the Dravet Syndrome community, reiterating how important it is to have the option to try new treatments, even if they don’t work for everyone. We are grateful to NICE for listening to the patient and carer community, particularly when it comes to the impact on quality of life.

Awareness and education are vital for all conditions, but particularly for rare ones like Dravet Syndrome. By sharing the kind of information Dravet Syndrome UK produces, we help dismantle damaging myths. Amanda Tomalin, Epilepsy Nurse Specialist

Looking to the future

Educating health and social care

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RESEARCH

We fund medical research to increase understanding of Dravet Syndrome, improve its management, work towards better outcomes and hopefully one day find a cure

Key achievements

Our 2021-2026 strategy sets out our aim to deliver research that puts the needs of the families living with Dravet Syndrome front and centre. While current genetic research gives us hope that there will be effective gene-based treatments for Dravet Syndrome in the future, there are many other challenges faced by families today that need urgent attention. These are also important areas of focus for our charity.

Understanding, treating and improving care for the non-seizure related aspects of Dravet Syndrome (known as ‘comorbidities’), including intellectual disability, autism, attention deficit hyperactivity disorder (ADHD), behaviours that challenge, and difficulties with speech, mobility, eating and sleep.

Our research priorities are:

Exploring how social care can help to improve the quality of life of people affected by Dravet Syndrome.

We support medical research into Dravet Syndrome by collaborating with researchers and companies developing treatments. Our aim is to bridge the gap between families affected by Dravet Syndrome and researchers. We make sure research meets the needs of families and that their voices and priorities are heard as studies are developed.

In 2022, we collaborated with the University of Glasgow to highlight the emotional challenges faced by parents and carers. We partnered with a team led by Professor Liam Dorris, the Lead Clinician for the neuropsychology service at the Royal Hospital for Children Glasgow, to organise a series of focus group meetings. In total, we held five focus groups with 24 parents/carers. The results of this research will be published later in 2023.

We also helped deliver new research investigating the feeding difficulties associated with Dravet Syndrome. We surveyed 65 families to explore feeding, swallowing and weight loss, and the impact of gastrostomy. We worked with Professor Sanjay Sisodiya and Dr Lisa Clayton from the Epilepsy Society’s Chalfont Centre to analyse the results, which were presented at a British Paediatric Neurology Association meeting. A full publication is Professor pending in 2023. Sanjay Sisodiya

We funded a PhD placement for arts therapist Leanne O’Keefe, who is exploring the benefits of music therapy for children with Dravet Syndrome, focusing on addressing challenging behaviours. We hope the research can help to change the way the music therapy profession views Dravet Syndrome and other neurological disorders.

Ongoing research

Two key pieces of gene therapy research, which we are co-funding with Great Ormond Street Children’s Charity (GOSH), are underway. These are exciting and complementary additions to the multiple gene and genetic studies into Dravet Syndrome that are currently taking place. These therapies aim to dramatically improve seizures, and also the intellectual disability and comorbidities associated with this devastating condition.

The first study is led by Dr Rajvindar Karda at University College London. The second study is led by Professor Matthew Wood at the University of Oxford. This research aims to develop a new genetic therapy to increase the amount of “missing” SCN1A protein in someone with Dravet Syndrome.

A joint research project we co-funded with European patient organisations also started in 2022. It looks at how Dravet Syndrome develops and how certain cells interact when someone has the condition, with the aim of better understanding why some people respond to certain treatments and others do not.

We are very excited about the SCN1A Horizons Natural History SCNIAY Project, led by Professor Andreas Brunklaus at the University of Glasgow. This is an incredibly important piece of research that will allow us to learn more about the seizures, intellectual disability Professor and comorbidities affecting Andreas Brunklaus children and adults with Dravet Syndrome. We’re co-funding this project and invested £30,000 in 2021-22. This year, Professor Brunklaus and colleagues set up the framework for the study, which will take place in 27 hospitals across the UK. Recruitment will start in 2023.

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LOOKING FORWARD

Next year, we will continue to be driven by our five-year strategy which will underpin and guide our work through to 2026. It provides a roadmap to help us reach our overall mission, as it has done in 2022-23.

We want to:

Reach more families.

Community fundraising

We would like to pay tribute to our amazing community fundraisers, who raised a collective total of £325,697 in 2022-2023.

We are so grateful for the passion and dedication of our community fundraisers. Across every part of the UK, our supporters have been running, cycling, climbing, crafting, baking, bell-ringing, wearing purple and much much more, to raise money for Dravet Syndrome UK.

We would like to say a special thank you to Tamara Ward and her husband Mike for raising more than £100,000 in May 2022, through the epic 5K #EveryDayinMay4Dravet challenge and a gala dinner held the same month.

Thank you so much to everyone who has contributed. With your help we’re able to continue our mission to improve the lives of families affected by Dravet Syndrome.

Corporate partners

We’d like to thank our corporate partners for their support, involvement and dedication this year.

Long-standing partners, XTX Markets , helped us to make considerable progress in delivering against our charitable aims in 2022-23. The company contributed towards our family support, education and research projects. The XTX Markets staff running club also took on both the Hackney Half Marathon and the Royal Parks Half Marathon for DSUK, and their efforts were kindly match-funded by XTX.

Our ongoing partnership with Kid-A continued, with their staff team joining us for the Marathon Walk London, raising funds and awareness of Dravet Syndrome.

We were delighted to welcome on board two new corporate partners in 2022-23. Construction industry company Roofdec and finance providers Cubefunder . Both of these tailored partnerships developed following introductions from employees who have a family connection to Dravet Syndrome. They include sponsorship, employee engagement and efforts to increase awareness of Dravet Syndrome across their business networks.

We chose to support Dravet Syndrome UK after seeing our colleague and his wife share their daughter’s story on BBC Look North during Dravet Syndrome Awareness Month. We all knew the challenges that the family face, but that interview really hit home. We wanted to give back to the charity who has provided support to one of our own.

Jon Barnes Jnr, Managing Director at Roofdec, who took part in the Marathon Walk London in 2022

Industry grants

We are grateful for continued support from the pharmaceutical industry sector . In the reporting year, we received restricted grants from companies including Zogenix (now part of UCB ) and GW Pharma Limited (now part of Jazz Pharmaceuticals ) to enable family support and educational projects.

Trusts and foundations

We were delighted to be awarded a £20,000 grant from the Baily Thomas Charitable Fund in October 2022. The grant is helping with running costs of our family support services for a year, focusing on learning disability, which affects people with Dravet Syndrome.

We’d like to thank St James’s Place Charitable Foundation for funding our bereavement grants for the second year running.

Deliver research that puts family needs first.

The strategy includes the following four strategic objectives:

1. Every family counts

Every UK family living with Dravet Syndrome will be aware of Dravet Syndrome UK and the support we offer. We will help them to access this support and know that all of our activities and research are driven by the things that count the most to them.

2. Leaders in the field

We will lead the conversation about Dravet Syndrome in the UK, making the best possible use of research funds, collaborating internationally as opportunities arise, and developing an authoritative global voice.

3. Support for professionals

We will seek to broaden the range of health and social care professionals with an improved understanding of Dravet Syndrome, enabling earlier diagnosis and providing accessible pathways to the best possible treatment and care for all ages.

4. Empowerment of families

Families living with Dravet Syndrome will know and understand their rights and feel empowered to assert these rights to get the support they need.

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FINANCIAL REVIEW

Incoming Resources

In 2022/2023 DSUK received £456,074 (2021/2022: £342,790) in income from the following sources:

£325,697 (2021/2022: £213,001) Community fundraising

£55,563 (2021/2022: £66,500) Industry grants

£47,000 (2021/2022: £45,000) Corporate sponsorship

£5,314 (2021/2022: £10,789) Income generation

Historically community fundraising has been an important source of income for DSUK, with £209,418 raised in 2019/2020. With the onset of the pandemic it was not possible for the normal community fundraising activities to take place such as marathons, treks etc. meaning only £136,238 was secured in 2020/2021. In 2021/2022 we saw a recovery in community fundraising, which generated £213,001 and this year has seen a further increase to £325,697. Other funding sources continue to ably support the ongoing activities of the charity. XTX Markets generously continue as a corporate sponsor of the charity.

Outgoing Resources

In 2022/2023 DSUK spent £371,118 (2021/2022: £364,519) delivering its charitable objectives.

During this reporting period costs have been incurred in respect of the following:

Reserves Policy

Dravet Syndrome UK is required to ensure that free reserves are available in each financial year to meet any reasonably foreseeable contingency.

For the financial year ending 31st January 2024, the Board of Trustees has agreed to a reserves policy of maintaining a minimum of six months running costs.

Based on our forecast for 2023-2024, six months of operating expenditure would be approximately £316,000. At 31 January 2023, the free reserves of the charity amount to £357,713 net of tangible fixed assets and designated funds, which constitutes the free reserves at that date. (The free reserves at the comparative year-end were £358,959).

As set out in our 5-Year Strategy for 2021-2026 DSUK is currently implementing planned strategic organisational growth. To enable this growth, our estimated expenditure in 2023-2024 is anticipated to exceed estimated income. Therefore, the current free reserves are deemed appropriate by the Board of Trustees to support planned growth while also ensuring continuity of charitable operations and provision of services to families affected by Dravet Syndrome.

The trustees' annual report was approved on

26 September 2023

and signed on behalf of the Board of Trustees by:

K Hughes Trustee

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Dravet Syndrome UK

Independent Examiner's Report to the Trustees of Dravet Syndrome UK

Year Ended 31 January 2023

I report to the trustees on my examination of the financial statements of Dravet Syndrome UK ('the charity') for the year ended 31 January 2023.

Responsibilities and basis of report

As the trustees of the charity you are responsible for the preparation of the financial statements in accordance with the requirements of the Charities Act 2011 (‘the Act’).

I report in respect of my examination of the charity's financial statements carried out under section 145 of the 2011 Act and in carrying out my examination I have followed all the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act.

Independent examiner's statement

Since the charity’s gross income exceeded £250,000 your examiner must be a member of a body listed in section 145 of the 2011 Act. I confirm that I am qualified to undertake the examination because I am a member of the Institute of Chartered Accountants in England and Wales (ICAEW), which is one of the listed bodies.

I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination giving me cause to believe that in any material respect:

  1. accounting records were not kept in respect of the charity as required by section 130 of the Act; or

  2. the financial statements do not accord with those records; or

  3. the financial statements do not comply with the applicable requirements concerning the form and content of accounts set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a ‘true and fair' view which is not a matter considered as part of an independent examination.

I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached.

Dravet Syndrome UK

Statement of Financial Activities (Incorporating Income and Expenditure Account)

Year Ended 31 January 2023

2023 2022
Unrestricted Restricted
funds funds Total funds Total funds
Note £ £ £ £
Income
Donations and grants 4 348,233 102,527 450,760 332,001
Charitable activities
Other trading activities
Investment income		 5
6
7		 –
3,786
603		 –
–
–		 –
3,786
603		 6,428
2,355
6
Other income 8 925 – 925 2,000
───────── ───────── ───────── ─────────
Total income 353,547 102,527 456,074 342,790
═════════ ═════════ ═════════ ═════════
Expenditure
Expenditure on raising funds:
Costs of raising donations and
grants 9 31,459 4,000 35,459 33,640
Costs of other trading activities 10 7,495 – 7,495 1,083
Expenditure on charitable activities 11 241,680 86,484 328,164 329,796
───────── ───────── ───────── ─────────
Total expenditure 280,634 90,484 371,118 364,519
═════════ ═════════ ═════════ ═════════
───────── ───────── ───────── ─────────
Net income/(expenditure) 72,913 12,043 84,956 (21,729)
═════════ ═════════ ═════════ ═════════
Transfers between funds (30,778) 30,778 – –
───────── ───────── ───────── ─────────
Net movement in funds 42,135 42,821 84,956 (21,729)
Reconciliation of funds
Total funds brought forward 390,398 14,630 405,028 426,757
───────── ───────── ───────── ─────────
Total funds carried forward 432,533 57,451 489,984 405,028
═════════ ═════════ ═════════ ═════════

The statement of financial activities includes all gains and losses recognised in the year. All income and expenditure derive from continuing activities.

T G Leeman FCA Independent Examiner

MCABA Limited t/a Mitchells Chartered Accountants and Business Advisers 91 - 97 Saltergate Chesterfield Derbyshire S40 1LA

26 September 2023 Date: _______

The notes on pages 25 to 34 form part of these financial statements.

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Dravet Syndrome UK

Statement of Financial Position

31 January 2023

2023 2022
Note £ £ £
Fixed Assets
Tangible fixed assets 17 1,820 466
Current Assets
Stocks 18 10,965 14,072
Debtors 19 82,236 32,188
Cash at bank and in hand 442,720 398,904
───────── ─────────
535,921 445,164
Creditors: amounts falling due within one year 20 47,757 40,602
───────── ─────────
Net Current Assets 488,164 404,562
───────── ─────────
Total Assets Less Current Liabilities 489,984 405,028
───────── ─────────
Net Assets 489,984 405,028
═════════ ═════════
Funds of the Charity
Restricted funds 57,451 14,630
Unrestricted funds 432,533 390,398
───────── ─────────
Total charity funds 23 489,984 405,028
═════════ ═════════

These financial statements were approved by the board of trustees and authorised for issue on

Dravet Syndrome UK

Notes to the Financial Statements

Year Ended 31 January 2023

General information

1.

The charity is a registered charity in England and Wales and is unincorporated. The address of the principal office is PO Box 756, Chesterfield, Derbyshire, S43 9EB.

2. Statement of compliance

These financial statements have been prepared in compliance with FRS 102, 'The Financial Reporting Standard applicable in the UK and the Republic of Ireland', the Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (Charities SORP (FRS 102)) and the Charities Act 2011.

3. Accounting policies

Basis of preparation

The financial statements have been prepared on the historical cost basis.

The financial statements are prepared in sterling, which is the functional currency of the entity. The charity meets the definition of a public benefit entity under FRS102.

Going concern

The trustees have prepared and reviewed budgets and are confident that these show that the charity is able to operate within its available resources and meet its liabilities as they fall due for the foreseeable future. Accordingly, the trustees consider it appropriate to continue to adopt the going concern basis of accounting in preparing the financial statements.

26 September 2023 _______ and are signed on behalf of the board by:

Judgements and key sources of estimation uncertainty

6EE6A4843F 99485... K Hughes Trustee

In application of the charity's accounting policies, the trustees are required to make judgements, estimates and assumptions about the carrying amount of assets and liabilities that are not readily apparent from other sources. The estimates and associated assumptions are based on historical experience and other factors that are considered to be relevant. Actual results may differ from these estimates. The estimates and underlying assumptions are reviewed on an ongoing basis. The trustees consider that there are no key sources of estimation uncertainty affecting these financial statements.

Fund accounting

Unrestricted funds are available for use at the discretion of the trustees to further any of the charity's purposes and general objectives. Designated funds are unrestricted funds set aside by the trustees for particular future projects or commitments. Restricted funds are subjected to restrictions on their expenditure imposed by the donor or which have been raised for particular purposes. Any costs of raising and administering such funds are charged against the specific fund.

The notes on pages 25 to 34 form part of these financial statements.

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Dravet Syndrome UK

Notes to the Financial Statements (continued)

Year Ended 31 January 2023

3. Accounting policies (continued)

Incoming resources

All income is included in the statement of financial activities when entitlement has passed to the

charity, it is probable that the economic benefits associated with the transaction will flow to the charity and the amount can be reliably measured. The following specific policies are applied to particular categories of income:

Resources expended

Expenditure is recognised on an accruals basis as a liability is incurred.

Expenditure on raising funds includes the costs of all fundraising activities, events, non-charitable trading activities, and the sale of purchased and donated goods.

Expenditure on charitable activities includes all costs incurred by a charity in undertaking activities that further its charitable aims for the benefit of its beneficiaries, including those support costs and costs relating to the governance of the charity apportioned to charitable activities.

Tangible assets

Tangible assets are initially recorded at cost, and subsequently stated at cost less any accumulated depreciation and impairment losses.

Depreciation

Depreciation is calculated so as to write off the cost or valuation of an asset, less its residual value, over the useful economic life of that asset as follows:

Stocks

Stocks of goods for resale are measured at the lower of cost and net realisable value.

Pensions

The charity operates a defined contribution pension scheme, the assets of which are held separately from those of the charity. Contributions payable for the year are shown within the statement of financial activities.

Dravet Syndrome UK

Notes to the Financial Statements (continued)

Year Ended 31 January 2023

4. Donations and grants

Unrestricted Restricted Total Funds
Funds Funds 2023
£ £ £
Donations
Donations 348,233 24,464 372,697
Grants
DSUK conference – – –
Center Parcs event – 26,563 26,563
Seizure monitors – – –
16+ grants to beneficiaries – – –
Bereavement grants – 2,500 2,500
Professional website development – 25,000 25,000
Family support – 20,000 20,000
Fundraising grant – 4,000 4,000
───────── ───────── ─────────
348,233 102,527 450,760
═════════ ═════════ ═════════
Unrestricted Restricted Total Funds
Funds Funds 2022
£ £ £
Donations
Donations 258,001 – 258,001
Grants
DSUK conference – 66,500 66,500
Center Parcs event – – –
Seizure monitors – 500 500
16+ grants to beneficiaries – 5,000 5,000
Bereavement grants – 2,000 2,000
Professional website development – – –
Family support – – –
Fundraising grant – – –
───────── ──────── ─────────
258,001 74,000 332,001
═════════ ════════ ═════════

The trustees confirm that the above restricted income recognised in respect of the DSUK Conference 2021 in the comparative period is compliant with The Association of the British Pharmaceutical Industry Code of Practice.

5. Charitable activities

Unrestricted Total Funds Unrestricted Total Funds
Funds 2023 Funds 2022
£ £ £ £
DSUK conference ticket income –
════		 –
════		 6,428
═══════		 6,428
═══════

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Dravet Syndrome UK

Notes to the Financial Statements (continued)

Year Ended 31 January 2023

6. Other trading activities

Unrestricted Total Funds Unrestricted Total Funds
Funds 2023 Funds 2022
£ £ £ £
Merchandise sales 3,786 3,786 2,355 2,355
═══════ ═══════ ═══════ ═══════
7. Investment income
Unrestricted Total Funds Unrestricted Total Funds
Funds 2023 Funds 2022
£ £ £ £
Bank interest receivable 603 603 6 6
════ ════ ════ ════
8. Other income
Unrestricted Total Funds Unrestricted Total Funds
Funds 2023 Funds 2022
£ £ £ £
Consultancy services 925 925 2,000 2,000
════ ════ ═══════ ═══════
9. Costs of raising donations and grants
Unrestricted Restricted Total Funds
Funds Funds 2023
£ £ £
Event costs 6,637 4,000 10,637
Wages and salaries 16,988 – 16,988
Employer's NIC 1,565 – 1,565
Pension costs 294 – 294
Fundraising consultancy fees – – –
Just Giving charges 5,975 – 5,975
──────── ─────── ────────
31,459 4,000 35,459
════════ ═══════ ════════
Unrestricted Restricted Total Funds
Funds Funds 2022
£ £ £
Event costs 2,298 – 2,298
Wages and salaries 14,969 – 14,969
Employer's NIC 709 – 709
Pension costs 347 – 347
Fundraising consultancy fees 12,000 – 12,000
Just Giving charges 3,317 – 3,317
──────── ──── ────────
33,640 – 33,640
════════ ════ ════════

Dravet Syndrome UK

Notes to the Financial Statements (continued)

Year Ended 31 January 2023

10. Costs of other trading activities

Unrestricted Total Funds Unrestricted Total Funds
Funds 2023 Funds 2022
£ £ £ £
Opening stock 13,402 13,402 14,146 14,146
Merchandise purchases 4,440 4,440 339 339
Closing stock (10,347) (10,347) (13,402) (13,402)
──────── ──────── ──────── ────────
7,495 7,495 1,083 1,083
════════ ════════ ════════ ════════

11. Expenditure on charitable activities by activity type

Activities
undertaken Total funds Total fund
directly Support costs 2023 2022
£ £ £ £
Research funding 13,651 3,292
 16,943 117,293
Raising awareness 155,580 37,523
 193,103 113,351
Supporting families 79,126
19,084		 98,210 75,600
Governance costs – 19,908 19,908 22,832
─────────
────────		 ───────── ─────────
248,357
79,807		 328,164 329,076
═════════
════════		 ═════════ ═════════

12. Analysis of support costs

Analysis of
support costs
- charitable
activities Total 2023 Total 2022
£ £ £
Staff costs 49,307 49,307 20,145
Premises 1,173 1,173 1,070
Communications and IT 8,131 8,131 9,702
Human resources 591 591 361
Finance costs 252 252 715
Governance costs 20,353 20,353 22,832
──────── ──────── ────────
79,807 79,807 54,825
════════ ════════ ════════

13. Net income/(expenditure)

Net income/(expenditure) is stated after charging/(crediting):

2023 2022
£ £
463 229
════ ════

Depreciation of tangible fixed assets

14. Independent examination fees

2023 2022
£ £
Fees payable to the independent examiner for:
Independent examination of the financial statements 2,850 2,592
═══════ ═══════

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Dravet Syndrome UK

Notes to the Financial Statements (continued)

Year Ended 31 January 2023

15. Staff costs

The total staff costs and employee benefits for the reporting period are analysed as follows:

2023 2022
£ £
Wages and salaries 121,352 108,163
Social security costs 10,868 5,907
Employer contributions to pension plans 2,331 2,382
───────── ─────────
134,551 116,452
═════════ ═════════

The average head count of employees during the year was 4 (2022: 4).

No employee received employee benefits of more than £60,000 during the year (2022: None).

Key Management Personnel

Key management personnel include all persons that have authority and responsibility for planning, directing and controlling the activities of the charity. The total compensation paid to key management personnel for services provided to the charity was £48,976 (2022:£25,207).

16. Trustee remuneration and expenses

No remuneration or other benefits from employment with the charity or a related entity were received by the trustees.

There is 1 trustee (2022: 2) that claimed expenses or had their expenses met by the charity as follows:

2023 2022
£ £
Travel 85 393
Hotel and Subsistence 239 –
──── ────
324
════		 393
════

Dravet Syndrome UK

Notes to the Financial Statements (continued)

Year Ended 31 January 2023

17. Tangible fixed assets

Fixtures and
fittings Equipment Total
£ £ £
Cost
At 1 February 2022 490 3,994 4,484
Additions – 1,817 1,817
──── ─────── ───────
At 31 January 2023 490 5,811 6,301
════ ═══════ ═══════
Depreciation
At 1 February 2022 489 3,529 4,018
Charge for the year – 463 463
──── ─────── ───────
At 31 January 2023 489 3,992 4,481
════ ═══════ ═══════
Carrying amount
At 31 January 2023 1
════		 1,819
═══════		 1,820
═══════
At 31 January 2022 1 465 466
════ ═══════ ═══════
18. Stocks
2023 2022
£ £
Stock of merchandise and consumables 10,347 13,402
Monitor stock 618 670
──────── ────────
10,965 14,072
════════ ════════
19. Debtors
2023 2022
£ £
Prepayments and accrued income 65,686 32,013
Other debtors 16,550 175
──────── ────────
82,236 32,188
════════ ════════
20. Creditors: amounts falling due within one year
2023 2022
£ £
Accruals and deferred income 28,141 33,860
Social security and other taxes 2,709 1,979
Other creditors 16,907 4,763
──────── ────────
47,757 40,602
════════ ════════

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Dravet Syndrome UK

Notes to the Financial Statements (continued)

Year Ended 31 January 2023

21. Deferred income

2023 2022
£ £
At 1 February 2022 26,563 26,563
Amount released to income (26,563) –
Amount deferred in year 21,375 –
──────── ────────
At 31 January 2023 21,375 26,563
════════ ════════

Deferred income at the year-end relates to funding received in respect of the DSUK Conference to be held in November 2023.

22. Pensions and other post retirement benefits

Defined contribution plans

The amount recognised in income or expenditure as an expense in relation to defined contribution

plans was £2,331 (2022: £2,382).

23. Analysis of charitable funds

Unrestricted funds

Unrestricted funds
At 1 At 31
February January
2022 Income Expenditure Transfers 2023
£ £ £ £ £
General funds 359,425 353,547 (249,661) (30,778) 432,533
Designated research
fund – – – – –
Designated educational
materials fund 30,973 – (30,973) – –
───────── ───────── ───────── ──────── ─────────
390,398 353,547 (280,634) (30,778) 432,533
═════════ ═════════ ═════════ ════════ ═════════
At 1 At 31
February January
2021 Income Expenditure Transfers 2022
£ £ £ £ £
General funds 290,805 268,790 (162,540) (37,630) 359,425
Designated research
fund 50,663 – (80,000) 29,337 –
Designated educational
materials fund 45,000 – (14,027) – 30,973
───────── ───────── ───────── ──────── ─────────
386,468 268,790 (256,567) (8,293) 390,398
═════════ ═════════ ═════════ ════════ ═════════

Unrestricted grants to which entitlement passed to the charity during the 2020/21 financial year were allocated to the provision of educational materials by the trustees, as part of the ongoing drive to raise awareness of Dravet Syndrome. The project was delayed due to the COVID-19 pandemic but this funding was fully spent in the year to 31 January 2023.

Dravet Syndrome UK

Notes to the Financial Statements (continued)

Year Ended 31 January 2023

23. Analysis of charitable funds (continued)

The Board of Directors have designated further unrestricted funds in the current year for the following planned projects:

Restricted funds

Restricted funds
At 1 At 31
February January
2022 Income Expenditure Transfers 2023
£ £ £ £ £
Conference – – – – –
Research – 24,464 – – 24,464
Center Parcs 2022
event (933) 26,563 (56,408) 30,778 –
Seizure monitors -
Nottinghamshire 500 – – – 500
16+ grants to
beneficiaries 2,531 – (2,531) – –
Educational videos 10,532 – (10,532) – –
Bereavement grants 2,000 2,500 (3,000) – 1,500
Fundraising – 4,000 (4,000) – –
Center Parcs 2023
event – – (938) – (938)
Family support – 20,000 (3,922) – 16,078
Website development – 25,000 (9,153) – 15,847
──────── ───────── ──────── ──────── ────────
14,630 102,527 (90,484) 30,778 57,451
════════ ═════════ ════════ ════════ ════════
At 1 At 31
February January
2021 Income Expenditure Transfers 2022
£ £ £ £ £
Conference – 66,500 (74,793) 8,293 –
Research – – – – –
Center Parcs 2022
event – – (933) – (933)
Seizure monitors -
Nottinghamshire – 500 – – 500
16+ grants to
beneficiaries 3,464 5,000 (5,934) – 2,530
Educational videos 36,825 – (26,292) – 10,533
Bereavement grants – 2,000 – – 2,000
Fundraising – – – – –
Center Parcs 2023
event – – – – –
Family support – – – – –
Website development – – – – –
──────── ──────── ───────── ─────── ────────
40,289 74,000 (107,952) 8,293 14,630
════════ ════════ ═════════ ═══════ ════════

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Dravet Syndrome UK

Dravet Syndrome UK

Notes to the Financial Statements (continued)

Year Ended 31 January 2023

Management Information

Year Ended 31 January 2023

23. Analysis of charitable funds (continued)

Transfers of £30,778 (2022: £8,293) have been made during the year from unrestricted funds to specific restricted funds to finance a deficit in respect of projects for which specific funding was received.

In the reporting year, Dravet Syndrome UK, was able to utilise funding from a number of pharmaceutical companies, including a grant from Zogenix to fund further development of the charity's website and from GW/Jazz Pharmaceuticals in respect of the Center Parcs weekend held this year. Funding was also received from The Baily Thomas Charitable Fund for the provision of support for families living with Dravet Syndrome.

The charity also continued to receive financial support from its corporate partner, XTX Markets, which additionally included funding towards the cost of fundraising activities.

24. Analysis of net assets between funds

Unrestricted Restricted Total Funds
Funds Funds 2023
£ £ £
Tangible fixed assets 1,820 – 1,820
Current assets 494,546 41,375 535,921
Creditors less than 1 year (21,375) (26,382)
(47,757)
──────── ──────── ────────
Net assets 474,991 14,993 489,984
════════ ════════ ════════
Unrestricted Restricted Total Funds
Funds Funds 2022
£ £ £
Tangible fixed assets 466 – 466
Current assets 403,971 41,193 445,164
Creditors less than 1 year (14,039) (26,563)
(40,602)
Creditors greater than 1 year – – –
───────── ──────── ─────────
Net assets 390,398 14,630 405,028
═════════ ════════ ═════════

The following pages do not form part of the financial statements.

25. Related parties

No transactions with related parties occurred in either the current or comparative years which require disclosure within these financial statements.

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Dravet Syndrome UK

Detailed Statement of Financial Activities (Incorporating Income and Expenditure Account)

Year Ended 31 January 2023

2023 2022
£ £
Income
Donations and grants
Donations 372,697 258,001
DSUK conference – 66,500
Center Parcs event 26,563 –
Seizure monitors – 500
16+ grants to beneficiaries – 5,000
Bereavement grants 2,500 2,000
Professional website development grant 25,000 –
Family support grant 20,000 –
Fundraising grant 4,000 –
───────── ─────────
450,760 332,001
───────── ─────────
Charitable activities
DSUK conference ticket income – 6,428
──── ───────
Other trading activities
Merchandise sales 3,786 2,355
─────── ───────
Investment income
Bank interest receivable 603 6
──── ────
Other income
Consultancy services 925 2,000
──── ───────
───────── ─────────
Total income 456,074 342,790
═════════ ═════════

Dravet Syndrome UK

Detailed Statement of Financial Activities (Incorporating Income and Expenditure Account) (continued)

Year Ended 31 January 2023

2023 2022
£ £
Expenditure
Costs of raising donations and grants
Event costs 10,637 2,298
Wages and salaries 16,988 14,969
Employer's NIC 1,565 709
Pension costs 294 347
Professional fees – 12,000
Just Giving charges 5,975 3,317
───────── ─────────
35,459 33,640
───────── ─────────
Costs of other trading activities
Opening stock 13,402 14,146
Merchandise purchases 4,440 339
Closing stock (10,347) (13,402)
──────── ────────
7,495 1,083
──────── ────────
Expenditure on charitable activities
Opening monitors stock 670 118
Direct costs including research 181,908 193,844
Closing monitors stock (618) (670)
Wages and salaries 104,364 93,194
Employer's NIC 9,303 5,198
Pension costs 2,037 2,035
Insurance 1,173 1,070
Travel costs – 677
Professional fees 19,237 22,832
Depreciation 463 229
Human resources costs 591 361
Computer costs 7,668 9,473
Bank charges and admin fees 252 715
Training 1,116 720
───────── ─────────
328,164 329,796
───────── ─────────
───────── ─────────
Total expenditure 371,118 364,519
═════════ ═════════
───────── ─────────
Net income/(expenditure) 84,956 (21,729)
═════════ ═════════

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GET INVOLVED

Find out more about how you can support Dravet Syndrome UK:

MAKE A DONATION

To give a one-off gift or set up a regular donation, go to dravet.org.uk/make-a-donation

FUNDRAISE

For a whole host of events and fundraising ideas, go to dravet.org.uk/fundraising

SHOP

Check out our Dravet Syndrome merchandise at dravet.org.uk/shop

PARTNER WITH US

To find out how we can work together, contact us on info@dravet.org.uk

www.dravet.org.uk

Dravet Syndrome UK PO Box 756 Chesterfield S43 9EB Tel: 01246 912 421 Email: info@dravet.org.uk

@DravetSyndromeUK @DravetUK Dravet Syndrome UK

Registered charity number: 1128289

Design: www.adeptdesign.co.uk