DRAVET
, Hope for families with life-limiting epileps
Dravet Syndrome UK
Annual Review
2025-2026
## **CONTENTS**
- **3 TRUSTEES ANNUAL REPORT**
- **4** About Dravet Syndrome UK
- **5** Welcome from our Chair of Trustees
- **7** Highlights of our year
- **9** Supporting families affected by Dravet Syndrome
- **17** Raising awareness and understanding of Dravet Syndrome
- **24** Funding medical research
- **28** Fundraising focus
- **33** Strategic growth and looking forward
## **35 FINANCIAL STATEMENTS**
- **37** Independent Examiner's Report to the Trustees of Dravet Syndrome UK
- **38** Statement of Financial Activities (Incorporating Income and Expenditure Account)
- **39** Statement of Financial Position
- **40** Statement of Cash Flows
- **41** Notes to the Financial Statements
**02** Dravet Syndrome UK
## **DRAVET SYNDROME UK TRUSTEES’ ANNUAL REPORT**
_Year Ended 31 January 2026_
## **REFERENCE AND ADMINISTRATIVE DETAILS**
|**Registered charity name**|Dravet Syndrome UK|
|---|---|
|**Charity registration**|1128289|
|**number**||
|**Principal ofce**|PO Box 756
Chesterfeld|
||Derbyshire|
||S43 9EB|
|**The trustees**|G Wilson-John|
||J D R Lloyd|
||N Williamson|
||A Williams|
||S Smith|
||K Hughes (resigned 28 February 2025)|
|**Senior management**|C Eldred|
|**Independent examiner**|David Waining FCA|
||SMH Mitchells|
||91 – 97 Saltergate
Chesterfeld|
||Derbyshire|
||S40 1LA|
## **STRUCTURE, GOVERNANCE AND MANAGEMENT**
## **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 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 may 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.
Annual Review 2025-2026 **03**
## **ABOUT DSUK**
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”):
## **SUPPORT**
## **EDUCATION**
## **RESEARCH**
To support families affected by Dravet Syndrome emotionally, practically and financially.
To raise awareness and understanding of Dravet Syndrome.
To fund medical research to increase understanding of Dravet Syndrome, improve its management, work towards better outcomes and hopefully one day find a cure.
All our activities are underpinned by guidance and support from a world-renowned Medical Advisory Board.
## **PUBLIC BENEFIT**
Charities Act 2011, having due regard to the public benefit guidance published by the Charity Commission for England and Wales.
**04** Dravet Syndrome UK
## **WELCOME**
## **From Galia Wilson, Chair of Trustees**
meaningful progress for Dravet Syndrome UK (DSUK), marked by important milestones in our research programme, growth in our professional engagement, and continued support for the families who live with Dravet Syndrome: a rare, severe and lifelong condition that impacts every aspect of family life.
brought into sharp focus just how much we have achieved.
first Chief Scientific Officer, Ceri Hughes, in May 2025, made possible by the Chan Zuckerberg Initiative's Rare As One grant. This landmark appointment represents a step change in our research capability. Ceri brings established expertise as an accomplished scientist alongside a deeply personal connection to the Dravet Syndrome community as her younger brother Iwan lives with the condition. Her arrival has already accelerated our research engagement.
In November, we launched our priority-setting project, a structured process to identify and prioritise the most important unanswered research questions in Dravet Syndrome, guided by lived experiences. This project will culminate in the publication of Dravet Syndrome UK's first Research Strategy later in 2026. In the meantime, we continue our proactive engagement in the wider research landscape, which is advancing rapidly, with new disease-modifying gene therapies entering clinical trials for the first time.
Our advocacy work is essential to ensure that the patient and caregiver voice is represented throughout those scientific and medical advances. During the year, DSUK was consulted on 15 research studies and was actively involved in 9 projects. We continue to work alongside both pharmaceutical companies and researchers involved in the development of new treatments and initiatives. This includes the pioneering SCN1A Horizons Natural History project, which is gathering clinical and neurodevelopmental data on more than 200 children and adults with SCN1A-related epilepsy and ultimately aims to set a new national standard of care for these conditions.
In November 2025, we hosted our most successful Biennial Conference to date. We welcomed over 400 people across our Professional Day and Parent/Carer Day. We were delighted to see that the Professionals' Day received a 5/5 rating for educational quality, with attendees reporting that the content would significantly change their clinical practice. For the first time, the Conference also included our new Little Moments Matter Awards, celebrating professionals who make a real difference to families.
Annual Review 2025-2026 **05**
In addition to the Conference, we continued to develop resources to help families navigate the complexities of living with Dravet Syndrome, and to equip the professionals around them. February 2025 saw the launch of both our redesigned website, which has driven a 92% increase in visits year-on-year, and our revised Guide to the Transition from Child to Adult Services. These were followed during the year by guides on the mental health impact of caring for someone with Dravet Syndrome, information packs for emergency services and GPs, and a new resource pack for teachers supporting children living with the condition at school.
We welcomed 34 new families into our community this year, and we are pleased to report that 67% came to us through a healthcare professional referral, representing a dramatic increase from previous years. This shift reflects the growing impact of our professional engagement work and the strengthening relationship between DSUK and the clinical community.
I am enormously proud of the progress Dravet Syndrome UK has achieved this year. As we embark on the final year of our strategy, I am excited about the opportunities ahead but also mindful of the many challenges that the community continues to face. While scientific advances are moving faster than ever, they have yet to reach the day-to-day lives of families. The funding environment is increasingly constrained, and access to the support that families need is ever harder to navigate.
These challenges remain at the forefront of our minds at Dravet Syndrome UK, as we continue to grow our team and develop our services – reaching and empowering more families, educating more professionals, accelerating our research, and ensuring that the voices of those living with Dravet Syndrome are heard at every level.
## **Galia Wilson, Chair of Trustees**
**06** Dravet Syndrome UK
## **HIGHLIGHTS OF OUR YEAR**
## **For Dravet Syndrome UK 2025-2026**
## **NEW FAMILIES 34 WELCOMED**
bringing our total to more than 600 children and adults living with Dravet Syndrome across the UK
## **£120k £ RAISED**
through our Every Day in May for Dravet fundraising campaign (498 participants)
## **27 16+ ASSISTANCEFUND GRANTS**
## **FAMILIES 64 GATHERED**
awarded, supporting young adults with essential equipment and therapies
at our Annual Family Weekend Away at Center Parcs
## **BEREAVEMENT 3 GRANTS**
## **RESOURCES 7 PRODUCED**
of £1,000 provided to families within six months of losing a loved one to Dravet Syndrome
for families and professionals, including guides on mental health, schools and emergency care
**481 MEMBERS**
## **SEIZURE MONITORS 78 WERE FUNDED**
in our private Facebook support group, with over 300 active every day
providing reassurance and peace of mind to parents and carers
Annual Review 2025-2026 **07**
## **71,000 WEBSITE VISITS**
to our new website, a 92% increase following the launch of our redesigned website in February 2025
## **1.4M VIEWS ON SOCIALS**
across our channels, with 2,047 new followers gained throughout the year
## **NEWSLETTER 570 SIGN-UPS**
health and care professionals signed up to our professionals newsletter, keeping them up to date with the latest in Dravet Syndrome
## **RESEARCH 15 STUDIES**
consulted on by DSUK, with active involvement in 9 projects
## **109 ITEMS OF MEDIA COVERAGE**
including 30 items on national TV, radio or in print, raising awareness across the UK
## **PEOPLE 400 ATTENDED**
our most successful DSUK Conference to date across two days in November 2025
## **12**
## **MEDICAL MEETINGS**
Nationally and internationally attended by DSUK representatives
## **FAMILY 50+ RESPONSES**
to our Research Priority Setting Project, placing family voices at the heart of our research strategy
**08** Dravet Syndrome UK
## **SUPPORT Key Achievements**
emotionally, practically and financially
Annual Review 2025-2026 **09**
## **Family Support Services**
In 2025-26, 34 new families joined our Dravet Syndrome UK community. We now have just over 600 children and adults living with Dravet Syndrome registered with us (55% under the age of 16 and 45% young people and adults over 16) alongside more than 900 parents and carers and nearly 600 siblings, bringing our total number of beneficiaries to over 2,000.
An encouraging feature of this year's new registrations is that 67% came via a healthcare professional referral, a dramatic increase from 31% the previous year. This reflects the significant strides we have made in raising awareness of Dravet Syndrome UK amongst clinicians, and the growing impact of the SCN1A Horizons Natural History Study as a referral pathway.
We were pleased to welcome families of children and adults across the full age range (the youngest to join was six months old and the oldest was 46 years). For the first time, the majority of new joiners (73%) are aged seven or under, with children under two now the largest single segment, an encouraging early indicator that diagnosis is happening sooner. We are also seeing encouraging signs of increasing diagnosis amongst older patients, for which we continue to advocate.
_Ages of children & adults living with DS registered in the reporting period_
## **When they register with Dravet Syndrome UK, families:**
- Receive a welcome pack of information, including our Family Guide and
- Transition Guide.
- Become eligible for our grants and events.
- Gain access to our private Facebook group.
- Receive access to one-to-one advice from our Family Support team.
**10** Dravet Syndrome UK
## **New resources: empowering families and professionals with practical knowledge**
In 2025-26, we produced seven new resources to support families and professionals, developed in response to identified needs and in collaboration with our professional advisers:
## **• Revised Guide on Transition from Child to Adult Services**
This updated version of our Transition Guide supports and informs families living with a young person with Dravet Syndrome, providing practical advice on navigating the challenges of transition to adulthood and managing the impact on family life.
_Jazz Pharmaceuticals, Stoke Therapeutics, UCB and Jeans for Genes have provided funding for the Transition to Adulthood Guide via an unrestricted grant but have had no involvement in the content of the materials related with the Transition to Adulthood Guide._
## **•**
## **A Guide for Families: Your Mental Health and Accessing Support**
caring for someone with Dravet Syndrome and how to access support.
## **•**
## **A Guide for Professionals: Supporting Families' Mental Health**
toll of caring for someone with Dravet Syndrome, and how GPs, neurologists, epilepsy nurses and social care workers can better support families.
## **•**
## **A Paramedic and Ambulance Resource Pack for Emergency Services**
Dravet Syndrome in their time of need. DSUK has developed this resource pack to equip crews with essential knowledge about this rare condition.
## **•**
## **Emergency Situation Tips and Checklist for Families**
Created by parents, carers and the team at Dravet Syndrome UK, this checklist combines lived experience and expert advice to help families feel more prepared in emergency situations.
## **•**
## **GP Template Letter**
This letter can be given to GP practices to signpost helpful resources around Dravet Syndrome, including materials produced by Dravet Syndrome UK that can be made available in waiting rooms for families seeking a diagnosis or wanting ongoing support.
Annual Review 2025-2026 **11**
## **• A Guide for Teachers and Teaching Assistants**
A resource pack for teachers and their teams supporting children living with Dravet Syndrome at school, designed to help create a safe, supportive and inclusive learning environment where children with the condition can thrive.
_This activity/material has been made possible through an independent grant from Lundbeck Ltd. Lundbeck Ltd has had no role in the development, content or delivery of the material._
Feedback from families on resources such as these has consistently highlighted how practical, targeted information helps them to navigate complex systems and assert their rights.
All guides are available on our website under 'Helpful Resources' and in hard copy on request.
In addition to these utilising these resources, parents/carers and professionals can contact the charity’s Family Support Team for one-to-one advice, guidance and signposting. In 2025-2026, we provided 10 tailored support letters for parents, empowering them to assert their rights in accessing the care to which they are entitled.
## **Sibling Awards**
Our Annual Sibling Awards continue to recognise the extraordinary resilience, kindness and patience shown by brothers and sisters of those living with Dravet Syndrome. Siblings of those diagnosed with Dravet Syndrome experience so much that no child should have to face: prolonged seizures, ambulance trips, hospital stays and the challenges of living alongside such a complex condition. Yet many families tell us how remarkably loving and caring siblings can be. Our awards celebrate this, presenting recipients with gift vouchers and certificates in recognition of their very special role.
**In 2025-26, we were delighted to recognise 6 children and 3 adults with our Sibling Awards.**
**12** Dravet Syndrome UK
## **Family webinars**
In February 2025, we held a webinar for families on the topic of Clinical Trials for Dravet Syndrome in the UK, delivered by members of our Medical Advisory Board including Professor Helen Cross, Professor Andreas Brunklaus and Professor Sanjay Sisodiya. It was the most popular webinar we had held to date, with 65 people watching live.
In September 2025, SEND Consultant Alison Bull delivered a webinar providing an introductory overview of the Education, Health and Care Plan (EHCP) process, tailored specifically to the needs of children living with Dravet Syndrome. Fifteen families watched live, and as with all our webinars, the recording has been made available on our YouTube channel so that families can access it at a time that suits them.
## **Bringing families together**
## **DSUK Private Facebook Group**
Our private Facebook community continues to be a vital source of peer support, with 480 members and over 300 active every day. Activity in the group has grown significantly, with posts up 102%, comments up 138% and reactions up 109% compared to the same period last year.
_I’d be lost without Dravet Syndrome UK, mainly the Facebook group. You feel less alone._ **- Parent/Carer**
## **DSUK Annual Family Weekend Away**
The fear of not being able to access emergency medical care at all times means many families living with Dravet Syndrome rarely go on holiday. Every year, Dravet Syndrome UK provides respite in the form of a short break, by arranging an Annual Weekend Away with specialist emergency medical teams on site. This is also a rare opportunity for parents and carers, siblings and children and adults living with Dravet Syndrome to spend time with other families going through the same challenges.
We provide activities that facilitate peer support and friendships, including extensive activities focused on siblings and young carers. Crucially, Dravet Syndrome UK funds two ambulances and paramedic crews to provide 24/7 emergency medical support in case of on-site seizures, enabling families to attend with peace of mind. The weekend transforms lives by reducing isolation and building lasting connections with others who truly understand, having an impact that lasts way beyond the event itself.
In June 2025, 64 families (approximately 300 people) living with Dravet Syndrome joined us for our Annual Family Weekend Away at Center Parcs in Sherwood Forest. DSUK offered a grant of £400 per family towards the cost of the weekend to help make it as accessible as possible.
Annual Review 2025-2026 **13**
_I was always hesitant to attend because I was afraid. I didn’t want to face what might lie ahead. But in truth, there’s more fear in the unknown and in avoiding things than there is in confronting them and being informed. Looking back, I actually wish I had gone sooner._
_I leave feeling inspired by our children and how resilient they are. I feel hopeful about the future. I love seeing the adults living with Dravet and their families. There’s so much good that comes from being part of this community. Honestly, I can’t think of a single downside, aside from the harsh reality that Dravet is an awful condition. But even that is something we all deeply understand already, and that shared understanding makes the experience feel even more meaningful._ **- Parent/Carer, first-time attendee**
_Being with other families that understand is the greatest support. You can talk about the good and the bad times. It’s always a wealth of info, being ready for the next battle with other parents’ advice is brilliant._
**14** Dravet Syndrome UK
## **Family meet-ups**
In 2025-26, we launched a new programme of regional family meet-up events, responding directly to feedback from families wanting more local, year-round opportunities to connect. Building on the success of our Annual Family Weekend Away, these informal gatherings offer something different: smaller, accessible events closer to home, held in relaxed venues where parents and carers can talk freely.
by members of our Family Support team who were on hand to offer advice and signposting alongside the peer connection. The programme is designed to reach families who have not previously accessed our support, as well as those who are earlier in their diagnosis journey and may not yet know what is available to them. We will continue to develop and grow this programme in the year ahead.
**We are grateful to Jeans for Genes, the National Lottery and the Woodruffe Benson Trust for their grants which enable these activities to take place.**
## **Bereavement service**
Sadly, the risk of early death due to SUDEP (Sudden Unexpected Death in Epilepsy) in Dravet Syndrome is up to 15 times higher than in other epilepsies. Around 15-20% of children do not survive into adulthood. DSUK provides a grant of £1,000 to families registered with the charity who experience a bereavement, and through our dedicated bereavement support service we provide practical advice and emotional support for those facing the most devastating aspects of this condition.
In 2025-26, we provided three bereavement grants to families within six months of losing a loved one. Our volunteer, Debbie Dalligan, a bereaved parent who lost her own son George to Dravet Syndrome, continues to lead our bereavement support network - a private, joint forum with the US Dravet Syndrome Foundation providing a safe space for bereaved families to connect, share and feel understood.
**We are grateful once again to St James’s Place Foundation which has provided funding for our bereavement grants since 2021.**
Annual Review 2025-2026 **15**
## **Financial support**
of which are means-tested.
## **Seizure Monitor Fund**
Every family that joins Dravet Syndrome UK is entitled to a free seizure monitor. These devices detect seizures and alert parents and carers, enabling immediate emergency intervention, and for many families they provide something equally precious: the ability to sleep.
Seizure monitors are not available on the NHS despite being medically necessary, and cost between £500 and £1,500 each, which is prohibitive for families where, typically, one parent is unable to work due to full-time caring responsibilities. For parents who would otherwise spend every night listening for seizures, a monitor can be life-changing.
monitors across several product types, including pulse oximeters, Medpage monitors, the reintroduced Nightwatch monitor, video monitors and fingertip monitors.
_audible seizure. The monitor alerting us had saved her life._ **- Parent/Carer**
**We are grateful for funding from the Vinehill Trust and the Saturday Hospital Club, which has ensured we are well-placed to continue this programme into 2026 despite the increased demand.**
## **16+ Assistance Fund**
families of disabled adults. In 2025-26, we awarded 27 grants totalling £26,346, funding essential items including communication technology, sensory equipment, therapy sessions and mobility equipment. These grants make a tangible difference to the quality of life of young adults living with Dravet Syndrome and their families.
**16** Dravet Syndrome UK
## **EDUCATION Key Achievements**
We raise awareness and understanding of Dravet Syndrome
Annual Review 2025-2026 **17**
## **Raising public awareness**
In 2025-26, we secured over 70 items of media coverage raising awareness of Dravet Syndrome and our work, including high profile items on national TV, radio or in print, generating a potential reach of more than 4 billion opportunities to see and hear about Dravet Syndrome.
A highlight of the year was a feature on BBC's The One Show in April 2025, in which Britain's Got Talent star KSI surprised ten-year-old Mimi Ward to thank her for cycling from London to Paris and raising nearly £20,000 for Dravet Syndrome UK. The eight-minute segment was watched by over three million viewers and generated a surge in website visits and new followers.
LinkedIn, with 2,047 new followers gained throughout the year. Our Facebook community grew to 7,111 followers, with impressions up 91.7% and an extraordinary 537% increase in engagements compared to the same period the previous year. Our Instagram following grew by 27.8%, with impressions up 525% year-on-year.
Our new website (www.dravet.org.uk), launched in February 2025, received 71,000 visits during the year, a 92% increase on the previous year. The most visited section from social media was 'About Dravet', demonstrating that our campaigns are effectively driving new audiences to find out more about the condition.
## **Dravet Syndrome Awareness Month/Day**
June 2025 marked Dravet Syndrome Awareness Month. Continuing the 'Little Moments Matter' theme from the previous year, the campaign encompassed the launch of the Little Moments Matter Awards, the publication of new research, new resources for families and professionals, new personal stories, and a spotlight on our bereavement support.
During the month, new research conducted by the University of Glasgow in partnership with DSUK was published in the European Journal of Paediatric Neurology, revealing the significant psychological distress and PTSD symptoms experienced by parents and carers of children with Dravet Syndrome. The research, which involved 24 parents across five focus groups, highlighted the urgent need for better-informed professional practice and targeted therapeutic support. Alongside the research, we published our new mental health guides for families and professionals, giving both audiences practical guidance on recognising and accessing support.
We also published four new personal stories on our website, sharing the experiences of families living with Dravet Syndrome across different ages and stages. These stories play an important role in helping newly diagnosed families feel less alone, and in helping professionals and the wider public understand what life with Dravet Syndrome really involves. We also shone a light on our bereavement support network by sharing the story of our volunteer Debbie Dalligan, who lost her son George to Dravet Syndrome and now leads the support forum she wishes had existed for her.
**18** Dravet Syndrome UK
## **International Dravet Syndrome Awareness Day and Little Moments Matter Awards**
We celebrated International Awareness Day (23rd June) with the introduction of our new Little Moments Matter Awards, recognising health, education and social care professionals who go above and beyond for families living with Dravet Syndrome. The awards grew directly from families telling us that individual professionals had made a profound difference to their lives, and that those contributions deserved to be celebrated.
nominations received and more than 30 finalists shortlisted. Winners and highly commended recipients attended our November conference in person or virtually to receive their awards, with many meeting for the first time the families who had nominated them.
##
- Health Professional of the Year (Clinician), won by Dr Johann Te Water-Naude
- Health Professional of the Year (Nurse), won by Iona Davidson
- Education Professional of the Year, won by Tiddlers Nursery, Coventry
- Social Care Professional of the Year, won by Rebekah Wyatt
- Special Recognition for Empowering Families, won by Dr Mike Taylor
Annual Review 2025-2026 **19**
## **Lifetime Achievement Award**
A special Lifetime Achievement Award was also presented to Dr Elaine Hughes, in recognition of her pioneering role in establishing the first dedicated Dravet Syndrome clinic in the UK at Evelina London and her long-standing contribution to DSUK as an adviser and mentor.
can make. As one nominating parent said of Dr Te Water-Naude:
_He doesn't just focus on seizure control, he cares deeply about our daughter's quality of life. He listens, really listens, to us._
And of Tiddlers Nursery, who took on a newly diagnosed child without hesitation and trained their whole team:
_He is happy, safe, and developing brilliantly there._
Winners were featured in local and regional media across the UK, helping to spread awareness of Dravet Syndrome and of the importance of knowledgeable, compassionate professional support. Full details of all winners and their nominations can be found at www.dravet.org.uk/news/little-moments-matter-awards-winners-revealed
**20** Dravet Syndrome UK
**DSUK Biennial Professionals and Parent/Carer Conference 2025**
_Biocodex, Encoded Therapeutics, Harmony Biosciences, Jazz Pharmaceuticals, Liva Nova, Stoke Therapeutics and UCB have all provided sponsorship funding to DSUK in support of the Biennial Professional Day Conference. These organisations have had no involvement in the development of the conference agenda, or any of its content._
Since 2010, Dravet Syndrome UK has held a two-day biennial DSUK Conference, bringing together world-leading experts to educate professionals and caregivers on the latest developments in Dravet Syndrome. Both meetings are chaired by Professor Helen Cross OBE and feature sessions led by members of DSUK's Medical Advisory Board and guest speakers. It is the only scientific meeting in the UK dedicated to furthering knowledge about Dravet Syndrome and delivered entirely by our in-house team of staff and Trustees, with the guidance of our Medical Advisory Board.
The 2025 Conference took place on 14 and 15 November at the Pullman Hotel London. It had the highest attendance of any DSUK conference to date, with 228 parents and carers (109 in person) attending the Parents and Carers day and 172 health and care professionals (93 in person) attending the Professionals day.
remarkable pace of progress: from the discovery of the gene association in 2001 to disease-modifying therapies now entering clinical trials, and from the first clinical description of the condition in 1978 to the ongoing SCN1A Horizons Natural History Study. Prof Cross noted how research into Dravet Syndrome has catalysed broader interest in monogenic epilepsies and developmental and epileptic encephalopathies (DEE), with potential impact beyond the Dravet Syndrome community.
Annual Review 2025-2026 **21**
The remaining programme covered the full breadth of the condition across the lifespan, including sessions on improving diagnosis in both children and adults, understanding comorbidity progression, current and emerging treatments, and the latest data from DSUK co-funded research fellowships. The day concluded with updates on disease-modifying gene therapies currently in clinical trials.
The conference was accredited by both the Royal College of Physicians and the Royal College of Paediatrics and Child Health for CPD credits. Feedback from the Professionals day was outstanding.
## **practice, praised consistent speaker quality, and overall educational quality was rated excellent.**
_Every session brought the patient or family relevance to what they were presenting, which was refreshing._ **- Healthcare professional attendee**
_Yesterday's Dravet Syndrome UK Professional Conference was incredibly informative. I learned so much from the clinicians, researchers and specialists who shared their expertise. Feeling grateful for the opportunity to deepen my knowledge and improve the support I can offer in my role.”._
## **- Healthcare professional attendee**
relevant for caregivers, alongside practical breakout sessions on topics including planning for the future, navigating care assessments, living with intellectual disability\ as a family, and supporting young siblings.
## **Feedback from parents and carers was equally positive:**
_Brilliant conference with so much information and positive steps forward for the condition. Thank you to everyone for their efforts in organising and the professionals for their dedication._ **- Mother of a child with Dravet Syndrome**
_studies was really useful… Meeting other parents and carers that share the EXACT same anxieties and concerns but also the joyful moments our children give us as well is always helpful._ **- Father of a young child with Dravet Syndrome**
**22** Dravet Syndrome UK
## **Engaging health and social care professionals**
## **Health and social care professionals network**
Our professionals’ network has grown substantially this year. We now have more than 500 health and social care professionals signed up to receive our quarterly newsletter, up from approximately 50 in 2024. In addition, 162 professionals are now formally registered with DSUK, accessing our dedicated professionals’ website and resources.
communications and has contributed to the significant increase in HCP-referred families joining DSUK this year.
## **Representing the parent/carer voice**
Throughout the year, DSUK representatives attended 12 national and international medical meetings and conferences, ensuring the real-world needs and experiences of families remained central to clinical and research discussions. These included a stand at the Royal College of Paediatrics and Child Health (RCPCH) conference in Glasgow, where we spoke to over 60 professionals and signed up around 30 to our mailing list, as well as the British Paediatric Neurology Association (BPNA), the Biocodex Masterclass in Paris, the International Child Neurology Congress (ICNC), the European Dravet Conference, the International League Against Epilepsy (ILAE) Congress and the American Epilepsy Society meeting.
experiences in clinical trials, and we were invited to present at further meetings including the British Paediatric Neurology Summer Update and the European Epilepsy Congress.
We continue to be active members of key umbrella organisations including Rare Epilepsies Together UK, the Neurological Alliance, the Genetic Alliance and the European Dravet Syndrome Association. We have also been engaged in the Association of Medical Research Charities (AMRC) and joined the Charity Research Involvement Group (CRIG), a network for UK charities developing research governance best practice.
We continued to engage with pharmaceutical companies and researchers driving new treatments in Dravet Syndrome, representing the patient and caregiver perspective in research design and clinical trial planning.
Annual Review 2025-2026 **23**
## **RESEARCH Key Achievements**
Funding medical research to increase understanding of Dravet Syndrome, improve its management, work towards better outcomes and hopefully one day find a cure. **24** Dravet Syndrome UK
##
was the appointment of Ceri Hughes as DSUK's first Chief Scientific Officer in May 2025, made possible by funding from the Chan Zuckerberg Initiative through its Rare As One grant, marking a significant step change in DSUK's capacity to develop a robust, patient-led research programme and to build our scientific credibility and influence.
## **Research Priority Setting Project**
Launched at our November 2025 conference, the Research Priority Setting Project is the cornerstone of DSUK's emerging research strategy. By placing unmet needs of families at the heart of the process, we are ensuring that the research we support addresses real-world priorities.
in-depth small group discussions had been held with 14 parents of children and adults aged four to 39. The interim findings confirm strong representation across age, geography and background, closely matching our registered family profile.
##
_Dravet Syndrome UK will continue to fund studies that address the many under-researched challenges faced by families living with Dravet Syndrome. In particular, we will focus on research that improves understanding of the non-seizure aspects of the condition, life as an adult, and the wider impact on the family. We launched the project by inviting people affected by Dravet Syndrome to share the unanswered questions they most want research to address within these focus areas._
Annual Review 2025-2026 **25**
_Following this initial stage, the questions shared by families will be categorised to identify underlying priorities and developed into research themes. These themes will then be reshared with the community, who will be asked to prioritise them. The top priorities will be outlined in our research strategy, expected in summer 2026._
_We also held small group discussions with caregivers about research, to explore how we can ensure the studies we fund are accessible and meaningful to the widest possible range of families. The insights gathered through these discussions will help shape our criteria for assessing research proposals, including their suitability for the population they are intended to serve._
_given the opportunity to shape where research investment is directed. Beyond our work at Dravet Syndrome UK, we hope this project will encourage researchers and funders to pursue research that better reflects the needs of the Dravet Syndrome community._
## **Patient and public involvement and engagement (PPIE)**
DSUK is increasingly recognised as an essential partner in high-quality Dravet Syndrome research. In the period from September 2025 to January 2026 alone, we were consulted on 15 research studies and were actively involved in 9 projects.
To support this growing role, we have developed new infrastructure including dedicated tracking systems for science opportunities and external research interactions, a nearfinalised PPIE guide for researchers, and a Lived Experience Panel handbook to support families who wish to be more actively involved in research and co-design activities.
Our CSO also secured places on two steering groups, for a clinical guidelines project emerging from the SCN1A Horizons study and a biomarker development study, ensuring DSUK has input at the earliest stages of these important research initiatives.
**26** Dravet Syndrome UK
## **SCN1A Horizons Natural History Study**
DSUK continues to co-fund and support the SCN1A Horizons Natural History Study, which is anticipated to be a landmark contribution to the understanding of Dravet Syndrome and other SCN1A epilepsies.
ture comprehensive data about both the clinical and neuropsychological aspects of Dravet Syndrome and other SCN1A epilepsies. Nearly 200 children and adults were enrolled into the study by January 2026.
As well as creating a valuable resource for current care recommendations and future treatment development, its ultimate goal is to set national standards of care for everyone affected by SCN1A-epilepsies.
## **Other ongoing research projects**
**In addition to the priority setting and Horizons projects, the following research initiatives were ongoing during 2025-26:**
- A genome engineering project focused on advancing precision medicine for
- Dravet Syndrome (Dr Jenna Carpenter, UCL), part-funded by DSUK through the Epilepsy Research Institute Joint Fellowship Research Grants
- A study into autonomic dysfunction in adults with Dravet Syndrome (Dr Lisa
- Clayton, UCL), part-funded by DSUK through the Epilepsy Research Institute Joint Fellowship Research Grants
- A PhD project exploring the impact of music therapy on challenging behaviour in
- children with Dravet Syndrome
##
health, which was awaiting publication at the close of the financial year. This builds on a series of publications in previous years exploring the lived experience of families, providing an important evidence base for our advocacy work.
Annual Review 2025-2026 **27**
## **Community Fundraising**
Community fundraising remains central to our ability to deliver our mission, and we are continually inspired by the generosity and determination of those who fundraise on our behalf.
## **Every Day in May 2025**
We are deeply grateful to the many dedicated community fundraisers who raised funds for Dravet Syndrome UK throughout 2025-26. Behind every donation is a family who knows first-hand what Dravet Syndrome means, and a determination to ensure other families do not face it without support.
Our Every Day in May for Dravet campaign returned in May 2025, with nearly 500 participants running, walking, cycling and swimming a daily 2k or 5k throughout the month. Our heartfelt thanks go to Tamara (Tats) Ward and her family, who continue to champion the campaign with extraordinary energy and commitment. Tats also set a new world record at the Royal Parks Half Marathon for the fastest time to complete it while hula-hooping, generating coverage on BBC Radio Oxford, BBC South Today and ITV News Meridian.
**28** Dravet Syndrome UK
**The stories behind our Every Day in May fundraisers are a powerful reminder of why Dravet Syndrome UK’s work matters.**
Anne Seager from the Forest of Dean took on the 5k-a-day challenge in support of her 26-year-old son Rudy, who has lived with Dravet Syndrome since his first seizure at ten weeks old. As Anne put it:
_I'm doing this because Dravet Syndrome UK has been so helpful to me and my son and this is my way of giving back._
Orion, who scootered beside her when he was well enough. Reniece spoke candidly about the toll of caring for a child with a complex condition:
_The emotional impact of Orion’s diagnosis has been immense, and like so many other parents of children with complex needs. I am incredibly grateful for where he is right now – but I've seen how devastating this condition can be, and how urgently more research, understanding, and family support is needed. All donations are greatly appreciated and make such a huge difference._
Annual Review 2025-2026
**29**
## **‘Love Is…’ Regular Giving Campaign**
on the story of five-year-old Etta and her parents Lucie and Jo. It marked an important step in building a more sustainable base of regular supporters, whose ongoing commitment helps us plan ahead and reach families when they need us most.
emergency bag always by the door, medication alarms punctuating the day and trips carefully planned by the nearest hospital. Simple acts, even tucking Etta into her bed at night, can be fraught with worry and heartache. This is the devastating reality for families who are living with Dravet Syndrome.
a Bronze Award at the Smiley Charity Film Awards (April 2026).
## **Individual Fundraising**
We are incredibly fortunate that our families, their extended families and their friends continue to raise funds and awareness for us throughout the year. Despite the downturn in the economy, our fundraisers ran marathons, baked cakes, organises quizzes and golf days – all providing vital funds for the organisation.
## **London Marathon**
We have secured charity places for the London Marathon for 4 years. Whilst the financial impact is for future years, this is likely to become one of our annual cornerstone community fundraising events.
**30** Dravet Syndrome UK
## **Corporate Fundraising**
This year marked the end of our long-standing partnership with **XTX Markets** , who completed the third and final year of their three-year corporate sponsorship agreement with DSUK. We would like to take this opportunity to thank XTX Markets wholeheartedly for eight years of corporate partnership, which has played an important role in supporting the charity's growth and enabling us to reach more families, educate professionals and invest in our research programme. Their commitment across the final five years of our 2021-2026 strategy has been particularly significant, helping to fund a period of real organisational transformation.
**We are now actively seeking new corporate partners to help us continue to build upon this work.**
If your organisation shares our commitment to improving the lives of families living with Dravet Syndrome, we would love to hear from you. Please contact us at info@dravet.org.uk.
## **Pharmaceutical Industry Partnerships**
We are grateful for continued support from the pharmaceutical industry and medical devices sector in the form of grants and sponsorship that enable our mission of improving the lives of all those affected by Dravet Syndrome. We maintain strict independence in everything we do and align with the ABPI code of practice.
- Biocodex, Encoded Therapeutics, Harmony Biosciences, Jazz Pharmaceuticals, Liva
- Nova, Stoke Therapeutics and UCB all provided sponsorship funding to DSUK in support of the Biennial Professional Day Conference. These organisations had no involvement in the development of the conference agenda, or any of its content.
- Jazz Pharmaceuticals, Stoke Therapeutics, and UCB, along with Jeans for Genes,
- provided funding for the Transition to Adulthood Guide via an unrestricted grant but had no involvement in the content of the materials related with the Transition to Adulthood Guide.
- Our Guide for Teachers and Teaching Assistants was made possible through an
- independent grant from Lundbeck Ltd. Lundbeck Ltd had no role in the development, content or delivery of the material.
Annual Review 2025-2026
**31**
## **Support from Grant-Making Trusts**
## **In the past year we were delighted and hugely grateful to be awarded grants from:**
- The Baily Thomas Charitable Fund to support our family services
- gatherings project
- Vinehill Trust and The Lennox Hannay Charitable Trust for contributions towards
- our Seizure Monitor Fund
- The D’Oyly Carte Charitable Trust for their support of our 2026 Annual Family Weekend
- St James’s Place Charitable Foundation for helping to fund our bereavement grants since 2021
We are also grateful to several other organisations for their continued generosity. We will continue to develop our trusts and foundations programme as a key component of our long-term income diversification strategy.
## **CZI Rare As One Network**
Zuckerberg Initiative’s Rare As One network. In addition to receiving a five-year capacity building grant to help accelerate our research and scientific engagement activities, we were pleased to benefit from multiple training opportunities offered by the network, and to collaborate with other international and US-based patient organisations.
**32** Dravet Syndrome UK
strategy, and it has been a period of significant strategic investment and progress. We have continued to build our team, our infrastructure and our reputation, and we enter the final year of the strategy with a clear picture of what we have achieved and what remains to be done.
## **year (2026-2027).**
## **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.
The launch of a redesigned, user-tested website in February 2025 has driven a 92% uplift in visits. The installation of a new Customer Relationship Management (CRM) system in the same month has enabled us to better understand the demographics and needs of our community, as well as target our outreach more effectively. The appointment of Rachel Yetton as Head of Family Services in March 2026 strengthens our capacity to grow family support activities and to extend our reach beyond the families who currently engage with us.
##
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.
Dravet Syndrome UK is well respected among clinicians, researchers and industry alike. Our standing was further strengthened in 2025-2026 with the appointment of our first Chief Scientific Officer, enabling DSUK to move from a primarily facilitative research role to an organisation with genuine in-house scientific leadership. The Research Priority Setting Project will result in the publication of our first patient-led Research Strategy in 2026. Meanwhile, our ongoing participation in the landmark SCN1A Horizons Natural History Study and numerous other projects exemplifies our role in ensuring that the lived experience and voice of patients and caregivers is at the heart of current conversations about Dravet Syndrome.
Annual Review 2025-2026 **33**
## **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.
We have made strong progress in engaging and educating health and social care professionals. Our Biennial Professional Conference continues to go from strength to strength, and we have substantially grown both subscribers to our HCP Newsletter and the number of registered professionals. The Little Moments Matter awards demonstrates that we are not only a source of expertise for professionals, but also where good practice is identified and celebrated. Referrals from healthcare professionals have transformed, with 67% of new families in 2025-2026 coming via HCP referral, up from 31% the previous year. Social care engagement remains a gap which we are well-placed to address in the coming year with the appointment of our new Head of Family Services.
## **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.
We know that families continue to face profound systemic challenges, particularly around navigating statutory services. As part of our core family support offering, we provide emotional and practical advice aimed at helping parents resolve the many complex issues they face day to day. We will continue to develop practical resources and collaborate with clinicians and researchers to build an evidence base that clearly articulates the specific unmet needs of families living with Dravet Syndrome.
and to continuing our mission to bring hope to families through support, education and medical research.
**34** Dravet Syndrome UK
## **FINANCIAL REVIEW**
## **Incoming Resources**
## **Dravet Syndrome UK received income from the following sources:**
**----- Start of picture text -----**
2026 £ 2025 £
Community fundraising 307,299 448,185
Industry grants 75,922 35,466
Corporate sponsorship 38,844 52,835
Grants from Trusts/Foundations 194,696 8,000
Income generation 23,525 17,496
Total 640,286 561,982
**----- End of picture text -----**
## **Outgoing Resources**
In 2025-2026, DSUK spent £735,372 delivering its charitable objectives (2024-2025: £796,545).
## **During this reporting period, costs were incurred in respect of the following:**
- Seizure monitors, 16+ Assistance Fund and Bereavement Grants
- Family support events, including the Annual Family Weekend Away at Center Parcs
- and regional family meet-ups
- Educational and awareness raising materials, including our new website, resources for families and professionals, social media and video content
- Meetings with expert clinicians, researchers and the pharmaceutical industry to develop research opportunities and represent the patient/caregiver voice
- Support for the SCN1A Horizons Natural History Study and co-funded research projects
- DSUK Professionals and Family Conference in November 2025
- and Head of Family Services, to facilitate delivery of our long-term strategy
- throughout the year
- Dravet Syndrome UK merchandise for fundraising events and shop sales
Annual Review 2025-2026 **35**
## **Reserves Policy**
cial year to meet any reasonably foreseeable contingency. The Board of Trustees reviews the reserves policy annually.
level of three months’ normal operating expenditure. This reflects the Board’s assessment of the charity’s current financial position, expenditure commitments (including plans for continued strategic growth) and the importance of maintaining continuity of services to families affected by Dravet Syndrome. Based on our current forecasts for 2026–2027, three months of normal operating expenditure (excluding one-off expenditure and fully funded projects) would be approximately £130,000.
As at 31 January 2026, the unrestricted free reserves of the charity stood at £207,960, representing approximately 4.8 months of normal operating expenditure and exceeding the Board’s minimum target. Should free reserves fall below this level, the Board will review the position and take appropriate action.
**----- Start of picture text -----**
2026 £ 2025 £
Unrestricted funds 211,292 305,878
Less: Designated funds – –
Less: Net book value of tangible fixed (3,832) (1,271)
assets
Free reserves 207,460 304,607
**----- End of picture text -----**
**The Trustee’s Annual Report was approved on** 10/07/2026
**And signed on behalf of the Board of Trustees by**
**A Williams Trustee and Treasurer**
10/07/2026
**Date of signature**
**36** Dravet Syndrome UK
Dravet Syndrome UK
Independent Examiner's Report to the Trustees of Dravet Syndrome UK
Year Ended 31 January 2026
I report lo the trustees on my examination of the financial statements of Dravet Syndrome UK I'the
charity'l for the year ended 31 January 2026.
Responslbllltles and basls of report
As the trustees of the charity you are responsible for the preparation of the financial statements in
accordanTr with the requirements of the Charities Act 2011 I'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{5llbl 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 confim that l am qualified lo undertake the examination
because l am a member of the Institute of Chartered Accountants in England and Wales IICAEWI,
which is one of the listed bodies.
I have completed my examination. I confirm that no material matters have come lo my attention in
connection with the examination giving me Cause to believe that in any material respect..
accounting records were not kept in respect of the charity as required by section 130 of the
Act., or
the financial statements do not accord with those records., or
the financial slalements do not comply with the applicable requirements conMIng the
form and content of acwunts set out in the Charities (Accounts and Reports) Regulations
2008 other than any requirement that the accounts give a 'lrue and fair. view which is not a
matter considered as part of an independent examination.
I have no concems 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.
D Waining FCA
Independent Examiner
Date.. 1310712026
Annual Review 2025-2026 37
Dravet Syndrome UK
Statement of Financial Activities (Incorporating Income and Expenditure
Account)
Year Ended 31 January 2026
2026
Reslricled
funds Totsl funds
2025
Unrestricted
funds
Total funds
Note
Income
Donations and grants
Charitable activities
Other trading activities
Investment income
Other income
341,196
5,910
7,683
4,013
5,919
275,565
616,761
5,910
7,683
4,013
5,919
544,486
5,755
2,303
9,438
Totsl income
364,721
275,565
640.286
561,982
Expenditure
Expenditure on raising funds..
Costs of raising donations and
grants
Costs of other trading activities
Expenditure on charitable activities
Total expenditure
149,5711
150,026)
163,3541
13,6681
13,668
14,3391
1399,1501 1282,5281 {681,678) 1728,8521
1452.3891 1282,9831 {735,372) 1796,5451
14551
10
11
Net gxpgnditurg
187,6681
17,4181
195,086) 1234,5631
Transfers between funds
16,9181
6,918
Net movement Sn funds
194,5861
15001
195.086)
1234,5631
Reconciliation of funds
Total funds brought forward
Total funds carried forward
305,878
1,000
306.878
541,441
211,292
500
211,792
306,878
The slalemenl of financial activities includes all gains and losses recognised in the year.
All income and expenditure derive from continuing aclivilies.
The notes on pages 41 to 52 fom) part of these financial statements.
38 Dravet Syndrome UK
Dravet Syndrome UK
Statement of Financial Position
31 January 2026
2026
2025
Note
Fixed Assets
Tangible fixed assets
18
3,832
1,271
Current Assets
Stocks
Debtors
Cash al bank and in hand
19
20
14.245
69.219
326,682
7,741
66,336
446,425
410,146
520,502
Creditors: amounts falling due within one year
Net Current A$$et$
21
1202.1861
1214,8951
305,607
207,960
211.792
Total Assets Less Current Liabilities
306,878
Net Assets
211,792
306,878
Funds of the Charity
Reslricled funds
Unrestricted funds
500
211.292
1,000
305,878
Total charityfunds
24
211,792
306,878
These financial slalemenls were approved by the board of trustees and aulhorised for issue on
1010712026
and are signed on behalf of the board by..
A Williams
Trustee
The notes on pages 41 to 52 fom) part of these financial statements.
Annual Review 2025-2026 39
Dravet Syndrome UK
Statement of Cash Flows
Year Ended 31 January 2026
2026
2025
Cash Flows from Operating Activities
Net expenditure
195,086) 1234,5631
Adjustments for..
Depreciation of tangible fixed assets
Other interest receivable and similar income
Interest payable and similar charges
1,874
{4.013)
114
1,120
12,3031
139
Changes in..
Stocks
Trade and other debtors
Trade and other creditors
16.504)
12.8831
112.709)
{119,207)
4,648
118,7391
199,049
Cash generated from operations
150,6491
Interest paid
Interest received
{114
4,013
{115,308)
11391
2,303
148,4851
Net cash used in operating activities
Cash Flows from Investlng Actlvltles
Purchase of tangible assets
Net cash used in investing activities
{4.435)
{4,435)
11,3651
11,3651
Net Decrease in Cash and Cash Equivalents
Cash and Cash Equivalents at Beginning ofyear
Cash and Cash Equivalents at End of Year
{119,743)
446,425
149,8501
496,275
326.682
446,425
The notes on pages 41 to 52 fom) part of these financial statements.
40 Dravet Syndrome UK
Dravet Syndrome UK
Notes to the Financial Statements
Year Ended 31 January 2026
General information
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.
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 lo charities preparing their accounts in accordance with the
Financial Reporting Standard applicable in the UK and Republic of Ireland IFRS 1021 (Charities
SORP IFRS 102}l and the Charities Act 2011.
Accounting policies
Basis of preparation
The financial statements have been prepared on the historical cost basis.
The financial statements are prepared in steding, which is the functional currency of the entity.
The charity meets the definition of a public benefit entity under FRS102.
Going concern
The Iruslees have prepared and reviewed budgets and are confident that these show that the
charity is able lo 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 lo adopt the
going concem basis of accounting in preparing the financial statements.
Judgements and key sources of estimation uncertainty
In application of the charitys accounting policies, the trustees are required to make judgements,
estimates and assumptions about the carying 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 eslimales. The estimates and underlying assumptions are reviewed on an ongoing basis.
The Iruslees 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 heen raised for particular
purposes. Any costs of raising and administering such funds are charged against the specific
fund.
Annual Review 2025-2026 41
Dravet Syndrome UK
Notes to the Financial Statements [¢¢11ned)
Year Ended 31 January 2026
Accounting policies (continuedj
Incomlng 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..
income from donations or grants is recognised when there is evidence of entillemenl lo the gift
or grant, receipt is considered probable and ils amount can be measured reliably.
income from the sale of merchandise is recognised at the point of sale.
income from donated seNices and facilities are recognised as income when the charity has
control over the item, any conditions associated with the donated item have been met, the receipt
of economic benefit from the use by the charity of the item is probable and that economic benefit
can be measured reliably.
Resources expended
Expenditure is recognised on an accruals basis as a liability is incurred.
Expenditure on raising funds includes the costs of all fundraising aclivilies, events, non-charitable
trading activities, and the sale of purchased and donated goods.
Expenditure on charitable activities includes all costs incurred by the charity in undertaking
activities that further its charitable aims for the benefit of ils beneficiaries, including those support
costs and costs relating to the governance of the charity apportioned lo 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..
Fixtures, fittings, equipment
Computer equipment
25'/o Straight line
330/0 Straight line
Stocks
stocks of goods for resale are measured at the lower of cost and net realisable value.
Financial instruments
Debtors and creditors with no stated interest rale and receivable or payable within one year are
recorded at transaction price. Any losses arising from impairment are recognised as such in the
statement of financial activities.
42 Dravet Syndrome UK
Dravet Syndrome UK
Notes to the Financial Statements [¢¢11ned)
Year Ended 31 January 2026
Accounting policies (continuedj
Penslons
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.
Donatlons and grants
Unrestricted
Funds
Restricted Total Funds
Funds
2026
Donations
Donations
339,696
7,446
347.142
Grants
DSUK conference
Seizure monitors
Bereavement grants
Family support
CZ Rare As One funding
Education Packs
Audio Equipment
Webinar
Little Moments Maller
68,709
5,012
2,500
21,793
163,532
4,414
1,860
299
68.709
5.012
2.500
21.793
163,532
4.414
1.860
299
1.500
1,500
341,196
275,565
616,761
Unrestricted
Funds
Reslricled Total Funds
Funds
2025
Donations
Donations
498,014
3,006
501,020
Grants
DSUK conference
Seizure monitors
Bereavement grants
Professional website development
Transition Guide
CZ Rare As One funding
2,000
2,000
18,000
15,500
5,966
2,000
2,000
18,000
15,500
5,966
498,014
46,472
544,486
The Iruslees confirm that the above restricted income recognised in respect of the DSUK
Conference 2025 in the current period is compliant with The Association of the British
Pharmaceutical Industry Code of Practice.
Annual Review 2025-2026 43
Dravet Syndrome UK
Notes to the Financial Statements [¢¢11ned)
Year Ended 31 January 2026
Charitable activities
Unrestricted Total Funds Unrestricted Total Funds
Funds
2026
Funds
2025
DSUK conference lickel income
5,910
5.910
Other trading activities
Unrestricted Total Funds Unrestricted Total Funds
Funds
2026
Funds
2025
Merchandise sales
7,683
7.683
5,755
5,755
Investment Income
Unrestricted Total Funds Unreslricled Total Funds
Funds
2026
Funds
2025
Bank interest re1vable
4,013
4.013
2,303
2,303
Other income
Unrestricted Total Funds Unrestricted Totsl Funds
Funds
2026
Funds
2025
Consultancy services
Sundry fundraising activities
5,919
5,919
7,917
1,521
7,917
1,521
5,919
5.919
9,438
9,438
Costs of raising donations and grants
Unrestricted
Funds
Restricted Total Funds
Funds
2026
Event costs
Wages and salaries
Employerfs NIC
Pension costs
Merchandise used for fundraising
Just Giving charges
3,952
34,659
3,022
766
755
6,417
455
4,407
34,659
3,022
766
755
6,417
49,571
455
50.026
44 Dravet Syndrome UK
Dravet Syndrome UK
Notes to the Financial Statements [¢¢11ned)
Year Ended 31 January 2026
Costs of raising donations and grants (Continued)
Unrestricted
Funds
Restricted Total Funds
Funds
2025
Event costs
Wages and salaries
Employer's NIC
Pension costs
Merchandise used for fundraising
Just Giving charges
12,905
32,040
2,253
651
5,833
9,672
12,905
32,040
2,253
651
5,833
9,672
63,354
63,354
10. Costs of other trading activities
Unrestricted Total Funds Unrestricted Total Funds
Funds
2026
Funds
2025
Opening merchandise stock
Merchandise purchases
Merchandise used for fundraising
Closing merchandise stock
7,219
10,585
17551
113,3811
3,668
7.219
10.585
17551
(13.3811
3.668
11,240
6,151
15,8331
17,2191
4,339
11,240
6,151
15,8331
17,2191
4,339
11. Expenditure on charitable activities by activity type
Activities
undertaken
directly
Support Total funds
costs
2026
Total fund
2025
Research funding
Raising awareness
Supporting families
Govemance costs
2,241
457,972
127,921
9,069
22,061
6,162
56,252
11,310
480,033
134.083
56,252
681.678
210,317
252,684
199,908
65,943
588,134
93,544
728,852
12. Analysis of support costs
Analysis of
support costs
charitable
activities Total 2026 Total 2025
Staff costs
Communications and IT
General office
Human resources
Finan costs
Governan costs
10,455
16,230
3,318
7,175
114
56,252
10,455
16.230
3.318
7.175
114
56.252
28,289
105,018
2,937
7,895
139
65,943
93,544
93,544
210,221
Annual Review 2025-2026 45
Dravet Syndrome UK
Notes to the Financial Statements [¢¢11ned)
Year Ended 31 January 2026
13. Net expenditure
Net expenditure is slated after chargingllcreditingl..
2026
2025
Depreciation of tangible fixed assets
1,874
1,120
14. Independent examination fees
2026
2025
Fees payable to the independent examiner for..
Independent examination of the financial statements
4.200
3,900
15. Staff costs
The lolal stsff costs and employee benefits for the reporting period are analysed as follows..
2026
2025
Wages and salaries
Social security costs
Employer contributions to pension plans
275.760
24,075
6.103
200,411
14,095
4,070
305,938
218,576
The average head count of employees during the year was 912025= 71.
The number of employees whose remuneration for the year fell within the following bands, were:
2026
No.
2025
No.
£60,000 10 £69,999
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 lo key
management personnel for services provided to the charity was £63,321 12025.. £57,971).
16. Trustee remuneration and expenses
No muneratIon or other benefits from employment with the charity or a related entity were
received by the trustees.
There are 3 Iruslees12024.'41 that claimed expenses or had their expenses mel by the charity as
follows..
2026
2025
Travel
Hotel and Subsistence
6.997
527
1,264
91
7.524
1,355
46 Dravet Syndrome UK
Dravet Syndrome UK
Notes to the Financial Statements [¢¢11ned)
Year Ended 31 January 2026
17. Transfers between funds
A transfer of £6,91812025.. £4,451) was made from unrestricted funds to restricted funds during
the year. This transfer was to cover expenditure incurred in excess of amounts received for the
ststed purpose.
18. Tangible fixed assets
Fixtures and
fillings
Equipment
Total
Cost
At 1 February 2025
Additions
490
7,177
4,435
7.667
4.435
At 31 January 2026
Depreciation
At 1 February 2025
Charge for the year
At 31 January 2026
Carrylng amount
At 31 January 2026
At 31 January 2025
11,612
12.102
489
5,907
1,874
6.396
1.874
489
7,781
8,270
3,831
3,832
1,270
1,271
19. Stocks
2026
2025
Merchandise and consumables
Monitors
13,381
864
7,219
522
14,245
7,741
20. Debtors
2026
2025
Prepayments and accrued income
69,219
66,336
21. Creditors.. amounts falling due within one year
2026
2025
Accruals and deferred income
Social security and other taxes
Other creditors
116,671
7,039
78,476
202,186
85,466
2,932
126,497
214,895
Annual Review 2025-2026 47
Dravet Syndrome UK
Notes to the Financial Statements [¢¢11ned)
Year Ended 31 January 2026
22. Deferred income
2026
2025
At 1 February 2025
Amount released to income
Amount deferred in year
At 31 January 2026
78,115
178.115)
110.376
78,115
110,376
78,115
Defee income at the year*nd represents funding received where entitlement lo the income
has not yet passed lo the charity at that date.
23. Pensions and other post-retirement benefits
Deflned contrlbutlon plans
The amount recognised in income or expenditure as an expense in relation to defined
contribution plans was £6,103 {2025.. £4,070).
48 Dravet Syndrome UK
Dravet Syndrome UK
Notes to the Financial Statements [¢¢11ned)
Year Ended 31 January 2026
24. Analysis of charitable funds
Unrestrlcted funds
At1
February
2025
At31
January
2026
Income Expenditure
Transfers
General funds
305,878
364,721
1452,3891
1452,3891
16,9181
16,9181
211.292
305,878
364,721
211.292
At1
February
2024
A131
January
2025
Income Expenditure
Transfers
General funds
Customer Relationship
Management system
Designated strategic
growth fund
Designated Center
Parcs 2024 fund
Website development
fund
Research fund
307,269
515,510
1538,9681
22,067
305,878
61,650
{35,1321
126,5181
3,684
13,6841
27,333
{27,3331
23,000
83,333
{23,0001
{83,3331
1711,4501
506,269
515,510
14,4511
305,878
Annual Review 2025-2026 49
Dravet Syndrome UK
Notes to the Financial Statements [¢¢11ned)
Year Ended 31 January 2026
24. Analysis of charitable funds (continued)
Deslgnated Funds
Customer Relationship Management {"CRM"I fund
The Trustees designated £61,650 of unreslricled funds lo the planned implementation of a CRM
system in the comparative period to enable the charity lo deliver against its strategic objectives,
in line with the forecast costs of the project. The project was completed in the comparative period
and the system was brought into use eady in the 2025-2026 financial period.
Website development fund
Prior to the current period the Trustees designated £35,000 of unreslricled funds towards the
planned implemenlalion of development work to improve the charity's website for the benefit of
all users, in line with the forecast costs of the project. The enhanced website was completed and
brought into use eady in the 2025-2026 financial period.
Center Parcs 2024 event fund
During the comparative period the charity Trustees decided lo designate an unreslricled donation
from Wilmington Trust of £27,333 to meet the cost of family grants paid lo service users lo help
fund their costs of attending the Cenler Parcs event in June 2024. The funding was fully utilised
during the comparative period.
Rgsgarch fund
In the 2024-2025 financial year the charity entered into an unconditional commitment lo fund
£176,998 of reSe8h into Dravet Syndrome lo be carried out by Epilepsy ReSeah Inslilule UK.
This fully utilised funds of £83,333 previously designated from unreslricled reserves for this
purpose.
Restricted funds
At1
February
2025
At31
January
2026
Income Expenditure
Transfers
Bereavement grants
Monitors
Chan Zuckerbery Rare
As One
DSUK confence 2025
Gene Therapy
Family Networks and
Gatherings
Family Support Services
Webinar
Access 2 Work
Education Packs
1,000
2,500
10,012
13,0001
{10,0121
500
163,532
68,709
2,446
1163,5321
{77,4871
12,4461
8,778
6,793
15,000
299
1,860
4,414
16,7931
{15,0001
12991
11,8601
14,4141
1282,9831
1,000
275,565
6,918
500
SO Dravet Syndrome UK
Dravet Syndrome UK
Notes to the Financial Statements [¢¢11ned)
Year Ended 31 January 2026
24. Analysis of charitable funds (continued)
At1
February
2024
A131
January
2025
Income Expenditure
Transfers
Research
Bereavement grants
Website development
Center Parcs 2024
Music therapy research
Monitors
Transition Guide
Chan Zuckerberg Rare
As One
25,464
3,006
2,000
18,000
{28,4701
11,0001
{30,2591
1,000
12,259
14,4511
1,000
900
4,451
11,0001
12,9001
{15,5001
2,000
15,500
5,966
15,9661
{85,0951
35,172
46,472
4,451
1,000
In the reporting year, the charity was able lo source funding from a number of pharmaceutical
companies to fund the 2025 DSUK Conference. This funding included grants from Encoded
Therapeutics, Stoke Therapeutics, Takeda Pharmaceuticals. Jazz Pharmaceuticals, Biocodex,
Harmony Biosciences and UCB.
Grants were received from several charitable trusts lo fund the charity's family support activities
and lo fund family gatherings.
The charity also continued lo receive financial support from ils corporate partner, XTX Marf(ets.
Annual Review 2025-2026 51
Dravet Syndrome UK
Notes to the Financial Statements [¢¢11ned)
Year Ended 31 January 2026
25. Analysis of net assets between funds
Unrestricted
Funds
Restricted Total Funds
Funds
2026
Tangible fixed assets
Current assets
Creditors less than 1 year
Net assets
3,832
409,646
1202,1861
211,292
3,832
410.146
1202.1861
211.792
500
500
Unrestricted
Funds
Restricted Totsl Funds
Funds
2025
Tangible fixed assets
Current assets
Creditors less than 1 year
Net assets
1,271
519,502
1214,8951
305,878
1,271
520,502
1214,8951
306,878
1,000
1,000
26. Analysis of changes in net debt
At1
February
2025 Cash flows
At31
January
2026
Cash at bank and in hand
446,425
{119,7431
326,682
27. Related parties
No transactions with related parties occurred in either the current or comparative years which
require disclosure within these financial statements.
52 Dravet Syndrome UK
**Dravet Syndrome through support, education and research**
**Dravet Syndrome UK** PO Box 756, Chesterfield, S43 9EB **T:** 01246 912 421 **E:** info@dravet.org.uk
www.dravet.org.uk Registered charity number: 1128289