2025-03-31-accounts - Cdkl5 UK

This text was generated using OCR and may contain errors. Check the original PDF to see the document submitted to the regulator.

CDKL5 UK (REGISTERED NUMBER: 1207922)

Report of the Trustees

for the year ended 31 March 2025

OBJECTIVES AND ACTIVITIES

Objectives and aims, including public benefit

CDKL5 UK was launched in September 2012 under charity number 1149099 as a unincorporated charity, this charity was closed down in April 2024 and we formed a Charitable Incorporated Organisation in the same month. CDKL5 UK continues to be leading charity in the United Kingdom dedicated to transforming the lives of individuals and families impacted by CDKL5 Deficiency Disorder (CDD); a rare and challenging genetic condition. Our recent rebranding reflects our dual commitment: providing vital support to families today whilst driving relentlessly towards a cure for tomorrow. Our new charity structure embodies our comprehensive approach and unwavering dedication to the CDD community.

CDKL5 Deficiency Disorder (CDD) is an X-linked genetic condition characterised by it’s early onset and profound impact on brain development, leading to seizures that can range in severity from mild to severe. Once considered extremely rare, increasing awareness and diagnostic capabilities means more children and adults are being identified with CDD every day.

The presentation of CDD is highly individual; no two people experience the condition in precisely the same way, with symptoms spanning a wide spectrum from mild to severe. For many, life begins with challenging seizures appearing in the first few months, often proving difficult to control with existing NHS-available medications. Yet, it's important to note that some individuals experience milder, wellmanaged seizures, and a small number may not have seizures at all.

Beyond epilepsy, CDD commonly results in significant physical and cognitive impairments. Many individuals are unable to walk independently, communicate verbally, or feed themselves, necessitating constant care and support for daily activities. We also frequently observe co-occurring conditions such as scoliosis, visual impairments, heightened sensory sensitivities, and complex gastrointestinal issues, highlighting the multi-systemic nature of the disorder.

Our mission is to provide help and support to individuals and families affected by CDD.

Our vision is a world in which CDD and its effects are overcome by way of effective treatments an ultimately, a cure.

SUMMARY OF ANNUAL PERFORMANCE: 2024-2025

CDKL5 UK delivers its strategic priorities:

Supporting the CDD community on all aspects of the condition
Providing up to date information and resources to the CDD community
Being at the forefront of the CDD research agenda
Increasing the charity’s operating deficit

OBJECTIVES AND ACTIVITIES

Page 1 of 10 REGISTERED CHARITY NUMBER (ENGLAND AND WALES): 1207922

Purpose and Strategy

CDKL5 UK has 3 main charitable objectives:

Support and empower individuals with CDD, and their families, and carers
Raise awareness of and provide information about CDD
Educate professionals who care for individuals with CDD

CDKL5 UK is beginning a new 3 year strategy (2025-2028) which sets out a clear vision of a world where CDD and its effects are overcome by way of effective treatments and ultimately, a cure.

The Aims, Objectves, Enablers and Values that deliver the strategy

Our strategic aims are to:

Make a positive impact on the physical, mental and emotional health and wellbeing of people living with CDD, and their families, and carers
To raise awareness of CDD and its effects within the NHS, and within other medical and social care services and organisations
To provide up to date and relevant information about the condition
To support the UK and global research effort
To provide a patient and public involvement (PPI) platform to empower individuals and families to be involved in the UK research landscape

Our strategic objectves (how we will do it) are to:

Deliver quality, easily accessible and timely information about CDD, and what it’s like to live and care for someone with the condition
Provide opportunities for people living with CDD, and their families to connect, support and learn together
Build the knowledge and expertise of professionals working with individuals, families, and carers with CDD
Drive the research agenda, in particular providing a PPI platform, to improve outcomes and quality of life for people with CDD, their families, and carers
Expand our understanding of the condition to accelerate diagnosis, intervention, and the development of new treatments
Disseminate and use evidence to influence NHS policy and practice
Campaign for better access to treatments and care from the NHS
Support the development and functionality of centres of excellence for supporting people with CDD, their families, and carers

Our strategic enablers that make it possible are:

Effective teamwork by trustees and staff together to achieve a shared vision
Strong partnerships with other organisations and centres of excellence
Digital transformation and smart working to distribute high quality and up to date information to more people
Strong working relationships between staff and external contractors to help drive organisational growth
Having values that are inclusive, honest and ambitious

Page 2 of 10 REGISTERED CHARITY NUMBER (ENGLAND AND WALES): 1207922

WELCOME

As Chair of Trustees, my commitment to CDKL5 UK is both personal and unwavering. Rooted in lived experience and guided by the voices of families, this role carries a deep responsibility to ensure that our charity remains credible, compassionate, and forward-thinking. Over the past year, we have focused on strengthening governance, amplifying family-led priorities, and supporting research, clinical excellence, and community connection across the UK and beyond. I am proud of the resilience, integrity, and collective determination that defines CDKL5 UK, and I remain committed to leading with transparency, collaboration, and an unrelenting focus on improving quality of life for those affected by CDKL5 deficiency disorder.

HIGHLIGHTS OF OUR YEAR

In 2024-2025, CDKL5 UK:

Transitioned to a Charitable Incorporated Organisation (CIO)
Welcomed our first employee – Development and Engagement Champion
Continued to fund the role of Research and Care Coordinator
Continued to fund vCreate – a secure video messaging service for healthcare teams at Bristol Children’s Hospital
Updated our website including our Trustees page, Staff information, Fundraising, and Support pages
Developed 3 new mini guides, for community fundraising, newly diagnosed families and young siblings
Engaged the community in our June Awareness Month, sharing stories and artwork from 20 different families
Shared 2 community newsletters with 47 newsletter subscribers
Funded a customer relationship management (CRM) system if which we have 76 registered individuals
Established a research volunteer network – CDKL5 Research Champions
Provided 3 bespoke training workshops to health and social care professionals
Delivered 3 presentations about CDD to pharmaceutical companies
Supported 4 individuals, through our partnership with Rareminds
Supported our community to raise in excess of £20k via Just Giving
Trustees have attended 9 events, both UK and abroad to raise awareness of CDD

STRATEGIC GROWTH AND LOOKING FORWARD

Funding Roles

In December 2024, CDKL5 UK invested in strategic growth as part of the new move into a CIO.

Development and Engagement Champion

At the end of 2024, we appointed our first member of staff - Development and Engagement Champion, Bethan Vaughan - and we have seen the impact of this expertise and increased resource throughout the year.

CDKL5 Research and Care Coordinator

We continue to fund the role of CDKL5 Research and Care Coordinator at the CDKL5 Centre of Excellence at University Hospitals Bristol and Weston NHS Foundation Trust. The CDKL5 community,

Page 3 of 10 REGISTERED CHARITY NUMBER (ENGLAND AND WALES): 1207922

while small, faces an incredibly high level of medical and social complexity. Traditional and often fragmented healthcare systems are simply not designed to meet these highly specialised needs, leaving families to navigate a challenging journey alone. The CDKL5 Research and Care Coordinator role was specifically created to fill this vital gap.

The main responsibilities pf this role are direct family support, research and clinical coordination, and professional training, including:

Coordinating and booking appointments with the CDKL5 Clinical Lead, Prof Amin, at the CDKL5 Centre of Excellence.
Advocating for families to secure the specialist care and support their child or dependent needs and updating them on the latest news, research, trials, treatments, guidance and clinical support from a global perspective
Assisting with complex applications such as Education and Health Care Plans and Disability Living Allowance, liaising with local councils, providing guidance to local hospices and care providers and advocating for families.
Communicating with legal teams regarding specialist over-night care and deputyship and writing directly to the Courts.
Serving as a key liaison between local multi-disciplinary care teams and the CDKL5 Centre of Excellence and updating patient records.
Managing the CDKL5 Registry, including the collection and upkeep of accurate patient data and reports.
Delivering specialist training in collaboration with the small team at CDKL5 UK on CDKL5 to care providers, empowering them to deliver high-quality, informed care.

Ultimately, this unique position is the only one of its kind in the UK, making it an invaluable and indispensable resource. It is a true lifeline for families, uniquely bridging clinical care with real-world support and ensuring they are never left to cope alone.

Infrastructure – CRM

This year, we also invested in our infrastructure, embedding a new database - Beacon CRM - which services as a single secure source of supporter data, to help us better reach and support both families and professionals. CDKL5 UK is now able to process one-off and recurring donations via the website. Beacon CRM also simplifies the process of claiming Gift Aid. The system also allows for automated workflows and integration of platforms such as Just Giving, Mail Chimp (newsletter) and Gmail. Since set-up, CDKL5 UK holds the data of 33 supporters.

SUPPORT

Throughout 2024-202, we continued to support families affected by CDD emotionally and practically. We provided specialist support, including but not limited to:

General Support & Guidance – we offered a listening ear and practical advice tailored to specific family’s needs
Disability Living Allowance (DLA) Forms – we assisted with completing applications to help secure financial support
Social Care Advice – we gave guidance on accessing services, understanding individuals rights, and advocating for their loved ones
Continuing Health Care (CHC) Advice – we supported with navigating the CHC process to ensure the best care for children with CDD

Page 4 of 10

REGISTERED CHARITY NUMBER (ENGLAND AND WALES): 1207922

At the CDKL5 Centre of Excellence, the CDKL5 Research and Care Coordinator (funded by CDKL5 UK):

Supported a total of 84 families.
Received 32 new referrals
Coordinated 2 ongoing clinical trials; providing families with unprecedented access to groundbreaking medicines for CDKL5-related epilepsy

Practical and Emotional Advice and Support

CDD impacts every area of daily life. We continue to provide both practical assistance and emotional support to parents, carers and wider family members of individuals with CDD, including 1:1 advice to help them access the support they are entitled to as caregivers to children and adults living with CDD.

Rareminds Service

Rareminds Counselling Service is a UK-based non-profit organisation dedicated to providing specialised mental health support for individuals and families affected by rare conditions. It is a unique service because its counsellors and psychotherapists have a deep understanding of the psychosocial impact of living with a rare condition, which goes beyond standard mental health training.

CDKL5 UK works in partnership with Rareminds to offer a free, confidential Counselling Service for individuals and family members aged 18+ impacted by CDD.

The Rareminds Counselling Service launched in October 2024, offering 6 to 12 sessions to individuals either via video call, or by telephone. Both evening and daytime appointments are available, and sessions can be extended past 12 if it is felt by both the individual and the psychotherapist that this would be of benefit.

The Rareminds CDKL5 Counselling Team are David Phipps (Lead Counsellor) and Anna Smith. Both are trained and experienced therapists who have undertaken additional training with Rareminds on Counselling for Rare Diseases.

To the end of March 2025:

4 individuals have accessed the service
36 counselling sessions have been provided
2 individuals have finished their sessions
2 individuals are still accessing the service.
Feedback forms were received from 3 individuals.
2 out of 3 individuals found their sessions to be ‘very helpful’, 1 client found them ‘helpful’.
2 out of 3 individuals felt that it was ‘very important and helpful’ to have a counsellor who had an understanding of CDD, 1 individual felt it was ‘moderately important and helpful’.
All individuals felt better able to manage the emotional impact of their condition on completion of their sessions.
All individuals would recommend their counsellor to others.

This service has shown us this past year how committed parents are to giving their children the fullest lives possible, including social experiences. However, this dedication often creates significant

Page 5 of 10 REGISTERED CHARITY NUMBER (ENGLAND AND WALES): 1207922

challenges. A major recurring theme is how much focus and energy is needed to support a child with CDD, which in turn leaves parents with little time or energy to process their own feelings and experiences.

INFORMATION

CDKL5 UK Facebook Page

Facebook is invaluable for bringing together a geographically dispersed community. The platform allows families, carers, and individuals with shared experiences to connect, share stories, offer support, and celebrate milestones. The CDKL5 UK Facebook page provides a safe, accessible space where people can feel less isolated and more understood.

The Official CDKL5 UK Facebook Page has a total of 2,904 followers, with 23 net follows between 31 March 2024 and 31 March 2025; of which:

34.3% are aged 25-34 years old
36.1% are aged 35-44 years old
21.7% are aged 45-54 years old
9.3% are aged 55 – 64 years old
6.9% are aged 65+ years old
1.7% are aged 18-24 years old

Of these individuals:

33.5% are living in the United Kingdom
34.9% are living in India
19.7% are living in the United States
5.5% are living in Brazil
4.4% are living in Italy
2.5% are living in Canada

Our content was shared a total of 156 times, with a total of 1,330 reactions and 99 comments.

The most number of views on a single post was 5,734 accounts.

CDKL5 UK’s Website

www.curecdkl5.org.uk

The CDKL5 UK website acts as a central hub for the CDKL5 community in the UK. It provides a single point of access to a wide range of resources, preventing families from getting lost in a sea of potentially overwhelming and unverified online information. The website is essential for the charity's financial health and advocacy efforts. It provides a secure and user-friendly platform for online donations, fundraising campaigns, and volunteer sign-ups. It also serves as a public face for the organization, raising awareness of CDD among the general public and the medical community.

By showcasing the charity's mission, impact, and the stories of affected families, an up-to-date website can inspire greater support and investment in the cause. For families receiving a new and often overwhelming diagnosis, the CDKL5 UK website is a vital source of support and a potential lifeline.

Page 6 of 10 REGISTERED CHARITY NUMBER (ENGLAND AND WALES): 1207922

At the beginning of 2025, the website underwent important changes and updates, reflecting CDKL5 UK’s brand and status as a CIO; with new, relevant and up-to-date information on the following pages:

Homepage
About us
Trustee Information
Staff Information
Mission and Vision
News
Fundraising
Policies
Research
CDKL5 Research Champions
PPI Toolkit for Researchers
Support
Family Support
Donate now – links to Beacon CRM for one-off or recurring donations

Resources

Information packs serve as a crucial educational tool, making complex medical or scientific information digestible for families who are newly diagnosed, young people and general public. The "Introduction to CDKL5 Deficiency Disorder (CDD) for newly diagnosed families" pack, for example, helps families, especially those who are newly diagnosed, understand CDD. This knowledge is empowering, as it enables individuals and families to make informed decisions about their care and treatment. It also raises awareness of CDD within the broader community, which can lead to greater empathy and support.

2 new information packs were developed. These are:

An Introduction to CDKL5 Deficiency Disorder (CDD) for newly diagnosed families
Learning About CDKL5 Deficiency Disorder (CDD): A Guide for Young Brothers, Sisters, Cousins and Friends

For families dealing with a new diagnosis, information can be a lifeline. The pack for newly diagnosed families provides not only facts but also a sense of validation and connection. It shows them they are not alone. Similarly, the "Learning About CDKL5 Deficiency Disorder (CDD): A Guide for Young Brothers, Sisters, Cousins and Friends" pack helps siblings and peers understand their loved one's diagnosis. This promotes a more supportive and inclusive environment, reducing feelings of isolation and confusion among young family members.

Information packs centralise critical information, saving individuals the time and stress of searching for it themselves. The information packs we have developed include information about the condition, where parents and families can find and access the correct care and support, and information about the CDKL5 Centre of Excellence. This makes it easier for families to access the help they need. By providing a clear, structured guide, these packs help ensure that everyone, regardless of their background or level of education, has access to the same high-quality information. This is particularly important for CDD - there is a lot of information online and it can be overwhelming for families, and difficult to know where to begin.

Page 7 of 10

REGISTERED CHARITY NUMBER (ENGLAND AND WALES): 1207922

EDUCATION

In 2025, we delivered 2 bespoke training workshops to health and social care teams who care for individuals with CDD. These workshops took place in England and were designed and delivered in partnership with the CDKL5 Centre of Excellence.

Our workshops go beyond theory, offering professionals practical advice on how to care for someone with CDD, including:

Holistic Care: Teaching social care professionals to recognise that CDD is a multi-system disorder that requires a coordinated approach involving neurologists, physiotherapists, occupational therapists, and speech and language therapists.
Effective Management: Providing guidance on managing difficult-to-control seizures, recognising subtle changes in behaviour, specific to reach individual, that may signal a medical issue, and adapting communication and feeding techniques to suit the unique needs of the individual
Care Pathways: Helping professionals understand and navigate the complex care pathways for CDD

The feedback we received was positive, and we are now looking to develop an online e-learning platform. Some of the feedback received, included:

“The workshop gave us a greater understanding of CDKL5 and how we can enhance X’s life.”

“The whole team found the workshop really interesting, we wanted to better understand CDKL5 so we could ultimately support X in the best possible way. We all have a greater understanding and learnt lots from this workshop. The team at CDKL5 UK are so knowledgeable and passionate which made the workshop really enjoyable.”

“It exceeded my expectations. It was brilliant”

“Everything was great will just be amazing if this offered to others as it’s such valuable training.”

“Just that I hope this workshop can be offered to others as it’s so valuable and insightful.”

“Really informative and interesting. Especially the way the science was compared to everyone’s 'story'.”

“It was bespoke to my daughter and perfect.”

“It exceeded my expectations. It was brilliant.”

By empowering health and social care professionals with targeted training, these workshops directly contribute to a higher standard of care, improved quality of life for individuals with CDD, and reduced stress for their families.

RAISING AWARENESS

Global CDKL5 June Awareness Month

Global CDKL5 Awareness Month, observed every June, is of profound importance for the CDKL5 UK community and the wider public. It provides a dedicated and coordinated opportunity to address the unique challenges of a CDD and its associated co-morbidities. For those of us navigating the complexities of CDD, Awareness Month is far more than just a campaign; it’s a vital opportunity to

Page 8 of 10

REGISTERED CHARITY NUMBER (ENGLAND AND WALES): 1207922

strengthen our connections, further educate those who need to understand our children’s experiences, and relentlessly advocate for the advancements we so desperately need.

Throughout June, families, caregivers, advocates, and organisations rallied together in diverse and inspiring ways, taking part in our “Wear Lime Green for June 17” Day on June 17[th] , and deeply personal stories shared across every platform. The collective effort was, once again, truly remarkable.

These initiatives helped to:

Amplify Our Voice: By continuing to highlight the realities of living with CDKL5, we break through the obscurity that often surrounds rare conditions, ensuring that CDD is not just known, but truly understood by healthcare providers, educators, and the broader public. This heightened understanding is critical for advocating for better care and earlier interventions for newly diagnosed families.
Accelerate Research: Our awareness efforts are intrinsically linked to fundraising and advocating for increased research funding. The powerful stories we share underscore the urgent need for new treatments and, ultimately, a cure. The momentum generated during CDKL5 Awareness Month contributes to scientific breakthroughs and the progression of clinical trials.
Strengthen Our Bonds: CDKL5 Awareness Month provides a crucial platform for us to connect, share experiences, and reinforce the vital truth that none of us are alone . The support networks we foster during this time are invaluable for navigating the daily challenges and celebrating the small victories of living with CDD.
Drive Policy Change: By amplifying our collective voices, we can bring the specific needs of the CDKL5 community to the attention of decision-makers. This advocacy is crucial for influencing healthcare policies, improving access to specialised care, and ensuring CDD is a priority in rare condition initiatives.

Conferences and Events – Representing the Patient and Carer Voice

Throughout the year, we’ve continued to ensure that the experiences and perspectives of parents and carers remain central to discussions about CDD at both national and internation levels.

We have been active members of umbrella associations in the UK and Europe, including, Patient Advocacy Group Member for Epicare – a European Reference network, UK Rare Epilepsies Together, and the CDKL5 Alliance.

We have also engaged with companies and researchers who are driving new research and developing much needed new treatments in CDD, representing the patient/caregiver. This advocacy work is essential in shaping both current care practices and future research priorities, ensuring they address the real-world needs of families living with CDD.

FUNDRAISING

Community Fundraising – Just Giving

Community fundraising has been excellent, and this is primarily down to the Development and Engagement Champion, which has proved to be an excellent resource, and support to our families.

Patient and Public Involvement and Engagement (PPIE) in Research

Page 9 of 10 REGISTERED CHARITY NUMBER (ENGLAND AND WALES): 1207922

In 2025, we established our very own patient and public involvement network named CDKL5 Research Champions; a platform to empower patients, parents, family members and carers to take part in research in the UK and abroad; and providing opportunities to do so.

Patient and Public Involvement (PPI) ensures that people affected by CDD are at the heart of CDKL5 research, influencing the design and direction of CDKL5 research in the UK. There is growing evidence to suggest that PPI improves the outcomes and results of research. Rather than research being undertaken ‘for’ or ‘about’ the CDKL5 community, research is undertaken ‘with’ or ‘by’ the CDKL5 community. PPI in research is now seen by many funders as an essential part of the process of how research is identified, prioritised, designed, conducted and disseminated. This ensures that research is focused on the day-to-day needs of people affected by CDD.

Anyone who is affected by CDD, either directly or indirectly, can sign up to this network and get involved, including:

Individuals who have a diagnosis of CDD
Parents
Carers
Siblings
Other family members such as grandparents

Being involved in CDKL5 research means:

Research results and outcomes are more relevant and have more impact on the day-to-day lives of people living with CDD and their families
Individuals will have the opportunity to help others who are affected by CDD and on a similar journey to them
Individuals will be helping to raise awareness of CDD and its effects on others and families within the research community
Individuals will be able to direct research into areas you feel are most important to them and their families

We also released a webpage with information on why and how researchers interested in CDD can work with us and members of the CDKL5 Research Champion network on their research projects. This has many benefits, including:

Access to a diverse group of people affected by CDD
Research is focused on the needs of people affected by CDD
Research has improved patient experience, and trial recruitment and retention
Researchers create stronger funding applications

We currently have 4 registered research volunteers, and actively post about new opportunities to our wider community via our Facebook page and e-newsletter.

Carol-Anne Partridge Chair of Trustees, CDKL5 UK 5[th] January 2026

Page 10 of 10 REGISTERED CHARITY NUMBER (ENGLAND AND WALES): 1207922

CDKL5UK 18 April 2024 to 31 March 2025 Charity No 1207922 COMMUNITY ACCOUNT Queries

COMMUNITY ACCOUNT Queries Date Ref. Description Income Expenditure Transfer Balance Bank Balance at 18 APRIL 2024 £ 24,961.78 23.04.2024 Just Giving £ 234.33 £ 25,196.11 25.04.2024 Just Giving Subs DD £ 18.00 £ 25,178.11 29.04.2024 Charities Trust £ 50.00 £ 25,228.11 30.04.2024 Just Giving £ 19.22 £ 25,247.33 01.05.2024 Just Giving £ 11.85 £ 25,259.18 07.05.2024 EE Ltd DD £ 16.87 £ 25,242.31 08.05.2024 Just Giving £ 502.90 £ 25,745.21 09.05.2024 Premium Credit Ltd DD £ 24.08 £ 25,721.13 13.05.2024 Ref 7 Our Space Staff - Midlnds Family Day £ 200.00 £ 25,521.13 13.05.2024 Just Giving £ 58.15 £ 25,579.28 15.05.2024 Just Giving £ 86.65 £ 25,665.93 16.05.2024 Transfer to Paypal £ 9.81 £ 25,656.12 21.05.2024 Ref 11 Just Giving £ 5,939.87 £ 31,595.99 21.05.2024 Ref 11 Just Giving £ 24,883.75 £ 56,479.74 21.05.2024 Ref 11 Transfer from Ambersdream £ 426.38 £ 56,906.12 28.05.2024 Just Giving Subs DD £ 18.00 £ 56,888.12 29.05.2025 Ref 12 Pens. Com Bill Branded merch. £ 410.39 £ 56,477.73 29.05.2024 Ref 13 Pens. Com Bill Branded merch. £ 451.42 £ 56,026.31 29.05.2024 Just Giving £ 90.67 £ 56,116.98 30.05.2024 Charities Trust £ 50.00 £ 56,166.98 03.06.2024 EE Ltd DD £ 16.87 £ 56,150.11 03.06.2024 Just Giving £ 83.10 £ 56,233.21 06.06.2024 Transfer to Paypal £ 10.99 £ 56,222.22 10.06.2024 Premium Credit Ltd DD £ 24.08 £ 56,198.14 10.06.2024 *Ref 20* Transfer to account (Twitter - Premium) £ 100.80 £ 56,097.34 10.06.2024 Ref 25 £ 243.49 £ 55,853.85 17.06.2024 Transfer to Paypal £ 23.99 £ 55,829.86 25.06.2024 Just Giving Subs DD £ 18.00 £ 55,811.86 28.06.2024 Charities Trust £ 50.00 £ 55,861.86 01.07.2024 Just Giving £ 28.50 £ 55,890.36 04.07.2024 EE Ltd DD £ 16.87 £ 55,873.49 05.07.2024 no receipt Transfer to Account 60542628 Postage £ 29.52 £ 55,843.97 09.07.2025 Premium Credit Ltd DD £ 24.08 £ 55,819.89 17.07.2024 Transfer to Paypal £ 15.53 £ 55,804.36 17.07.2024 Ref 9 Miss CA Pickering (Ceri) expenses £ 511.09 £ 55,293.27 25.07.2024 Just Giving Subs DD £ 18.00 £ 55,275.27 29.07.2024 Just Giving £ 9.50 £ 55,284.77 31.07.2024 Charities Trust £ 50.00 £ 55,334.77 05.08.2024 EE Ltd DD £ 16.87 £ 55,317.90 06.08.2024 NCVO £ 59.00 £ 55,258.90 07.08.2024 Transfer to Paypal £ 11.99 £ 55,246.91 09.08.2024 Premium Credit Ltd DD £ 24.08 £ 55,222.83 15.08.2024 Transfer to Paypal £ 23.99 £ 55,198.84 27.08.2024 Just Giving Subs DD £ 18.00 £ 55,180.84 29.08.2024 Charities Trust £ 50.00 £ 55,230.84 03.09.2024 EE Ltd DD £ 17.76 £ 55,213.08 03.09.2024 Just Giving £ 22.72 £ 55,235.80 06.09.2024 Transfer to Paypal £ 11.99 £ 55,223.81 09.09.2024 Premium Credit Ltd DD £ 24.08 £ 55,199.73 10.09.2024 Just Giving £ 126.62 £ 55,326.35 11.09.2024 Ref 26 R Kettle-Frisby Expenses £ 823.00 £ 54,503.35 17.09.2024 Transfer to Paypal £ 23.99 £ 54,479.36 17.09.2024 Just Giving £ 263.05 £ 54,742.41 18.09.2024 Just Giving £ 64.12 £ 54,806.53 24.09.2024 Ref 15 Rare Minds £ 750.00 £ 54,056.53 25.09.2024 Just Giving Subs DD £ 18.00 £ 54,038.53 25.09.2024 Just Givings £ 4.75 £ 54,043.28 30.09.2024 Just Giving £ 96.90 £ 54,140.18 30.09.2024 Charities Trust £ 50.00 £ 54,190.18 04.10.2024 EE Ltd DD £ 17.76 £ 54,172.42 07.10.2024 Transfer to Paypal £ 11.99 £ 54,160.43 09.10.2024 Premium Credit Ltd DD £ 24.08 £ 54,136.35 09.10.2024 Justgiving £ 23.74 £ 54,160.09 16.10.2024 Transfer to Paypal £ 23.99 £ 54,136.10 16.10.2024 Just Giving £ 7.11 £ 54,143.21 25.10.2024 Just Giving Subs DD £ 18.00 £ 54,125.21 30.10.2024 Charities Trust £ 50.00 £ 54,175.21 04.11.2024 EE Ltd DD £ 17.76 £ 54,157.45 04.11.2024 Just Giving £ 77.25 £ 54,234.70 06.11.2024 Transfer to Paypal £ 11.99 £ 54,222.71 08.11.2024 Ref 4 Park Bookkeeping Service INV 1504 £ 25.00 £ 54,197.71 08.11.2024 Ref 4a Parks Bookkeeping set up costs £ 200.00 £ 53,997.71 11.11.2024 lost receipt Transfer A/c 60542628 - BPNA Hotel Oxford CA & Bethan £ 520.00 £ 53,477.71 12.11.2024 What is this for?Valentina Group £ 155.88 £ 53,321.83 15.11.2024 Transfer to Paypal £ 23.99 £ 53,297.84 18.11.2024 Just Giving £ 81.86 £ 53,379.70 20.11.2024 Just Giving £ 41.55 £ 53,421.25 25.11.2024 Just Giving Subs DD £ 18.00 £ 53,403.25 26.11.2024 Just Giving £ 137.75 £ 53,541.00 26.11.2024 Just Giving £ 796.47 £ 54,337.47 28.11.2024 Charities Trust £ 50.00 £ 54,387.47 02.12.2024 Just Giving £ 158.75 £ 54,546.22 04.12.2024 EE Ltd DD £ 18.52 £ 54,527.70 04.12.2024 Ref 16 Rare Minds £ 85.00 £ 54,442.70 04.12.2024 Ref 17 Rare Minds £ 255.00 £ 54,187.70 04.12.2024 Just Giving £ 20.18 £ 54,207.88 05.12.2025 Transfer to Paypal £ 14.39 £ 54,193.49 05.12.2025 R Kettle Frisby CDKL5 Forum Expenses £ 46.00 £ 54,147.49 SA Ashton Expensesm- Midlands Family Day - Sandwiches £201.50receipt for diff £41.99??	Income Analysis General General General Restricted Restricted Restricted Restricted Merchandise Other £ 234.33 £ 50.00 £ 19.22 £ 11.85 £ 502.90 £ 58.15 £ 86.65 £ 5,939.87 £ 24,883.75 £ 426.38 £ 90.67 £ 50.00 £ 83.10 £ 50.00 £ 28.50 £ 9.50 £ 50.00 £ 50.00 £ 22.72 £ 126.62 £ 263.05 £ 64.12 £ 4.75 £ 96.90 £ 50.00 £ 23.74 £ 7.11 £ 50.00 £ 77.25 £ 81.86 £ 41.55 £ 137.75 £ 796.47 £ 50.00 £ 158.75 £ 20.18 Grants & Donations Alliance Website Design Research Co- Ordinator Universtity Hospital Bristol Orion Income for Consultancy Work completed by CA Vcreate Platform Funded by Orion 2 Years Y1 22/23 Y2 23/24
		General General General General General General Merchandise Just Giving Fees Pay Pal Fees £ 18.00 £ 16.87 £ 18.00 £ 410.39 £ 451.42 £ 16.87 £ 18.00 £ 16.87 £ 29.52 £ 18.00 £ 16.87 £ 18.00 £ 17.76 £ 18.00 £ 17.76 £ 18.00 £ 17.76 £ 155.88 £ 18.00 Postage / Office Costs / Mobile Phone Marketing (incl Website) Website development & Database

Income Analysis General General General Restricted Restricted Restricted Restricted Merchandise Other Grants & Donations Alliance Website Design Research Co- Ordinator Universtity Hospital Bristol Orion Income for Consultancy Work completed by CA Vcreate Platform Funded by Orion 2 Years Y1 22/23 Y2 23/24 £ 24.68 £ 222.91 £ 91.38 £ 27.29 £ 9.51 £ 50.00 £ 2.37 £ 2.37 £ 2.37 £ 50.00 £ 3,292.38 £ 574.47 £ 1,775.80 £ 210.82 £ 121.12 £ 58.95 £ 176.88 £ 14.25 £ 96.15 £ 18.81 £ 4.75 £ 912.00 £ 5,761.88 £ 85.49 £ 1,135.25 £ 1,006.39 £ 302.91 £ 0.02	Income Analysis General General General Restricted Restricted Restricted Restricted Merchandise Other Grants & Donations Alliance Website Design Research Co- Ordinator Universtity Hospital Bristol Orion Income for Consultancy Work completed by CA Vcreate Platform Funded by Orion 2 Years Y1 22/23 Y2 23/24 £ 24.68 £ 222.91 £ 91.38 £ 27.29 £ 9.51 £ 50.00 £ 2.37 £ 2.37 £ 2.37 £ 50.00 £ 3,292.38 £ 574.47 £ 1,775.80 £ 210.82 £ 121.12 £ 58.95 £ 176.88 £ 14.25 £ 96.15 £ 18.81 £ 4.75 £ 912.00 £ 5,761.88 £ 85.49 £ 1,135.25 £ 1,006.39 £ 302.91 £ 0.02	Income Analysis General General General Restricted Restricted Restricted Restricted Merchandise Other Grants & Donations Alliance Website Design Research Co- Ordinator Universtity Hospital Bristol Orion Income for Consultancy Work completed by CA Vcreate Platform Funded by Orion 2 Years Y1 22/23 Y2 23/24 £ 24.68 £ 222.91 £ 91.38 £ 27.29 £ 9.51 £ 50.00 £ 2.37 £ 2.37 £ 2.37 £ 50.00 £ 3,292.38 £ 574.47 £ 1,775.80 £ 210.82 £ 121.12 £ 58.95 £ 176.88 £ 14.25 £ 96.15 £ 18.81 £ 4.75 £ 912.00 £ 5,761.88 £ 85.49 £ 1,135.25 £ 1,006.39 £ 302.91 £ 0.02	Income Analysis General General General Restricted Restricted Restricted Restricted Merchandise Other Grants & Donations Alliance Website Design Research Co- Ordinator Universtity Hospital Bristol Orion Income for Consultancy Work completed by CA Vcreate Platform Funded by Orion 2 Years Y1 22/23 Y2 23/24 £ 24.68 £ 222.91 £ 91.38 £ 27.29 £ 9.51 £ 50.00 £ 2.37 £ 2.37 £ 2.37 £ 50.00 £ 3,292.38 £ 574.47 £ 1,775.80 £ 210.82 £ 121.12 £ 58.95 £ 176.88 £ 14.25 £ 96.15 £ 18.81 £ 4.75 £ 912.00 £ 5,761.88 £ 85.49 £ 1,135.25 £ 1,006.39 £ 302.91 £ 0.02	Income Analysis General General General Restricted Restricted Restricted Restricted Merchandise Other Grants & Donations Alliance Website Design Research Co- Ordinator Universtity Hospital Bristol Orion Income for Consultancy Work completed by CA Vcreate Platform Funded by Orion 2 Years Y1 22/23 Y2 23/24 £ 24.68 £ 222.91 £ 91.38 £ 27.29 £ 9.51 £ 50.00 £ 2.37 £ 2.37 £ 2.37 £ 50.00 £ 3,292.38 £ 574.47 £ 1,775.80 £ 210.82 £ 121.12 £ 58.95 £ 176.88 £ 14.25 £ 96.15 £ 18.81 £ 4.75 £ 912.00 £ 5,761.88 £ 85.49 £ 1,135.25 £ 1,006.39 £ 302.91 £ 0.02	Income Analysis General General General Restricted Restricted Restricted Restricted Merchandise Other Grants & Donations Alliance Website Design Research Co- Ordinator Universtity Hospital Bristol Orion Income for Consultancy Work completed by CA Vcreate Platform Funded by Orion 2 Years Y1 22/23 Y2 23/24 £ 24.68 £ 222.91 £ 91.38 £ 27.29 £ 9.51 £ 50.00 £ 2.37 £ 2.37 £ 2.37 £ 50.00 £ 3,292.38 £ 574.47 £ 1,775.80 £ 210.82 £ 121.12 £ 58.95 £ 176.88 £ 14.25 £ 96.15 £ 18.81 £ 4.75 £ 912.00 £ 5,761.88 £ 85.49 £ 1,135.25 £ 1,006.39 £ 302.91 £ 0.02	Income Analysis General General General Restricted Restricted Restricted Restricted Merchandise Other Grants & Donations Alliance Website Design Research Co- Ordinator Universtity Hospital Bristol Orion Income for Consultancy Work completed by CA Vcreate Platform Funded by Orion 2 Years Y1 22/23 Y2 23/24 £ 24.68 £ 222.91 £ 91.38 £ 27.29 £ 9.51 £ 50.00 £ 2.37 £ 2.37 £ 2.37 £ 50.00 £ 3,292.38 £ 574.47 £ 1,775.80 £ 210.82 £ 121.12 £ 58.95 £ 176.88 £ 14.25 £ 96.15 £ 18.81 £ 4.75 £ 912.00 £ 5,761.88 £ 85.49 £ 1,135.25 £ 1,006.39 £ 302.91 £ 0.02
							General General General General General General Merchandise Just Giving Fees Pay Pal Fees Postage / Office Costs / Mobile Phone Marketing (incl Website) Website development & Database £ 426.00 £ 18.00 £ 28.34 £ 18.00 £ 18.00 £ 694.80 £ 18.00
£ 50,728.89	£ -	£ -	£ -	£ -	£ -	£ -	£ 1,287.81	£ 178.62	£ 155.88	£ 694.80	£ 216.00	£ -
£ 9,360.00 £ - £ - £ - £ - £ - £ 9,360.00 £ - £ 26.17 £ 1.00 £ 20.45
							£ -	£ -	£ -	£ -	£ -	£ -
							£ 11.99 £ 23.99 £ 11.99 £ 23.99

CDKL5UK 18 April 2024 to 31 March 2025 COMMUNITY ACCOUNT Date Ref. Description 03.07.2024 123 Reg Ltd 13.07.2024 123 Reg Ltd 13.07.2024 Bank Transfer 03.08.2024 123 Reg Ltd 03.08.2024 Bank Transfer 13.08.2024 123 Reg Ltd 13.08.2024 Bank Transfer 03.09.2024 123 Reg Ltd 03.09.2024 Bank Transfer 13.09.2024 123 Reg Ltd 13.09.2024 Bank Transfer 03.10.2024 123 Reg Ltd 03.10.2024 Bank Transfer 13.10.2024 123 Reg Ltd 13.10.2024 Bank Transfer 03.11.2024 123 Reg Ltd 03.11.2024 Bank Transfer 13.11.2024 123 Reg Ltd 13.11.2024 Bank Transfer 03.12.2024 123 Reg Ltd 03.12.2024 Bank Transfer 13.12.2024 123 Reg Ltd 13.12.2024 Bank Transfer 03.01.2025 123 Reg Ltd 03.01.2025 Bank Transfer 13.01.2025 123 Reg Ltd 13.01.2025 Bank Transfer 03.02.2025 123 Reg Ltd 03.02.2025 Bank Transfer 13.02.2025 123 Reg Ltd 13.02.2025 Bank Transfer 16.02.2025 123 Reg Ltd 16.02.2025 Bank Transfer	Income Analysis General General General Restricted Restricted Restricted Restricted Merchandise Other Grants & Donations Alliance Website Design Research Co- Ordinator Universtity Hospital Bristol Orion Income for Consultancy Work completed by CA Vcreate Platform Funded by Orion 2 Years Y1 22/23 Y2 23/24 47.62 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 £ 50,776.51 £ - £ - £ - £ - £ 9,360.00 £ -	Income Analysis General General General Restricted Restricted Restricted Restricted Merchandise Other Grants & Donations Alliance Website Design Research Co- Ordinator Universtity Hospital Bristol Orion Income for Consultancy Work completed by CA Vcreate Platform Funded by Orion 2 Years Y1 22/23 Y2 23/24 47.62 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 £ 50,776.51 £ - £ - £ - £ - £ 9,360.00 £ -	Income Analysis General General General Restricted Restricted Restricted Restricted Merchandise Other Grants & Donations Alliance Website Design Research Co- Ordinator Universtity Hospital Bristol Orion Income for Consultancy Work completed by CA Vcreate Platform Funded by Orion 2 Years Y1 22/23 Y2 23/24 47.62 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 £ 50,776.51 £ - £ - £ - £ - £ 9,360.00 £ -	Income Analysis General General General Restricted Restricted Restricted Restricted Merchandise Other Grants & Donations Alliance Website Design Research Co- Ordinator Universtity Hospital Bristol Orion Income for Consultancy Work completed by CA Vcreate Platform Funded by Orion 2 Years Y1 22/23 Y2 23/24 47.62 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 £ 50,776.51 £ - £ - £ - £ - £ 9,360.00 £ -	Income Analysis General General General Restricted Restricted Restricted Restricted Merchandise Other Grants & Donations Alliance Website Design Research Co- Ordinator Universtity Hospital Bristol Orion Income for Consultancy Work completed by CA Vcreate Platform Funded by Orion 2 Years Y1 22/23 Y2 23/24 47.62 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 £ 50,776.51 £ - £ - £ - £ - £ 9,360.00 £ -	Income Analysis General General General Restricted Restricted Restricted Restricted Merchandise Other Grants & Donations Alliance Website Design Research Co- Ordinator Universtity Hospital Bristol Orion Income for Consultancy Work completed by CA Vcreate Platform Funded by Orion 2 Years Y1 22/23 Y2 23/24 47.62 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 £ 50,776.51 £ - £ - £ - £ - £ 9,360.00 £ -	Income Analysis General General General Restricted Restricted Restricted Restricted Merchandise Other Grants & Donations Alliance Website Design Research Co- Ordinator Universtity Hospital Bristol Orion Income for Consultancy Work completed by CA Vcreate Platform Funded by Orion 2 Years Y1 22/23 Y2 23/24 47.62 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 £ 50,776.51 £ - £ - £ - £ - £ 9,360.00 £ -
								General General General General General General Merchandise Just Giving Fees Pay Pal Fees Postage / Office Costs / Mobile Phone Marketing (incl Website) Website development & Database £ 11.99 £ 23.99 £ 11.99 £ 23.99 £ 11.99 £ 23.99 £ 11.99 £ 23.99 £ 11.99 £ 23.99 £ 14.39 £ 23.99 £ 14.39 £ 23.99 £ 14.39 £ 23.99 £ 22.79 £ 390.00 £ 14.39 £ 26.39
26.02.2025 What is this for?ipostal Mail
26.02.2025 Bank Transfer 03.03.2025 123 Reg Ltd 03.03.2025 Bank Transfer 13.03.2025 123 Reg Ltd 13.03.2025 Bank Transfer Balance as at 31 March 2025 PAYPAL GENERAL FUNDS Totals PAYPAL RESTRICTED FUNDS Balance as at 18 April 2024 Balance as at 31 March 2025 PAYPAL RESTRICTED FUNDS Totals OVERALL TOTALS
								0.00	390.00	0.00	430.57	0.00	0.00

								0.00	0.00	0.00	0.00	0.00	0.00

	£ 50,776.51	£ -	£ -	£ -	£ -	£ 9,360.00	£ -	£ 1,287.81	£ 568.62	£ 155.88	£ 1,125.37	£ 216.00	£ -

Bank Account Community Restricted Total Opening Balance per Accounts 18 April 2024 £24,965.36 -£ 3,170.00 £ 21,795.36 Income £ 50,776.51 £ 9,360.00 £ 60,136.51 Expenditure £ 11,698.41 £ 17,430.60 £ 29,129.01 Transfer to Paypal £ - £ - £ - check Closing Balance per Account 31 March 2025 £ 64,043.46 -£ 11,240.60 £ 52,802.86 £ 52,802.86

----- Start of picture text -----
. Income Expenditure
CHECK Totals Totals
£ 60,136.51 £ 29,129.01
Net -£ 31,007.50
Totals excluding transfers
Barclays Community General £ 50,728.89 £ 10,104.89
Barclays Community Restricted £ 9,360.00 £ 17,430.60
Paypal General £ 47.62 £ 1,593.52
Paypal Restricted £ - £ -
£ 60,136.51 £ 29,129.01
-£ 31,007.50
----- End of picture text -----

CDKL5UK 18 April 2024 to 31 March 2025 Charity No 1207922 COMMUNITY ACCOUNT Queries Date Ref. Description Bank Balance at 18 APRIL 2024 23.04.2024 Just Giving 25.04.2024 Just Giving Subs DD 29.04.2024 Charities Trust 30.04.2024 Just Giving 01.05.2024 Just Giving 07.05.2024 EE Ltd DD 08.05.2024 Just Giving 09.05.2024 Premium Credit Ltd DD 13.05.2024 Ref 7 Our Space Staff - Midlnds Family Day 13.05.2024 Just Giving 15.05.2024 Just Giving 16.05.2024 Transfer to Paypal 21.05.2024 Ref 11 Just Giving 21.05.2024 Ref 11 Just Giving 21.05.2024 Ref 11 Transfer from Ambersdream 28.05.2024 Just Giving Subs DD 29.05.2025 Ref 12 Pens. Com Bill Branded merch. 29.05.2024 Ref 13 Pens. Com Bill Branded merch. 29.05.2024 Just Giving 30.05.2024 Charities Trust 03.06.2024 EE Ltd DD 03.06.2024 Just Giving 06.06.2024 Transfer to Paypal 10.06.2024 Premium Credit Ltd DD 10.06.2024 *Ref 20* Transfer to account (Twitter - Premium) 10.06.2024 Ref 25 17.06.2024 Transfer to Paypal 25.06.2024 Just Giving Subs DD 28.06.2024 Charities Trust 01.07.2024 Just Giving 04.07.2024 EE Ltd DD 05.07.2024 no receipt Transfer to Account 60542628 Postage 09.07.2025 Premium Credit Ltd DD 17.07.2024 Transfer to Paypal 17.07.2024 Ref 9 Miss CA Pickering (Ceri) expenses 25.07.2024 Just Giving Subs DD 29.07.2024 Just Giving 31.07.2024 Charities Trust 05.08.2024 EE Ltd DD 06.08.2024 NCVO 07.08.2024 Transfer to Paypal 09.08.2024 Premium Credit Ltd DD 15.08.2024 Transfer to Paypal 27.08.2024 Just Giving Subs DD 29.08.2024 Charities Trust 03.09.2024 EE Ltd DD 03.09.2024 Just Giving 06.09.2024 Transfer to Paypal 09.09.2024 Premium Credit Ltd DD 10.09.2024 Just Giving 11.09.2024 Ref 26 R Kettle-Frisby Expenses 17.09.2024 Transfer to Paypal 17.09.2024 Just Giving 18.09.2024 Just Giving 24.09.2024 Ref 15 Rare Minds 25.09.2024 Just Giving Subs DD 25.09.2024 Just Givings 30.09.2024 Just Giving 30.09.2024 Charities Trust 04.10.2024 EE Ltd DD 07.10.2024 Transfer to Paypal 09.10.2024 Premium Credit Ltd DD 09.10.2024 Justgiving 16.10.2024 Transfer to Paypal 16.10.2024 Just Giving 25.10.2024 Just Giving Subs DD 30.10.2024 Charities Trust 04.11.2024 EE Ltd DD 04.11.2024 Just Giving 06.11.2024 Transfer to Paypal 08.11.2024 Ref 4 Park Bookkeeping Service INV 1504 08.11.2024 Ref 4a Parks Bookkeeping set up costs 11.11.2024 lost receipt Transfer A/c 60542628 - BPNA Hotel Oxford CA & Bethan SA Ashton Expensesm- Midlands Family Day - Sandwiches £201.50receipt for diff £41.99??	Expenditure Analysis
	General General General General General General General General Restricted Restricted Restricted Trustee Exp Grants Contra's £ 24.08 £ 200.00 -£ 9.81 -£ 10.99 £ 24.08 £ 100.80 £ 243.49 -£ 23.99 £ 24.08 -£ 15.53 £ 511.09 £ 59.00 -£ 11.99 £ 24.08 -£ 23.99 -£ 11.99 £ 24.08 £ 823.00 -£ 23.99 £ 750.00 -£ 11.99 £ 24.08 -£ 23.99 -£ 11.99 £ 25.00 £ 200.00 £ 260.00 £ 260.00 -£ 23.99 £ 18.52 £ 85.00 £ 255.00 -£ 14.39 £ 46.00 Legal / Accountancy / Insurance Fees/Payroll service Fees & Subscriptions & Mobile Phone contract (incl event fees) Family Support & Networking / Counselling Offer Grants - Research / Presentations Payroll costs - Admin Support Conference - Attendance & Travel Costs Alliance Website Design University Hospital Bristol Centre of Excellence Admin Support Vcreate Platform Funded by Orion 2 Years Y1 22/23 Y2 23/24
12.11.2024 What is this for?Valentina Group
15.11.2024 Transfer to Paypal 18.11.2024 Just Giving 20.11.2024 Just Giving 25.11.2024 Just Giving Subs DD 26.11.2024 Just Giving 26.11.2024 Just Giving 28.11.2024 Charities Trust 02.12.2024 Just Giving 04.12.2024 EE Ltd DD 04.12.2024 Ref 16 Rare Minds 04.12.2024 Ref 17 Rare Minds 04.12.2024 Just Giving 05.12.2025 Transfer to Paypal 05.12.2025 R Kettle Frisby CDKL5 Forum Expenses

Expenditure Analysis	Expenditure Analysis	Expenditure Analysis	Expenditure Analysis	Expenditure Analysis	Expenditure Analysis	Expenditure Analysis	Expenditure Analysis	Expenditure Analysis	Expenditure Analysis	Expenditure Analysis	Expenditure Analysis
General General General General General General General General Restricted Restricted Restricted Trustee Exp Grants Contra's Legal / Accountancy / Insurance Fees/Payroll service Fees & Subscriptions & Mobile Phone contract (incl event fees) Family Support & Networking / Counselling Offer Grants - Research / Presentations Payroll costs - Admin Support Conference - Attendance & Travel Costs Alliance Website Design University Hospital Bristol Centre of Excellence Admin Support Vcreate Platform Funded by Orion 2 Years Y1 22/23 Y2 23/24 £ 780.80 -£ 23.99 £ 50.00 £ 235.00 £ 235.00 -£ 14.39 £ 780.80 -£ 23.99 £ 24.07 £ 170.00 £ 17.76 -£ 14.39 £ 24.08 £ 780.80 -£ 23.99 £ 25.00 £ 76.80 -£ 22.79 £ 52.00 -£ 390.00 £ 33.60 -£ 14.39 £ 17.76 £ 255.00 £ 24.08 £ 780.80 -£ 26.39
£ 352.00	£ 430.55	£ 1,364.00	£ -	£ 1,958.49	£ 511.09	£ 3,233.60	£ 495.00	£ -	£ -	£ -	-£ 772.95
£ 9,360.00 £ 1,917.54 £ 1,961.67 £ 1,961.67 £ 2,229.72
£ -	£ -	£ -	£ -					£ -	£ 8,070.60	£ 9,360.00	£ -
£ 9.81 £ 10.99 £ 23.99

CDKL5UK 18 April 2024 to 31 March 2025 COMMUNITY ACCOUNT Date Ref. Description 03.07.2024 123 Reg Ltd 13.07.2024 123 Reg Ltd 13.07.2024 Bank Transfer 03.08.2024 123 Reg Ltd 03.08.2024 Bank Transfer 13.08.2024 123 Reg Ltd 13.08.2024 Bank Transfer 03.09.2024 123 Reg Ltd 03.09.2024 Bank Transfer 13.09.2024 123 Reg Ltd 13.09.2024 Bank Transfer 03.10.2024 123 Reg Ltd 03.10.2024 Bank Transfer 13.10.2024 123 Reg Ltd 13.10.2024 Bank Transfer 03.11.2024 123 Reg Ltd 03.11.2024 Bank Transfer 13.11.2024 123 Reg Ltd 13.11.2024 Bank Transfer 03.12.2024 123 Reg Ltd 03.12.2024 Bank Transfer 13.12.2024 123 Reg Ltd 13.12.2024 Bank Transfer 03.01.2025 123 Reg Ltd 03.01.2025 Bank Transfer 13.01.2025 123 Reg Ltd 13.01.2025 Bank Transfer 03.02.2025 123 Reg Ltd 03.02.2025 Bank Transfer 13.02.2025 123 Reg Ltd 13.02.2025 Bank Transfer 16.02.2025 123 Reg Ltd 16.02.2025 Bank Transfer	Charity No 1207922 Queries	Expenditure Analysis	Expenditure Analysis	Expenditure Analysis	Expenditure Analysis	Expenditure Analysis	Expenditure Analysis	Expenditure Analysis	Expenditure Analysis	Expenditure Analysis	Expenditure Analysis	Expenditure Analysis	Expenditure Analysis
		General General General General General General General General Restricted Restricted Restricted Trustee Exp Grants Contra's Legal / Accountancy / Insurance Fees/Payroll service Fees & Subscriptions & Mobile Phone contract (incl event fees) Family Support & Networking / Counselling Offer Grants - Research / Presentations Payroll costs - Admin Support Conference - Attendance & Travel Costs Alliance Website Design University Hospital Bristol Centre of Excellence Admin Support Vcreate Platform Funded by Orion 2 Years Y1 22/23 Y2 23/24 £ 15.53 £ 11.99 £ 23.99 £ 11.99 £ 23.99 £ 11.99 £ 23.99 £ 11.99 £ 23.99 £ 14.39 £ 23.99 £ 14.39 £ 23.99 £ 14.39 £ 23.99 £ 22.79 £ 390.00 £ 14.39 £ 26.39
26.02.2025 What is this for?ipostal Mail
26.02.2025 Bank Transfer 03.03.2025 123 Reg Ltd 03.03.2025 Bank Transfer 13.03.2025 123 Reg Ltd 13.03.2025 Bank Transfer Balance as at 31 March 2025 PAYPAL GENERAL FUNDS Totals PAYPAL RESTRICTED FUNDS Balance as at 18 April 2024 Balance as at 31 March 2025 PAYPAL RESTRICTED FUNDS Totals OVERALL TOTALS
	47.62	0.00	0.00	0.00	0.00	0.00	0.00	0.00	0.00	0.00	0.00	0.00	772.95
	Gross Income
	£ -	0.00	0.00	0.00	0.00					0.00	0.00	0.00	0.00

		£ 352.00	£ 430.55	£ 1,364.00	£ -	£ 1,958.49	£ 511.09	£ 3,233.60	£ 495.00	£ -	£ 8,070.60	£ 9,360.00	£ -

Opening Balance per Accounts 18 April 2024 Income Expenditure Transfer to Paypal Closing Balance per Account 31 March 2025

----- Start of picture text -----
.
CHECK
Net
Totals excluding transfers
Barclays Community General
Barclays Community Restricted
Paypal General
Paypal Restricted
----- End of picture text -----

CDKL5UK

Period from 18th APRIL 2024 to 31st March 2025

Current Year General Account Restricted Totals £ £ £ 50,776.51 9,360.00 60,136.51 11,698.41 17,430.60 29,129.01 39,078.10 (8,070.60) 31,007.50 24,965.36 (3,170.00) 21,795.36 0.00 0.00 0.00 64,043.46 (11,240.60) 52,802.86 64,039.88 (11,240.60) 52,799.28 3.58 0.00 3.58 64,043.46 (11,240.60) 52,802.86 50,776.51 50,776.51 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 9,360.00 9,360.00 0.00 0.00 50,776.51 9,360.00 60,136.51 1,287.81 1,287.81 568.62 568.62 155.88 155.88 1,125.37 1,125.37 430.55 430.55 1,958.49 1,958.49 511.09 511.09 3,233.60 3,233.60 495.00 495.00 0.00 8,070.60 8,070.60 0.00 0.00 0.00 0.00 0.00 0.00 0.00 9,360.00 9,360.00 9,766.41 17,430.60 27,197.01 1,364.00 1,364.00 216.00 216.00 0.00 0.00 352.00 352.00 0.00 0.00 11,698.41 17,430.60 29,129.01	Current Year General Account Restricted Totals £ £ £ 50,776.51 9,360.00 60,136.51 11,698.41 17,430.60 29,129.01 39,078.10 (8,070.60) 31,007.50 24,965.36 (3,170.00) 21,795.36 0.00 0.00 0.00 64,043.46 (11,240.60) 52,802.86 64,039.88 (11,240.60) 52,799.28 3.58 0.00 3.58 64,043.46 (11,240.60) 52,802.86 50,776.51 50,776.51 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 9,360.00 9,360.00 0.00 0.00 50,776.51 9,360.00 60,136.51 1,287.81 1,287.81 568.62 568.62 155.88 155.88 1,125.37 1,125.37 430.55 430.55 1,958.49 1,958.49 511.09 511.09 3,233.60 3,233.60 495.00 495.00 0.00 8,070.60 8,070.60 0.00 0.00 0.00 0.00 0.00 0.00 0.00 9,360.00 9,360.00 9,766.41 17,430.60 27,197.01 1,364.00 1,364.00 216.00 216.00 0.00 0.00 352.00 352.00 0.00 0.00 11,698.41 17,430.60 29,129.01	Current Year General Account Restricted Totals £ £ £ 50,776.51 9,360.00 60,136.51 11,698.41 17,430.60 29,129.01 39,078.10 (8,070.60) 31,007.50 24,965.36 (3,170.00) 21,795.36 0.00 0.00 0.00 64,043.46 (11,240.60) 52,802.86 64,039.88 (11,240.60) 52,799.28 3.58 0.00 3.58 64,043.46 (11,240.60) 52,802.86 50,776.51 50,776.51 0.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00 9,360.00 9,360.00 0.00 0.00 50,776.51 9,360.00 60,136.51 1,287.81 1,287.81 568.62 568.62 155.88 155.88 1,125.37 1,125.37 430.55 430.55 1,958.49 1,958.49 511.09 511.09 3,233.60 3,233.60 495.00 495.00 0.00 8,070.60 8,070.60 0.00 0.00 0.00 0.00 0.00 0.00 0.00 9,360.00 9,360.00 9,766.41 17,430.60 27,197.01 1,364.00 1,364.00 216.00 216.00 0.00 0.00 352.00 352.00 0.00 0.00 11,698.41 17,430.60 29,129.01	Previous Year	Previous Year	Previous Year
			General Account Restricted Totals £ £ £ 3,811.41 13,536.16 17,347.57 6,313.03 8,385.12 14,698.15
			(2,501.62)	5,151.04	2,649.42
			28,344.07 (8,472.34) 19,871.73 0.00 0.00 0.00
			25,842.45	(3,321.30)	22,521.15
			25,741.70 (3,321.30) 22,420.40 100.75 0.00 100.75
			25,842.45	(17,548.26)	22,521.15
			3,811.41 3,811.41 0.00 10,371.04 10,371.04 3,165.12 3,165.12 0.00
			3,811.41	13,536.16	17,347.57
			0.00 0.00 0.00 0.00 695.34 695.34 0.00 0.00 0.00 0.00 0.00 5,201.12 5,201.12 0.00 3,184.00 3,184.00 0.00 4,387.89 4,387.89
			695.34	12,773.01	13,468.35
			0.00 0.00 216.00 216.00 0.00 0.00 960.80 960.80 53.00 53.00
11,698.41	17,430.60	29,129.01	1,925.14	12,773.01	14,698.15

Restricted Grants - Income & Expenditure Summary - to 31 March 2025

CDKL5 UK Website Support UH Bristol Research Coordinator Funded by Lou Lou Foundaton	INCOME EXPENDITURE Year / Date Funder £ Year / Date Expenditure Detail £ £ 2018/19 Ovid £ 1,284.00 2018/19 ACT Marketng Ltd Website £ 240.00 2018/19 Marinus £ 2,220.99 2018/19 ACT Marketng Ltd Website £ 1,250.00 2018/18 Amicus £ 1,303.00 2019/20 ACT Marketng Ltd Website £ 2,500.00 £ 4,807.99 Total £ 3,990.00 Balance of Website Grants £ 817.99 Balance outstanding from LouLou Foundaton 2020/21 University Hospital Bristol Research Co-Ordinator 30.09.20 University Hospital Bristol Research Co-ord Q2 July 20 - Sept 20 Inv U0084376 £ 2,806.11 30.09.20 University Hospital Bristol Research Co-ord March 20-June 20 Inv U0084375 £ 3,678.11 29.12.20 UniversityHospital Bristol Research Co-ord Oct 20 - Dec 20 Inv U0085401 £ 2,806.11 2020/21 £ - £ 9,290.33 -£9,290.33 22.03.21 Univ. Hospital Bristol Research Co-ord. Q4 U0086371 £ 2,806.11 30.06.21 Univ. Hospital Bristol Research Co-ord. U0087653 £ 1,162.61 29.09.21 Univ. Hospital Bristol Research Co-ord. U0088747 £ 1,232.00 14.01.22 Receipt from Trustees of 193640 Wflus6S £ 10,371.04 Univ. Hospital Bristol Research Co-ord. U0084376 £ 0.40 shortall inv paid in $ not £ - next inv to add in shortall 09.12.2021 Inv 1/UofP March 2020- Dec 2021 £14491.45 2021/22 £ 10,371.04 £ 5,201.12 £5,169.92 31.03.2022 Univ. Hospital Bristol Research Co-ord. transfer U0091409 £ 115.88 19.08.22 Univ. Hospital Bristol Research Co-ord. U0092649 U0092649 £ 1,414.38 01.11.22 Univ. Hospital Bristol Research Co-ord. U0094158 U0094158 £ 1,449.72 10.01.23 Univ. Hospital Bristol Research Co-ord. U0095345 U0095345 £ 1,377.14 2022/23 £ - £ 4,357.12 -£4,357.12 26.04.2023 LouLou Foundaton Ref 211955 £ 2,400.00 12.05.2023 Bristol Univ Hosp £ 1,369.65 26.02.2024 Trustees of 244410WFbius6S Lou Lou £ 14,013.76 06.09.2023 Bristol Univ Hosp £ 3,226.53 09.11.2023 Bristol Univ Hosp £ 1,917.54 04.01.2024 Bristol Univ Hosp £ 10,000.00 05.03.2024 Bristol Univ Hosp £ 1,917.54 2023/24 £ 16,413.76 £ 18,431.26 -£2,017.50* 03.06.2024 Bristol Univ. Hospital for Q4 23/24 INV U0103237 £ 1,917.54 06.08.2024 Bristol Univ. Hospital For Q1 24/25 £ 1,961.67 07.11.2024 Bristol Univ. Hospital for Q2 24/25 £ 1,961.67 27.01.2025 Bristol Univ. Hospital forQ3 24/25 £ 2,229.72	INCOME EXPENDITURE Year / Date Funder £ Year / Date Expenditure Detail £ £ 2018/19 Ovid £ 1,284.00 2018/19 ACT Marketng Ltd Website £ 240.00 2018/19 Marinus £ 2,220.99 2018/19 ACT Marketng Ltd Website £ 1,250.00 2018/18 Amicus £ 1,303.00 2019/20 ACT Marketng Ltd Website £ 2,500.00 £ 4,807.99 Total £ 3,990.00 Balance of Website Grants £ 817.99 Balance outstanding from LouLou Foundaton 2020/21 University Hospital Bristol Research Co-Ordinator 30.09.20 University Hospital Bristol Research Co-ord Q2 July 20 - Sept 20 Inv U0084376 £ 2,806.11 30.09.20 University Hospital Bristol Research Co-ord March 20-June 20 Inv U0084375 £ 3,678.11 29.12.20 UniversityHospital Bristol Research Co-ord Oct 20 - Dec 20 Inv U0085401 £ 2,806.11 2020/21 £ - £ 9,290.33 -£9,290.33 22.03.21 Univ. Hospital Bristol Research Co-ord. Q4 U0086371 £ 2,806.11 30.06.21 Univ. Hospital Bristol Research Co-ord. U0087653 £ 1,162.61 29.09.21 Univ. Hospital Bristol Research Co-ord. U0088747 £ 1,232.00 14.01.22 Receipt from Trustees of 193640 Wflus6S £ 10,371.04 Univ. Hospital Bristol Research Co-ord. U0084376 £ 0.40 shortall inv paid in $ not £ - next inv to add in shortall 09.12.2021 Inv 1/UofP March 2020- Dec 2021 £14491.45 2021/22 £ 10,371.04 £ 5,201.12 £5,169.92 31.03.2022 Univ. Hospital Bristol Research Co-ord. transfer U0091409 £ 115.88 19.08.22 Univ. Hospital Bristol Research Co-ord. U0092649 U0092649 £ 1,414.38 01.11.22 Univ. Hospital Bristol Research Co-ord. U0094158 U0094158 £ 1,449.72 10.01.23 Univ. Hospital Bristol Research Co-ord. U0095345 U0095345 £ 1,377.14 2022/23 £ - £ 4,357.12 -£4,357.12 26.04.2023 LouLou Foundaton Ref 211955 £ 2,400.00 12.05.2023 Bristol Univ Hosp £ 1,369.65 26.02.2024 Trustees of 244410WFbius6S Lou Lou £ 14,013.76 06.09.2023 Bristol Univ Hosp £ 3,226.53 09.11.2023 Bristol Univ Hosp £ 1,917.54 04.01.2024 Bristol Univ Hosp £ 10,000.00 05.03.2024 Bristol Univ Hosp £ 1,917.54 2023/24 £ 16,413.76 £ 18,431.26 -£2,017.50* 03.06.2024 Bristol Univ. Hospital for Q4 23/24 INV U0103237 £ 1,917.54 06.08.2024 Bristol Univ. Hospital For Q1 24/25 £ 1,961.67 07.11.2024 Bristol Univ. Hospital for Q2 24/25 £ 1,961.67 27.01.2025 Bristol Univ. Hospital forQ3 24/25 £ 2,229.72
checked against prev account stements
Orion to fund Vcreate Tool - UH Bristol
	2024/25 £ - £ 8,070.60	-£8,070.60
	###	-£18,565.63
	27.06.2023 Orion Pharma Grant received 27.06.2022 INV 02/2022 £ 11,760.00 31.05.2022 V Create - Bristol Year 1 Invoice June 22 - May 23 incl Vat £1960.00 £ 11,760.00 01.06.2023 Orion Pharma re V Create £ 9,360.00 01.06.2023 V Create £ 9,360.00 28.05.2024 Orion for V Create £ 9,360.00 23.05.2024 V Create INV 0007647 £ 9,360.00 £ 30,480.00 £ 30,480.00
	£ 30,480.00 £ 30,480.00

Independent examiner's report on the accounts

Section A Independent Examiner’s Report

Report to the trustees/ Charity Name CDKL5 UK members of On accounts for the year 31[st] March 2025 Charity no 1207922 ended (if any) Set out on pages

(remember to include the page numbers of additional sheets)

I report to the trustees on my examination of the accounts of the above charity (“the Trust”) for the year ended DD / MM / YYYY .

Responsibilities and As the charity trustees of the Trust, you are responsible for the preparation basis of report of the accounts in accordance with the requirements of the Charities Act 2011 (“the Act”).

I report in respect of my examination of the Trust’s accounts carried out under section 145 of the 2011 Act and in carrying out my examination, I have followed the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act.

Independent I have completed my examination. I confirm that no material matters have examiner's statement come to my attention (other than that disclosed below *) in connection with the examination which gives me cause to believe that in, any material respect:

accounting records were not kept in accordance with section 130 of the Act or
the accounts do not accord with the accounting records

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

Please delete the words in the brackets if they do not apply.

Signed: Date: 26/01/2026 Name: BARRY GOULD Relevant professional AAT & ATT qualification(s) or body (if any): Address: 5 Commercial Road Shepton Mallet Somerset BA4 5BU

October 2018

IER

Section B Disclosure

Only complete if the examiner needs to highlight matters of concern (see CC32, Independent examination of charity accounts: directions and guidance for examiners).

Give here brief details of any items that the examiner wishes to disclose .

October 2018

IER