## **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| |CDKL5UK
18 April 2024 to 31 March 2025
Charity No 1207922
COMMUNITY ACCOUNT
Queries
Date
Ref.
Description
11.12.2024
Just Giving
12.12.2024
Just giving
13.12.2024
Ref 25
Bethan Vaughn Payroll
16.12.2024
Just Giving
17.12.2024
Transfer to Paypal
17.12.2024
Just Giving
19.12.2024
Ref 14
AS Print
23.12.2024
Just Giving
24.12.2024
Charities Trust
27.12.2024
Just Giving Subs DD
02.01.2025
Ref 5
Parks Bookkeeping INV 1551 & INV 1533
03.01.2025
EE Ltd DD
06.01.2025
Ref 10
BPNA CA & Beth attended
07.01.2025
Transfer to Paypal
08.01.2025
Just Giving
14.01.2025
Just Giving
15.01.2025
Ref 25
Bethan Vaughn Payroll
16.01.2025
Transfer to Paypal
21.01.2025
Premium Credit Ltd DD
21.01.2025
Just Giving
22.01.2025
Ref 18
Rare Minds
27.01.2025
Just Giving Subs DD
30.01.2025
Charities Trust
03.02.2025
EE Ltd DD
03.02.2025
Just Giving
05.02.2025
Transfer to Paypal
05.02.2025
Just Giving
10.02.2025
Premium Credit Ltd DD
11.02.2025
Just Giving
12.02.2025
Just Giving
14.02.2025
Ref 25
Bethan Vaughn Payroll
17.02.2025
Transfer to Paypal
17.02.2025
Just Giving
17.02.2025
Much Loved
18.02.2025
Ref 3
Parks Bookkeeping INV 1573
19.02.2025
NEST DD
19.02.2025
Transfer to Paypal
19.02.2025
Just Giving
25.02.2025
Just Giving Subs DD
25.02.2025
Ref 2
B Vaughn Expenses ICO registration
26.02.2025
Just giving
27.02.2025
REF 1
Beacon Apps - Database
28.02.2025
Transfer to Paypal
03.03.2025
Just Giving
04.03.2025
Just Giving
05.03.2025
NEST DD
05.03.2025
Transfer to Paypal
06.03.2025
EE Ltd DD
07.03.2025
Ref 19
Rare Minds
10.03.2025
Premium Credit Ltd DD
12.03.2025
Just Giving
12.03.2025
Ref 26
14.03.2025
Ref 25
B Vaughn Payroll
17.03.2025
Transfer to Paypal
14.03.2025
Just Giving
18.03.2025
Just Giving
24.03.2025
Just Giving
25.03.2025
Just Giving Subs DD
26.03.2025
Just Giving
31.03.2025
Just Giving
Balance correction to Bank a/c
Balance as at 31 March 2025
COMMUNITY ACCOUNT Totals
RESTRICTED ACCOUNT
Balance as at 18 April 2024
23.05.2024
Ref 6
V Create INV 0007647
28.05.2024
Ref 8
Orion for V Create
03.06.2024
Ref 21
Bristol Univ. Hospital for Q4 23/24 INV U0103237
06.08.2024
Ref 22
Bristol Univ. Hospital For Q1 24/25
07.11.2024
Ref 23
Bristol Univ. Hospital for Q2 24/25
27.01.2025
Ref 24
Bristol Univ. Hospital for Q3 24/25
Balance as at 31 March 2025
RESTRICTED ACCOUNT Totals
PAYPAL GENERAL FUNDS
Gross Income
Balance as at 18 April 2024
30.04.2024
Mass payment - Paypal Giving Fund
£ 26.17
03.05.2024
123 Reg Ltd
13.05.2024
123 Reg Ltd
13.05.2024
Bank Transfer
30.05.2024
Mass payment - Paypal Giving Fund
£ 1.00
03.06.2024
123 Reg Ltd
03.06.2024
Bank Transfer
13.06.2024
123 Reg Ltd
13.06.2024
Bank Transfer
28.06.2024
Mass payment - Paypal Giving Fund
£ 20.45
Lou Lou -Ruth's expenses above|Income
Expenditure
Transfer
£ 24.68
£ 222.91
£ 780.80
£ 91.38
£ 23.99
£ 27.29
£ 426.00
£ 9.51
£ 50.00
£ 18.00
£ 50.00
£ 28.34
£ 470.00
£ 14.39
£ 2.37
£ 2.37
£ 780.80
£ 23.99
£ 24.07
£ 2.37
£ 170.00
£ 18.00
£ 50.00
£ 17.76
£ 3,292.38
£ 14.39
£ 574.47
£ 24.08
£ 1,775.80
£ 210.82
£ 780.80
£ 23.99
£ 121.12
£ 58.95
£ 25.00
£ 76.80
£ 22.79
£ 176.88
£ 18.00
£ 52.00
£ 14.25
£ 694.80
£ 390.00
£ 96.15
£ 18.81
£ 33.60
£ 14.39
£ 17.76
£ 255.00
£ 24.08
£ 4.75
£ 912.00
£ 780.80
£ 26.39
£ 5,761.88
£ 85.49
£ 1,135.25
£ 18.00
£ 1,006.39
£ 302.91
£ 0.02
£ 50,728.89 £ 10,877.84 £ 772.95
£ 9,360.00
£ 9,360.00
£ 1,917.54
£ 1,961.67
£ 1,961.67
£ 2,229.72
£ 9,360.00 £ 17,430.60 £ -
Fees
Expenditure
Transfer

£ 11.99
£ 23.99
£ 9.81

£ 11.99
£ 10.99
£ 23.99
£ 23.99
|Balance
£ 54,172.17
£ 54,395.08
£ 53,614.28
£ 53,705.66
£ 53,681.67
£ 53,708.96
£ 53,282.96
£ 53,292.47
£ 53,342.47
£ 53,324.47
£ 53,274.47
£ 53,246.13
£ 52,776.13
£ 52,761.74
£ 52,764.11
£ 52,766.48
£ 51,985.68
£ 51,961.69
£ 51,937.62
£ 51,939.99
£ 51,769.99
£ 51,751.99
£ 51,801.99
£ 51,784.23
£ 55,076.61
£ 55,062.22
£ 55,636.69
£ 55,612.61
£ 57,388.41
£ 57,599.23
£ 56,818.43
£ 56,794.44
£ 56,915.56
£ 56,974.51
£ 56,949.51
£ 56,872.71
£ 56,849.92
£ 57,026.80
£ 57,008.80
£ 56,956.80
£ 56,971.05
£ 56,276.25
£ 55,886.25
£ 55,982.40
£ 56,001.21
£ 55,967.61
£ 55,953.22
£ 55,935.46
£ 55,680.46
£ 55,656.38
£ 55,661.13
£ 56,573.13
£ 55,792.33
£ 55,765.94
£ 61,527.82
£ 61,613.31
£ 62,748.56
£ 62,730.56
£ 63,736.95
£ 64,039.86
£ 64,039.88
£ 64,039.88
-£ 3,170.00
-£ 12,530.00
-£ 3,170.00
-£ 5,087.54
-£ 7,049.21
-£ 9,010.88
-£ 11,240.60
-£ 11,240.60
£ 3.58
£ 29.75
£ 17.76
-£ 6.23
£ 3.58
£ 4.58
-£ 7.41
£ 3.58
-£ 20.41
£ 3.58
£ 24.03|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|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|Charity No 1207922
Queries
Income
Expenditure
Transfer
£ 11.99
£ 23.99
£ 15.53
£ 11.99
£ 11.99
£ 23.99
£ 23.99
£ 11.99
£ 11.99
£ 23.99
£ 23.99
£ 11.99
£ 11.99
£ 23.99
£ 23.99
£ 11.99
£ 11.99
£ 23.99
£ 23.99
£ 14.39
£ 14.39
£ 23.99
£ 23.99
£ 14.39
£ 14.39
£ 23.99
£ 23.99
£ 14.39
£ 14.39
£ 23.99
£ 23.99
£ 22.79
£ 22.79
£ 390.00
£ 390.00
£ 14.39
£ 14.39
£ 26.39
£ 26.39
47.62
0.00
820.57
772.95
Gross Income
Fees
Expenditure
Transfer
**£ - £ - £ - £ -**|Balance
£ 12.04
-£ 11.95
£ 3.58
-£ 8.41
£ 3.58
-£ 20.41
£ 3.58
-£ 8.41
£ 3.58
-£ 20.41
£ 3.58
-£ 8.41
£ 3.58
-£ 20.41
£ 3.58
-£ 8.41
£ 3.58
-£ 20.41
£ 3.58
-£ 10.81
£ 3.58
-£ 20.41
£ 3.58
-£ 10.81
£ 3.58
-£ 20.41
£ 3.58
-£ 10.81
£ 3.58
-£ 20.41
£ 3.58
-£ 19.21
£ 3.58
-£ 386.42
£ 3.58
-£ 10.81
£ 3.58
-£ 22.81
£ 3.58
£ 3.58
£ 3.58
**£ -**
£ -
£ -
**£ -**|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|| |CDKL5UK
18 April 2024 to 31 March 2025
Charity No 1207922
COMMUNITY ACCOUNT
Queries
Date
Ref.
Description
11.12.2024
Just Giving
12.12.2024
Just giving
13.12.2024
Ref 25
Bethan Vaughn Payroll
16.12.2024
Just Giving
17.12.2024
Transfer to Paypal
17.12.2024
Just Giving
19.12.2024
Ref 14
AS Print
23.12.2024
Just Giving
24.12.2024
Charities Trust
27.12.2024
Just Giving Subs DD
02.01.2025
Ref 5
Parks Bookkeeping INV 1551 & INV 1533
03.01.2025
EE Ltd DD
06.01.2025
Ref 10
BPNA CA & Beth attended
07.01.2025
Transfer to Paypal
08.01.2025
Just Giving
14.01.2025
Just Giving
15.01.2025
Ref 25
Bethan Vaughn Payroll
16.01.2025
Transfer to Paypal
21.01.2025
Premium Credit Ltd DD
21.01.2025
Just Giving
22.01.2025
Ref 18
Rare Minds
27.01.2025
Just Giving Subs DD
30.01.2025
Charities Trust
03.02.2025
EE Ltd DD
03.02.2025
Just Giving
05.02.2025
Transfer to Paypal
05.02.2025
Just Giving
10.02.2025
Premium Credit Ltd DD
11.02.2025
Just Giving
12.02.2025
Just Giving
14.02.2025
Ref 25
Bethan Vaughn Payroll
17.02.2025
Transfer to Paypal
17.02.2025
Just Giving
17.02.2025
Much Loved
18.02.2025
Ref 3
Parks Bookkeeping INV 1573
19.02.2025
NEST DD
19.02.2025
Transfer to Paypal
19.02.2025
Just Giving
25.02.2025
Just Giving Subs DD
25.02.2025
Ref 2
B Vaughn Expenses ICO registration
26.02.2025
Just giving
27.02.2025
REF 1
Beacon Apps - Database
28.02.2025
Transfer to Paypal
03.03.2025
Just Giving
04.03.2025
Just Giving
05.03.2025
NEST DD
05.03.2025
Transfer to Paypal
06.03.2025
EE Ltd DD
07.03.2025
Ref 19
Rare Minds
10.03.2025
Premium Credit Ltd DD
12.03.2025
Just Giving
12.03.2025
Ref 26
14.03.2025
Ref 25
B Vaughn Payroll
17.03.2025
Transfer to Paypal
14.03.2025
Just Giving
18.03.2025
Just Giving
24.03.2025
Just Giving
25.03.2025
Just Giving Subs DD
26.03.2025
Just Giving
31.03.2025
Just Giving
Balance correction to Bank a/c
Balance as at 31 March 2025
COMMUNITY ACCOUNT Totals
RESTRICTED ACCOUNT
Balance as at 18 April 2024
23.05.2024
Ref 6
V Create INV 0007647
28.05.2024
Ref 8
Orion for V Create
03.06.2024
Ref 21
Bristol Univ. Hospital for Q4 23/24 INV U0103237
06.08.2024
Ref 22
Bristol Univ. Hospital For Q1 24/25
07.11.2024
Ref 23
Bristol Univ. Hospital for Q2 24/25
27.01.2025
Ref 24
Bristol Univ. Hospital for Q3 24/25
Balance as at 31 March 2025
RESTRICTED ACCOUNT Totals
PAYPAL GENERAL FUNDS
Gross Income
Balance as at 18 April 2024
30.04.2024
Mass payment - Paypal Giving Fund
£ 26.17
03.05.2024
123 Reg Ltd
13.05.2024
123 Reg Ltd
13.05.2024
Bank Transfer
30.05.2024
Mass payment - Paypal Giving Fund
£ 1.00
03.06.2024
123 Reg Ltd
03.06.2024
Bank Transfer
13.06.2024
123 Reg Ltd
13.06.2024
Bank Transfer
28.06.2024
Mass payment - Paypal Giving Fund
£ 20.45
Lou Lou -Ruth's expenses above|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 |RECEIPTS AND PAYMENTS ACCOUNT SUMMARY
TOTAL receipts for the year
TOTAL Payments for the year
CASH, BANK and similar funds
Brought Forward
Transfers Between Funds
Carried Forward
STATEMENT OF ASSETS AND LIABILITIES
MONETARY ASSETS
BANK Current Accounts
PAYPAL Account
RECEIPTS FOR THE YEAR
Donations
Donation for Research
University Hospital Research Co-Ordinator
Website Support For Alliance
Orion Grant for Vcreate Platform (CDKL5 COE)
Orion Consultancy Grant
Sale of Merchandise
PAYMENTS FOR THE YEAR
Merchandise
Office Costs / Postage / Mobile Telephone
Marketing
Website Development / Education
Fees and Subscriptions
Family Support & Counselling Programme
Grants for Research & Conference expenses
Payroll & Admin costs
Travel costs (non Trustee)
University Hospital Research Co-Ordinator
Website Support For Alliance
Grant to Royal College Dublin
V Create Platform Year 1/2
Trustee expenses
Just Giving Fees
Paypal Fees
Accountancy and Legal Fees
Subscriptions|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|**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 1 **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** . 2 **October 2018** **IER**