(a company limited by guarantee) ## **REPORT & FINANCIAL STATEMENT** 2025 Financial Statements for the period ended 31 December 2025 **Company Number:** 12447230 **Charity Reg. Number:** 1190344 ## **TABLE OF CONTENTS** **About Us** ..............................................................................................................................................................p.3 **Our Trustees** .....................................................................................................................................................p.4 **Our Work** .............................................................................................................................................................p.5-6 **Legal & Administrative Information** ...........................................................................................p.7 **Trustees’ Report** ...........................................................................................................................................p.8-12 **Independent Examiner's Report** ...................................................................................................p.13 **Statement of financial activities for the period ended 31 December 2025** ............................................................................................................................................................................p.14 **Balance sheet as at 31 December 2025** ....................................................................................p.15 **Notes to the accounts** ..............................................................................................................................p.16-21 **Get in touch** ........................................................................................................................................................p.22 **- 2 -** ## **ABOUT US** Cure CLCN4 is a UK-registered charity focused on providing **support** , raising **awareness** and, funding scientific **research** for effective treatments for _CLCN4_ -related condition. Cure CLCN4 was founded by Peter Trill and Gina Tan (W Tan), the parents of Daphne, a little girl with _CLCN4_ -related condition. _Cure CLCN4 was set up with the goal of advancing the muchneeded basic science and translational research in this condition. It is built on the foundation of hope and commitment, that one day there would be a cure for Daphne and children like her._ ## **About CLCN4-related condition** _CLCN4_ -related neurodevelopmental condition (CLCN4-NDC) is a rare genetic condition that can affect brain development and learning. People with _CLCN4_ -NDC may have intellectual disability, as well as epilepsy, behavioural challenges, movement difficulties, and other symptoms. So far, just over 150 families have been identified worldwide, but the true number of people affected is still unknown. Because the condition is so rare and still not widely recognised, many families face a long journey to get answers. There is also very limited information about how the condition develops and why it affects people so differently. Symptoms and severity can vary widely from one person to another. Since so little is currently known about CLCN4-NDC, there are no targeted treatments yet, and much more research is urgently needed. ## **Our mission** To improve the understanding and treatment of _CLCN4_ -related condition through research, support for diagnosed individuals and their families, and awareness initiatives. We are committed to creating collaborations among scientists, healthcare professionals, and the patient community to develop effective treatments and improve the lives of those living with _CLCN4_ -related condition. ## **Our vision** A world where a diagnosis of a _CLCN4_ -related condition comes with hope and support, not uncertainty. We aim to transform the landscape of _CLCN4_ research, ensuring that every diagnosed family has access to precise, comprehensive information, effective disease-specific therapies, and a supportive community. **- 3 -** ## **OUR TRUSTEES** ## **PETER TRILL** ## (CO-FOUNDER & TRUSTEE) Peter is a co-founder of the UK registered Charity, Cure CLCN4. He is a father of three awesome children, the youngest of whom is affected by CLCN4. He is a company founder and board member working in the biotechnology sector. He is also a seed investor and mentor to founders of early-stage healthcare and technology companies. ## **DR. GINA TAN (W TAN)** ## (CO-FOUNDER & TRUSTEE) Gina is a co-founder of Cure CLCN4, a medical clinician and mother to two girls, the younger being affected by CLCN4. She studied medicine at King’s College London and trained in hospitals in London and Bath, subspecialising in Rheumatology. She undertook clinical research training at Queen Mary University London. ## **DR. ALAN WISE** (TRUSTEE) Alan is a Trustee at Cure CLCN4. He is an experienced and successful biotech entrepreneur with in-depth knowledge of drug discovery. He is currently CEO of Duke Street Bio. Previous roles include CEO of the successful biotech, IOmet Pharma which was acquired by MSD in 2016 and senior drug discovery roles in large Pharma (GlaxoSmithKline). ## **LARRY LOUSION** (TRUSTEE) Larry is a Trustee at Cure CLCN4 and a partner at TC Group (London). He is a fellow of the Association of Chartered Certified Accountants with over 20 years experience in general practice. Being very passionate about the goals of CureCLCN4, Larry is committed to using his skills and experience to build a strong financial infrastructure within the company. ## **PAUL MCGUINNESS** (TRUSTEE) Paul is a technology consultant who has founded and been involved in various tech start-ups and is passionate about the power of technology to improve the way we interact, work and live. He aims to bring his experience with technology platforms to grow awareness about CLCN4 and make a long term positive impact for affected families. ## **ALEXIS KARIM** ## (TRUSTEE) Alexis is a Trustee at Cure CLCN4. He is also a Corporate Partner at Charles Russell Speechlys. He holds a strong interest in science and medicine and often seeks to combine this with his role as a lawyer. **- 4 -** ## **OUR WORK** ## **Scientific research** - Funded the generation of three _**CLCN4**_ **-rat models** , which have been made available to the scientific community via the Infrafrontier repository. Characterisation work is ongoing. - Established a biorepository of _CLCN4_ -derived patient fibroblasts at Leiden University. Samples are being reprogrammed into **induced pluripotent stem cells (iPSCs)** . Two lines have been completed, and two are in progress, with plans to continue expanding the number of available lines. - We collaborate with Simons Searchlight to support recruitment to the _**CLCN4**_ **patient registry,** which currently includes over 70 individuals. - We have brought together a **community of scientists and clinicians** working on _CLCN4_ -related condition and related fields, supporting the establishment of meaning collaborations and expanding the research network around this condition. We have achieved this via the organisation of our annual scientific conference, running since 2022. - In 2024 we launched our **first grant program** , 150,000 GBP which has been used to fund three projects on _CLCN4_ -related condition: i) characterisation of CLCN4-rat models; ii) functional analysis of newly identified _CLCN4_ -variants of unknown significance and iii) electrophysiological examination of neuronal electrical activity in _CLCN4_ rat models. - Supported recruitment for a pilot study aimed at assessing the **speech & language** abilities of individuals with _CLCN4_ -related condition (Garrett et al, 2025). _2025 Scientific Conference_ **- 5 -** ## **Community support** Although the focus at Cure CLCN4 is to move the research forward, we also aim to support the CLCN4 community. Below are some of our initiatives: **Family Conferences** : We have held three online meetings for individuals with _CLCN4_ -related condition and their families. During these conferences we invite speakers working on _CLCN4_ -related condition to explain the current state of research in an accessible, family-friendly format. We also include Q&As, a panel of expert clinicians and scientists, and give families the opportunity to ask questions. **Informational resources** : Most information about _CLCN4_ -related condition is available via research publications. Cure CLCN4 aims to make this information accesible to families of all over the world by providing familyfriendly summaries of recent publications (https://cureclcn4.org/palmer-etal-2022-a-summary-for-families/). We have also created the Cure CLCN4 Welcome Pack which contains expert-checked, up-to-date information on _CLCN4_ -condition including biology, genetics, clinical care, FAQs, etc (https://cureclcn4.org/resources_families/) **Community connection & support** : We actively connect families around the world so they can share experiences, ask questions, and learn from others who understand the condition. We do this through a private Facebook group, via online community-wide family meetings, and by connecting families from the same country/area. For many, this is the first time they meet someone facing similar challenges. **- 6 -** **CURE CLCN4 (a company limited by guarantee)** ## **Le al and administrative information g** ## **Governed by** Memorandum and Articles of Association dated 6 February 2020. ## **Trustees** P Trill A Karim Gina Tan (W Tan) A Wise L Louison P McGuinness ## **Registered Office** 2 Duke Street London W1U 3EH ## **Registered charity number** 1190344 ## **Company Number** 12447230 ## **Accountants** TC Group 6th Floor, Kings House 9-10 Haymarket London United Kingdom SW1Y 4BP ## **Independent Examiner** Sterling Grove Accountants Chartered Certified Accountants 2 Regatta Place Fawley House Marlow Road Bourne End Buckinghamshire SL8 5TD **- 7 -** **CURE CLCN4 (a company limited by guarantee)** ## **Trustees’ Re ort p** The trustees, who are Directors for the purposes of company law, present the annual report together with the financial statements and auditors’ report of the charitable company for the year ended 31 December 2025. ## **TRUSTEES** The trustees serving during the year are as follows: P Trill A Karim Gina Tan (W Tan) A Wise L Louison P McGuinness ## **STRUCTURE, GOVERNANCE AND MANAGEMENT** ## Governing document The organisation is a charitable company limited by guarantee. The company was established under a memorandum of Association which sets out the objects and powers of the charitable company and is governed under its Articles of Association. ## Recruitment, Appointment and Training of Trustees Trustees can be nominated by any member of the Board of Trustees to replace a trustee stepping down. Appointment of newly nominated Trustees requires unanimous approval of all Trustees. The new Trustee is provided with details of Trustees’ roles and responsibilities. Training as such is not provided as no one has felt it to be necessary. At meetings, there is always room for questions and explanations. ## **OBJECTIVES AND ACTIVITIES** ## Charitable Objectives Cure CLCN4 Limited is a not-for-profit organization constituted with charitable purposes in perpetuity. The company is limited by guarantee and is governed by a memorandum and articles of association. The objectives of Cure CLCN4 Limited are: A) The advancement of health, relief of sickness, and saving of lives by such means as the trustees see fit including but not exclusively through: **- 8 -** **CURE CLCN4 (a company limited by guarantee)** **Trustees’ report continued** i) Providing relief and assistance to people suffering from pathogenic variants of clcn4; ii) The funding of medical research anywhere in the world for the purpose of discovering, developing, and delivering treatment for patients with pathogenic variants of clcn4; B) The furtherance of such other charitable purpose or charitable purposes as the trustees in their absolute discretion from time to time think fit, in each case for the public benefit. ## **PUBLIC BENEFIT** Cure CLCN4 provides public benefit by advancing knowledge, awareness and understanding of CLCN4-related neurodevelopmental condition, a rare genetic condition affecting individuals and families worldwide. The charity supports research, promotes collaboration between clinicians, scientists and families, and provides accessible information and resources to help families better understand the condition and engage with research opportunities. Through its activities, Cure CLCN4 aims to improve diagnosis, care, support and, in the longer term, the development of disease-specific therapeutic approaches for people affected by CLCN4-related condition. ## **ACHIEVEMENTS AND PERFORMANCE** ## _**Research and scientific progress**_ During 2025, Cure CLCN4 continued to support research into CLCN4-related condition through its pilot grant program, with funded projects progressing and end-of-grant reporting undertaken where applicable. The charity also continued its efforts to establish CLCN4 patient-derived cell lines for use in research, in collaboration with Leiden University, an important resource to support future studies into the condition. The charity held its 2025 Scientific Conference in May, bringing together researchers, clinicians and other stakeholders to share progress, strengthen collaboration and encourage further interest in CLCN4 research. The event also supported engagement from early-career researchers through poster and lightning talk sessions. Cure CLCN4 also supported work that contributed to the publication of a speech and language study in individuals with CLCN4-related condition, helping to expand knowledge of the communication profile and needs of individuals affected by CLCN4-related condition. The patient registry continued to grow during the year, supporting better understanding of CLCN4-related condition. ## _**Families & community**_ Cure CLCN4 continued to grow and strengthen its international community of families during 2025. The charity maintained direct engagement with families through calls, events and online communications, helping families feel connected, informed and supported. **- 9 -** **CURE CLCN4 (a company limited by guarantee)** **Trustees’ report continued** The 2025 Family Conference was the charity’s largest family meeting to date and provided an opportunity for families to hear updates, ask questions and connect with others with shared experience. Translation support helped make the event more accessible to non-English-speaking families. The charity also expanded accessible resources for families, including the Cure CLCN4 Welcome Pack, which was translated into multiple languages and made available online. Cure CLCN4 also helped identify families with variants of uncertain significance and supported appropriate referral to clinical and research experts, contributing to wider efforts to improve understanding of CLCN4 variants. ## _**Awareness, communications and community building**_ The charity continued to raise awareness of CLCN4-related condition through its website, social media and communications activity. During the year, Cure CLCN4 shared updates about research, events, family resources and scientific developments. Communications activity helped increase visibility of the condition, support family engagement and encourage participation in the registry and other research-related activities. ## _**Overall impact**_ Overall, Cure CLCN4’s work in 2025 made a tangible difference by strengthening the research infrastructure for CLCN4-related condition, increasing patient registry participation, improving access to family information and support, and building collaboration across families, clinicians and researchers. The charity’s activities helped ensure that a very rare condition remains visible, studied and better understood, while laying foundations for improved care, future therapeutic research and greater support for affected families worldwide. ## **FINANCIAL REVIEW** Total Income for the year was £184,961 (2024: £88,637) split between unrestricted income of £166,302 and restricted income of £18,659. The charities accounts show a deficit of £8,657 (2024: £3,401 surplus.) This is our sixth year of operations, during which we have continued to strengthen both our research programme and our support for the CLCN4 community. Over the past year, we have made important progress in research, including the generation of the first two induced pluripotent stem cell (iPSC) lines and the development of a strategic research plan to help guide future priorities. In addition, two of the three Cure CLCN4-funded research projects have now been completed. Alongside this, our family community has continued to grow, and we remain committed to providing connection, information and practical resources to those affected by CLCN4-related condition. We have also continued to expand our fundraising efforts to support both current activities and future research. This year, we were also pleased to celebrate our fourth scientific conference and our third family meeting, both of which continue to strengthen collaboration, shared learning and community engagement. **- 10 -** **CURE CLCN4 (a company limited by guarantee) Trustees’ report continued** ## **POLICY ON RESERVES** The Trustees have adopted a Reserves Policy which sets out the charity’s approach to reserves, including the definition of free reserves, why reserves are held, and how the target level is calculated, monitored and replenished. The policy applies to unrestricted funds only and defines free reserves as unrestricted funds available for general use after deducting designated funds and unrestricted tangible fixed assets. The Trustees have determined that Cure CLCN4 should maintain free reserves equivalent to 5–6 months of planned operating expenditure. This level is considered sufficient to manage temporary income gaps, meet unexpected costs, provide orderly wind-down funding if required, and allow the charity to respond to time-sensitive strategic opportunities. At 31 December 2025, the charity held free reserves of £(8,657) (2024: £3,401). This is below the target range set by the Trustees. The Trustees continue to monitor reserves regularly and will agree actions to restore reserves to the target range, including cost control, targeted fundraising and careful management of future commitments. ## **PLANS FOR FUTURE PERIODS** In future periods, Cure CLCN4 plans to finalise the current CLCN4 Pilot Grant programme, including completion of final reporting and consideration of how the data and findings generated can inform future research priorities. The charity will continue to support initiatives aimed at improving understanding of the basic biology of CLCN4 and the mechanisms underlying CLCN4related condition. Cure CLCN4 will continue to grow the patient registry and support families to complete the registration process. The charity also intends to expand the range of CLCN4 variants for which patient-derived samples are available, helping to build research resources that can support future functional studies. The charity will continue to grow both the research and family communities through scientific meetings, family events, direct family engagement and international collaboration. It will also continue to create and translate accessible resources for families, ensuring that information is available to international families and those who do not speak English as a first language. To support these plans, Cure CLCN4 will seek to strengthen fundraising activity, increase the number of grant and trust applications submitted, and grow grant and corporate funding. The charity will also continue to develop its communications and partnerships to raise awareness of CLCN4-related condition and broaden support for its work. **- 11 -** **CURE CLCN4 (a company limited by guarantee)** **Trustees’ report continued** ## **STATEMENT OF TRUSTEES’ RESPONSIBILITIES** The Trustees’ are required under company law to prepare financial statements for each financial year. Under that law the trustees have elected to prepare the financial statements in accordance with United Kingdom Generally Accepted Accounting Practice (United Kingdom Accounting Standards and applicable law). Under company law Trustees’ must not approve the financial statements unless they are satisfied that they give a true and fair view of the company and of the surplus or deficit of the company for that period. In preparing those financial statements the Trustees’ are required to: - Select suitable accounting policies and then apply them consistently; Observe the methods and principles in the Charities SORP; - Make judgements and estimates that are reasonable and prudent; - State whether applicable UK accounting standards have been followed, subject to any material departures disclosed and explained in the financial statements; - Prepare the financial statements on a going concern basis unless it is inappropriate to presume that the company will continue in operation. The Trustees’ are responsible for keeping adequate accounting records that are sufficient to show and explain the company’s transactions and disclose with reasonable accuracy at any time the financial position of the Company and enable them to ensure that the financial statements comply with the requirements of the Companies Act 2006. They are also responsible for safeguarding the assets of the Company and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities. The above report has been prepared in accordance with the special provisions of Part 15 of the Companies Act 2006 relating to small companies. **----- Start of picture text -----**
SIGN
On behalf of the Trustees
............................
Mr P Trill
Director
**----- End of picture text -----**
Date: 03.06.2026 **- 12 -** CURE CLCN4 Limited Independent Examiner's Report to the trustees of Cure CLCN4 Limited ('the Company,) I report to the charity trustees on my examination of the accounts of the Company for the year ended 31 December 2025. Responsibilities and basis of report As the charity's trustees of the Company (and also its directors for the purposes of company law) you are responsible for the preparation of the accounts in accordance with the requirements of the Companies Act 2006 ('the 2006 Act,). Having satisfied myself that the accounts of the Company are not required to b¢ audited under Part 16 of the 2006 Act and are eligible for independent examination, I report in respect of my examination of your charity's accounts as carried out under section 145 of ihe Charities Act 2011 ('the 2011 Act,). In carrying out my exarnination I have followed the Directions given by the Charity Commission under section 145(5)(b) of the 2011 Act. Independent examlner's statement I have completed my examination. I confirm that no matters have come to my attention in connection with the examination giving me cause to believe: l.accounting records were not kept in respect of Cure CLCN4 Limited as required by Section 386 of the 2006 Act. or 2. Ihe accounts do not accord with those records; or 3. the accounts do not comply with the accounting requirements of section 396 of the 2￿)6 Act other than any requirement that the accounts give a 'true and fair view, which 1$ not a matter Considered as part of an independent examination: or 4. the accounts have not been prepared in accordance with the methods and principles of the Statement of Recommended Practice for accounting and reporting by charities (applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic ofireland (FRS 102)]. I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of th¢ accounts to be reached. Mr G P Amasanti FCCA Chartered CeTtifi¢d Accountants Sterling Grove Accountants 2 Regatta Place Fawley House Marlow Road Bourne End Buckinghamshire SL8 STD Date:........ LC 13- **CURE CLCN4 (a company limited by guarantee)** **Combined Statement of Financial Activities and Income Statement for the period ended 31 December 2025** The statement of financial activities includes all gains and losses in the year. All incoming resources and resources expended derive from continuing activities. **- 14 -** **CURE CLCN4 (a company limited by guarantee)** ## **Balance sheet as at 31 December 2025** For the financial period ended 31 December 2025 the company was entitled to exemption from audit under section 477 of the Companies Act 2006. The members have not required the company to obtain an audit of these financial statements pursuant to section 476 of the Companies Act 2006. The trustees acknowledge their responsibilities for ensuring that the company keeps accounting records which comply with Section 368 of the Act and for preparing financial statements which give a true and fair view of the state of affairs of the company as at the end of the financial period and of its surplus or deficit for the financial period in accordance with the requirements of Sections 394 and 395 and which otherwise comply with the requirements of the Companies Act 2006 relating to accounts, so far as applicable to the company. These accounts have been prepared in accordance with the provisions applicable to small companies subject to the small companies’ regime and in accordance with FRS102 SORP. SIGN Approved on and signed on behalf of all directors by: Mr P Trill Director **Company Number: 12447230** **- 15 -** **CURE CLCN4 (a company limited by guarantee)** ## **Notes forming part of the accounts for the year ended 31 December 2025** ## **1. BASIS OF PREPARATION** Cure CLCN4 is a company limited by guarantee incorporated in England and Wales. The financial statements have been prepared in accordance with the Statement of Recommended Practice: Accounting and Reporting by Charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK (FRS 102) (effective 1 January 2015), the Financial Reporting Standard applicable in the UK (FRS 102), the Companies Act 2006 and the Charities Act 2011. The Charity constitutes a public benefit entity as defined by FRS 102. The accounts have been prepared under the historical cost convention with items recognised at cost or transaction value unless otherwise stated in the relevant notes to these accounts. The registered office address is 2 Duke Street, London, W1U 3EH. ## **2** . **ACCOUNTING POLICIES** ## **2.1 Incoming resources** All income is recognised once the charity has entitlement to the income, there is sufficient certainty of receipt and so it is probable that the income will be received, and the amount of income received can be measured reliably. ## **2.2 Offsetting** There has been no offsetting of assets and liabilities, or income and expenses, unless required or permitted by the FRS 102 SORP or FRS 102. ## **2.3 Grants and donations** Grants and donations are only included in the SoFA when the general income recognition criteria are met (5.10 to 5.12 FRS102 SORP). Unconditional grants are recognised as a liability and an expense as soon as the grantee is notified of the award. Conditional grants are recognized as an expense only when the grantee fulfils the specific performance-related conditions. **- 16 -** **CURE CLCN4 (a company limited by guarantee) Notes forming part of the accounts for the year ended 31 December 2025** ## **2.4 Direct charitable resources expended** Direct charitable expenditure includes the direct costs in furtherance of the charity’s objectives and are recognised as expenditure as soon as there is a legal or constructive obligation committing the charity to that expenditure, it is probable that settlement will be required and the amount of obligation can be measured reliably. Expenditure is accounted for under the accruals concept. ## **2.5 Administration resources expended** Administration costs represent the running costs of the charity and are recognised as expenditure as soon as there is a legal or constructive obligation committing the charity to that expenditure, it is probable that settlement will be required and the amount of obligation can be measured reliably. Expenditure is accounted for under the accruals concept. ## **2.6 Fund structure** Unrestricted income funds are general funds that are available for use at the trustees’ discretion in furtherance of the objectives of the charity. Restricted income funds are those donated for use in a particular area or for a specific purpose, the use of which is restricted to that area or purpose. Restricted income received during the year to 31 December 2025 were for the funding and sponsorship of the annual conference. A £7,000 grant from Highway One Trust was received in December 2024 but relates to activities taking place in 2025. It has therefore been treated as deferred income at 31 December 2024 and recognised in income in 2025. Donations above include restricted funds of £18,659 (2024 – Nil) for the funding of the annual conference. All restricted funds were used during the financial year. **- 17 -** **CURE CLCN4 (a company limited by guarantee)** ## **Notes forming part of the accounts for the year ended 31 December 2025** No employee received emoluments of more than £60,000 during the year. ## **7 Taxation** The Charity is a registered charity and is therefore exempt from taxation **- 18 -** **CURE CLCN4 (a company limited by guarantee)** **Notes forming part of the accounts for the year ended 31 December 2025** ## **11 Grant-making** ## **Analysis of grants** In 2025, Cure CLCN4 supported three research projects through the Cure CLCN4 Pilot Grant scheme. These grants were awarded to research groups working to improve understanding of _CLCN4_ -related neurodevelopmental condition and to support early-stage research that may inform future diagnosis, treatment and care. **- 19 -** The grants supported: - Raul E. Guzman, Research Center Juelich: research into the electrical activity of hippocampal neurons in _CLCN4_ rat models. This project examined how changes in CLCN4 affect neuronal excitability and identified altered firing patterns that may help explain disease mechanisms. - Yann Herault and Tania Sorg, PHENOMIN–ICS, CERBM GIE: characterisation of _CLCN4_ rat models carrying loss-of-function and A549V mutations. The project assessed behavioural, neurological, motor, growth and gastrointestinal features, helping to establish whether these models reflect symptoms seen in people with CLCN4-related conditions. - Michael Pusch, Istituto di Biofisica, CNR: functional analysis of _CLCN4_ variants. This project is testing how different variants affect ClC-4 function and its interaction with ClC-3, helping to classify variants and improve understanding of the molecular mechanisms underlying CLCN4related conditions. Together, these projects advanced knowledge of CLCN4 biology, disease models and variant function, and provided foundations for future research into potential therapeutic approaches. ## **No grants were made to individuals.** ## **12 Funds of the Company** All funds held by the company at 31 December 2025 are unrestricted and are to be used in the furtherance of the company’s objectives as outlined in the Trustees’ report on p. 8-12. ## **13 Analysis of Funds** **- 20 -** **CURE CLCN4 (a company limited by guarantee)** **Notes forming part of the accounts for the year ended 31 December 2025** ## **15 Related party transactions and Trustees’ Remuneration and expenses** Donations (Note 3) include a £141,681 contribution made by P Trill, a director of the company. At 31 December 2025, £18,046 (2024 - £18,046) was owed to P Trill in relation to expense payments made on behalf of the company. The trustees all give freely their time and expertise without any form of remuneration or other benefit in cash or kind. None of the trustees were paid expenses during the year **- 21 -** **CURE CLCN4 (a company limited by guarantee)** ## Get in touch info@cureclcn4.org www.cureclcn4.org **- 22 -** ## **Trustees’ Annual Report for the period** **From** 1st January 2025 **Period start date To** 31[st] December 2025 **Period end date** **Charity name:** Cure CLCN4 LTD ## **Charity registration number:** 1190344 ## **Objectives and Activities** ||SORP reference|| |---|---|---| |Summary of the purposes of
the charity as set out in its
governing document|Para 1.17|Cure CLCN4 Limited is a not-for-profit organisation
constituted with charitable purposes in perpetuity. The
company is limited by guarantee and is governed by a
memorandum
and
articles
of
association.
The
objectives of Cure CLCN4 Limited are:
a) The advancement of health, relief of sickness and
saving of lives by such means as the trustees see fit
including but not exclusively through:
i) Providing relief and assistance to people suffering
from pathogenic variants of clcn4; and
ii) The funding of medical research anywhere in the
world for the purpose of discovering, developing and
delivering treatment for patients with pathogenic
variants of clcn4; and
B) The furtherance of such other charitable purpose or
charitable purposes as the trustees in their absolute
discretion from time-to-time think fit, in each case for
thepublic benefit.| |Summary of the main
activities in relation to those
purposes for the public
benefit, in particular, the
activities, projects or services
identified in the accounts.|Para 1.17 and
1.19|The Charity's objects are such exclusively charitable
objects and purposes for the public benefit throughout
England and Wales as the trustees may in their
discretion think fit. The Charity furthers its charitable
purposes for the benefit of the public by funding or
undertaking scientific research for the advancement of
knowledge of Clcn4 related condition and by
supporting those affected by it.| |Statement confirming
whether the trustees have
had regard to the guidance
issued by the Charity
Commission on public
benefit|Para 1.18|The trustees have due regard to the Charity
Commission's guidance as to operation of the public
benefit requirement when exercising powers or duties
to which the guidance is relevant and in their opinion
the charity's activities are wholly for the benefit of the
public.| ## **Additional information (optional)** You may choose to include further statements where relevant about: SORP reference Para 1.38 Policy on grant making Para 1.38 Policy on social investment including program related investment Para 1.38 Contribution made by volunteers Other ## **Achievements and Performance** ||SORP reference|| |---|---|---| |Summary of the main
achievements of the charity,
identifying the difference the
charity’s work has made to
the circumstances of its
beneficiaries and any wider
benefits to society as a
whole.|Para 1.20|Cure CLCN4 LTD has successfully funded the
generation of important tools for the furthering of
scientific research into CLCN4 condition (specifically
three rat models of CLCN4-related condition and
several CLCN4 patient-derived cell lines), and
continued supporting the expansion of the CLCN4
online patient registry (hosted by Simons Searchlight)
We have worked on supporting affected families via
the provision of accessible and up-to-date information
on CLCN4 condition. Further we organised the fourth
Cure CLCN4 Scientific Meeting, which took place in
London, and successfully brought together the
scientific and clinical community for two days of talks
and discussions on CLCN4-condition. We also
organised an online Family Meeting for families living
with CLCN4-related condition. The meeting included
short talks from invited speakers as well as a panel
Q&A during which families had the chance to ask
questions.| **Additional information (optional)** You may choose to include further statements where relevant about: |Achievements against
objectives set|Para 1.41|| |---|---|---| |Performance of fundraising
activities against objectives
set|Para 1.41|| |Investment performance
against objectives|Para 1.41|| Other ## **Financial Review** |**Financial Review**||| |---|---|---| |Review of the charity’s
financial position at the end
of the period|Para 1.21|The charity’s financial position at the end of 2025 is
healthy with a balance of 8,657 GBP. This is the fifth
year that the charity has an income. This revenue has
allowed us to support the charity’s projects in the
furtherance of our objectives including research and
support of affected families.| |Statement explaining the
policy for holding reserves
stating why they are held|Para 1.22|The trustees aim to maintain reserves at a level which
equates to approximately six months of charitable
expenditure. The trustees consider that this level will
provide sufficient funds for operational needs and
ensure that support and governance costs are
covered. The trustees consider that a level of 5-6
months is sufficient. Although the reserves at 31
December 2025 fell below the level desired by the
trustees this will be replenished in early 2026 by a
cash donation from Peter Trill,a charitytrustee.| |Amount of reserves held|Para 1.22|8,657 GBP| |Reasons for holding zero
reserves|Para 1.22|**N/A**| |Details of fund materially in
deficit|Para 1.24|**N/A**| |Explanation of any
uncertainties about the
charity continuing as a going
concern|Para 1.23|**No uncertainties.**| |**Additional information (optional)**
You may choose to include further statements|**Additional information (optional)**
You may choose to include further statements|where relevant about:| |---|---|---| |The charity’s principal
sources of funds (including
any fundraising)|Para 1.47|| |Investment policy and
objectives including any
social investment policy
adopted|Para 1.46|| |A description of the principal
risks facing the charity|Para 1.46|| |Other||| ## **Structure, Governance and Management** |Description of charity’s
trusts:||| |---|---|---| |Type of governing document
(trust deed, royal charter)|Para 1.25|Memorandum and Articles Incorporated 06
Feb 2020| |How is the charity
constituted?
(e.g unincorporated
association, CIO)|Para 1.25|Charitable company (limited by guarantee)| |Trustee selection methods
including details of any
constitutional provisions e.g.
election to post or name of
any person or body entitled
to appoint one or more
trustees|Para 1.25|The Board shall be permitted to appoint by
majority decision any individual who is
eligible as a Trustee to fill a vacancy in their
number or as an additional Trustee.| **Additional information (optional)** You may choose to include further statements where relevant about: |||| |---|---|---| |Policies and procedures
adopted for the induction and
training of trustees|Para 1.51|| |The charity’s organisational
structure and any wider
network with which the
charity works|Para 1.51|| |Relationship with any related
parties|Para 1.51|| |Other||| ## **Reference and Administrative details** |Charity name|Cure CLCN4 LTD| |---|---| |Other name the charity uses|| |Registered charity number|1190344| |Charity’s principal address|2 Duke Street
London
W1U 3EH| ||| ## **Names of the charity trustees who manage the charity** |1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20|**Trustee name**|**Office (if any)**|**Dates acted if not for whole**
**year **|**Name of person (or body) entitled**
**to appoint trustee (ifany)**| |---|---|---|---|---| ||Peter James Alistair
Trill|||| ||Larry Louison|||| ||Alan Wise|||| ||Wang Sin Tan|||| ||Alexis Karim|||| ||Paul McGuinness|||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| – Corporate trustees names of the directors at the date the report was approved **Director name** Peter James Alistair Trill Larry Louison Alan Wise Wang Sin Tan Alexis Karim Paul McGuinness Name of trustees holding title to property belonging to the charity **Trustee name Dates acted if not for whole year** ## **Funds held as custodian trustees on behalf of others** Description of the assets N/A held in this capacity Name and objects of the N/A charity on whose behalf the assets are held and how this falls within the custodian charity’s objects Details of arrangements for N/A safe custody and segregation of such assets from the charity’s own assets ## **Additional information (optional)** ## **Names and addresses of advisers (Optional information)** **Type of Name Address adviser** ## **Name of chief executive or names of senior staff members (Optional information)** ## **Exemptions from disclosure** Reason for non-disclosure of key personnel details ## **Other optional information** ## **Declarations** **The trustees declare that they have approved the trustees’ report above.** **Signed on behalf of the charity’s trustees** **Signature(s) Full name(s)** Peter James Alistair Trill **Position (eg Secretary,** Trustee, Chair **Chair, etc) Date** 09/06/2026