**REGISTERED CHARITY NUMBER: 1054033** ## **Report of the Trustees and** **Unaudited Financial Statements for the Year Ended 31 December 2025** ## **for** ## **CDLS FOUNDATION UK & IRELAND** Knox Cropper LLP Chartered Accountants 153 -155 London Road Hemel Hempstead Hertfordshire HP3 9SQ **CDLS FOUNDATION UK & IRELAND** **Contents of the Financial Statements for the Year Ended 31 December 2025** **----- Start of picture text -----**
Page
Report of the Trustees 1 to 3
Independent Examiner's Report 4
Statement of Financial Activities 5
Balance Sheet 6
Notes to the Financial Statements 7 to 10
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**CDLS FOUNDATION UK & IRELAND** **Report of the Trustees for the Year Ended 31 December 2025** The trustees present their report with the financial statements of the charity for the year ended 31 December 2025. The trustees have adopted the provisions of Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019). ## **OBJECTIVES AND ACTIVITIES** ## **Objectives and aims** Its Mission:- "The CdLS Foundation UK & Ireland is a family support organisation which exists to ensure early and accurate diagnosis of CdLS throughout the world, promoting research, and enabling individuals, families, friends and professionals make informed decisions and plan for the affected person's present and future." ## **Main activities** To achieve its aims and objectives, the CdLS Foundation carries out the following activities: Twice yearly family conferences, a telephone helpline, publication of treatments and guidance for manifestations of the syndrome, information about the condition published in a twice yearly magazine, website and social media pages. ## **Public benefit** The public benefit of our activities falls into 2 areas. For families affected by CdLS, the benefit of our activities is that they have the best and most up to date relevant information in making decisions about the person they care for. For the wider public, the benefit of our activities is an awareness of the condition so that diagnosis is easier and minimising the drain on healthcare and other resources through informed care for affected people. In shaping our objectives and planning our activities, the trustees have considered the Charity Commission's guidance on public benefit, Guides PB1, PB2 and PB3. Page 1 **CDLS FOUNDATION UK & IRELAND** **Report of the Trustees for the Year Ended 31 December 2025** ## **ACHIEVEMENTS AND PERFORMANCE** This report is intended to give an overview of our activities during 2025 and an insight into the work of the Trustees: Our aim to hold 2 conference weekends per year was able to be implemented in 2025 despite the big rise in venue costs. In March of 2025, we held our Spring conference in Leeds. This was a well attended weekend with many new families in attendance. We were pleased to welcome some new faces among our roster of expert speakers. Dr Richard Fitzgerald gave us a talk on oral health issues. The latest PhD researcher Bethany Jones was also able to disseminate some of her findings, having now graduated and earned her doctorate. For the Autumn, we were in Cardiff. Once again, a great turnout from families. We continue to have each year's activities planned well in advance so we can announce the next event at each conference or other gathering. We have also implemented a policy where we try to minimise costs by not having all trustees present at every conference so there is a saving on expenses. For Cardiff, Chair David Axtell took a break from conference attendance. The World Federation Council met in November 2025. Chair David Axtell represented the UK. Among discussion topics were the plans for the World Conference in Australia in 2027. We were told the likely city would be Melbourne, with the timing aimed for 2nd week of October 2027. At the AGM in Leeds, the Trustees' Report as well as the accounts for 2024 were presented, voted upon and accepted. Trustees David Axtell, Bjorn Harris, Jack Young, Ryan Saunders and Sara Peaford Smith were re-elected. For the officers, David Axtell was re-elected as Chair, Charles Blockley re-elected as Vice Chair, Bjorn Harris re-elected as Treasurer, Kim Wildborne elected as Hon. Secretary. Sadly, we said goodbye to trustee and former Hon Sec. Ginny Penney, who stepped down after many years of service. She was thanked for all she contributed to the running of the Foundation. We were pleased to introduce as a new trustee, Dr Bethany Jones. We also said goodbye to Trustee Kelly Boland in January 2025. Kelly was thanked for her years of service. In setting a draft annual budget, the Trustees agreed a figure of £62,000 for 2025 as the amount needed to meet the Foundation objectives for the year. This is to cover paid admin, office space, conference costs, website hosting, magazine print and distribution, trustees' expenses and other administration costs. We were fortunate that there was an underspend on the funding for the PhD research which resulted in a large refund of monies already budgeted. We also explored a crowdfunding idea to try and get specific funding for our conferences. In the event, our expenditure was way below what we budgeted for with some judicious sourcing of conference venues as the major area of expenditure. We were also short on magazine editions in 2025 with only one issue. As a result, we were in the black to the tune of £6,490 on the year. Full details of our accounts are included herewith. International CdLS Awareness Day 2025 was successful in achieving both awareness and some fundraising. The reach across our social media platforms was pretty broad, with a lot of engagement from our audience. Among the many items presented through the day, we had a bespoke song written for us to highlight the importance of alternative communication strategies. This took the form of a video montage of families performing the lyrics in British Sign Language. Our annual planning meeting at the start of the year took in a strategy workshop to look hard at what we do and how we can do better. One of the driving aims was to provide a more solutions based approach to supporting our families. While we cannot solve all medical issues, there are some things we can help with which it is felt we don't currently offer. Part of this strategy also helps towards sourcing the best advisory information which knocks on to items like website development. We also had a workshop on Safeguarding. As trustees, it is important that we all have the appropriate training to recognise potential problems. We also appointed safeguarding leads for the Foundation. It was agreed that all trustees are DBS checked. ## **FINANCIAL REVIEW** ## **Financial position** Total income for the year was £53,629 (2024: £49,256) of which donations amounted to £26,551 (2024: £16,758) and fundraising events £24,956 (2024: £31,086). Total expenditure for the year was £47,139 (2024: £46,292) of which £44,554 (2024: £37,703) related to charitable activities. This gave rise to net income of £6,490 (2024: £2,964) for the year. The reserves at the end of the year amounted to £146,889 (2024: £140,399). Page 2 CDLS FOUNDATION UK & IRELAND Report of the Trustees for the Year Ended 31 December 2025 ## FINANCIAL REVIEW ## Investment policy and objectives The charity's investment is low risk and is held on a high interest account with Scottish Widows Bank. ## Reserves policy In the first instance The Foundation's aim is to hold two year's operating budget in reserve. Ideally it will grow reserves in order to hold sufficient capital to generate funds to cover the annual operating costs.The year-end reserve stood at £146,889 (up from £140,399) which keeps us over the 2 year current reserves policy ## STRUCTURE, GOVERNANCE AND MANAGEMENT ## Governing document The charity is controlled by its governing document, a deed of trust and constitutes an unincorporated charity. ## REFERENCE AND ADMINISTRATIVE DETAILS Registered Charity number 1054033 Principal address PO Box 8368 Ripley Derbyshire DE5 4DA ## Trustees D Axtell (Chairman) Ms F Kett (Trustee) R Saunders (Trustee) Mrs S Peaford Smith (Trustee) Mrs G Penney (Trustee) (resigned 22.3.25) C Blockley (Vice Chairman) J Young (Trustee) B Harris (Treasurer) Ms K Boland (Trustee) (resigned 15.1.25) Ms K Wildborne (Hon. Secretary) Dr B Jones (Trustee) (appointed 22.3.25) ## Independent Examiner Knox Cropper LLP Chartered Accountants 153 -155 London Road Hemel Hempstead Hertfordshire HP3 9SQ Approved by order of the board of trustees on 4 May 2026 and signed on its behalf by: D Axtell (Chairman) - Trustee Page 3 **Independent Examiner's Report to the Trustees of CdLS Foundation UK & Ireland** ## **Independent examiner's report to the trustees of CdLS Foundation UK & Ireland** I report to the charity trustees on my examination of the accounts of CdLS Foundation UK & Ireland (the Trust) for the year ended 31 December 2025. ## **Responsibilities and basis of report** As the charity trustees of the Trust you are responsible for the preparation 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 Act and in carrying out my examination I have followed all applicable Directions given by the Charity Commission under Section 145(5)(b) of the Act. ## **Independent examiner's statement** I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination giving me cause to believe that in any material respect: 1. accounting records were not kept in respect of the Trust as required by Section 130 of the Act; or 2. the accounts do not accord with those records; or 3. the accounts do not comply with the applicable requirements concerning the form and content of accounts set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a true and fair view which is not a matter considered as part of an independent examination. I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached. Neil Wilkinson Knox Cropper LLP Chartered Accountants 153 -155 London Road Hemel Hempstead Hertfordshire HP3 9SQ Date: ............................................. Page 4 **CDLS FOUNDATION UK & IRELAND** **Statement of Financial Activities for the Year Ended 31 December 2025** |**2025**
**Unrestricted**
**fund**
Notes
**£**
**INCOME AND ENDOWMENTS FROM**
Donations and legacies
**26,551**
**Charitable activities**
Education and awareness
**978**
Other trading activities
2
**24,956**
Investment income
3
**1,144**
**Total**
**53,629**
**EXPENDITURE ON**
Raising funds
**2,585**
**Charitable activities**
4
Education and awareness
**44,554**
**Total**
**47,139**
**NET INCOME**
**6,490**
**RECONCILIATION OF FUNDS**
Total funds brought forward
**140,399**
**TOTAL FUNDS CARRIED FORWARD**
**146,889**|2024
Total
funds
£
16,758
60
31,086
1,352
49,256
8,589
37,703
46,292
2,964
137,435
140,399| |---|---| The notes form part of these financial statements Page 5 CDLS FOUNDATION UK & IRELAND Balance Sheet 31 December 2025 |2025
Unrestricted
fund
Notes
£
CURRENT ASSETS
8
sr
o
t
b
e
D
-
Cash at bank
149,187
149,187
CREDITORS
Amounts falling due within one year
9
(2,298)
9
8
8,6
4
1
S
T
E
S
S
A
T
N
E
R
R
U
C
T
E
N
9
8
8
,6
4
1
S
EI
TI
LI
B
A
I
L
T
N
E
R
R
U
C
S
S
E
L
S
T
E
S
S
A
L
A
T
O
T
9
8
8
,6
4
1
S
T
E
S
S
A
T
E
N
FUNDS
10
Unrestricted funds
146,889
9
8
8,6
4
1
S
D
N
U
F
L
A
T
O
T|2024
Total
funds
£
100
142,495
142,595
(2,196)
140,399
140,399
140,399
140,399
140,399| |---|---| The financial statements were approved by the Board of Trustees and authorised for issue on 4 May 2026 and were signed on its behalf by: D Axtell (Chairman) - Trustee Page 6 **CDLS FOUNDATION UK & IRELAND Notes to the Financial Statements for the Year Ended 31 December 2025** ## **1. ACCOUNTING POLICIES** ## **Basis of preparing the financial statements** The financial statements of the charity, which is a public benefit entity under FRS 102, have been prepared in accordance with the Charities SORP (FRS 102) 'Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019)', Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland' and the Charities Act 2011. The financial statements have been prepared under the historical cost convention. ## **Financial reporting standard 102 - reduced disclosure exemptions** The charity has taken advantage of the following disclosure exemption in preparing these financial statements, as permitted by FRS 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland': - the requirements of Section 7 Statement of Cash Flows. ## **Income** All income is recognised in the Statement of Financial Activities once the charity has entitlement to the funds, it is probable that the income will be received and the amount can be measured reliably. ## **Expenditure** Liabilities are recognised as expenditure as soon as there is a legal or constructive obligation committing the charity to that expenditure, it is probable that a transfer of economic benefits will be required in settlement and the amount of the obligation can be measured reliably. Expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all cost related to the category. Where costs cannot be directly attributed to particular headings they have been allocated to activities on a basis consistent with the use of resources. ## **Tangible fixed assets** Depreciation is provided at the following annual rates in order to write off each asset over its estimated useful life. Computer equipment - 25% on cost ## **Taxation** The charity is exempt from tax on its charitable activities. ## **Fund accounting** Unrestricted funds can be used in accordance with the charitable objectives at the discretion of the trustees. Restricted funds can only be used for particular restricted purposes within the objects of the charity. Restrictions arise when specified by the donor or when funds are raised for particular restricted purposes. ## **2. OTHER TRADING ACTIVITIES** |Fundraising events
**3.**
**INVESTMENT INCOME**
Deposit account interest|**2025**
**£**
**24,956**
**2025**
**£**
**1,144**|2024
£
31,086
2024
£
1,352| |---|---|---| Page 7 continued... **CDLS FOUNDATION UK & IRELAND** **Notes to the Financial Statements - continued for the Year Ended 31 December 2025** ## **4. CHARITABLE ACTIVITIES COSTS** |Education and awareness
**5.**
**SUPPORT COSTS**
Management
£
Education and awareness
**22,394**
**6.**
**TRUSTEES' REMUNERATION AND BENEFITS**
There were no trustees' remuneration or other benefits for the year
ended 31 December 2024.|Support
Direct
costs (see
Costs
note 5)
Totals
£
£
£
**17,375**
**27,179**
**44,554**
Governance
Finance
costs
Totals
£
£
£
**1,816**
**2,969**
**27,179**
ended 31 December 2025 nor for the year| |---|---| |**Trustees' expenses**
Trustees' expenses|**2025**
**£**
**2,376**|2024
£
1,740| |---|---|---| |**7.**
**TANGIBLE FIXED ASSETS**
**COST**
At 1 January 2025 and 31 December 2025||Computer
equipment
£
**4,500**| |**DEPRECIATION**
At 1 January 2025 and 31 December 2025||**4,500**| |**NET BOOK VALUE**
At 31 December 2025||**-**| |At 31 December 2024||-| |**8.**
**DEBTORS: AMOUNTS FALLING DUE WITHIN ONE YEAR**
Prepayments and accrued income|**2025**
**£**
**-**|2024
£
100| Page 8 continued... **CDLS FOUNDATION UK & IRELAND** **Notes to the Financial Statements - continued for the Year Ended 31 December 2025** ## **9. CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR** |Other creditors
**10.**
**MOVEMENT IN FUNDS**
At 1.1.25
£
**Unrestricted funds**
General fund
**140,399**
**TOTAL FUNDS**
**140,399**
Net movement in funds, included in the above are as follows:
Incoming
resources
£
**Unrestricted funds**
General fund
**53,629**
**TOTAL FUNDS**
**53,629**
**Comparatives for movement in funds**
At 1.1.24
£
**Unrestricted funds**
General fund
137,435
**TOTAL FUNDS**
137,435
Comparative net movement in funds, included in the above are as follows:
Incoming
resources
£
**Unrestricted funds**
General fund
49,256
**TOTAL FUNDS**
49,256|**2025**
2024
**£**
£
**2,298**
2,196
Net
movement
At
in funds
31.12.25
£
£
**6,490**
**146,889**
**6,490**
**146,889**
Resources
Movement
expended
in funds
£
£
**(47,139)**
**6,490**
**(47,139)**
**6,490**
Net
movement
At
in funds
31.12.24
£
£
2,964
140,399
2,964
140,399
Resources
Movement
expended
in funds
£
£
(46,292)
2,964
(46,292)
2,964| |---|---| Page 9 continued... **CDLS FOUNDATION UK & IRELAND Notes to the Financial Statements - continued for the Year Ended 31 December 2025** ## **10. MOVEMENT IN FUNDS - continued** A current year 12 months and prior year 12 months combined position is as follows: |**Unrestricted funds**
General fund
**TOTAL FUNDS**|At 1.1.24
£
137,435
137,435|Net
movement
in funds
£
9,454
9,454|At
31.12.25
£
146,889
146,889| |---|---|---|---| A current year 12 months and prior year 12 months combined net movement in funds, included in the above are as follows: |**Unrestricted funds**
General fund|Incoming
Resources
resources
expended
£
£
102,885
(93,431)|Movement
in funds
£
9,454| |---|---|---| |**TOTAL FUNDS**|102,885
(93,431)|9,454| ## **11. RELATED PARTY DISCLOSURES** Mr Alan Peaford is a director of Aerocomm Ltd. During the year, the charity paid £Nil (2024: £1,504) for editing and production to Aerocomm Limited. Natalie Blockley, who is the wife of Charles Blockley, was paid £16,800 (2024: £16,800) for administration services, during the year. Page 10