REGISTERED CHARITY NUMBER: 1054033 Report of the Trustees and Unaudited Financial Statements for the Year Ended 31 December 2023 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 2023 Page Report of the Trustees Independent Examinerfs Report Statement of Financial Activities Balance Shèet Notes to the Financial Statements 8 to 11
CDLS FOUNDATION UK & IRELAND Report of the Trustees for the Year Ended 31 December 2023 The trustees present their report with the financial statements of the ¢hanly for the year ended 31 December 2023. 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) {effeclive 1 January 2019). OBJECTIVES AND ACTIVITIES Objectives and aims Its Mission".-"The CdLS Foundation UK & Ireland is a familysupport 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 fLJture." 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 trealments 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 activitiesfalls 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 awaieness 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 Ihe Charity Comm ission'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 2023 ACHIEVEMENT AND PERFORMANCE This report is intended to give an overview of our activities during 2023 and an insight into the work of the Trustees.. We managed to continue holding two in-person conferences throughout the year. The main problem was finding hotel venues whose prices had not been raised beyond affordability. The Spring conference was planned to be in Scolland. All of the major cities: which had to be preferred locations due to population densities and accessibility. only had very expensive conference hotels to offer. To save money, we look a decision to break with the preferred weekend fomat for the Spring event. and use a Universityfacilityto host the conference day. For the Autumn. we did manage to find a location that was more within our budget. We aimed to have locations and dates planned a year in advance. but the long term rotation plan to cover all regions as frequently as possible was rationalised inlo counting Southeast and Southwest as one. We could still announce the next event at each conferences. We continued the same formal for conference keynote speakers with longer sessions for each speaker and fewer speakers. Less content over the day but Q8A sessions at the end of each address were longer and more interactive as an open fowm wth a moderator prompting questions and comments. Workshops in the afternoon were continued. as they offer more hands-on practical help and advice. The first family weekend was held at the University of Strathclyde. Technology and Innovations Centre in Glasgow, April 2023. Despite the perceived demand for an event in Scotland. this was not very well attended but there were enough families present to make it thoroughly worlhwhile_ We did see some families who hadn't attended for a very long time as well as some new ones. The AGM was conducted before the lunchbreak_ The downside of this venue was that we didn't have a dedicated space we could use for an evening social event. Budget holels were sourced close to the confeience venue and some families stayed at the same hotel as the trustees, so some social engagement was possible. Our second conference, held in October 2023, was at the Holiday Inn, Eastleigh near Southampton. This was very convenient location for getting lo. A well attended weekend once again. with some new families. As well as the keynote talks around the core subjects. V piesented an Anxiety workshop with strategies on how to minimise the impacl of this. We also introduced a new member of the SCAT, physiotherapist Johann Delport. Evening entertainment was also very well attended. The World Federation of CdLS Support Groups was back on track with World Conferences after the postponement of the 2021 event to 2022. It did mean: however. that the event had to be held very late in the year so as to be at least 12 months after the previous one. In attendance were profes510nals and volunteerlleaders from the USA, Brazil, UK, Gemany. Netherlands. Denmark, Poland, France, Colombia, Australia and many homegrown experts from the hosts. Spain. Families were mostly from Spain and Latin America with a few from France. No UK families were in attendance. Part of the reason for a lack of attendees from the rest of Europe was the timing. The evenl was held in school tem time for most of us, although there was a late decision to off iciallydesignate the conference as a medical event and thus justify taking kids out of school. This came too late for people to alter plans. The UK was represented by Chair David Axtell and Medical Director Dr Peler Gillett. There was a variety of topics on the first conference day but the second day was all very detailed genetics. We did see talks by some experts who we hadn't seen at conferences before. The conference days were preceded by the usual f ull day meetings of the Scientific Advisory Council (SAC} and the Federation Council, the latter chaired by the UK & Ireland Foundation as well as for a combined session. The SAC discussed how the updates of the International Consensus Slatement on Diagnosis and Management of CdLS were progressing. A change in Presidency of the SAC was planned with Dr Feliciano Ramos intending to handover to Dr Paul Mulder from the Nelherlands_ The Federation Council meeting took many initiatives forward from previous meelings, together with a planned overhaul of the CdLS World website. The Executive Committee elections confirmed the continuation of the UK & Ireland as ChairlPresident, with Vice President - Nelherlands, Treasurer Australia, Hon Sec. Netherlands, Future Conference Host - Australia. New Member Liaison - Israel. Page 2
CDLS FOUNDATION UK & IRELAND Report of the Trustees for the Year Ended 31 December 2023 At the AGM in Glasgow, the Trustees Report as 11 as the accounts for 2022 were presented, voted upon and accepted. Trustee Charles Blockley was re-elected David Axtell was re-elecled a5 Chair, Charles Blockley re-elected as Vice Chair, Bjorn Harris re£leeted as Treasurer. Ginny Penney as Hon. Secielary. In setting a draft annual budget, the Trustees agreed a figure of £58,000 for 2023 as the amount needed to meet the Foundation objectives for the year. This is lo cover paid staff, office space, conference costs, website hosting, magazine print and distribution. Irustees, expenses and other administralion costs. We have also allowed for payment towards the research projecl of a new PhD student. Bethany Jones. who is researching conneclions between autism and anxiety in CdLS. Conference costs would show a big increase with another World conferen expenses added. It was also expected that the magazine would have an additional edition in 2023. To add to our fundraising strategy. we renewed our Run for Charity subscription. Other initiatives were discussed, such as sponsorship of activity rooms at conferences_ Fundraising received a big bDQSt with 2 large legacy donations, where the Foundation vS named as a beneficiary in 2 people's wills. This was much needed income with 4 and 5 figure sums bequeathed to us. We were Close to breakeven point. bul with the research funding being slightly overbudget. we made a loss of £1,200 on the year. Beth Jones, PhD research project continued and the fruils of that research got closer for the benefit of our families. We were pleased to welcome a new member of Ihe SCAT. As mentioned, we welcomed Johann Delport at our Autumn conference. Johann is an orthopaedic physiotherapist who works with children with varying disabilities. International CdLS Awareness Day 2023 was successful. The reach across our social media platfotms was prelty broad. with a lol of engagement from our audien. 11 was also good focu5 for fundraising 11 was also time lo look at prornotional tools such as merchandise branded for CdLS. Some new ideas were discussed and will be developed for our events. We received a donation of Fidget Toys to include in branded Goodie Bags. Report compiled by Chaimian David Axtell FINANCIAL REVIEW Financial position Total income for the year was £61,959 12022: £51.7351 of which donations amounted to £43,434 (2022.. 22,572) and fundraising events £16,282 {2022. 27,560). Total expenditure for the year was £63,874 12022. £54,234} of which £61,513 {2022'. £50.365) related to charitable activities. This gave rise to net expenditure of £1,915 12022.. net expenditure £2,499) for the year. The reserves at the end of the year amounted to £137.43512022.' £139,350). Investment policy and objectives The charity's investment is low risk and is held on a high interest account viith Scottish Widows Bank. Reserves policy In the first instance The Foundation's aim is lo hold two yearfs operating budget in reserve. Ideally It will grow reseeS in order to hold sufficient capital to generate funds to cover the annual operating costs. STRUCTURE, GOVERNANCE AND MANAGEMENT Governing document The charity is controlled by its governing durnent. a deed ol trust and constitutes an unincorporated charily. REFERENCE AND ADMINISTRATIVE DETAILS Registered Charity number 1054033 Page 3
CDLS FOUNDATION UK & IRELAND Report of the Trustees for the Year Ended 31 December 2023 Principal address PO Box 8368 Ripley Derbyshire DE5 4DA Trustees D Axtell (Chairman) Mrs C Mccarney (Trustee) Ms F Kett (Trusteel R Saunders (Trustee) Mrs S Peaford Smith (Trustee) Mrs G Penney {Hon. Secretary) C Blockley (Vice Chariman) J Young (Truslee) B Harris (Trustee) Ms K Boland (Trustee) 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 29 June 2024 and signed on its behalf by.. D Axtell {Chairmanl - Trustee Page 4
Independent Examinerfs 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 Irustees on my examination of the accounts of CdLS Foundation UK & Ireland (the Trust) for the year ended 31 December 2023. 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 (Ihe Act.). I feport 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)Ib) of the Act. Independent examiner's statement I have completed my examination_ I confirm that no material matters have come to my attention in conneclion with the examination giving me cause to believe that in any material respect.. accounting records were not kept in respect of the Trust as required by Section 130 of the Acl- or the accounts do not accord with those records.. or 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 otherthan any requirement that the accounts give a true and fair viewwhich is not a matter considered as part of an independent examination. I have no concerns and have come across no other matters in connection wth the examination lo 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 29 June 2024 Page 5
CDLS FOUNDATION UK & IRELAND Statement of Financial Activities for the Year Ended 31 December 2023 2023 Unrestricted fund 2022 Total funds Notes INCOME AND ENDOWMENTS FROM Donations and legacies 43.434 22,572 Charitable activities Education and awareness 1.330 1,465 Other trading activities Investment income 16,282 913 27,560 138 Total 61,959 51,735 EXPENDITURE ON Raising funds 2,361 3,869 Charitable activities Education and awareness 61,513 50.365 Total 63,874 54,234 NET INCOMEI(EXPENDITURE) {1,915) {2,499) RECONCILIATION OF FUNDS Total funds brought forward 139.350 141,849 TOTAL FUNDS CARRIED FORWARD 137.435 139,350 The notes fomi part of these financial statements Page 6
CDLS FOUNDATION UK & IRELAND Balance Sheet 31 December 2023 2023 Unrestricted fund 2022 Total funds Notes CURRENT ASSETS Cash at bank 144,651 141,342 CREDITORS Amounts falling due within one year 17,216) (1,992} NET CURRENT ASSETS 137.435 139,350 TOTAL ASSETS LESS CURRENT LIABILITIES 137,435 139,350 NET ASSETS 137,435 139,350 FUNDS Unrestricted funds 137,435 139,350 TOTAL FUNDS 137,435 139.350 The financial statements were approved by the Board of Trustees and authonsed for issue on 29 June 2024 and were signed on its behalf by-. D Axtell (Chairmanl- Trustee The notes form part of these financial statements Page 7
CDLS FOUNDATION UK & IRELAND Notes to the Financial Statements for the Year Ended 31 December 2023 ACCOUNTING POLICIES Basis of preparing the financial statements The financial slatements of the charity, which is a public benefit entity under FRS 102, have been prepared in accordance with the Charities SORP {FRS 102) 'Accounling 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 IFRS 102) (effective 1 January 2019}', Financi21 Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland. and the CharitiesAct 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 followng 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 Activitiesonce the charity has entitlement to the funds. it is probable that the income wbll 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 lo the category. Where costs cannot be directly attributed to particular headings they have been allocated to activilies on a basis consistent with Ihe 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 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 charily. Restrictions arise when specified by the donor or when funds are raised for particular restricted purposes. Page 8 continued...
CDLS FOUNDATION UK & IRELAND Notes to the Financial Slatements - continued for the Year Ended 31 December 2023 OTHER TRADING ACTIVITIES 2023 2022 Fundraising events 16,282 27,560 INVESTMENT INCOME 2023 2022 Deposit account interest 913 138 CHARITABLE ACTIVITIES COSTS Support costs (see note 51 Direct Costs Totals Education and awareness 33,267 28.246 61,513 SUPPORT COSTS Governance costs Management Finance Totals Education and awareness 23.044 3.102 2,100 28,246 TRUSTEES, REMUNERATION AND BENEFITS There were no trustees, remuneration or other benefrts for the year ended 31 December 2023 nor for the year ended 31 December 2022. Trustees. expenses 2023 2022 Trustees. expenses 2.696 1,287 TANGIBLE FIXED ASSETS Computer equipment COST At 1 January 2023 and 31 December 2023 4.500 DEPRECIATION At 1 January 2023 and 31 December 2023 4.500 NET BOOK VALUE At 31 December 2023 At 31 December 2022 Page 9 Continued...
CDLS FOUNDATION UK & IRELAND Notes to the Financial Statements - continued for the Year Ended 31 December 2023 CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR 2023 2022 Trade creditors other creditors 5,116 2,100 1,992 7,216 1,992 MOVEMENT IN FUNDS Net movement in funds At 31.12.23 At 1.1.23 Unrestricted funds General fund 139,350 {1,915) 137,435 TOTAL FUNDS 139,350 11,915) 137,435 Net movement in funds. included in the above are as follows" Incoming resources Resources expended Movement in funds Unrestricted funds General fund 61,959 163,874) 11,915) TOTAL FUNDS 61,959 {63.874) 11.915) Comparatives for movement in funds Net movement in funds At 31.12.22 At 1.1.22 Unrestricted funds General fund 141.849 (2,499) 139,350 TOTAL FUNDS 141.849 12,499} 139,350 Page 10 continued...
CDLS FOUNDATION UK & IRELAND Notes to the Financial Statements - continued for the Year Ended 31 December 2023 MOVEMENT IN FUNDS - continued Comparative net movement in funds, included in the above are as follows: Incoming resources Resources expended Movement in funds Unrestricted funds General fund 51.735 {54,234) 12,499) TOTAL FUNDS 51.735 {54,234) (2.499) A current year 12 months and prior year 12 months combined position is as follows.. Net movement in funds Al 31.12.23 At 1.1.22 Unrestricted funds General fund 141.849 (4.414} 137,435 TOTAL FUNDS 141.849 (4,414> 137.435 A current year 12 months and prior year 12 months combined net movemenl in funds. included in the above are as follows". Incoming resources Resources expended Movement in funds Unrestricted funds General fund 113.694 {118,1081 {4,414} TOTAL FUNDS 113.694 {118.108} (4,414) 10. RELATED PARTY DISCLOSURES Mr Alan Peaford is a director of Aerocomm Ltd. During the year. the charity paid £3,148 {2022.' £3,173) for editing and production to Aerocomm Limited. Natalie Blockley. who Is the wife of Charles Blockley. was paid £16.800 (2022.. £15,800) for administration services, during the year. Page11