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 v￿S 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
rese￿eS 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 d￿urnent. 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