ACCOUNTS AND ANNUAL REPORT YEAR ENDED 31 JULY 2025
CONTENTS
PAGE
1. Receipts and Payments account
2. Statement of Assets and Liabilities
3. Independent Examiners Report
5. Trustees’ Annual Report
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Charity Name No (if any)
CDG UK 1191342
Receipts and payments accounts CC16a
For the period Period start date Period end date
To
from 01/08/2024 31/07/2025
Section A Receipts and payments
Unrestricted Restricted Endowment
Total funds Last year
funds funds funds
to the nearest £ to the nearest £ to the nearest £ to the nearest £ to the nearest £
A1 Receipts
Donations 29,897 - - 29,897 109,312
Event income - - - - 440
Merchandise sales 253 - - 253 -
- - - - -
- - - - -
- - - - -
- - - - -
- - - - -
Sub total (Gross income for
AR) [ 30,150 ] - - 30,150 109,752
A2 Asset and investment sales,
(see table).
- - - - -
- - - - -
Sub total - - - - -
Total receipts 30,150 - - 30,150 109,752
A3 Payments
Event expenses 5,236 - - 5,236 4,553
Merchandise 3,840 - - 3,840 2,048
Office costs 1,332 - - 1,332 697
Insurances 141 - - 141 136
Advertising 432 - - 432 472
Subscriptions 191 - - 191 175
Donations 41,059 - - 41,059 4,215
Bank charges 78 - - 78 61
Professional & consultancy fees 7,485 - - 7,485 2,165
Sub total [ 59,794 ] - - 59,794 14,522
A4 Asset and investment
purchases, (see table)
- - - - -
- - - - -
Sub total [ - ] - - - -
Total payments 59,794 - - 59,794 14,522
Net of receipts/(payments) - 29,644 - - - 29,644 95,230
A5 Transfers between funds - - - - -
A6 Cash funds last year end 126,341 - - 126,341 31,111
Cash funds this year end 96,697 - - 96,697 126,341
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PAGE 1
CCXX R1 accounts (SS)
29/09/2025
1
Section B Statement of assets and liabilities at the end of the period
| Categories Signed by one or two trustees on behalf of all the trustees B5 Liabilities B3 Investment assets B2 Other monetary assets B4 Assets retained for the charity’s own use B1 Cash funds |
Details Details Total cash funds (agree balances with receipts and payments account(s)) Cash at bank & in hand Stocks Details Details Professional fees Details Signature |
Unrestricted funds Restricted funds to nearest £ to nearest £ 96,247 - 450 - - 96,697 - OK OK Unrestricted funds Restricted funds to nearest £ to nearest £ - - - - - - - - - - - Fund to which asset belongs Cost (optional) - - - - - Fund to which asset belongs Cost (optional) - - - - - - - - - Fund to which liability relates Amount due (optional) Unrestricted 500 - - - - Print Name Julia Louise Boonnak |
Endowment funds to nearest £ - - - |
|---|---|---|---|
| - | |||
| OK | |||
| Endowment funds to nearest £ - - - - - - Current value (optional) - - - - - Current value (optional) - - - - - - - - - When due (optional) Date of approval 29/09/2025 |
Signed by one or two trustees on behalf of all the trustees
PAGE 2
CCXX R2 accounts (SS)
29/09/2025
2
Independent examiner's report on the accounts
Section A Independent Examiner’s Report
| Report to the trustees/ members of On accounts for the year ended Set out on pages |
Charity Name CDG UK |
|---|---|
| 31 July 2025 Charity no (if any) 1191342 |
|
| 3 & 4 |
I report to the trustees on my examination of the accounts of the above charity (“the Trust”) for the year ended 31 / 07 / 2025 .
Responsibilities and As the charity trustees of the Trust, you are responsible for the preparation basis of report of the accounts in accordance with the requirements of the Charities Act 2011 (“the Act”).
I report in respect of my examination of the Trust’s accounts carried out under section 145 of the 2011 Act and in carrying out my examination, I have followed the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act.
Independent examiner's statement
I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination which gives me cause to believe that in, any material respect:
-
accounting records were not kept in accordance with section 130 of the Act or
-
the accounts do not accord with the accounting records
I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in order to enable a proper understanding of the accounts to be reached.
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Date: 29/09/2025
Signed:
Name: Alexander Reginald Buckley
Relevant professional BSc.(Hons), MAAT
qualification(s) or body
(if any):
Address: Meadow Lodge, Meadow Road
Bromsgrove, Worcestershire
B61 0JL
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PAGE 3
Section B Disclosure
Only complete if the examiner needs to highlight matters of concern (see CC32, Independent examination of charity accounts: directions and guidance for examiners).
Give here brief details of any items that the examiner wishes to disclose .
PAGE 4
Trustees’ Annual Report for the period
From 01/08/2024 To 31/07/2025
Charity name: CDG UK
Charity registration number: 1191342
Objectives and Activities
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SORP reference
Summary of the purposes of Para 1.17 To preserve and protect good health for the
the charity as set out in its public benefit by supporting those affected
governing document by Congenital Disorders of Glycosylation
and funding research into Congenital
Disorders of Glycosylation and
disseminating all useful results into the
public domain.
Summary of the main Para 1.17 and We supported families by keeping them
1.19
activities in relation to those updated with the latest information about
purposes for the public CDG via our website, our newsletters and
benefit, in particular, the our in person ‘Meet the CDG Experts Event’
activities, projects or services in Bromsgrove, which was attended by 20
identified in the accounts. families, Great Ormond Street, Glycomine
Inc., The University of Oxford, Mayo Clinic,
and Chadsgrove School. We sent out our
information packs for newly diagnosed
families. We awarded two rounds of small
grants of £200 to CDG families in the UK.
We supported research into CDG by
continuing to encourage families to join us
and sign up to our database patients. We
accepted grant applications from
researchers and heard presentations from
scientists.
Statement confirming Para 1.18 Trustees have received the guidance.
whether the trustees have
had regard to the guidance
issued by the Charity
Commission on public
benefit
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Additional information (optional)
You may choose to include further statements where relevant about:
SORP reference
Small family grants of £200 made to families
Para 1.38 in the UK. Families can apply once a year.
Policy on grant making Families must prove UK address, sign up to
CDG UK’s register, and show a formal letter
of diagnosis of CDG.
Researchers studying CDGs can apply for
small research grants. They must fill in an
application form and present to the trustees
and advisory board. Where there is a conflict
of interest, an alternative advisory source is
used.
NA
Para 1.38
Policy on social investment
including program related
investment
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| SORP reference | ||
|---|---|---|
| Policy on grant making | Para 1.38 | Small family grants of £200 made to families in the UK. Families can apply once a year. Families must prove UK address, sign up to CDG UK’s register, and show a formal letter of diagnosis of CDG. Researchers studying CDGs can apply for small research grants. They must fill in an application form and present to the trustees and advisory board. Where there is a conflict of interest, an alternative advisory source is used. |
| Policy on social investment including program related investment |
Para 1.38 | NA |
| Contribution made by volunteers |
Para 1.38 | Members of our trustee board and medical advisory board attended meetings and gave advice, guidance, and challenge. |
| Other | None |
Achievements and Performance
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SORP reference
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| Achievements and Performance | Achievements and Performance | 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 | 3 newsletters distributed to families and professionals updating families on latest developments in the world of CDG. ‘Meet the CDG Experts’ event in Bromsgrove with 20 families. Celebrated CDG Awareness day and Rare Disease Day with families around the UK on social media. Website and other social media platforms kept updated with latest information. Continued to update the CDG database of UK patients and encouraged our families to sign up. Continued to send CDG information packs for new families diagnosed with CDG. We met Glycomine, a US based drug |
| Page |
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development company once a
month, to hear about their research
and encourage interested parents to
ask questions and find out more
about the upcoming clinical trials in
the UK.
We awarded several grants of £200
for CDG families in the UK.
We began a research grant awards
scheme, and have started to receive
applications from researchers in
CDG.
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Additional information (optional)
You may choose to include further statements where relevant about:
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Achievements against Para 1.41
objectives set
Performance of fundraising
activities against objectives Para 1.41
set
Investment performance Para 1.41
against objectives
Other
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Financial Review
| Financial Review | ||
|---|---|---|
| Review of the charity’s financial position at the end of the period |
Para 1.21 | In the previous financial year, the charity received a generous donation from Goldman Sachs. During the current year, a significant grant was awarded to the University of Utah, utilising a portion of these funds and resulting in a planned deficit for the year. |
| Statement explaining the policy for holding reserves stating why they are held |
Para 1.22 | Reserves are held for future projects such as grants for families, research and family events. |
| Amount of reservesheld | Para 1.22 | £96,697 |
| 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 | N/A |
| 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 |
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Structure, Governance and Management
| Description of charity’s trusts: |
||
|---|---|---|
| Type of governing document (trust deed, royal charter) |
Para 1.25 | Constitution |
| How is the charity constituted? (e.g unincorporated association, CIO) |
Para 1.25 | CIO foundation |
| 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 | Every trustee appointed by a resolution passed at a properly convened meeting for the charity trustees. In selection, the charity has regard to the skills, knowledge and experience needed for the effective administration of the CIO. |
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Additional information (optional)
You may choose to include further statements where relevant about:
Policies and procedures
adopted for the induction and Para 1.51
training of trustees
The charity’s organisational
structure and any wider Para 1.51
network with which the
charity works
Relationship with any related Para 1.51
parties
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| Additional information (optional) You may choose to include further statements where relevant about: |
Additional information (optional) You may choose to include further statements where relevant about: |
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
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Charity name CDG UK
Other name the charity uses
Registered charity number 1191342
Charity’s principal address Meadow Lodge
Catshill
Bromsgrove
Worcestershire
B61 0JL
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Names of the charity trustees who manage the charity
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Dates acted if not for whole Name of person (or body) entitled
Trustee name Office (if any)
year to appoint trustee (if any)
1 Julia Boonnak Chair
2 Will Boonnak Treasurer
3 David Elvy Secretary
4 Nicole Rourke
5 Manuzah Tabassum
6 Steve McCann
7 Mel Dixon
8 Elle Daniel
9
10
11
12
13
14
15
16
17
18
19
20
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– Corporate trustees names of the directors at the date the report was approved
Director name
Name of trustees holding title to property belonging to the charity
Trustee name Dates acted if not for whole year
Page | 10
| Funds held as custodian trustees on behalf of others | Funds held as custodian trustees on behalf of others |
|---|---|
| Description of the assets held in this capacity |
NA |
| Name and objects of the charity on whose behalf the assets are held and how this falls within the custodian charity’s objects |
NA |
| Details of arrangements for safe custody and segregation of such assets from the charity’s own assets |
NA |
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
Page | 11
Declarations
The trustees declare that they have approved the trustees’ report above.
Signed on behalf of the charity’s trustees
Date 29/09/2025
Page | 12