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2025-07-31-accounts

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:

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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Page | 5

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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

Page | 8

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