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2025-03-31-accounts

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Trustees' Annual Report for the period
Period start date Period end date
Day Month Year Day Month Year
From 01 APRIL 2024 To 31 MARCH 2025
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Section A Reference and administration details

Charity name DDX3X SUPPORT UK

Other names charity is known by

Registered charity number (if any) 1187846

Charity's principal address[Biggins Lodge Farmhouse] High Biggins Carnforth Postcode LA6 2NP

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 Anna Cole Chair
2 Carol Field
3 Clare Millington
4 Paul Bates
5 Amy Clarkson
6 Geoff Kermode
7
8
9
10
11
12
13
14
15
16
17
18
19
20
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Names of the trustees for the charity, if any, (for example, any custodian trustees)

Name Dates acted if not for whole year

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Names and addresses of advisers (Optional information)

Type of adviser Name Address

Name of chief executive or names of senior staff members (Optional information)

Section B Structure, governance and management

Description of the charity’s trusts

Type of governing document Constitution (eg. trust deed, constitution)

How the charity is constituted

Trustee selection methods Appointment by existing trustees

(eg. appointed by, elected by)

Additional governance issues (Optional information)

You may choose to include additional information, where relevant, about:

Section C Objectives and activities

Summary of the objects of the charity set out in its governing document

  1. To advance the education of the general public and medical profession in all areas relating to the conditions caused by mutations of the DDX3X gene.

  2. The relief of sickness and preservation and protection of good health by sharing information on the DDX3X condition.

  3. To promote and protect the physical and good mental health of sufferers of DDX3X in the UK, their families and carers through the provision of opportunities to meet together for mutual support.

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Summary of the main
activities undertaken for the
public benefit in relation to
these objects (include within
this section the statutory
declaration that trustees have
had regard to the guidance
issued by the Charity
Commission on public
benefit)		 The Charity has a website that provides a valuable source of information
for DDX3X Syndrome benefitting those affected or concerned by the
condition. The website has a donate button for visitors / families to
donate towards the Charity.
We have a Facebook Group providing information for the general public,
we also have a closed Facebook group to provide support to members.
Promotes the charity and raises awareness through media, organised
events and networking.
Registered with HMRC to claim gift aid tax back on donations using
charities online. We are registered with Enthuse and they manage our
donations and claim gift aid back on the charities behalf.
Newsletters continue to be published on an annual and ad-hoc basis
these are available for families to access a copy on our Facebook page.
For the third year a family meetup day was held at Thomley in
Buckinghamshire in May 2024. This was a great success, with 9 families
attending, for some it was the first time they had met another person with
DDX3X.
Hanna Munro (OT) continues to work with DDX3X families. 2 OT
students spoke with DDX3X families, working towards providing a more
tailored service to help enhance lives for DDX3X families. This work
continues.
All activities have been undertaken with due regard to the guidance
issued to trustees by the Charity Commission on public benefit.

Additional details of objectives and activities (Optional information)

You may choose to include further statements, where relevant, about:

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Section D Achievements and performance

Summary of the main The charity is registered with HMRC and gift aid is claimed back by achievements of the charity Enthuse on the charities behalf. during the year Contact from families identified as having a diagnosis to join our closed Facebook group does continue, although this seems to have slowed down this year. Diagnoses in Ireland, Scotland and Wales still remain low. Fundraising events were held by the DDX3X community highlights included a charity run which raised over £1k, Anna Cole (our Chair of Trustees) completed the Swim 22 Challenge and raised £1300, plus £500 from her employer LV. In April 2024 an additional £6000 donation was received for the 3000km Bike Ride across New Zealand carried out in Jan 2024. £5591 donation was received in Jan 2025, for a Sail Across the Atlantic. £511 in donations were also received from Much Loved. We continue to receive 2 regular monthly direct debits. Our families have started to sign up with Easyfundraising and we received our first donation in Feb of £31.19 Once again we entered into the Beacon for Rare Diseases patient group pairing for the annual student voice competition. A medical student from Oxford University interviewed 2 of our trustees/DDX3X parents (Anna and Clare), the essay they wrote about DDX3X was entered into the competition. Even though the student did not win a prize this is once again an opportunity to raise awareness of DDX3X and is the 5[th] year we have entered the competition. The Charity Chair continues working with the Rare Beacon Patient Group Mentoring Programme 2024-25. This 12-month programme incorporates (1) Mentor ‘Empowerment Training’ (Mental Health & Resilience, Project Management, Strategy), (2) Mentor Pairing with 4 goals to support the patient support group, (3) In-Person & Virtual Events & Networking, (4) Access to a Resource Hub. Trustees have continued to research and reached out to other rare chromosome groups with similar conditions to gain knowledge on support they offer to members and specialist clinics they hold. CamRARE have produced a ‘this is me passport’, it is branded to each charity, so the DDX3X Support UK logo would be on the passport. The link was posted to our families so they could download and print this off at home. This important information about your child can then be passed on to medical and care staff. Rarefest, which took place in October had on display a set of tapestries with a representation of the DDX3X Gene, designed by Lizzie Radford. This once again helped raise awareness of DDX3X. Trustees held a strategy day in January to plan for the year ahead and look at how to grow the charity.

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Section D Achievements and performance

To mark Rare Disease Day in February 2025, Genetic Alliance asked for families to write a story, poem, artwork that bring to life the experiences of individuals within the genetic, rare and undiagnosed communities. Two pieces from DDX3X families were included in the ‘More than you can imagine’ anthology, which was then displayed in the English, Welsh and Scottish parliaments.

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Section E Financial review

Because we have minimal fixed outgoings there is no reason at present Brief statement of the that we need to have a reserve. charity’s policy on reserves

Details of any funds materially in deficit

N/A

Further financial review details (Optional information)

You may choose to include additional information, where relevant about:

Section F Other optional information

Section G Declaration

The trustees declare that they have approved the trustees’ report above.

Signed on behalf of the charity’s trustees

Signature(s)

Full name(s)[Anna Cole ] Carol Field Position (eg Secretary, Chair, Chair Treasurer etc) Date 03.07.2025 03.07.2025

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Charity Name No (if any)
DDX3X SUPPORT UK 1187846
Receipts and payments accounts CC16a
For the period Period end date
To
from 01 April 2024 31 March 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 16,137 - - 16,137 12,798
Family contribution to Charity Events - - - 36
- - - - -
- - - - -
- - - - -
- - - - -
- - - - -
- - - - -
Sub total (Gross income for
- - 16,137 12,834
AR) [ 16,137 ]
A2 Asset and investment sales,
(see table).
- - - - -
- - - - -
Sub total - - - - -
Total receipts 16,137 - - 16,137 12,834
A3 Payments
Enthuse 384 - - 384 336
Zoom 96 - - 96 -
Charity Events inc Weekend Meetups 192 - - 192 155
Merchandise 437 - - 437 67
Insurance 96 - - 96 -
Other 159 - - 159 737
- - - - -
- - - - -
- - - - -
Sub total 1,364 - - 1,364 1,295
A4 Asset and investment
purchases, (see table)
- - - -
- - - -
Sub total - - - - -
Total payments 1,364 - - 1,364 1,295
Net of receipts/(payments) 14,773 - - 14,773 11,539
A5 Transfers between funds - - - - -
A6 Cash funds last year end 29,956 - - 29,956 18,417
Cash funds this year end 44,729 - - 44,729 29,956
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2024-25 Form CC16a

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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
B4 Assets retained for the
charity’s own use
B3 Investment assets
B2 Other monetary assets
B1 Cash funds		 Signature
Details
Details
Details
Details
Cash in Bank
Total cash funds
(agree balances with receipts and payments
account(s))
Details		 Unrestricted
funds
Restricted
funds
to nearest £
to nearest £
44,729
-
-
-
-
-
44,729
-
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)
-
-
-
-
-
Print Name
Carol Field
Anna Cole		 Endowment
funds
to nearest £
-
-
-
-
OK
Endowment
funds
to nearest £
-
-
-
-
-
-
Current value
(optional)
-
-
-
-
-
Current value
(optional)
-
-
-
-
-
-
When due
(optional)
Date of
approval
03.07.2025
03.07.2025

2024-25 Form CC16a

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