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2024-03-31-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 2023 To 31 MARCH 2024
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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 Clare Millington Chair to Jan 2024
2 Carol Field
3 Alicia Makinson Resigned 18.01.2024
4 Paul Bates
5 Amy Clarkson
6 Anna Cole Chair from Jan 2024 Voted in by all trustees
7 Geoff Kermode From 15.02.2024 Voted in by all trustees
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

March 2012

TAR

1

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.

March 2012

TAR

2

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 second year a family meetup day was held at Thomley in
Buckinghamshire in June 2023. This was a great success, with 5 families
attending, for some it was the first time they had met another person with
DDX3X.
An online sensory workshop was provided by Hanna Munro (OT) to
DDX3X families, this was really beneficial providing much needed
practical advice. Trustees agreed to fund working further with Hanna to
provide a more tailored service would 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:

March 2012

TAR

3

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 including money donated instead of Wedding presents, a donation received from LV, money donated from participating in the London Marathon and a sail across the Atlantic where DDX3X Support UK were one of the Charities that received fundraising money raised. £6k was also raised from a 3000km bike ride across New Zealand, further donations were also received into the next tax year - all of these helped to raise awareness of DDX3X. We continue to receive 2 regular monthly direct debits. Over the summer, the charity chair worked with 2 interns on several projects, one to produce new resources including a patient passport and the other a data collection project. We are now looking at producing these in a suitable format to benefit our families. The charity chair entered into the Beacon for Rare Diseases patient group pairing for the annual student voice competition. A medical student from Cambridge University interviewed Clare and 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 4[th] year we have entered the competition. The Rare resilience program run by a counsellor bringing together small charities, discussing similar concerns regarding various rare conditions, continues to be a beneficial resource for the charity. The new charity chair signed up with Rare Beacon Patient Group Mentoring Programme 2024-25 and has been matched with a mentor for a year. The programme helps patient support groups get established, build their capacity and streamline their work in order to improve patient support services, implement new projects and/or increase their involvement in research. 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. The Bingo project once again continues to reach out to DDX3X families, Bingo is a great flag bearer for DDX3X and helps towards the research. DDX3X Speech and Language Murdoch Children’s research institute (Australia) produced a report that was shared with DDX3X families.

March 2012

TAR

4

Section E Financial review

Brief statement of the charity’s policy on reserves

Because we have minimal fixed outgoings there is no reason at present that we need to have a reserve.

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 18.01.2025 18.01.2025

March 2012

TAR

5

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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 2023 31 March 2024
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 12,798 - - 12,798 5,204
Family contribution to Charity Events 36 - - 36 52
- - - - -
- - - - -
- - - - -
- - - - -
- - - - -
- - - - -
Sub total (Gross income for
- - 12,834 5,256
AR) [ 12,834 ]
A2 Asset and investment sales,
(see table).
- - - - -
- - - - -
Sub total - - - - -
Total receipts 12,834 - - 12,834 5,256
A3 Payments
Enthuse 336 - - 336 288
Zoom - - - - 144
Charity Events inc Weekend Meetups 155 - - 155 1,300
Merchandise 67 - - 67 57
Insurance - - - - 128
Other 737 - - 737 -
- - - - -
- - - - -
- - - - -
Sub total 1,294 - - 1,294 1,916
A4 Asset and investment
purchases, (see table)
- - - -
- - - -
Sub total - - - - -
Total payments 1,294 - - 1,294 1,916
Net of receipts/(payments) 11,539 - - 11,539 3,340
A5 Transfers between funds - - - - -
A6 Cash funds last year end 18,417 - - 18,417 15,077
Cash funds this year end 29,956 - - 29,956 18,417
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2023-24 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
B1 Cash funds
B2 Other monetary assets
B3 Investment assets
B4 Assets retained for the
charity’s own use
B5 Liabilities		 (agree balances with receipts and payments
account(s))
Details
Cash in Bank
Total cash funds
Details
Details
Details
Details
Signature		 Unrestricted
funds
Restricted
funds
to nearest £
to nearest £
29,956
-
-
-
-
-
29,956
-
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
18.01.2025
18.01.2025

2023-24 Form CC16a

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