2022-03-31-accounts - Ddx3x Support UK

This text was generated using OCR and may contain errors. Check the original PDF to see the document submitted to the regulator.

Trustees' Annual Report for the period Period start date Period end date Day Month Year Day Month Year From 01 APRIL 2021 To 31 MARCH 2022

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
2 Carol Field
3 Alicia Makinson
4 Paul Bates
5 Amy Clarkson
6
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

March 2012

TAR

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 Charitable Incorporated Organisation (eg. trust, association, company)

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:

policies and procedures adopted for the induction and training of trustees;
the charity’s organisational structure and any wider network with which the charity works;
relationship with any related parties;
trustees’ consideration of major risks and the system and procedures to manage them.

Section C Objectives and activities

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.
Summary of the objects of the 2. The relief of sickness and preservation and protection of good
charity set out in its health by sharing information on the DDX3X condition.
governing document
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

The Charity has a website that provides a valuable source of information for DDX3X Syndrome benefitting those affected or concerned by the condition.

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. Summary of the main Registered with HMRC to claim gift aid tax back on donations using activities undertaken for the charities online. public benefit in relation to these objects (include within We are registered with Enthuse and they manage our donations and this section the statutory claim gift aid back on the charities behalf declaration that trustees have had regard to the guidance A family weekend meetup at Bendrigg was organised for older DDX3X issued by the Charity diagnoses. Commission on public benefit) All activities have been undertaken with due regard to the guidance

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:

policy on grantmaking;
policy programme related investment;
contribution made by volunteers.

March 2012

TAR

Section D Achievements and performance

The charity was registered with HMRC to be able to claim back gift aid. Summary of the main achievements of the charity The charity was registered with SmileAmazon and easyfundraising, to during the year help with raising funds when making a purchase with no cost to the buyer. Contact from families diagnosed continues to grow and we now have 190 supporter and we have 86 families identified as having a diagnosis of DDX3X Syndrome - that have joined our facebook group We had a May Fundraising event where Fundraising events were held by the DDX3X community – Clare’s held a plant fundraising event, Carol held a cake bake at work and Amber had a birthday fundraiser – all of these helped to raise awareness of DDX3X. In May we received our first regular monthly donation by direct debit followed in June by our second regular monthly donation. Foot against the Floor a book of poems and short stories about living with complex needs was published by the Clare and her husband Gary and all proceeds went to the charity. A royal ascot ladies day charity lunch was held on 17[th] June at Luciano’s in Bolton with DDX3X being one of the charities being supported - £1400 was donated to the charity. The charity chair attended Concord co-ordinated care for rare conditions webinar. The charity chair joined the DDX3X day of learning run by the ICAHN school of medicine in New York. Part of the 3 hour presentation was a study of mice that showed when given the DDX3X gene they did have a normal life expectancy. The chair entered into the Beacon for Rare Diseases patient group pairing for the annual student voice competition. A medical student from the university of Buckingham 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 an opportunity to raise awareness of DDX3X. Paul Bates trustee completed Clinical guidelines – a list of different conditions associated with DDX3X. 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.

March 2012

TAR

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:

the charity’s principal sources of funds (including any fundraising);
how expenditure has supported the key objectives of the charity;
investment policy and objectives including any ethical investment policy adopted.

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

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Signature(s)
Full name(s) [Clare Millington ] Carol Field
Position (eg Secretary, Chair, Chair Treasurer
etc)
Date
17.12.2022 17.12.2022
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March 2012

TAR

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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 2021 31 March 2022
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 5,875 - - 5,875 4,566
Family contribution to Charity Events 870 - - 870 -
- - - - -
- - - - -
- - - - -
- - - - -
- - - - -
- - - - -
Sub total (Gross income for
AR) [ 6,745 ] - - 6,745 4,566
A2 Asset and investment sales,
(see table).
- - - - -
- - - - -
Sub total - - - - -
Total receipts 6,745 - - 6,745 4,566
A3 Payments
Enthuse 312 - - 312 168
Zoom 144 - - 144 115
Charity Events inc Weekend Meetups 2,294 - - 2,294 -
- - - - -
- - - - -
- - - - -
- - - - -
- - - - -
- - - - -
Sub total [ 2,749 ] - - 2,749 283
A4 Asset and investment
purchases, (see table)
- - - -
- - - -
Sub total [ - ] - - - -
Total payments 2,749 - - 2,749 283
Net of receipts/(payments) 3,996 - - 3,996 4,283
A5 Transfers between funds - - - - -
A6 Cash funds last year end 11,081 - - 11,081 6,798
Cash funds this year end 15,077 - - 15,077 11,081
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CCXX R1 accounts (SS)

12/01/2023

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 £ 15,077 - - - - - 15,077 - 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 Clare Millington	Endowment funds to nearest £ - - -
			-
			OK
			Endowment funds to nearest £ - - - - - - Current value (optional) - - - - - Current value (optional) - - - - - - - - - When due (optional) Date of approval 17.12.2022 17.12.2022

CCXX R2 accounts (SS)

12/01/2023