2023-03-31-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 start date			Period end date	Period end date
	Day	Month	Year		Day	Month	Year
From	01	APRIL	2022	To	31	MARCH	2023

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

Trustee name	Office (if any)	Dates acted if not for whole year	Name of person (or body) entitled to appoint trustee (ifany)
Clare Millington	Chair
Carol Field
Alicia Makinson
Paul Bates
AmyClarkson
Anna Cole		From 09.12.2022	Voted in byall trustees

Names of the trustees for the charity, if any, (for example, any custodian trustees) Name Dates acted if not for whole year

TAR

March 2012

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

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

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

TAR

March 2012

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 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)

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.

Our first newsletter was published available for families to access a copy on our facebook page.

A family meetup day was held at Thomley in Buckinghamshire in July 2022. This was a great success and 9 families attended, for many it was the first time they had met another person with DDX3X.

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.

TAR

March 2012

Section D Achievements and performance

Summary of the main achievements of the charity during the year

The charity is registered with HMRC and gift aid is claimed back by Enthuse on the charities behalf. The charity is registered with SmileAmazon and continued to receive donations with SmileAmazon up until the 20 February 2023 when the scheme sadly ended. A donate button was added to our website https://ddx3xsupport.co.uk Contact from families identified as having a diagnosis to join our closed facebook group continues to grow steadily, the first diagnoses in Wales joined the group, whilst diagnosis from Scotland and Ireland are low. Fundraising events were held by the DDX3X community including a 3 legged walk, a 5k walk and a half marathon - all of these helped to raise awareness of DDX3X. We continue to receive 2 regular monthly direct debits. £1800 was received from the DDX3X Foundation this subsidised DDX3X Support UK meetups - a weekend for families at Bendrigg and a family day held at Thomley. £1150 grant was received from the Yorkshire Dales for activities to take place in the local area, where a caving experience was enjoyed It was agreed by all trustees that Nigel Over (retired chair of SmithMcGeniss – a similar condition as DDX3X) would be paid on an ad-hoc basis to help manage internships over the summer. The charity chair attended an online public speaking course with the Beacon and also attended the DDX3X scientific conference online. The charity chair entered into the Beacon for Rare Diseases patient group pairing for the annual student voice competition. A medical student from the 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 3[rd] year we have entered the competition.

The charity chair joined meetings organised by the Rare resilience program run by a counsellor bringing together small charities, discussing similar concerns regarding various rare conditions.

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.

TAR

March 2012

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:

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

Signature(s)

	ustees

Full name(s) Position (eg Secretary, Chair, etc) Date	Clare Millington	Carol Field
	Chair	Treasurer

	18.01.2024	18.01.2024

TAR

March 2012

Charity Name No (if any) DDX3X SUPPORT UK 1187846 Receipts and payments accounts CC16a

For the period Period end date To from 01 April 2022 31 March 2023

Section A Receipts and payments

A1 Receipts	Unrestricted funds to the nearest £ 5,204 52 - - - - - - 5,256 - - - 5,256 288 144 1,300 57 128 - - - - 1,916 - - - 1,916 3,340 - 15,077 18,417	Restricted funds to the nearest £ - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -	Endowment funds to the nearest £ - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -	Total funds to the nearest £ 5,204 52 - - - - - - 5,256 - - - 5,256 288 144 1,300 57 128 - - - - 1,916 - - - 1,916 3,340	Last year to the nearest £
Donations	5,204				5,875
Familycontribution to CharityEvents	52				870
	-				-
	-				-
	-				-
	-				-
	-				-
	-				-
*Sub total*(Gross income for AR)	5,256				6,745

A2 Asset and investment sales, (see table).
	-				-
	-				-
*Sub total*	-				-
*Total receipts* A3 Payments
					6,745

Enthuse	288				312
Zoom	144				144
Charity Events inc Weekend Meetups	1,300				2,294
Merchandise	57				-
Insurance	128				-
	-				-
	-				-
	-				-
	-				-
**Sub total **	1,916				2,749

A4 Asset and investment purchases, (see table)
	-
	-
**Sub total **	-				-
*Total payments* *Net of receipts/(payments)* A5 Transfers between funds A6 Cash funds last year end *Cash funds this year end*
					2,749

	3,340	-	-	3,340	3,996
	-	-	-	-	-
	15,077	-	-	15,077	11,081
	18,417	-	-	18,417	15,077

2022-23 Form CC16a

Page 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 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 Page 2	Unrestricted funds Restricted funds Endowment funds to nearest £ to nearest £ to nearest £ 18,417 - - - - - - - - 18,417 - - OK OK OK Unrestricted funds Restricted funds Endowment funds to nearest £ to nearest £ to nearest £ - - - - - - - - - - - - - - - - - - Fund to which asset belongs Cost (optional) Current value (optional) - - - - - - - - - - Fund to which asset belongs Cost (optional) Current value (optional) - - - - - - - - - - - - Fund to which liability relates Amount due (optional) When due (optional) - - - - - Date of approval 18.01.2024 18.01.2024 Print Name C Field C Milllington 2022-23 Form CC16a	Endowment funds to nearest £
			-
			-
			-
			-
			OK
			Endowment funds to nearest £
			-
			-
			-
			-
			-
			-
			Current value (optional)
			-
			-
			-
			-
			-
			Current value (optional)
			-
			-
			-
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			When due (optional)






			Date of approval
			18.01.2024
			18.01.2024