## **Trustees' Annual Report for the period**
## **From**
Period start date Period end date
## **To**
**Day 10 Month FEBRUARY Year 2020 Day 31 Month MARCH Year 2021**
March **2012**
**TAR**
1
Section A Reference and administration details
**Charity name**
## DDX3X SUPPORT UK
**Other names charity is known by**
**Registered charity number (if any)**
1187846
March **2012**
**TAR**
2
## **Charity's principal address**
Biggins Lodge Farmhouse
High Biggins
Carnforth
## **Postcode LA6 2NP**
## **Names of the charity trustees who manage the charity**
March **2012**
**TAR**
3
1
## **Trustee name Office (if any) Dates acted if not for whole year Name of person (or body) entitled to appoint trustee (if any)**
Clare Millington Chair
2
Carol Field
3
Alicia Makinson
Paul Bates
4
March **2012**
**TAR**
4
Amy Clarkson
June 2020
TAR
March 2012
io
li
12
13
TAR
March 2012
14
15
16
17
TAR
March 2012
18
19
20
## **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**
8
## **Names and addresses of advisers (Optional information)**
## **Type of adviser Name Address**
March **2012**
**TAR**
9
## **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
(eg. trust deed, constitution)
Constitution
How the charity is constituted
(eg. trust, association, company)
Charitable Incorporated Organisation
## Trustee selection methods
(eg. appointed by, elected by)
Appointment by existing trustees
## **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**
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**
10
## **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.
We have a Facebook Group providing information for the general public, we also have a closed Facebook group to provide support to members.
Zoom meets were held inviting the DDX3X community to join us for a supportive group chat. As F2F suspended
Promotes the charity and raises awareness through media, organised events and networking.
Registered with Enthuse to enable donations and gift aid (once registered) to be managed by them
19 DDX3X families joined the Bingo (Brain and Behaviour in Intellectual Disability of known Genetic Origin) research study held by the University of Cambridge and feedback was received from the study. DDX3X was the largest cohort in the study and anxiety was a much more marked in DDX3X than any other condition.
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.
Application submitted to HMRC for gift aid
## Section D Achievements and performance
March **2012**
**TAR**
11
## Section D Achievements and performance
## **Summary of the main achievements of the charity during the year**
The charity was recently registered as a CIO in February 2020
Contact from families diagnosed continues to grow and we now have 160 supporter and we have 83 families identified as having a diagnosis of DDX3X Syndrome - that have joined our facebook group
Fundraising events were held – Pip’s Canoe Challenge, a daily blog reached out to over 14000 people helping to raise awareness of DDX3X and over £3000 was raised.
The charity chair attended Concord co-ordinated care for rare conditions webinar.
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 researched 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 chair has had a meeting with Lauren Roberts from Genetic Alliance UK for help and guidance of a job description / job specification for a person to possibly be recruited by the charity.
The idea of information packs for families with a recent diagnosis were discussed.
March **2012**
**TAR**
12
## **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. However, in the future we are considering having a £1k in 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 G Declaration**
## **The trustees declare that they have approved the trustees’ report above.**
**Signed on behalf of the charity’s trustees**
**Signature(s)**
March **2012**
**TAR**
13
**Full name(s)**
Clare Millington Carol Field
**Position (eg Secretary, Chair, etc)**
Chair
## **Date**
25/11/2021
March **2012**
**TAR**
14
**Charity Name N DDX3X SUPPORT UK 1**
## **Receipts and payments acco**
**For the period from**
**To**
###
## **Section A Receipts and payments**
**Unrestricted Restricted Endowment funds funds funds**
**to the nearest £**
**to the nearest £ to the nearest £**
## **A1 Receipts**
**----- Start of picture text -----**
Donations Direct (2) 1,182 - -
Just Giving 701 - -
Enthuse 2,683 - -
- - -
- - -
- - -
- - -
- - -
4,566 - -
Sub total (Gross income for AR)
A2 Asset and investment sales,
(see table).
- - -
- - -
Sub total [ - ] - -
Total receipts 4,566 - -
A3 Payments
Enthuse 168 - -
Zoom 115 - -
- - -
- - -
- - -
- - -
- - -
- - -
- - -
Sub total 283 - -
A4 Asset and investment
purchases, (see table)
- - -
- - -
Sub total - - -
Total payments 283 - -
Net of receipts/(payments) 4,283 - -
A5 Transfers between funds - - -
A6 Cash funds last year end 6,798 - -
**----- End of picture text -----**
_**Cash funds this year end**_ **11,081 - -**
## **Section B Statement of assets and liabilities at the end of**
**Categories B1 Cash funds**
## **B2 Other monetary assets**
**Unrestricted Details funds to nearest £** Cash in Bank **11,081 - -** _**Total cash funds**_ **11,081** (agree balances with receipts and payments account(s)) OK **Unrestricted funds Details to nearest £ - - - - - -**
## **Fund to which Details asset belongs**
## **B3 Investment assets B4 Assets retained for the charity’s own use**
|**Details**
**Details**
**Fund to which**
**asset belongs**
**Fund to which**
**liability relates**|**Details**
**Details**
**Fund to which**
**asset belongs**
**Fund to which**
**liability relates**|
|---|---|
|||
|||
## **B5 Liabilities**
Signed by one or two trustees on behalf of all the trustees
**----- Start of picture text -----**
|||
|---|---|
|Signature|Print N|
|Clare Mil|
|Carol F|
**----- End of picture text -----**
**o (if any) 187846**
## **ounts**
## **CC16a**
Period end date
###
## **Total funds**
## **Last year**
**to the nearest £ to the nearest £**
**----- Start of picture text -----**
1,182 -
701 -
2,683 -
- -
- -
- -
- -
- -
4,566 -
**----- End of picture text -----**
**----- Start of picture text -----**
-
- -
- -
4,566 -
168 -
115 -
- -
- -
- -
- -
- -
- -
- -
283 -
**----- End of picture text -----**
**----- Start of picture text -----**
-
-
- -
283 -
4,283 -
- -
6,798 -
**----- End of picture text -----**
## **the period**
**----- Start of picture text -----**
Restricted Endowment
funds funds
to nearest £ to nearest £
- -
- -
- -
- -
OK OK
Restricted Endowment
funds funds
to nearest £ to nearest £
- -
- -
- -
- -
- -
- -
Current value
Cost (optional)
(optional)
- -
- -
- -
- -
- -
**----- End of picture text -----**
**----- Start of picture text -----**
Current value
Cost (optional)
(optional)
- -
- -
- -
- -
- -
- -
- -
- -
- -
Amount due When due
(optional) (optional)
-
-
**----- End of picture text -----**
**-**
**----- Start of picture text -----**
Date of
Name
approval
lington 11/25/2021
Field 11/25/2021
**----- End of picture text -----**
## **Accounts for 10 February 2020 - 31 March 2021**
## **Cash**
||**Cash**||
|---|---|---|
|02/10/2020|Opening Cash Balance|6798.40|
||Closing Cash Balance|11081.27|
||**Receipts**||
|07/27/2020|Donation - Cheque Received|1000.00|
|09/21/2020|Enthuse|1026.67|
|10/15/2020|Just Giving|452.33|
|10/20/2020|Enthuse|1646.54|
|10/21/2020|Just Giving|132.12|
|10/27/2020|Just Giving|116.72|
|11/19/2020|Enthuse|9.75|
|12/09/2020|Credit|181.77|
||**Total Receipts**|**4565.90**|
||**Payments**||
|06/11/2020|Zoom|-115.10|
|09/08/2020|Enthuse|-23.99|
|10/01/2020|Enthuse|-23.99|
|10/30/2020|Enthuse|-23.99|
|12/02/2020|Enthuse|-23.99|
|01/04/2020|Enthuse|-23.99|
|02/01/2020|Enthuse|-23.99|
|03/04/2020|Enthuse|-23.99|
||**Total Payment**|**-283.03**|
|Enthuse|2682.96|
|---|---|
|Just Giving|701.17|
|Enthuse|-167.93|