## **Trustees’ Annual Report for the period** **From Period start date 1 April 2023 to Period end date 31 March 2024** ## **Charity name: DC Action** ## **Charity registration number: 1167150** ## **Objectives and Activities** ||SORP reference|| |---|---|---| |Summary of the purposes of
the charity as set out in its
governing document|Para 1.17|•
To preserve and protect the health of
patients with Dyskeratosis Congenita
and other Telomere Disorders, by
providing and assisting in the provision
of facilities, support services and
educational materials not normally
provided by the statutory authorities.
•
To advance the education of the public
by the publication of a website,
newsletters, information sheets and
other materials.
•
To promote and protect the physical
and mental health of those affected
by Dyskeratosis Congenita through
the provision of advocacy, support,
education and practical advice.
•
To advance the education of the
general public, medical and scientific
professionals in all areas relating to
Dyskeratosis Congenita and other
telomere disorders.| |Summary of the main
activities in relation to those
purposes for the public
benefit, in particular, the
activities, projects or
services identified in the
accounts.|Para 1.17 and
1.19|•
Principal Patient and Public
Involvement organisation for
DEMISTFI, a large UKRI funded study
into multimorbidity.
•
Participation in regular Better Together
for Healthy Bone Marrow consortium
meetings and joint projects.
•
Dissemination of Mental Wellbeing and
other Better Together courses to the
DC Action community.
•
Convenor of quarterly Community
Support Meetings in conjunction with
the Gary Woodward Dyskeratosis
Congenita Trust.
•
Attendance at the British Thoracic
Society Meeting to raise awareness of
Telomere Biology Disorders with
respiratory physicians.| |||•
Participation in Familial Pulmonary
Fibrosis NHSE pathway development
workshop.
•
Ongoing patient and family support.
•
Contributor to the Aplastic Anaemia
Trust’s Rare Voices Report.
•
Contributor to “Accessibility of Medical
Products for Rare Diseases in the UK”
(Dr. Eva Hilberg, University of Sheffield
qualitative study)
•
Contributor to Medics for Rare
Diseases medical student prize essay
competition
•
Contributed to several other surveys re
rare diseases| |---|---|---| |Statement confirming
whether the trustees have
had regard to the guidance
issued by the Charity
Commission on public
benefit|Para 1.18|The trustees have acted in accordance with
the guidance issued by the Charity
Commission on public benefit.| ## **Additional information (optional)** You may choose to include further statements where relevant about: ||SORP reference|| |---|---|---| |Policy on grant making|Para 1.38|DC Action does not intend to disburse
grants. However, the trustees will consider
any request for a grant on a case-by-case
basis, with due regard to the charity’s aim
and objectives.| |Policy on social investment
including program related
investment|Para 1.38|| |Contribution made by
volunteers|Para 1.38|•
Advocacy.
•
Governance.
•
Fundraising.
•
Provision of medical and scientific
advice.
•
Providing a community reference.
•
Support to patients and their families.
•
Participation in conferences and
meetings.| |Other||| ## **Achievements and Performance** ||SORP reference|| |---|---|---| |Summary of the main
achievements of the charity,
identifying the difference the
charity’s work has made to
the circumstances of its
beneficiaries and any wider
benefits to society as a
whole.|Para 1.20|DC Action supported over 50 patients over
the past year and new patients are
contacting us on a regular basis.
Raising awareness of Telomere Biology
Disorders is one of DC Action’s primary
aims and we have done this by attendance
at conferences and meetings and through
exchanges with healthcare professionals
and other organisations such as The
Specialised Health Care Alliance and
Medics for Rare Diseases.
Through our work promoting genetic
diagnosis,
-
there are now (limited) telomere
biology disorder panels available to
NHS respiratory physicians and
haematologists.
-
uptake of telomere length testing is
increasing (STELA method)
-
This has increased diagnosis rates
and therefore allowed avoidance of
ineffective/damaging treatments,
while improving access to
appropriate care.
Through the Better Together Consortium
(National Lottery Community Fund
supported) we have offered mental
wellbeing support, advice on financial
support and hosted well attended, quarterly
Community Meetings via Zoom which give
patients living with these rare disorders the
opportunity to come together to ask
questions and discuss the most pressing
issues they face.| ## **Additional information (optional)** You may choose to include further statements where relevant about: |||| |---|---|---| |Achievements against
objectives set|Para 1.41|| |Performance of fundraising
activities against objectives
set|Para 1.41|| |Investment performance
against objectives|Para 1.41|| Other ## **Financial Review** |**Financial Review**||| |---|---|---| |Review of the charity’s
financial position at the end
of the period|Para 1.21|Although DC Action’s funds of £9,170 at
year end are modest, income of £4,307
exceeded expenditure of £1,854: the
charity’s financial situation is robust. Funds
are being built up in anticipation of holding
one or more major advocacy events in
FY24-25.| |Statement explaining the
policy for holding reserves
stating why they are held|Para 1.22|The trustees consider that there is currently
no requirement for specific reserves to be
set aside.| |Amount of reserves held|Para 1.22|Zero.| |Reasons for holding zero
reserves|Para 1.22|The trustees consider that as funds are
currently at a low level, there is no
requirement for reserves. The trustees will
review this policy annually.| |Details of fund materially in
deficit|Para 1.24|Not applicable.| |Explanation of any
uncertainties about the
charity continuing as a going
concern|Para 1.23|DC Action’s finances, though limited, are
sound and set to build. Income streams are
reliable and expenditure is limited.| |**Additional information (optional)**
You may choose to include further statements|**Additional information (optional)**
You may choose to include further statements|where relevant about:| |---|---|---| |The charity’s principal
sources of funds (including
any fundraising)|Para 1.47|Grants from the National Lottery
Community Fund via The Aplastic Anaemia
Trust (principal applicant) and small
individual private donations via JustGiving
& The GivingMachine.| |Investment policy and
objectives including any
social investment policy
adopted|Para 1.46|The trustees consider that there are
currently insufficient funds for investment.
The trustees will review this policy annually.| |A description of the principal
risks facing the charity|Para 1.46|As DC Action’s outputs are essentially
advocacy, support and education, the
principal risk is to our reputation. This is
mitigated by having a mix of trustees, with
backgrounds ranging from medical
expertise to lay people.
DC Action is actively seeking to expand the
number and range of expertise of its
trustees.| |Other||| ## **Structure, Governance and Management** |Description of charity’s
trusts:||| |---|---|---| |Type of governing document
(trust deed, royal charter)|
Para 1.25|‘Foundation’ model constitution.| |How is the charity
constituted?
(e.g unincorporated
association, CIO)|Para 1.25|DC Action has a constitution of a
Charitable Incorporated Organisation
(CIO).| |Trustee selection methods
including details of any
constitutional provisions e.g.
election to post or name of
any person or body entitled
to appoint one or more
trustees|Para 1.25|DC Action’s only voting members are its
charity trustees.| |**Additional information (optional)**
You may choose to include further statements|**Additional information (optional)**
You may choose to include further statements|where relevant about:| |---|---|---| |Policies and procedures
adopted for the induction
and training of trustees|Para 1.51|Trustees are referred to The Charity
Commission’s guidance on charity
governance.| |The charity’s organisational
structure and any wider
network with which the
charity works|Para 1.51|DC Action works closely with:
•
Aplastic Anaemia Trust
•
Better Together for Healthy Marrow
Alliance
•
British Thoracic Society
•
DEMISTIFI, NIHR
•
Gary Woodward Dyskeratosis
Congenita Trust
•
Genetic Alliance
•
M4RD
•
Rare Beacon (medical student prize
essay)
•
US charity Team Telomere| |Relationship with any
related parties|Para 1.51|| |Other||| ## **Reference and Administrative details** |Charity name|DC Action| |---|---| |Other name the charity uses|(None).| |Registered charity number|1167150| |Charity’s principal address|83 Digby Crescent, London, England, N4 2HS| ||| ## **Names of the charity trustees who manage the charity** |1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20|**Trustee name**|**Office (if any)**|**Dates acted if not for whole**
**year **|**Name of person (or body) entitled**
**to appoint trustee (ifany)**| |---|---|---|---|---| ||Alice Buckley|IT support||Fellow trustees| ||Willem Buckley|Treasurer;
governance|From October 2023|Fellow trustees| ||HilaryLonghurst|Medical Advisor||Fellow trustees| ||Jane Paxton|Scientific Advisor||Fellow trustees| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| – Corporate trustees names of the directors at the date the report was approved **Director name** Name of trustees holding title to property belonging to the charity **Trustee name Dates acted if not for whole year** ## **Funds held as custodian trustees on behalf of others** Description of the assets held in this capacity Name and objects of the charity on whose behalf the assets are held and how this falls within the custodian charity’s objects Details of arrangements for safe custody and segregation of such assets from the charity’s own assets ## **Additional information (optional)** ## **Names and addresses of advisers (Optional information)** **Type of Name Address adviser** **Name of chief executive or names of senior staff members (Optional information)** ## **Exemptions from disclosure** Reason for non-disclosure of key personnel details ## **Other optional information** ## **Declarations** **The trustees declare that they have approved the trustees’ report above.** **Signed on behalf of the charity’s trustees** **Signature(s)** _**Will**_ Buckley **Full name(s) Willem Buckley** Jane Paxton **Position (eg Secretary,** Treasurer Scientific Adviser **Chair, etc)** **Date** 23 December 2024 ||**Charity Name**||||||**No (if any)**|**No (if any)**||| |---|---|---|---|---|---|---|---|---|---|---| ||**DC Action**||||||**1167150**|||| ||**Receipts andpayments accounts**|||||||||**CC16a**| |**For the period**
**from**
~~rr ~~||**For the period**
|Period start date
01-Apr-23
~~a~~|||**To**
~~ee~~||Period end date
31-Mar-24||| |**Section A Receipts and payments**||||||||||| ||**Unrestricted**
**funds**||**Restricted**
**funds**|**Restricted**||**Endowment**
**funds**||**Total funds**||**Last year**| ||**to the nearest**
**£**|**to the nearest**|**to the nearest £**|**to the nearest £**||**to the nearest £**||**to the nearest £**||**to the nearest £**| |**A1 Receipts**||||||||||| |Amazon Europe|**23**||**-**|**-**||**-**||**23**||**22**| |Justgiving& Givingmachine|**876**||**-**|**-**||**-**||**876**||**268**| |National Lottery Community Fund, via the
Aplastic Anaemia Trust|**3,408**||**-**|**-**||**-**||**3,408**||**1,680**| ||**-**||**-**|**-**||**-**||**-**||**-**| ||**-**||**-**|**-**||**-**||**-**||**-**| ||**-**||**-**|**-**||**-**||**-**||**-**| ||**-**||**-**|**-**||**-**||**-**||**-**| ||**-**||**-**|**-**||**-**||**-**||**-**| |**_Sub total_**_(Gross income for_
_AR)_|_(Gross income for_
_AR)_
**4,307**||**-**|**-**||**-**||**4,307**||**1,970**| |**A2 Asset and investment sales,**
**(see table).**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**_Sub total_ -**
**-**
**-**
**-**
**-**
**_Total receipts_**
**4,307**
**-**
**-**
**4,307**
**1,970**
~~——————~~||||||||||| |**A3 Payments**||||||||||| |DSJ Partners|**1,080**||**-**|**-**||**-**||**1,080**||**-**| |British Thoracic Society - conference||||||||||| |registration|**480**||**-**|**-**||**-**||**480**||**-**| |Refund ofpersonal expenses|**220**||**-**|**-**||**-**||**220**||**-**| |Minuteman Press|**74**||**-**|**-**||**-**||**74**||**-**| ||**-**||**-**|**-**||**-**||**-**||**-**| ||**-**||**-**|**-**||**-**||**-**||**-**| ||**-**||**-**|**-**||**-**||**-**||**-**| ||**-**||**-**|**-**||**-**||**-**||**-**| ||**-**||**-**|**-**||**-**||**-**||**-**| |**_Sub total_ **|**1,854**||**-**|**-**||**-**||**1,854**||**-**| |**A4 Asset and investment**
**purchases, (see table)**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**_Sub total_ -**
**-**
**-**
**-**
**-**
**_Total payments_**
**1,854**
**-**
**-**
**1,854**
**-**
**_Net of receipts/(payments)_**
**2,453**
**-**
**-**
**2,453**
**1,970**
**A5 Transfers between funds**
**-**
**- -**
**-**
**-**
**A6 Cash funds last year end**
**6,717**
**- -**
**6,717**
**4,747**
**_Cash funds this year end_**
**9,170**
**-**
**- 9,170**
**6,717**
~~—————~~
~~SSS55=~~||||||||||| CCXX R1 accounts (SS) 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**
**B3 Investment assets**
**B2 Other monetary assets**
**B4 Assets retained for the**
**charity’s own use**
**B1 Cash funds**|**Details**
**Details**
**_Total cash funds_**
(agree balances with receipts and payments
account(s))
**Details**
**Details**
**Details**
Signature|**Unrestricted**
**funds**
**Restricted**
**funds**
**to nearest £**
**to nearest £**
**9,244**
**-**
**-**
**-**
**-**
**-**
**9,170**
**-**
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|**Endowment**
**funds**
**to nearest £**| |---|---|---|---| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||OK| ||||**Endowment**
**funds**
**to nearest £**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**Current value**
**(optional)**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**Current value**
**(optional)**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**When due**
**(optional)**| ||||| ||||| ||||| ||||| ||||| ||||| ||||Date of
approval| ||||| ||||| CCXX R2 accounts (SS) 2