FANCONI HOPE ## Independent Examiner’s Report to the Trustees of Fanconi Hope For the year ended 30 April 2024 I report on the accounts of the charity for the year ended 30 April 2024, which are set out on pages 6 to 7. ## **Respective responsibilities of trustees and examiner** The charity's trustees are responsible for the preparation of the accounts. The charity’s trustees consider that an audit is not required for this year under section 144(2) of the Charities Act 2011 (the 2011 Act) and that an independent examination is needed. It is my responsibility to: - examine the accounts under section 145 of the Charities Act, - to follow the procedures laid down in the general Directions given by the Charity Commission - (under section 145 (5)(b) of the 2011 Act, and - to state whether particular matters have come to my attention. ## **Basis of independent examiner’s statement** My examination was carried out in accordance with general Directions given by the Charity Commission. An examination includes a review of the accounting records kept by the charity and a comparison of the accounts presented with those records. It also includes consideration of any unusual items or disclosures in the accounts, and seeking explanations from the trustees concerning any such matters. The procedures undertaken do not provide all the evidence that would be required in an audit, and consequently no opinion is given as to whether the accounts present a ‘true and fair’ view and the report is limited to those matters set out in the statement below. ## **Independent examiner's statement** In connection with my examination, no matter has come to my attention 1. which gives me reasonable cause to believe that in, any material respect, the requirements: - to keep accounting records in accordance with section 130 of the Charities Act; and - • to prepare accounts which accord with the accounting records and comply with the accounting requirements of the Charities Act have not been met ; or 2. to which, in my opinion, attention should be drawn in order to enable a proper understanding of the accounts to be reached. Jennifer de Clercq Smithe & Co Limited Chichester Enterprise Centre Terminus Road Chichester West Sussex PO19 8FY Date: 13 February 2025 Registered Charity number 1126894 ## **FANCONI HOPE** ## **STATEMENT OF ACCOUNTS** # **FOR THE YEAR ENDED 30 APRIL 2024** **FANCONI HOPE** ## **INCOME AND EXPENDITURE ACCOUNT** ## **FOR THE YEAR ENDED 30 APRIL 2024** |2023
26,385.98
10,840.00
1,143.75
381.80
38,751.53
10,300.00
2,378.70
31,512.78
300.00
44,491.48
3,069.67
5,778.53
399.60
0.00
9,247.80
928.60
2,093.06
0.00
22.99
140.97
155.29
0.00
59.00
1,981.29
360.00
5,741.20
59,480.48
(20,728.95)|**RECEIPTS**
Donations
Grant
Gift Aid
Bank interest
**PAYMENTS**
Charitable Activities
FA Europe
Conference costs
Research costs
Subscriptions
Raising funds
Family Support and Events
Fundraising costs
Just Giving
Charity Checkout Online
Other costs
Stationery, postage and telephone
Computer, internet and website
Virtual Assistant
Travel
Training
Trustees meetings
Insurance
Paypal charges and reader
Bank charges
Depreciation
Independent examiner's fee
Total payments
Surplus / (Deficit) for the year|49,209.81
13,408.00
6,885.65
1,393.77
70,897.23
20,060.00
6,452.09
23,587.00
150.00
50,249.09
33,325.74
3,695.97
331.20
0.00
37,352.91
1,019.87
2,968.12
1,820.00
0.00
739.93
672.95
159.84
0.00
62.40
639.45
360.00
8,442.56
96,044.56
(25,147.33)
2024|49,209.81
13,408.00
6,885.65
1,393.77
70,897.23
20,060.00
6,452.09
23,587.00
150.00
50,249.09
33,325.74
3,695.97
331.20
0.00
37,352.91
1,019.87
2,968.12
1,820.00
0.00
739.93
672.95
159.84
0.00
62.40
639.45
360.00
8,442.56
96,044.56
(25,147.33)
2024| |---|---|---|---| ||||(25,147.33)| 6 **FANCONI HOPE** ## **STATEMENT OF ASSETS AND LIABILITIES** ## **FOR THE YEAR ENDED 30 APRIL 2024** |2023
114,901.12
Accumulated reserves brought forward
(20,776.59)
Surplus / deficit for the year
94,124.53
Represented by:
Fixed assets:
500.00
Gazebo
6,880.53
IT equipment - grant funded
750.00
Projector - grant funded
799.99
Laptop
771.44
IT equipment - Videoconferencing
872.80
Laptop and SSD
179.00
Router
Office chair
Galaxy S7 tablet
(8,645.69)
Less depreciation (20% on cost)
2,108.07
3,344.34
Current Account
89,511.49
Business Premium Account
97.12
Paypal
(Creditor)/Debtor - Trustees expenses
(936.49)
to be re-imbursed
94,124.53||2024
94,124.53
(25,147.33)| |---|---|---| |||68,977.20| |||500.00
6,880.53
750.00
799.99
771.44
872.80
179.00
146.99
479.00
(9,285.14)| |||2,094.61
9,884.51
57,905.26
270.48
(1,177.66)| |||68,977.20| - - 7 ## **Trustees’ Annual Report for the period** ## **From 1 May 2023 To 30 April 2024** ## **Charity name: FANCONI HOPE CHARITABLE TRUST** ## **Charity registration number: 1126894** ## **Objectives and Activities** ||SORP reference|| |---|---|---| |Summary of the purposes of
the charity as set out in its
governing document|Para 1.17|•
To relieve the sickness of those
children and adults suffering from
Fanconi Anaemia
•
To promote awareness and
advance the education of the
medical profession and the public in
all areas relating to Fanconi
Anaemia
•
To promote research into the cause
and treatment of Fanconi Anaemia
for the public benefit| |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|•
Help in providing support and
information for families affected by
Fanconi Anaemia. Acting as a link
to connect families in the UK and
Ireland through events for affected
families and through the use of
email, our website and other social
media.
•
Continued development of Long
Term Effects of Fanconi Anaemia
Study,100% funded by the Charity.
•
100% funding of Proton Beam
Therapy research project at
Manchester’s Christie Hospital.
•
Partnering initiative set up with
European Fanconi Anaemia support
groups in an umbrella organisation
called FA Europe.
•
Collaborations with US Fanconi
Cancer Foundation| |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 had regard to
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|Research Grants
Our policy is to fund UK-based research
projects.| |Policy on social investment
including program related
investment|Para 1.38|| |Contribution made by
volunteers|Para 1.38|Volunteer Contributions. All Charity
Trustees give their time voluntarily| |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|Bringing Families Together:
•
Highly successful Family
Conference weekend held in June
23, involving over 140 people from
around the UK. Feedback on the
benefits of the event to patients and
parents was overwhelmingly
positive. (Net Promoter Score was
+89)
Supporting Families
•
Our Collaborative National Lottery-
funded Better Together Consortium
Project has delivered significant
support to patients and parents in
relation to Emotional Wellbeing,
Benefits and Travel Insurance
Advice.
Fundraising Activities
•
Families, friends and colleagues
continue to contribute to the
fundraising effort, actively supported
by the Charity.
Raising Awareness
The Better Together Consortium
Project has enabled greater
awareness raising amongst families
and healthcare professionals
Promoting Research| |•|The Fanconi Hope-funded Late| |---|---| ||Effects of Fanconi Anaemia Study is| ||a long term Registry project which| ||now holds data on more than 75| ||patients in the UK and over 1000| ||patient-years of data, allowing| ||research on the data contained in| ||the Registry to be undertaken and| ||conclusions drawn.| |•|Fanconi Hope is funding a research| ||project into the use of Proton Beam| ||Therapy for treatment of cancers in| ||patients with FA. Programme is now| ||in year 3 with a 4thyear extension| ||planned. Initial results from the work| ||are proving very informative to the| ||medical community.| |•|Fanconi Hope continues to play its| ||part in the Fanconi Anemia Global| ||Network set up in the US to discuss| ||development of greater family| ||support and research networks| ||across the world.| |•|We continue with the development| ||of the FA Europe network, which we| ||helped to initiate in 2019, to help| ||with common approaches to| ||research and patient support| ||amongst a scarce set of European| ||medical experts. Our first Europe-| ||wide Scientific Meeting is planned| ||for May 24.| **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||All monies raised are held within standard
and high interest bank accounts with HSBC| ## **Financial Review** |Review of the charity’s
financial position at the end
of the period|Para 1.21|Income:£ 70897
Expenditure: £ 96044
Deficit (£ 25147)
Statement of Assets and Liabilities:
Accum reserves brought forward: £94125
Surplus for year: (£25147)
Total £68977
Consisting of:-
Fixed assets less depreciation: £2095
•
Current Account: £9885
•
Business Premium Account: £57905
•
Paypal: £270
•
Trustees expenses to be
reimbursed:(£ 1178)| |---|---|---| |Statement explaining the
policy for holding reserves
stating why they are held|Para 1.22|Reserves policy is to maintain a balance of
at least £20,000 to cover normal operating
expenses and provide an acceptable level
of family support. Research projects will
only be initiated when the full amount of the
project is held in the bank in addition to the
reserves held.| |Amount of reserves held|Para 1.22|£20,000| |Reasons for holding zero
reserves|Para 1.22|N/A| |Details of fund materially in
deficit|Para 1.24|N/A| |Explanation of any
uncertainties about the
charity continuing as a going
concern|Para 1.23|No uncertainties or concerns| ## **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|Fundraising events organised by families
and friends and through direct donations
from companies and private individuals
remain the main source of funds for the
Charity.| |---|---|---| |Investment policy and
objectives including any
social investment policy
adopted|Para 1.46|| |A description of the principal
risks facing the charity|Para 1.46|| |Other||| ## **Structure, Governance and Management** |Description of charity’s
trusts:||Single Trust, inaugurated 4thMay 2008| |---|---|---| |Type of governing document|Para 1.25|Trust Deed| |(trust deed, royal charter)||| |---|---|---| |How is the charity
constituted?
(e.g unincorporated
association, CIO)|Para 1.25|Unincorporated association| |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|Selection and election by existing board of
Trustees| ## **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|| |The charity’s organisational
structure and any wider
network with which the
charity works|Para 1.51|| |Relationship with any
related parties|Para 1.51|Fanconi Hope is a member of the following
organisations:
•
Genetic Alliance UK
•
Specialised Healthcare Alliance
•
Together for Healthy Marrow
Alliance
•
National Council of Voluntary
Organisations
•
Institute of Fundraising
Fanconi Hope also works closely with sister
organisations outside the UK involved with
Fanconi Anaemia family support, principally
the Fanconi Cancer Foundation in the US
and the FA Europe network| |Other||| ## **Reference and Administrative details** |Charity name|Fanconi Hope Charitable Trust| |---|---| |Other name the charity uses|| |Registered charity number|1126894| Charity’s principal address New Street Centre, New Street, Chesterfield, S40 2JZ ## **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)**| |---|---|---|---|---| ||Mr Robert
Dalgleish|Chairman||Board of Trustees| ||Dr Nigel J Jones|Treasurer||Board of Trustees| ||Mrs Beth Lee|Secretary||Board of Trustees| ||Prof Josu de la
Fuente|Board member||Board of Trustees| ||Dr Stefan Meyer|Board member||Board of Trustees| ||Prof Marc
Tischkowitz|Board member||Board of Trustees| ||Dr Roshni George|Board member||Board of 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 None held in this capacity Name and objects of the N/A charity on whose behalf the assets are held and how this falls within the custodian charity’s objects Details of arrangements for N/A 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**
**adviser**
**Name**
**Address**|**Type of**
**adviser**
**Name**
**Address**|**Type of**
**adviser**
**Name**
**Address**| |---|---|---| |||| |||| |||| |||| |**Name of chief executive or names of senior staff members (Optional information)**||| |||| ## **Exemptions from disclosure** Reason for non-disclosure of key personnel details **N/A** ## **Other optional information**