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2023-04-30-accounts

Registered Charity number 1126894

FANCONI HOPE

STATEMENT OF ACCOUNTS

FOR THE YEAR ENDED 30 APRIL 2023

FANCONI HOPE

INCOME AND EXPENDITURE ACCOUNT

FOR THE YEAR ENDED 30 APRIL 2023

2022
34,031.47
2,500.00
298.44
13.11
36,843.02
0.00
0.00
38,142.50
250.00
38,392.50
0.00
5,050.99
0.00
0.00
5,050.99
1,083.88
1,012.28
0.00
0.00
0.00
153.51
96.76
35.25
1,786.10
360.00
4,527.78
47,971.27
(11,128.25)		 RECEIPTS
Donations
Grant
Gift Aid
Bank interest
PAYMENTS
Charitable Activities
FA Europe
Conference costs
Research costs
Subscriptions
Raising funds
Family Support
Fundraising costs
Just Giving
Charity Checkout Online
Other costs
Stationery, postage and telephone
Computer, internet and website
Travel
Training
Trustees meetings
Insurance
Paypal charges and reader
Bank charges
Depreciation
Independent examiner's fee
Total payments
Surplus / (Deficit) for the year		 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)
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)
2023
(20,728.95)

6

FANCONI HOPE

STATEMENT OF ASSETS AND LIABILITIES

FOR THE YEAR ENDED 30 APRIL 2023

2022
126,029.37
Accumulated reserves brought forward
(9,342.15)
Surplus / deficit for the year
116,687.22
Represented by:
Fixed assets:
500.00
Gazebo
6,880.53
IT equipment - grant funded
750.00
Projector - grant funded
799.99
Laptop
IT equipment - Videoconferencing
Laptop and SSD
Router
(6,664.40)
Less depreciation (20% on cost)
2,266.12
8,296.89
Current Account
104,129.69
Business Premium Account
1,105.05
Paypal
(Creditor)/Debtor - Trustees expenses
(936.49)
to be re-imbursed
39.86
Mischarged expenses - reimbursed 19/02/2023
114,901.12		 2023
116,687.22
(20,728.95)
95,958.27
500.00
6,880.53
750.00
799.99
771.44
872.80
179.00
(8,645.69)
2,108.07
3,344.34
89,511.49
97.12
(936.49)
0.00
94,124.53

7

FANCONI HOPE

Independent Examiner’s Report to the Trustees of Fanconi Hope

For the year ended 30 April 2023

I report on the accounts of the charity for the year ended 30 April 2023, 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:

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:

  2. to keep accounting records in accordance with section 130 of the Charities Act; and

  3. • to prepare accounts which accord with the accounting records and comply with the accounting requirements of the Charities Act

have not been met ; or

  1. to which, in my opinion, attention should be drawn in order to enable a proper understanding of the accounts to be reached.

Jennifer Smith Smithe & Co Limited Chichester Enterprise Centre Terminus Road Chichester West Sussex PO19 8FY

Date: 24 February 2024

Trustees’ Annual Report for the period

From 1 May 2022 To 30 April 2023

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.
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:
•
Extensive preparations are being
made for a Family Conference
weekend in June 23. This will be our
most ambitious event to date and
will involve around 150 people from
around the UK.
•
A successful social weekend, in
conjunction with our Dutch
counterpart organisation, was held
in June 22 to bring together young
adults with Fanconi Anaemia.
Fundraising Activities:
•
Families, friends and colleagues
continue to contribute to the
fundraising effort, actively supported
by the Charity.
Raising Awareness
•
The use of social media continues
to prove effective in reaching out to
a much wider audience than just the
relatively small number of families
affected by Fanconi Anaemia.

Promoting Research • The Fanconi Hope-funded Long Term Effects of Fanconi Anaemia Study is a long term Registry project which now holds data on more than 60 patients in the UK. • 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 1 of a 3 year PhD programme of work. • 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. A significant meeting of European patient support group representatives was held in Madrid in Nov 22.

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:£ 38751
Expenditure: £ 59480
Deficit (£ 20,729)
Statement of Assets and Liabilities:
Accum reserves brought forward: £116688
Surplus for year: (£20729)
Total £94124
Consisting of:-
Fixed assets less depreciation: £2108
•
Current Account: £3344
•
Business Premium Account: £89511
•
Paypal: £97
•
Trustees expenses to be
reimbursed:(-£ 936)
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
(trust deed, royal charter)
Para 1.25		 Trust Deed
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
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		 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
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
•
Gene People
•
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 Anemia Research Fund 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 16 Andover Road, Southsea, PO4 9QG. Also via forwarding
to same address via PO Box 905 Southsea PO1 9JG

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

Declarations