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2022-04-30-accounts

FANCONI HOPE

Independent Examiner’s Report to the Trustees of Fanconi Hope

For the year ended 30 April 2022

I report on the accounts of the charity for the year ended 30 April 2022, 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.

Rachel Hall R S Hall and Co 27 Belle Meade Close Woodgate Chichester West Sussex PO20 3YD

Date: 26 February 2023

Registered Charity number 1126894

FANCONI HOPE

STATEMENT OF ACCOUNTS

FOR THE YEAR ENDED 30 APRIL 2022

FANCONI HOPE

INCOME AND EXPENDITURE ACCOUNT

FOR THE YEAR ENDED 30 APRIL 2022

2021
26,154.11
0.00
846.26
64.80
27,065.17
0.00
0.00
15,257.00
300.00
15,557.00
0.00
479.99
331.20
0.00
811.19
516.48
1,195.57
0.00
5.00
0.00
151.78
42.91
0.00
1,626.10
300.00
3,837.84
20,206.03
6,859.14		 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		 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)
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)
2022
(11,128.25)

6

FANCONI HOPE

STATEMENT OF ASSETS AND LIABILITIES

FOR THE YEAR ENDED 30 APRIL 2022

2021
119,170.23
Accumulated reserves brought forward
6,859.14
Surplus / deficit for the year
126,029.37
Represented by:
Fixed assets:
500.00
Gazebo
6,880.53
IT equipment - grant funded
750.00
Projector - grant funded
0.00
Laptop
(4,878.30)
Less depreciation (20% on cost)
3,252.23
3,185.79
Current Account
120,116.58
Business Premium Account
558.14
Paypal
(Creditor)/Debtor - Trustees expenses
(1,083.37)
to be re-imbursed
0.00
Mischarged expenses - reimbursed 19/02/2023
126,029.37		 2022
126,029.37
(11,128.25)
114,901.12
500.00
6,880.53
750.00
799.99
(6,664.40)
2,266.12
8,296.89
104,129.69
1,105.05
(936.49)
39.86
114,901.12

7

DONATIONS FUNDRAISINGPAYPAL GRANTS

20.00 47.92 72.76 500.00 14.02 27.52 41.75 4.75 20.00 28.50 356.06 1,855.00 105.67 271.87 4.75 80.90 20.00 300.00 130.19 232.19 77.35 4.75 30.00 20.00 156.56 36.35 136.98 63.95 20.00 116.72 79.53 4.75 11.87 367.84 20.00 1,202.91 731.67 134.10

96.10
836.53
334.34
4.75
57.32
179.26
20.00
97.30
150.00
25.63
96.10
114.81
25.00
20.00
45.76
7.12
48.00
2,173.20
66.00
18.00
1.90
615.00
96.10
90.63
5.94
4.75
7.12
28.50
20.00
32.58
1.90
4.45
200.00
65.18 2500
4.75
51.55
20.00
14.24
261.74
1.90
22.62
2,104.48
141.30
4.75
382.22
20.00
331.24
500.00
52,237.84 996.80
30.00
142.46
1,253.28
118.25
20.90
50.17
28.20
214.82
37.59
64.10
4.75
2,554.44
148.68
5,090.90
876.53
25.00
1,439.99
918.08
95.80
797.12
200.16
242.58
50.00
25.00
4.75
414.10
110.41
77.67
173.93
30.85
293.03
18.52
86.55
4.75
30,718.20
2,721.20
0.00
2,500.00

BANK RECONCILIATION

CURRENT ACCOUNT

Opening balance
Add receipts
Less payments
Balance per statement
Less o/s payments
DEPOSIT ACCOUNT
Opening balance
Add receipts
Interest
Donations
Transfers
Transfer to current account
Balance per statement
Less o/s payments		 3,185.79
52,237.84
-47,126.74
8,296.89
8,296.89
8,296.89
120,116.58
13.11
-16,000.00
104,129.69
120,116.58
120,116.58
47126.74 0.00
96.76
47223.5
accounts 46185.17
bal sheet 839.85
bob 176.87
47201.89
TRANSFER DONATIONS
100
8.84
20
0.32
1
1
343.91
1
1
1
1
50
30
51.6
1
20
1.25
10.75
643.67
51.60
592.07		 digital
ONLINE
FUNDRAISING SUPPORT
FAMILY SUPPORT
trust
TRANSFERS GIVING
CHARGES
6.25
1.6
1.25
0.48
21.5
5.01
0.05
0.21
0.05
0.21
0.06
0.21
3.13
0.9
1.88
0.62
0.06
0.21
1
0.48
51.6
96.76
0.00
0.00
51.60
0.00
35.23
9.93
Opening balance
Add receipts
Less payments		 558.14
643.67
(96.76)
1,105.05
887.83

Trustees’ Annual Report for the period

From 1 May 2021 To 30 April 2022

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:
Due to COVID, a planned
Conference weekend had to be
postponed yet again. A social
weekend, in conjunction with our
Dutch counterpart organisation, is
however being scheduled for the
summer of 2022 for adults with
Fanconi Anaemia.
Fundraising Activities:
•
Families, friends and colleagues
continue to contribute to the
fundraising effort, actively supported
by the Charity. An unrestricted grant
of £2500 was received from the
Jeans for Genes organisation.
•
We have applied for a very
significant National Lottery Grant in
collaboration with 6 other small
charities called the Together for
Healthy Marrow Alliance and are
very confident of success.
Raising Awareness 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% of the known 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

Additional information (optional) You may choose to include further statements where relevant about:

Achievements against
objectives set		 Para 1.41 Regular briefings provided for our
community, who have been severely
affected by COVID-19 due to restricted
access to medical care and the attendant
risks of immunosuppression affecting many
of them.
Greater reach and access to expertise
achieved through both UK and worldwide
collaborations.
Performance of fundraising
activities against objectives
set		 Para 1.41 Our ambitious target of £100K to fund a
Proton Therapy Research Project was
achieved in 20/21, as predicted, and the
project is now under way.
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:£ 36843.02
Expenditure: £ 47971.27
Surplus (£ 11128.25)
Statement of Assets and Liabilities:
Accum reserves brought forward:
£126029.37
Surplus for year: (£ 11128.25)
Total £114901.12
Consisting of:-
Fixed assets less depreciation: £2266.12
•
Current Account: £8296.89
•
Business Premium Account:
£104129.69
•
Paypal: £1105.05
•
Trustees expenses to be
reimbursed:(£ -896.63)
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

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) Office (if any) Dates acted if not for whole
**year **		 Dates acted if not for whole
**year **		 Name of person (or body) entitled
to appoint trustee (ifany)
Mr Robert
Dalgleish		 Chairman Board of Trustees
Mrs Louise Parry 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 Nigel J Jones 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 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

N/A