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:
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examine the accounts under section 145 of the Charities Act,
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to follow the procedures laid down in the general Directions given by the Charity Commission
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(under section 145 (5)(b) of the 2011 Act, and
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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
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which gives me reasonable cause to believe that in, any material respect, the requirements:
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to keep accounting records in accordance with section 130 of the Charities Act; and
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• to prepare accounts which accord with the accounting records and comply with the accounting requirements of the Charities Act
have not been met ; or
- 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