2023-03-31-accounts

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(Charitable Incorporated Organisation)

Report and Financial Statements

Year ended: 31[st] March 2023

Charity number: 1176344

The Charlie Gard Foundation Year ended 31[st] March 2023

	Contents
Reference and Administrative Information		1
Trustees’ Annual Report		2
Report of the Independent Examiner		8
Statement of Financial Activities		9
Balance Sheet		10
Notes to the Financial Statements		11-21

Reference and administrative information

Trustees

Mrs S Roundsmith (Resigned on 21 December 2022) Mr C Da Silva Mr J Mendlesohn Mr J W Evers (Appointed on 21 December 2022)

Registered charity number : 1176344

Principal office

Commerce House 1 Exchange Square Middlesbrough Cleveland TS1 1DE

Independent Examiner

DJM Accountants 26 High Street Rickmansworth Hertfordshire WD3 1ER

Bank

The Co-operative Bank 80 Cornhill London EC3V 3NJ

The Charlie Gard Foundation

Trustees Annual Report

Welcome to the Charlie Gard Foundation

The Charlie Gard Foundation was set up in memory of baby Charlie Gard who sadly lost his battle with mitochondrial disease in July 2017. We are an independent charity dedicated to improving the lives of individuals and families living with a mitochondrial diagnosis, and funding research into viable treatments for this currently incurable disease.

Aims

Supporting individuals and families through the provision of services, items, grants and fundraising campaigns to help deliver a better quality of life for those suffering with a mitochondrial disease;
Ensuring those affected by mitochondrial disease can live fulfilling lives and make lasting memories despite their life-limiting condition;
Create further awareness of the disease through the advancement of public education through the dissemination of information;
Invest in pioneering research into viable treatments for mitochondrial diseases.

Report of the trustees for the year ended 31[st] March 2023

The trustees present their annual report and financial statements of the charity for the year ended 31[st] March 2023. The financial statements have been prepared in accordance with the accounting policies and comply with the charity’s governing document, the Companies Act 2006 and “Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102)” (as amended for accounting periods commencing from 1[st] January 2016).

Structure, governance and management

The Charlie Gard Foundation is a registered charity, number 1176344, and is constituted under a governing document dated 18[th] December 2017, as amended on 15[th] April 2020. The charity was established by an initial gift from Constance Yates and Christopher Gard in 2017 following the death of their beloved son, Charlie Matthew William Gard, from complications associated with mitochondrial disease.

New trustees are appointed by the existing trustees and serve for three years after which they may put themselves forward for re-appointment. The governing document provides for a minimum of three trustees, to a maximum of twelve trustees, with no more than three trustees due for re-appointment in any one year.

All major decisions are made by the board of trustees.

The Charlie Gard Foundation

Trustees Annual Report

Trustees are approached to join based on the following criteria and, after discussions, are invited to join the board:

Professional standing
Interest in the mitochondrial community
Cooperative and helpful nature
Complimentary skill set to other trustees

On appointment new trustees sign a model trustee declaration statement committing them to the giving of their time and expertise. New trustees receive a welcome pack including a brief history of the charity, a copy of the governing documents and a copy of the Charity Commission’s guidance The Essential Trustee: What You Need to Know .

All trustees give of their time freely and no trustee remuneration was paid in the year. Trustees are required to disclose all relevant interests and in accordance with the charity’s policy withdraw from decisions where a conflict of interest arises.

Risk management

The trustees have considered the major risks to which the charity is exposed and have reviewed those risks and established systems and procedures to manage those risks. The trustees continue to keep under review any major risks arising from, or impacting, on the activities of the charity.

Internal risks are minimised by authorisation procedures for projects and transactions to ensure consistently high-quality service delivery.

Significant risks are divided into a number of areas including:

Financial risk: income generation, business planning and budgeting to ensure longevity of the charity
Service provision: viability of research projects, and appropriate use of individual grant application funds
Personnel: employee health and well-being whilst working with challenging, emotional and demanding situations

The trustees are aware of the importance of developing a risk awareness culture within the charity and continue to work towards embedding this within the day-to-day working methods of both staff and volunteers.

Objectives and activities for the public benefit

The Charlie Gard Foundation helps meet the needs of families and individuals living with a mitochondrial disease to ensure a better quality – and more fulfilling and comfortable – life. We endeavour to overcome many of the barriers they face and help to promote quality and enjoyment of life. Everything we do contributes to that. Our vision is that families and individuals affected by mitochondrial disease have the same quality of life, opportunities and aspirations as other individuals and families.

The Charlie Gard Foundation

Trustees Annual Report

The Trustees have complied with the duty (set out in section 4 of the Charities Act 2006) to have due regard to public benefit guidance published by the Charity Commission.

The families make no payment for our services and no relevant individuals are excluded from our application procedures. The Charlie Gard Foundation continues to pursue its aspirations which relate to its vision of help for families and individuals affected by mitochondrial disease. These include:

sourcing sufficient funds to support a wider number of families and individuals;
provision of timely and practical advice by way of improving information for families and signposting families to other organisations;
expanding our work in delivering additional support to our current services list;
maintaining our efficiency through improvements in our service, systems and contract arrangements with suppliers.

The charity also supports pioneering research projects seeking viable treatments for mitochondrial diseases and has embarked on a promising new three-year research project that was extended to five years due to the Covid pandemic of 2020.

As a sub-objective of the charity, we are campaigning for a new Bill known as Charlie’s Law. This Bill will help mitochondrial sufferers, and others affected by conditions where treatment may be unavailable in the UK, to have more freedom of access to try treatments that are not readily available on the NHS. The right to accept professional and legitimate treatment for those suffering from a lifelimiting condition is something close to the core values of the charity, and we have had significant success with the first stages of the campaign, which will undoubtedly continue over the coming years as we campaign for change. We have more of an update on Charlie’s Law further into this report.

Grant-making policy

The trustees have established its grant making policy to achieve its objects for the public benefit to improve the lives of sufferers with mitochondrial disease. We review the grant making policy annually to ensure that it reflects the charity’s objects and thereby advances public benefit.

The beneficiaries of our grant-making programme are ultimately those who suffer from mitochondrial disease, but our grants also support research projects that look to find viable treatments for this currently incurable disease and to seek a permanent cure in the future. Mitochondrial diseases have been linked to a variety of other health conditions including Alzheimer’s, Parkinson’s, diabetes, cancers and dementia, to name a few, so our research could feasibly have a cross-over benefit for other illnesses and offer a wider benefit to the medical community.

Our grants are reviewed by the board of trustees and offered on a discretionary basis. If the amount exceeds our current grant policy cap, fundraising support is offered alongside a smaller grant. For those applying for grants from the charity we need to ensure that the grant will:

Result in lasting change;
Meet a family, or individual’s, needs;
Cannot be provided via the NHS or local authority.

Our grant-making procedures will be reviewed on an annual basis with the hope to relax caps and restrictions on the values of grants in the future.

The Charlie Gard Foundation

Trustees Annual Report

Challenges and Achievements

The Charlie Gard Foundation was established in 2017 and officially launched on June 1[st] 2018. The main priorities for the first official year were to better understand what needs are required for mitochondrial sufferers, how to create better awareness for the disease in the general public, and to ensure strategies and projects are put in place to secure longevity of the charity. We worked hard to create the best charitable platform to ensure we could accommodate any request from a family or individual affected by mitochondrial disease, and to also keep in sight the variety of ways in which we could create awareness of the charity, and create funds, to ensure the charity would grow and be sustainable for future years.

Grants and support

We continued to support the majority of our clients’ requests by supplying specialist medical equipment, treatment grants, physiotherapy services, household equipment, supporting fundraising campaigns for larger essential items, and a variety of memory making gifts for both families making memories, and those seeking comfort from bereavement gifts, too. We have continued to develop our healthy working relationships with a variety of charities and institutions, which allows us to continue to deliver a vast range of services ensuring that individuals and families receive the very best support for their specific concern or issue.

Awareness

To help with our awareness campaign to promote mitochondrial disease, Charlie’s parents, Connie and Chris, continue to make contributions to radio and newspapers with regards to discussing the charity but also to discuss progress and details for Charlie’s Law. We have spent the majority of our time building new relationships with businesses and institutions planning future projects and reaching out to let people know who we are and what we do.

Research

In 2019 we allocated £250,000 to fund research projects in the coming years that will help with potential treatment options for those who suffer from mitochondrial disease. This project could be invaluable to further advance research into better treatments for mitochondrial disease and we hope to secure funding for further research within the project area once the current project has concluded. It’s vitally important we find better treatments and ultimately a cure for mitochondrial diseases and we will assess our research projects on an annual review basis and seek to support other projects that fit within our charity values when such become available.

Charlie’s Law

The charity also supports a Bill that provides three key changes to improve existing legislation. This is known as Charlie’s Law and will:

Prevent cases reaching court

No one wants to see disagreements over the care of seriously ill children to be decided in the courts. The legislation helps prevent cases from reaching court by providing access to clinical ethics committees throughout NHS hospitals, access to medical mediation where there are differences of opinion, and speedy access to all medical records including raw data.

The Charlie Gard Foundation

Trustees Annual Report

Providing advice and support for families

Charlie’s Law helps parents get the support they need by providing for better access to advice on ethics and their rights, independent second opinions, and legal aid to ensure families do not face having to pay for costly legal representation and are not forced to rely on funding from outside interest groups.

Protect parental rights

Charlie’s Law will protect parental rights in these cases by restricting court involvement to cases where there is a risk of significant harm to the child.

Financial review

Financial position

The Charlie Gard Foundation received an initial donation from Connie Yates and Chris Gard of £1,196,490; monies raised from the Charlie’s Fight campaign in 2016/2017. The amount donated consisted of the balance raised from the campaign less the operational fees charged by GoFundMe, set up costs for the charity shop, and associated costs for the funeral of Charlie Gard.

Since inception further amounts of £80,919, £113,328, £77,841, 96,266 and £36,774 were received as donations in the financial periods ended 31[st] March 2019, 31[st] March 2020, 31[st] March 2021, 31[st] March 2022 and 31[st] March 2023 respectively. The total donations received at the end of this financial period were £1,601,618.

Plans for the future

We will continue to support our clients through emotional and financial support, through fundraising campaigns, by offering grants for items required to offer better quality of life, supply memory making initiatives to ensure precious family time is enjoyed and continue to connect relevant clients with consultants and institutions when seeking alternative advice and treatments beyond our remit.

Statement of Trustees’ Responsibility

The charity trustees are responsible for preparing a trustees' annual report and financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

Company law requires the charity trustees to prepare financial statements for each year which give a true and fair view of the state of affairs of the charitable company and the group and of the incoming resources and application of resources, including the income and expenditure, of the charitable group for that period. In preparing the financial statements, the trustees are required to:

select suitable accounting policies and then apply them consistently;
observe the methods and principles in the Charities SORP;
make judgements and estimates that are reasonable and prudent;
state whether applicable UK accounting standards have been followed, subject to any material departures disclosed and explained in the financial statements;
prepare the financial statements[ on the going concern basis unless it is inappropriate to ] presume that the charity will continue in business.

The Charlie Gard Foundation

Trustees Annual Report

The trustees are responsible for keeping adequate accounting records that are sufficient to show and explain the charitable company and the group's transactions and disclose with reasonable accuracy at any time the financial position of the charitable group and enable them to ensure that the financial statements comply with the Companies Act 2006. They are also responsible for safeguarding the assets of the charitable company and the group and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

Disclosure of information to independent examiners

Each of the persons who are trustees at the time when this trustees’ report is approved has confirmed that:

so far as that trustee is aware, there is no relevant accounting information of which the charitable group's independent examiners are unaware, and
that trustee has taken all the steps that ought to have been taken as a trustee in order to be aware of any relevant accounting information and to establish that the charitable group's independent examiners are aware of that information.

J W Evers Trustees Date: 01/06/2023

The Charlie Gard Foundation

Independent Examiner's Report to the trustees of The Charlie Gard Foundation

We report to the trustees on our examination of the accounts of The Charlie Gard Foundation for the year ended 31 March 2023.

Responsibilities and basis of report

As the charity trustees of The Charlie Gard Foundation you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 (‘the Act’).

We report in respect of my examination of the The Charlie Gard Foundation's accounts carried out under section 145 of the 2011 Act and in carrying out our examination we have followed all the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act.

Independent examiner’s statement

We have completed our examination. We confirm that no material matters have come to our attention in connection with the examination giving us cause to believe that in any material respect:

accounting records were not kept in respect of The Charlie Gard Foundation as required by section 130 of the Act; or
the accounts do not accord with those records; or
the accounts do not comply with the accounting requirements concerning the form and content of accounts set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a ‘true and fair view' which is not a matter considered as part of an independent examination.

We have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached.

DJM Accountants BLJ Limited

DJM Accountants BLJ Limited 26 High Street Rickmansworth WD3 1ER

1 June 2023

This page does not form part of the statutory financial statements. Page 8

The Charlie Gard Founda�on

Statement of Financial Ac�vi�es for the Year Ended 31 March 2023

	Unrestricted Restricted Total
	funds funds 2023
Note	£ £ £
Income and Endowments from:
Dona�ons and legacies	36,774 - 36,774
Total income
	36,774 - 36,774
Expenditure on:
Raising funds	(119,235) - (119,235)
Charitable ac�vi�es	(86,775) - (86,775)
Total expenditure
	(206,010) - (206,010)
Net expenditure
	(169,236) - (169,236)
Net movement in funds
	(169,236) - (169,236)
Reconcilia�on of funds
Total funds brought forward
	226,760 317,293 544,053
Total funds carried forward 13
	57,524 317,293 374,817
	Unrestricted Restricted Total
	funds funds 2022
Note	£ £ £
Income and Endowments from:
Dona�ons and legacies	96,266 - 96,266
Total income
	96,266 - 96,266
Expenditure on:
Raising funds	(144,063) - (144,063)
Charitable ac�vi�es	(117,765) - (117,765)
Total expenditure
	(261,828) - (261,828)
Net expenditure
	(165,562) - (165,562)
Net movement in funds
	(165,562) - (165,562)
Reconcilia�on of funds
Total funds brought forward
	392,322 317,293 709,615
Total funds carried forward 13
	226,760 317,293 544,053

The notes on pages 8 to 18 form an integral part of these financial statements. Page 9

The Charlie Gard Founda�on

(Registra�on number: 1176344) Balance Sheet as at 31 March 2023

	2023 2022
Note	£ £
Fixed assets

Tangible assets 8	973 1,297
Current assets

Debtors 9	3,671 -
Cash at bank and in hand 10	378,120 550,265
	381,791 550,265
Creditors: Amounts falling due within oneyear 11
	(7,947) (7,509)
Net currentassets
	373,844 542,756
Netassets
	374,817 544,053
Funds of the charity:
Restricted income funds

Restricted funds	317,293 317,293
Unrestricted income funds

Unrestricted funds	57,524 226,760
Total funds 13
	374,817 544,053

The financial statements on pages 5 to 18 were approved by the trustees, and authorised for issue on 01 June 2023 and signed on their behalf by:

J W Evers

Mr J W Evers Trustee

This page does not form part of the statutory financial statements. Page 10

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(Charitable Incorporated Organisation)

Reference and administrative information

Trustees

Registered charity number : 1176344

Independent Examiner

Bank

The Charlie Gard Foundation

Trustees Annual Report

Welcome to the Charlie Gard Foundation

Aims

Report of the trustees for the year ended 31[st] March 2023

Structure, governance and management

The Charlie Gard Foundation

Trustees Annual Report

Risk management

Objectives and activities for the public benefit

The Charlie Gard Foundation

Trustees Annual Report

Grant-making policy

The Charlie Gard Foundation

Trustees Annual Report

Challenges and Achievements

Grants and support

Awareness

Research

Charlie’s Law

Prevent cases reaching court

The Charlie Gard Foundation

Trustees Annual Report

Providing advice and support for families

Protect parental rights

Financial review

Financial position

Plans for the future

Statement of Trustees’ Responsibility

The Charlie Gard Foundation

Trustees Annual Report

Disclosure of information to independent examiners

The Charlie Gard Foundation

Independent Examiner's Report to the trustees of The Charlie Gard Foundation

Responsibilities and basis of report

Independent examiner’s statement

The Charlie Gard Founda�on

Statement of Financial Ac�vi�es for the Year Ended 31 March 2023

The Charlie Gard Founda�on

(Registra�on number: 1176344) Balance Sheet as at 31 March 2023

J W Evers

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