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2022-12-31-accounts

Report and Financial statements Period Ended 31 December 2022 Charity Number 1158672

CURE EB (formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2022

Contents

Page

2. Legal and administrative information

3. Summary

5. Founder’s Statement

6. Report of the Trustees

16. Report of the Independent Auditors

20. Consolidated Statement of Financial Activities

21. Balance Sheets

22. Consolidated Cash Flow Statement

23. Notes forming part of the financial statements

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CURE EB (formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2022

Legal and Administrative Information

  1. The structural and administrative details for the charity are as follows:

  2. 1.1. Name: Cure EB (formerly known as Sohana Research Fund)

  3. 1.2. Type of entity: Charitable Incorporated Organisation

  4. 1.3. Date of incorporation: 25 September 2014

  5. 1.4. Registered Charity Number: 1158672

  6. 1.5. Governing document: Constitution

  7. 1.6. Registered and principal office: 10 Huntingdon Street, London, N1 1BU

  8. The trustees as at the date of this report (the “Trustees”) are:

  9. 2.1. Ms. Sharmila Nikapota

  10. 2.2. Mr. James Collins

  11. 2.3. Mr. Michael de Lathauwer

  12. 2.4. Ms. Tazim Hall

  13. 2.5. Prof. David Kelsell

  14. 2.6. Mr. Duncan Wales

  15. 2.7. Rachel Lesiter

  16. The Bankers are Barclays Bank PLC

    • 14 Upper Street Islington London N1 0PQ

  17. The Auditors are Haines Watts London LLP

New Derwent House, 69-73 Theobalds Road, London WC1X 8TA

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CURE EB (formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2022

Summary

Our Mission Statement

Our mission is to find effective treatments and ultimately a cure for Epidermolysis Bullosa (“EB”).

Our Commitments

To fund translational research and clinical trials for the benefit of people with EB. To maximise research spend. To raise awareness of EB.

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CURE EB (formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2022

2022 Highlights

Fundraising Highlights

Project Highlights

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CURE EB (formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2022

Founder’s Statement

Epidermolysis Bullosa (“EB”) is a group of genetic skin blistering conditions that vary in severity depending on the subtype. Some forms are fatal in infancy and others lead to progressive deformity and are severely life limiting. Recessive Dystrophic Epidermolysis Bullosa (“RDEB”) is a very severe form that leads to scarring, contractures, oesophageal restriction, corneal abrasions, malignant skin cancer and many more painful and life- altering symptoms.

Cure EB exists to find treatments and a cure for EB. To this end, we fund predominantly translational medical research aiming to deliver quality-of-life changing relief and eventually a cure to those afflicted by EB.

2022 started well with a successful Silver Butterfly Dinner at RIBA. We were also thrilled to get back to hosting our Butterfly Run and Family Day at the Olympic Park after a Covid related break since 2019. We were lucky to be chosen for BGC Charity Day, with Patron Damian Lewis attending on our behalf. Projects suffered delays due to the pandemic, but we were able to commit to new projects. We were thrilled to be successful with a BBC Radio 4 Appeal application with a transmission date in early 2023. We are pleased with progress towards translation of two of our projects and are encouraged by biotech interest in the EB space. We are extremely grateful for the commitment of many of our donors who have helped us over many years.

Sharmila Nikapota Founder Trustee

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CURE EB (formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2022

Report of the Trustees

The Trustees present their report along with the financial statements of the charity for the period ended 31 December 2022.

A. Introduction

  1. Cure EB – then known as the Sohana Research Fund C.I.O. (“SRF”) – was established on 25 September 2014 with Registered Charity Number 1158672.

  2. Cure EB’s principal purpose is to fund medical research and clinical trials aimed at discovering, developing and delivering treatments for Epidermolysis Bullosa (“EB”).

  3. Key information for 2022 is as follows:

  4. 3.1. FUNDRAISING – Cure EB raised over £1 million in 2022.

  5. 3.2. RESEARCH FUNDING – In 2022, Cure EB spent £947k (excluding support costs) on research projects. £859k of this was made by way of grant, and £88k for a license agreement via Cure EB’s wholly owned subsidiary, EB Therapeutics.

  6. 3.3. EB THERAPEUTICS LTD – In 2020, Cure EB’s wholly owned subsidiary, EB Therapeutics Ltd (“EBT’) concluded 2 agreements: (1) a license agreement related to one of the projects that Cure EB has been supporting; and (2) a research services agreement, for the testing of experimental compounds for the systemic treatment of EB. During 2022, work on the project to which the license relates is ongoing and the research services agreement is generating very good results.

  7. 3.4. RESEARCH COMMITMENTS AND RESULTS – Work on the EB graft trial in Paris is continuing. A gene editing project linked to this work completed its preclinical phase. Mission EB, a stem cell treatment for all children in the UK with recessive dystrophic EB continued at Great Ormond Street Hospital. This was funded with a substantial award from the NIHR with our collaboration. We also entered into two new agreements. One with Kings College London on a base editing project and one at Jefferson University in the United States for an RDEB skin cancer trial. The Nanocol project at Kings College London and Minnesota started its final year as did the Gene therapy for airway disease project at Great Ormond Street Hospital. Projects in France and Spain progressed satisfactorily. We have had less involvement in projects in the United States this year as our substantial work around Gene Editing at the University of Minnesota has paused. Work in Colorado is ongoing from existing contributions.

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CURE EB (formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2022

We were extremely lucky to be the chosen charity for the Dodington Opera evening hosted by Sir James and Lady Dyson in June. We also held our Butterfly Run and Family Day for the first time since the pandemic at the Olympic Park. Both events were very well attended. Professor John McGrath from Kings College, Professor Andy South from Jefferson University in the US and Dr Gabriela Petrof from Great Ormond Street Hospital and the Great Ormond Street Nurses came to speak at family day.

We were very lucky to be chosen again for BGC Charity Day which was held in October, and we were enormously grateful to Patron Damian Lewis for attending again on our behalf.

Sharmila spoke at the British Society for gene and Cell Therapy webinar in November which was well attended. We met our Big Give challenge match funding campaign target in late November and December and ended the first year in public since the pandemic with positivity.

B. Objectives and Activities

  1. As set out in Cure EB’s Constitution, Cure EB’s objects are “For the public benefit, (a) the advancement of health and (b) the relief and assistance of people in need who are suffering from Epidermolysis Bullosa, in particular but not exclusively by making grants:

  2. (1) to fund medical research and/or clinical trials anywhere in the world for the purpose of discovering, developing and delivering treatments for Epidermolysis Bullosa; and

  3. (2) to fund the treatment of patients who are suffering from Epidermolysis Bullosa”

  4. Cure EB’s objectives during 2022 were limited to:

  5. 5.1. Raising funds;

  6. 5.2. Raising awareness;

  7. 5.3. Identifying and developing projects for funding; and

  8. 5.4. Funding of projects.

  9. The Trustees confirm that in determining what activities Cure EB carries out, they have had regard to the Charity Commission’s guidance on public benefit.

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CURE EB (formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2022

B(1) Fundraising and Awareness

  1. As a rare genetic skin condition public knowledge of the condition is limited. This impacts Cure EB’s ability to raise money for research and support. Consequently, we see increased awareness of the condition as something that has a direct influence on our ability to raise funds. As an aid to raising awareness we are developing a game which will have information on EB and the charity. Our book 'Binky's Time to Fly' is now available in six different languages and has a paragraph about EB at the back. All of the sales proceeds of the exclusive hardback edition benefit the charity and all author royalties from the paperback editions (which are controlled by the publisher) are donated to the charity. Flyaway books in the US have released a US version and French publisher Elcy have recently released a French version.

  2. We had a very successful Silver Butterfly Dinner at RIBA in May raising over £366,000 which connected us to longstanding and new supporters for the first time since the pandemic.

  3. We did not have a good year in print media but continue to build our social media platforms and engagement with the public. Cure EB has an active social media presence with over 30,000 followers on Facebook and approximately 2,500 on twitter. We continue to build our Instagram follower network with 1,585 followers and are working to increase our presence on LinkedIn. The Cure EB website continues to be a very important tool when fundraising and educating the public as to our aims and ambitions. It holds all information regarding projects and press as well as event information. Our recent updates have been very well received and we strive to keep it up to date.

  4. Our main community outreach and awareness event, the Butterfly Run and Family Day took place in September 2022. We were chosen for BGC charity day which was attended in person with beneficiaries attending. We had four very successful marathon runners raising £25,000 and other sporting challenges included a Windermere swim £5,229, Hall Triathlon team at Blenheim £46,859, Thames paddleboarders £12,063, golf days, dance academy performance, charity lunches, Arnold House charity Day £5,661, Art sales and in memorium and office fundraising events. We received a substantial Goldman Sachs Gives donation and were part of the Big Give Christmas which raised over £36,000. We had substantial donations from the Sir James and Deirdre Dyson Trust, BGC, The Reed Foundation, The MDL 2 Trust and Maria Marina Foundation. We also had donations from Lloyds Football Club, The Sir James Roll Charitable Trust, Frank Litchfield Charitable Trust, CML Family Foundation, PwC Foundation, the Michael and Anna Wix Charitable Trust, The Mimosa Trust, Eastern Baptist Association, Glovers Integrated Healthcare. We were also happy to have sponsorship from Krystal Bio, Polymem, Constant Therapeutics and Flenn Health for our Run and Family Day and a grant from Amryt Pharma for Family Day. We continue to work at regular giving through our Kaleidoscope scheme and online donations as well as text message giving but there is work to be done to increase these streams.

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CURE EB (formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2022

B(2) Projects

  1. Cure EB funds a range of projects. However, Cure EB’s principal focus is on translational research – i.e. the preclinical research and clinical trials that will (we hope) translate fundamental (laboratory based) research into effective treatments for RDEB. We are assisted by an experienced independent expert panel who evaluate projects and advise on research strategies and priorities.

  2. We currently evaluate projects on a rolling basis (rather than in formal funding rounds at fixed intervals) and invite applications that meet our priority areas of research. An initial outline of the project is evaluated and if deemed to be within an area of interest a full grant application is asked for. The project is then externally reviewed and scored by a scientific advisory panel (SAP), whose members are world leading scientific experts in medical related research. That external review process is coordinated by one of our Trustees, Professor David Kelsell, who is himself an expert in human skin genetics and part of the SAP. If the scores are sufficiently high the project is presented to the Trustees for approval. If approved, Cure EB negotiates and concludes formal funding agreements with the body that is to carry out the research.

  3. During 2021, researchers from Great Ormond Street Hospital and Children’s Charity (GOSH) began the largest ever stem cell clinical trial for children with EB. The study, in collaboration with clinicians from Birmingham’s Children’s Hospital, aims to treat 36 children who have Recessive Dystrophic EB (RDEB) – one of the most severe forms of the condition – with infusions of stem cells derived from umbilical cord tissue. It is hoped these infusions will reduce pain and inflammation for months at a time. The trial has been made possible thanks to over £4.5 million in funding from the National Institute for Health Research (NIHR) in partnership with NHS England and NHS Improvement as well as a grant from Cure EB. The University of Sheffield Clinical Trials Research Unit (CTRU) has been overseeing the study and working closely with the GOSH research team over the past 3 years. This trial is ongoing.

  4. During 2022, we saw continuation of work on the EB graft trial and conclusion of the preclinical work on a project linked to this. We were able to continue existing projects and increase our portfolio of projects taking on a cancer trial and base editing project. We are continuing clinical translation of projects through EBT.

C. Achievements and Performance

  1. During 2022 the total research spend was more than £947k (including project related investments and license fees). Details are set out in Notes 3 and 4 to the Financial Statements.

  2. Projects progressed and funded include the EBGraft trial, Gene editing in Madrid and UCL, Nanocol and the Butler project at Great Ormond Street. Our collaboration on Mission EB started with the first child being dose at the end of 2021 which was ongoing in 2022. We also committed to new projects at Kings on base editing and Jefferson for an RDEB skin cancer trial.

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CURE EB (formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2022

  1. Looking ahead, our aim is to continue our focus on translational research. We will also continue looking at emerging technologies to determine translational benefit.

  2. To this end we aim to continue to carry on building our relationships with other potential funders and investors and with the RDEB research community.

D. Financial Review

  1. The accounts show the financial affairs of Cure EB for 2022. The key figures, together with commentary, are as follows:

  2. 19.1. Gross Income: £1,000,863. This was (as expected) down on 2021 due the impact of a very large donation from the IGY Foundation in that year. Fundraising continued to be challenging in 2022, but the Trustee were satisfied with the total achieved.

  3. 19.2. Costs of Fundraising: £89,015. Expenditure was higher than the prior period largely due to the cost of the biennial Butterfly Dinner. As a rule of thumb, Cure EB aims to raise £10 for every £1 spent on fundraising activities. For 2022 this was exceeded.

  4. 19.3. Expenditure on charitable activities (including support costs) was a little higher than the previous year at £1,033,130. This was in line with our aim to increase research funding.

  5. 19.4. Reserves at year end were £2,507,444; and cash at year end was £2,779,430. During 2021 Cure EB started to build a development fund to take specific projects from the laboratory into trial. The IGY Foundation donation helped to kick-start this. For that reason both of these figures are substantially higher than 2020 and remain high in 2022.

  6. Looking ahead to 2023:

  7. 20.1. Gross income is likely to be lower than 2022 largely due to the fact that it is not a Butterfly Dinner year. However, we anticipate that a combination of regular and substantial one-off donations will mean that 2023 income will be roughly in line with 2020.

  8. 20.2. Cost of fundraising is also likely to be lower, as the Butterfly Dinner is a source of cost as well as revenue.

  9. 20.3. It is currently too early to make an accurate projection of the likely expenditure on projects. A number of promising projects are being reviewed, but it is not yet clear how many of those will be approved and contracted before year-end.

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CURE EB (formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2022

  1. The trustees as at the date of this report (the “Trustees”) are:

  2. 21.1. Ms. Sharmila Nikapota

  3. 21.2. Mr. James Collins

  4. 21.3. Mr. Michael de Lathauwer

  5. 21.4. Ms. Tazim Hall

  6. 21.5. Prof. David Kelsell

  7. 21.6. Mr. Duncan Wales

  8. 21.7. Ms. Rachel Lesiter

  9. There were no other Trustees during 2022. These Trustees may be reappointed at the expiry of their current terms and/or further trustees may be appointed by resolution passed at a properly convened meeting of the trustees. Pursuant to the terms of the Constitution, the minimum number of trustees is 3 and the maximum is 9. The Trustees are selected for their experience and expertise.

  10. The Trustees are not and were not compensated for performing their roles as trustees.

  11. Management and Administration:

  12. 24.1. Management of Cure EB’s fundraising and awareness activities has been delegated (subject to a financial cap) to Sharmila Nikapota and James Collins. They in turn report to the other Trustees. In particular:

    • (1) Sharmila Nikapota has primary responsibility for conceiving, developing and performing all fundraising and awareness activities. This includes the identification of suitable contractors to provide goods or services and negotiation with those contractors.

    • (2) Costs of goods and services are approved by, and payment is arranged by, James Collins or Rachel Lesiter.

    • (3) Sharmila Nikapota and James Collins are authorised to jointly incur costs of up to £10,000 per month in relation to fundraising and awareness activities without further authorisation from the Trustees. For major events, Sharmila Nikapota and James Collins must seek the prior approval of the Trustees.

  13. 24.2. Management of the administration of Cure EB has been delegated (subject to a financial cap) to Sharmila Nikapota and James Collins, assisted (very substantially) by Rachel Lesiter. They in turn report to the other Trustees. In particular:

    • (1) Sharmila Nikapota, James Collins are Rachel Lesiter are primarily responsible for identifying the services that need to be performed and finding suitable

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CURE EB (formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2022

contractors to assist with the provision of those services.

25. Professional Services:

26. Remuneration:

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CURE EB (formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2022

Investment policy

Funds are held as short-term bank balances and (if and when rates justify it) longer term treasury deposits. The only other investments made by Cure EB are Programme Related Investments (rather than financial investments).

Programme Related Investments

In 2022 Cure EB made no further Programme Related Investments. These investments are payments made to further the aims of the charity – i.e. to advance research – rather than to secure a financial return. However, because they are structured as investments there is potential for return.

EB Therapeutics

At the end of 2018, Cure EB established a subsidiary: EB Therapeutics Ltd (“EBT”). The purpose of this subsidiary is to further develop some of the technologies supported by Cure EB with the aim of assisting with the transition from research to market, so that effective treatments become as widely available as possible. EBT was dormant until 2020. During 2020 it (1) took a license of IP related to one of the projects that Cure EB is supporting; and (2) concluded a research service agreement for a new project. During 2021 this new project generated encouraging laboratory results. This continued through 2022, with the focus shifting (1) to the identification of the best compounds to progress towards an in-human trials; and (2) (for some compounds) from in-vitro to early in-vivo testing.

Reserves policy

Policy: Because the charity has a low-cost operating base it does not require a significant unrestricted reserve fund to meet its operating costs. However, Cure EB aims to maintain and build a substantial restricted reserve fund to meet the cost of future projects. This is for two reasons. First, Cure EB wants to be able to fund the best projects irrespective of its income in any particular year (which will fluctuate for reasons beyond its control). Second, Cure EB is building a development fund to meet the anticipated cost of taking one project down the (very expensive) path towards in-human trials.

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CURE EB (formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2022

Forward looking statement: The Trustees are confident that there are adequate reserves to fund the research to be undertaken and cover the anticipated future costs.

Risk management

The principal risk to the charity is the ability to continue to raise funds sufficient to meet the commitments made to fund projects and operating costs.

The Trustees have (above) highlighted the facts relevant to this risk. During 2022 this risk was entirely mitigated by ensuring that reserves substantially exceeded commitments.

Whilst the Trustees expenditure will exceed income in certain years, the Trustees intend (1) to retain substantial reserves (for the reasons given above); and (2) only commit to projects where Cure EB (i) already has sufficient funding for the project; or (ii) is confident that funds will be raised well in advance of any payment dates falling due.

Ukraine and Cost of Living

The Trustees acknowledge the war in Ukraine and the cost of living challenges in the UK and the potentially adverse economic impact on the charity of all of these. These are additional risk factors which could impact the operations of the charity after year end. There is a high degree of uncertainty and it may have a significant impact on the way in which we operate. The Trustees are monitoring developments and have the flexibility to amend future commitments for lower than anticipated income. We are focused on protecting the long-term strategy of the charity to enable it to meet forthcoming commitments.

Public Benefit

The Trustees are conscious of the Charity Commission guidelines on public benefit and these guidelines are applied when grants are considered.

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CURE EB (formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2022

Trustees’ Responsibilities in relation to the financial statement

The Trustees are responsible for preparing the Trustees Annual Report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

Law applicable to charities in England and Wales requires the Trustees to prepare financial statements for each financial year which give a true and fair view of the charity's financial activities during the year and of its financial position at the end of the year. In preparing those financial statements, the Trustees are required to:

The Trustees are responsible for keeping accounting records which disclose with reasonable accuracy at any time the financial position of the charity and enable them to ensure that the financial statements comply with the Charities Act 2011. They are also responsible for safeguarding the assets of the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

Approved by the Trustees and signed on their behalf by:

Sharmila

Sharmila (Oct 31, 2023 11:08 GMT)

Sharmila Nikapota

James Collins

Date 31 October 2023

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CURE EB (formerly known as Sohana Research Fund, Charity number 1158672)

Report and Financial Statements for the period ended 31 December 2022

Report of the Independent Auditors to the Trustees of Cure EB

Opinion

We have audited the financial statements of Cure EB (the 'charity') for the year ended 31 December 2022 which comprise the Consolidated Statement of Financial Activities, the Consolidated and Charity Balance Sheet, the Consolidated Cash Flow Statement and notes to the financial statements, including a summary of significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

In our opinion the financial statements:

Basis for opinion

We conducted our audit in accordance with International Standards on Auditing (UK) (ISAs (UK)) and applicable law. Our responsibilities under those standards are further described in the Auditors' responsibilities for the audit of the financial statements section of our report. We are independent of the charity in accordance with the ethical requirements that are relevant to our audit of the financial statements in the UK, including the FRC's Ethical Standard, and we have fulfilled our other ethical responsibilities in accordance with these requirements. We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our opinion.

Conclusions relating to going concern

In auditing the financial statements, we have concluded that the trustees' use of the going concern basis of accounting in the preparation of the financial statements is appropriate.

Based on the work we have performed, we have not identified any material uncertainties relating to events or conditions that, individually or collectively, may cast significant doubt on the charity's ability to continue as a going concern for a period of at least twelve months from when the financial statements are authorised for issue.

Our responsibilities and the responsibilities of the trustees with respect to going concern are described in the relevant sections of this report.

Other information

The trustees are responsible for the other information. The other information comprises the information included in the Annual Report, other than the financial statements and our Report of the Independent Auditors thereon.

Our opinion on the financial statements does not cover the other information and, except to the extent

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CURE EB (formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2022

otherwise explicitly stated in our report, we do not express any form of assurance conclusion thereon.

In connection with our audit of the financial statements, our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements or our knowledge obtained in the audit or otherwise appears to be materially misstated. If we identify such material inconsistencies or apparent material misstatements, we are required to determine whether this gives rise to a material misstatement in the financial statements themselves. If, based on the work we have performed, we conclude that there is a material misstatement of this other information, we are required to report that fact. We have nothing to report in this regard.

Matters on which we are required to report by exception

We have nothing to report in respect of the following matters where the Charities (Accounts and Reports) Regulations

2008 requires us to report to you if, in our opinion:

Responsibilities of trustees

As explained more fully in the Statement of Trustees' Responsibilities, the trustees are responsible for the preparation of the financial statements which give a true and fair view, and for such internal control as the trustees determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error.

In preparing the financial statements, the trustees are responsible for assessing the charity's ability to continue as a going concern, disclosing, as applicable, matters related to going concern and using the going concern basis of accounting unless the trustees either intend to liquidate the charity or to cease operations, or have no realistic alternative but to do so.

Our responsibilities for the audit of the financial statements

We have been appointed as auditors under Section 144 of the Charities Act 2011 and report in accordance with the Act and relevant regulations made or having effect thereunder.

Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue a Report of the Independent Auditors that includes our opinion. Reasonable assurance is a high level of assurance, but is not a guarantee that an audit conducted in accordance with ISAs (UK) will always detect a material misstatement when it exists.

Misstatements can arise from fraud or error and are considered material if, individually or in the aggregate, they could reasonably be expected to influence the economic decisions of users taken on the basis of these financial statements.

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CURE EB (formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2022

Irregularities, including fraud, are instances of non-compliance with laws and regulations. We design procedures in line with our responsibilities, outlined above, to detect material misstatements in respect of irregularities, including fraud.

The extent to which our procedures are capable of detecting irregularities, including fraud is detailed below:

We gained an understanding of the legal and regulatory framework applicable to the charity and the industry in which it operates, and considered the risk of acts by the charity that were contrary to applicable laws and regulations, including fraud. We discussed with the trustees the policies and procedures in place regarding compliance with laws and regulations. We discussed amongst the audit team the identified laws and regulations, and remained alert to any indications of non-compliance.

During the audit we focused on laws and regulations which could reasonably be expected to give rise to a material misstatement in the financial statements, including, but not limited to, the Charities Act 2011 and UK tax legislation. Our tests included agreeing the financial statement disclosures to underlying supporting documentation and enquiries with management.

Our procedures in relation to fraud included but were not limited to: inquires of management whether they have any knowledge of any actual, suspected or alleged fraud, and discussions amongst the audit team regarding risk of fraud such as opportunities for fraudulent manipulation of financial statements. We determined that the principal risks related to posting manual journal entries to manipulate financial performance and management bias through judgements in accounting estimates. We also addressed the risk of management override of internal controls, including testing journals and evaluating whether there was evidence of bias by the directors that represented a risk of material misstatement due to fraud.

Because of the inherent limitations of an audit, there is a risk that we will not detect all irregularities, including those leading to a material misstatement in the financial statements or non-compliance with regulation. This risk increases the more that compliance with a law or regulation is removed from the events and transactions reflected in the financial statements, as we will be less likely to become aware of instances of non-compliance. The risk is also greater regarding irregularities occurring due to fraud rather than error, as fraud involves intentional concealment, forgery, collusion, omission or misrepresentation.

A further description of our responsibilities for the audit of the financial statements is located on the Financial Reporting Council's website at www.frc.org.uk/auditorsresponsibilities. This description forms part of our Report of the Independent Auditors.

Eligibility for appointment as auditor

Haines Watts London LLP is eligible for appointment as auditor of the charity by virtue of its eligibility for appointment as auditor of a company under section 1212 of the Companies Act 2006.

Use of our report

This report is made solely to the charity's trustees, as a body, in accordance with Part 4 of the Charities (Accounts and Reports) Regulations 2008. Our audit work has been undertaken so that we might state to the charity's trustees those matters we are required to state to them in an auditors' report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the charity and the charity's trustees as a body, for our audit work, for this report, or for the opinions we have formed.

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CURE EB (formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2022

Jane Wills FCCA (Senior Statutory Auditor)

For and on behalf of Haines Watts London LLP Statutory Auditor New Derwent House 69-73 Theobalds Road London WC1X 8TA 31 October 2023 Date: .............................................

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Cure EB (formerly known as Sohana Research Fund (Charity number 1158672) Report and Financial Statements for the year ended 31 December 2022

Consolidated Statement of Financial Activities Incorporating Income and Expenditure account

Note
Income
Income from donations
2
Income from investments
Total
Expenditure
Charitable activities
3
Raising funds
4
Total
Net movement in funds
Transfer of funds
8
Funds brought forward
Funds carried forward		 2022
2022
2022
2021
£
£
£
£
Unrestricted Restricted
Total
Total
182,000
818,852
1,000,852
1,565,378
-
11
11
2
182,000
818,863
1,000,863
1,565,380
90,205
942,925
1,033,130
820,811
82,591
6,424
89,015
38,028
172,796
949,349
1,122,145
858,839
9,204
(130,486)
(121,282)
706,541
(2,281,980)
2,281,980
-
-
2,472,499
156,227
2,628,726
1,922,185
199,723
2,307,721
2,507,444
2,628,726

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Cure EB formerly Sohana Research Fund (Charity number 1158672) Report and Financial Statements for the year ended 31 December 2022

Balance Sheets

Notes
Fixed Assets
Investments
5
Current assets
Cash at bank
Other debtors
6
Creditors
Amounts falling due within one year-
Project costs
7
Total net assets
Unrestricted Funds
8
Restricted Funds
8
Designated funds
8
Total Funds		 Group
Charity
2022
2021
2022
2021
£
£
£
£
428,891
428,891
428,991
428,991
2,800,640
2,249,515
2,779,430
2,236,332
190,210
119,694
211,420
132,877
2,990,850 2,369,209
2,990,850
2,369,209
912,297
169,374
912,397
169,474
199,723
428,496
203,721
428,496
2,307,721
156,227
2,303,723
156,227
-
2,044,003
-
2,044,003
2,507,444
2,628,726
2,507,444
2,628,726

These Financial Statements were approved by the Trustees on 31 October 2023 and were signed on its behalf by:

Sharmila Sharmila (Oct 31, 2023 11:08 GMT)

____ ___ Sharmila Nikapota James Collins

21

Cure EB formerly Sohana Research Fund (Charity number 1158672) Report and Financial Statements for the year ended 31 December 2022

Consolidated cash flow statement for the year ended 31 December 2022 Consolidated cash flow statement for the year ended 31 December 2022 Consolidated cash flow statement for the year ended 31 December 2022
2022 2021
£ £
Net cash inflow/(outflow) from operating
activities (121,282) 706,541
(Increase)/decrease in debtors (70,516) (13,767)
(Decrease)/Increase in creditors 742,923 (246,181)
Net cash inflow from operations 551,225 446,593
Cash flow from investing activities
Fixed asset investment additions - -
Net cash (outflow) from investing
activities - -
Increase/(decrease) in cash at bank 551,125 446,593
Cash at the beginning of the
year 2,249,515 1,802,922
Cash at the end of the year
2,800,640 2,249,515

22

Cure EB formerly Sohana Research Fund (Charity number 1158672) Report and Financial Statements for the year ended 31 December 2022

Notes to the financial statements

  1. Principal accounting policies

  2. (a) Accounting convention

  3. The financial statements of the charity, which is a public benefit entity under FRS 102, have been prepared in accordance with the Charities SORP (FRS 102) '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) (effective 1 January 2019)', Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland' and the Charities Act 2011. The financial statements have been prepared under the historical cost convention.

Cure EB meets the definition of a public benefit entity under FRS 102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy note(s).

The financial statements consolidate the results of the charity and its wholly owned subsidiary EB Therapeutic Ltd on a line-by-line basis. A separate Statement of Financial Activities and Income and Expenditure Account for the charity has not been presented because it has taken advantage of the exemption afforded by section 408 of the Companies Act 2006.

The consolidated statement of financial activities, balance sheet and cash flow include the financial statements of the charity and its subsidiary undertaking made up to 31 December 2021. The results of the subsidiary is included in the statement of financial activities and inter group transactions are eliminated fully on consolidation.

The Charity has taken advantage of exemption, under the terms of Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland', not to disclose related party transactions with wholly owned subsidiaries within the group.

Due to EB Therapeutics Ltd current activities and how it is funded, the consolidated statement of charitable financial activities and the consolidated cash flow statement are materially the same as the individual parent charity’s statement of financial activities and individual cash flow statement.

The investments are held at cost less impairment as the fair value cannot be reliably measured. The trustees are not aware of any material impairments in the investments.

Donation and grant Income

Expenditure is included on an accruals basis.

23

Cure EB formerly Sohana Research Fund (Charity number 1158672) Report and Financial Statements for the year ended 31 December 2022

(f) Taxation

The charity is exempt from tax on its charitable activities.

(g) Fixed asset investments

Fixed asset investments are held to generate income, for their investment potential, and/or for their research potential.

Investments include ‘social investments’ where the purpose in making the investment is wholly or partly to further the charity’s aims. The social investments are stated at cost less impairment unless it can be measured at fair value which can be reliably measured.

The investment in a subsidiary company is held at cost less accumulated impairment losses.

The restricted funds represent donations made where the donor has placed a restriction on the use of the funds. Unrestricted funds can be used as the Trustees see fit in line with the charitable objectives.

(i) Going concern

The accounts are prepared on the basis that the Trustees have adequate resources to continue to operate. The Trustees have informally discussed expected future cash flows and the future expected incoming and outgoing resources in making their assessment for a period of at least 12 months from the signing of the accounts. Based on these assessments the Trustees have concluded that they can continue to adopt the going concern basis in preparing the annual report and accounts.

(j) Financial instruments

Basic financial instruments such as social investments, debtors, bank balances and creditors are recognised at transaction value.

2. Donations

All incoming resources related to general donations from individuals and other institutions. There was no legacy income in the year.

24

Cure EB formerly Sohana Research Fund (Charity number 1158672) Report and Financial Statements for the year ended 31 December 2022

3. Charitable activities

Research projects:
University of Minnesota - Nanocol
Universidad Carlos III de Madrid - Gene Editing Trial
UCL Gene Editing
Kings College London - Nanocol
Kings College London – Base Editing of RDEB fibroblasts
Great Ormond Street - Mission EB
Stanford University - EB IPS Cell Consortium
Oligo
EB Graft
Debra UK – Gene therapy
Thomas Jefferson - Rigosertib
St Thomas' Hospital, London - Rigosertib
Support costs:
Admin costs
Governance costs
Bank charges
Audit
Web hosting & Social Media consulting
Insurance
Professional fees
4.
Raising funds
Fund raising & marketing
Web hosting
Fundraising admin costs		 2022
£
82,986
27,137
17,908
82,176
208,414
-
-
139,911
77,489
32,481
151,285
127,279
57,085
9,300
147
12,308
2,331
2,661
2,233
1,033,130
2022
£
62,170
752
26,093
89,015		 2021
£
113,424
105,996
35,566
-
-
150,000
194,752
100,000
65,030
-
-
-
36,927
8,729
2,079
4,800
1,740
-
1,768
820,811
2021
£
21,898
580
15,550
38,028

25

Cure EB formerly Sohana Research Fund (Charity number 1158672) Report and Financial Statements for the year ended 31 December 2022

  1. Fixed Asset Investments – Held by group & charity
2022 2021
£ £
Social Investments - unlisted
Cost at 1 January 2022 428,891 402,928
Additions/transfers - 25,963
Cost at 31 December 2022 428,891 428,891
Net book value
At 31 December 2022 428,891
428,891
Shares in group undertakings
Held by charity
2022 2021
£ £
Cost at 1 January 2022 100 100
Cost at 31 December 2022 100 100
Net book value
At 31 December 2022 100 100
The group or the charity's investments at the Balance Sheet date in the share capital of
companies include the following:
Subsidiaries
EB Therapeutics Ltd
Registered office : England & Wales
Nature of business: Furthering research for human health
%
Class of shares holding
Ordinary 100.00

The group or the charity's investments at the Balance Sheet date in the share capital of companies include the following:

Social investments are made to fund companies who undertake research that further the aims of the charity. Material social investments have been made in Phoenicis Therapeutics, Inc., a US Corporation and Branca Bunus Limited, a company registered in Ireland.

6. Debtors

Group Charity
2022 2021 2022 2021
£ £ £ £
Other debtors 190,210 119,694 221,420 132,877
Other debtors are donations receivable and gift aid receivable on donations received and
receivable during the year.
  1. Creditors

26

Cure EB formerly Sohana Research Fund (Charity number 1158672) Report and Financial Statements for the year ended 31 December 2022

Accruals
Unpaid share capital
Committed grant
payments
8.
Fund balances
Balance brought
forward
Income
Expenditure
Inter fund transfer
Balance carried
forward
Represented by
Fixed assets
Cash at bank
Other net
assets/liabilities
Funds for fundraiser
EB family day
EB Graft Trial
Nanocol
Gene Editing
Restricted research		 Group
Charity
2022
2021
2022
2021
£
£
£
£
12,662
6,050
12,662
6,050
-
-
100
100
899,635
163,324
899,635
163,324
912,297
169,374
912,397
169,474
Unrestricted
Funds
Restricted
Funds
Designated
funds
Total
£
£
£
£
428,496
156,227
2,044,003
2,628,726
182,000
818,863
-
1,000,863
(172,796)
(949,349)
-
(1,122,145)
(237,977)
2,281,980
(2,044,003)
-
199,723
2,307,721
-
2,507,444
-
428,891
-
428,891
181,385
2,619,255
-
2,800,640
18,338
(740,425)
-
(722,087)
199,723
2,307,721
-
2,507,444
Brought
forward
Reallocation
Income
Expenditure
Balance
carried
forward
7,400
-
-
(1,200)
6,200
-
-
5,000
(5,000)
-
63,967
-
-
(63,967)
-
20,500
-
-
(20,500)
-
64,360
-
51,994
(116,354)
-
-
2,281,980
761,869
(742,328)
2,301,521		 Group
Charity
2022
2021
2022
2021
£
£
£
£
12,662
6,050
12,662
6,050
-
-
100
100
899,635
163,324
899,635
163,324
156,227
2,281,980
818,863
(949,349)
2,307,721

Historically the Board recognised donations without implicit terms as unrestricted donations, but allocated all donations not from trustees to the designated fund, so as to ensure sufficient funds were being allocated to further the Charity’s aims. Similarly, a portion of the grants made were allocated against the designated fund. This process was reassessed in the year. As the Charity publish that all donations received will be used to further it’s aims, it was decided that these donations (i.e. all donations other than from trustees) would be better represented as restricted. As such a transfer was undertaken to align to the new policy in the year.

27

Cure EB formerly Sohana Research Fund (Charity number 1158672) Report and Financial Statements for the year ended 31 December 2022

  1. Related party disclosures and trustees’ remuneration and benefits

No Trustees received remuneration or were reimbursed for expenses in the period.

During the year the charity introduced £100,000 of support to its subsidiary EB Therapeutics Ltd.

In the year there were donations to the charity from the Trustees amounting to £259,000 (2021 - £203,000).

  1. Staff costs

There was one part-time employee (2021 - one).

No staff received emoluments in excess of £60,000.

  1. Contingent liabilities and capital commitments

The trustees are not aware of any contingent liabilities or capital commitments.

  1. Subsequent events

The trustees are not aware of any material adjusting or non-adjusting post balance sheet events.

28