OpenCharities

This text was generated using OCR and may contain errors. Check the original PDF to see the document submitted to the regulator.

2020-12-31-accounts

Report and Financial statements Period Ended 31 December 2020 Charity Number 1158672

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

Contents

Page

2. Legal and administrative information

3. Summary

5. Founder’s Statement

6. Report of the Trustees

17. Report of the independent auditors

22. Statement of financial activities

24. Balance sheet

24. Cash Flow statement

25. Notes forming part of the financial statements

----- Start of picture text -----
oa 1
----- End of picture text -----

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

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. The Bankers are Barclays Bank PLC

    • 14 Upper Street Islington London N1 0PQ

  16. The Auditors are Haines Watts (City) LLP

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

2

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

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.

3

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

2020 Highlights

Fundraising Highlights

Project Highlights

----- Start of picture text -----
4
----- End of picture text -----

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

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.

2020 was an extremely challenging year, with the Covid 19 pandemic having a major impact both on fundraising and project progress. All in-person events were cancelled and we had to resort to raising awareness online and on virtual events such as BGC Charity Day which we participated in again. Despite Covid related delays the EB graft trial did start in France and we were able to make commitments to two new projects. We were extremely grateful for a large donation from Sir James and Lady Dyson which made a very substantial difference to income in 2020.

Sharmila Nikapota

Founder Trustee

5

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

Report of the Trustees

The Trustees present their report along with the financial statements of the charity for the period ended 31 December 2020.

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 2020 is as follows:

  4. 3.1. FUNDRAISING – Cure EB raised nearly £800k in 2020.

  5. 3.2. RESEARCH FUNDING – In 2020, Cure EB spent nearly £1m (excluding support costs) on research projects. Most of this (approximately £592k) was made by way of grant, but in 2020 Cure EB also supported research through programme related investments (approximately £307k) and (via Cure EB’s wholly owned subsidiary) a license agreement (approximately £92k).

  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.

  7. 3.4. RESEARCH COMMITMENTS AND RESULTS – Despite lab closures and therefore delays to projects, the most significant achievement was the EB graft trial starting in Paris. Mission EB, a stem cell treatment for all children in the UK with recessive dystrophic epidermolysis bullosa, received a substantial award from the NIHR with our collaboration and we expect children to be treated in 2021. The Colorado team were successful in obtaining a significant award from the NIH in the US with match-funding from ourselves and two US based charities. We also entered into two new agreements with Kings College London and a programme related investment in Fibrx Derm in the US

  8. 3.5. AWARENESS AND OTHER EVENTS – In January 2020 we were partners on EB2020, the inaugural EB World Congress event in London. There were 730 delegates, 215 organisations and participants from 50 countries. It was an opportunity to bring together the worlds experts to share and discuss global EB research. As partners we had a significant presence in all materials, a speaking slot in the programme, and a stall in the exhibition space where we were able

6

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

to highlight the research we are funding. As part of the congress we hosted a dinner at the House of Lords bringing researchers, biotech, representatives of other EB charities and major donor supporters together. There were speeches from Lord Redesdale, Professor McGrath and Sharmila. Feedback from the event was extremely positive. The pandemic hit very shortly after so events like our run had to be cancelled. We did have a bit of fun with the EBpop challenge in the summer raising awareness on social media channels. We were also lucky to be chosen again for BGC Charity Day with celebrity ambassadors Damian Lewis and Jodie Comer appearing for the charity. Whilst Sir James and Lady Dyson were not able to have an Opera event they nevertheless made a donation and in addition made a very substantial donation to us following a libel win which also generated publicity for the charity. The Big Give Christmas challenge ended the year, where we exceeded our target and also gained donations from new supporters as a result of being part of this large online event. Our committed supporters made all the difference in what was a very difficult year.

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 2020 were limited to:

  5. 5.1. Raising funds;

  6. 5.2. Raising awareness

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

7

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

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 Sharmila wrote and published a book (illustrated by Carolina Rabei) called 'Binky's Time to Fly' with a paragraph about EB at the back. 100% of the sales 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. We were pleased that this has now been published in a number of different languages. We were able to sell the book at EB2020, as well as on the website and we hope to able to use the book more when the pandemic impact allows in person events. Flyaway books in the US have released a US version and there have been online book readings as a result.

  2. We were partners on EB2020, the inaugural global EB research conference which generated significant awareness of the condition and the charity which was held in Jan 2020 in London. Around this event we hosted a dinner at the House of Lords bringing together researchers, biotech, research funding EB charities and major donors.

  3. Cure EB has an active social media presence with over 31,000 followers on Facebook and over 2,520 on twitter. We are continuing building our Instagram follower network with 1,389 followers. The Cure EB website continues to be an 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. We aim to improve and update this in 2021

  4. Our community outreach and awareness events had to be cancelled due to the pandemic after the first lockdown in March. As a result the Butterfly run and family day planned for September had to be cancelled, and we were unable to hold a speaker brunch club event. In September, we were chosen for BGC charity day which was attended virtually. We benefitted from a very generous donation in lieu of the Dodington Opera evening from the Sir James and Lady Deirdre Dyson Trust. Community fundraising was understandably curtailed due to the pandemic but we were lucky to have support from celebrations and through online giving. We had a Goldman Sachs Gives donation and were part of the Big Give Christmas Challenge. We had very substantial donations from the Sir James and Deirdre Dyson Trust and also the Maria Marina Foundation, The Roan Charitable Trust, The Reed Foundation, The

8

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

Grace Trust, The Sir James Roll Charitable Trust, The MDL 2 Trust, The Phoebe Research Fund, Walk the Talk Foundation and William Howarth Trust.

  1. Social Media continues to be an important tool to raise awareness of the condition and charity. We did play our social media campaign called #EBpop – “Play #EBpop to make the blisters stop” and challenging others to do the same though we were not able to get groups together due to Covid. Donations raised through this were much reduced and it was really a tool to try and raise awareness and bind the community together.

  2. Organised sponsorship events were all cancelled due to the pandemic. Sharmila started a marathon a month challenge around the Virtual London Marathon in an effort to raise funds

  3. Looking ahead, we anticipated that our biennial dinner would not be possible in May 2021 due to the pandemic and other events would be difficult to plan until restrictions were lifted. We continue to work at regular giving and online donations as well as text message giving.

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. 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. We had hoped to open a funding round but will progress this post pandemic.

  3. During 2020, despite the pandemic we saw the start of the EB graft trial. We also were able to continue existing projects and increase our portfolio of projects including translational research collaborations with the biotech industry.

  4. We have taken steps to aid clinical translation of projects through EBT, taking one license and concluding a research service agreement through the subsidiary

9

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

C. Achievements and Performance

  1. During 2020 the total research spend was nearly £1 million (including project related investments and licence fees). Details are set out in Notes 3 and 4 to the Financial Statements.

  2. Projects progressed and funded include the EBgraft trial, Next generation Sequencing in Minnesota, Gene editing in Madrid and UCL, Nanocol at Kings and projects at Stanford and Colorado.

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

  4. 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 2020 and as at 31 December 2020. The key figures, together with commentary, are as follows:

  2. 22.1. Gross Income: £796,938. This is lower than the amount raised in the prior period (as anticipated in our 2019 Report). The main reason for this was that we did not host our biennial Silver Butterfly Dinner (as these were held in 2017 and 2019). Covid 19 also impacted other revenue streams but a large donation from Sir James and Lady Dyson more than balanced out the Covid 19 effect.

  3. 22.2. Costs of Fundraising: £24,273. This is lower than the prior period as the Silver Butterfly Dinner is a significant source of cost (as well as income). As a rule of thumb, Cure EB aims to raise £10 for every £1 spent on fundraising activities. For 2020 this was comfortably exceeded.

  4. 22.3. Expenditure (on an accrual basis) on charitable activities (including support costs): £735,498. In addition, Cure EB supported research through programme related investments totalling about £307,204. Both of these figures are higher than the prior period and slightly ahead of expectation.

  5. 22.4. Reserves: £1,922,185. This is up on the prior period notwithstanding that expenditure exceeded income. This is because a substantial part of Cure EB’s support for projects was structured as (programme related) investments. Cash at year end was £1,802,922. This is down on the prior period but (1) in line with Cure EB’s medium-term plan that expenditure on projects should exceed income; and (2) leaves Cure EB in a financially secure position.

10

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

  1. Looking ahead to 2021:

  2. 23.1. Gross income is likely to be similar to or lower than 2020 largely due to (1) the continuing impact of Covid-19; and (2) the resulting cancellation of the planned 2021 Silver Butterfly Dinner. However, we anticipate that a combination of regular and substantial one-off donations will mean that Cure EB’s income will not be as badly affected as that of many other charities.

  3. 23.2. Cost of fundraising is also likely to be higher (as we resume fundraising activities) but lower than previously anticipated due to the cancellation of the Silver Butterfly Dinner.

  4. 23.3. It is currently too early to make an accurate projection of the likely expenditure on projects. However, Covid 19 has led to requests for no-cost extensions to a number of existing projects and a slow-down of new project flow. As a result, we anticipate reduced expenditure on projects in 2021.

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

  6. 24.1. Ms. Sharmila Nikapota

  7. 24.2. Mr. James Collins

  8. 24.3. Mr. Michael de Lathauwer

  9. 24.4. Ms. Tazim Hall

  10. 24.5. Prof. David Kelsell

  11. 24.6. Mr. Duncan Wales

  12. There were no other trustees during 2020. 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.

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

  14. Management and Administration:

  15. 27.1. 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.

11

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

12

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

  1. Professional Services:

  2. 28.1. James Collins in a commercial barrister and Tazim Hall was a solicitor and partner at a substantial international law firm. Cure EB buys in additional legal services as and when required.

  3. 28.2. Cure EB has not retained any investment advisor. However, Michael de Lathauwer comes from an investment banking background and is currently a fund manager.

  4. Remuneration:

  5. 29.1. The Trustees are not and were not compensated for their management roles (described above) nor for any other role that they perform.

  6. 29.2. Cure EB has no employees but has established relationships with a number of individuals and organisations that provide services on a contractor or selfemployed basis.

  7. 29.3. Cure EB has benefited from, and relies on, substantial support from a team of volunteers. In particular:

    • (1) The fundraising and awareness events are supported by a substantial team of engaged and dedicated volunteers. They provided assistance with the development of the event, attracting supporters to the event, graphic design, logistics and in many other ways. Without their support, many of these services would have to be bought in at considerable cost to Cure EB.

    • (2) The administration of Cure EB has been greatly assisted by volunteers, again saving Cure EB substantial cost.

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 2020 Cure EB made further Programme Related Investments. These 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.

13

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

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.

Reserves policy

Policy: Because the charity has a low cost operating base it does not require a significant unrestricted reserve fund.

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 2020 this risk was entirely mitigated by ensuring that reserves substantially exceeded commitments. Whilst the Trustees aim to maintain expenditure higher (on average) than income for the next few years, (1) substantial reserves will be retained; and (2) when reduced to a suitable level, the Trustees will seek to ensure that on average (but not each individual year) income and expenditure are balanced.

14

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

Covid 19

The Trustees acknowledge the current outbreak of Covid-19 (which is causing economic disruption in most countries) and its potentially adverse economic impact on the charity. This is an additional risk factor which could impact the operations of the charity after year end. Given the nature of the outbreak and the on-going developments, 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 closely and have the flexibility to amend future grant commitments for lower than anticipated income. We are focussed 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.

----- Start of picture text -----
30
B er
;
15
----- End of picture text -----

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

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:

[Gal] Sharmila Nikapota James Collins

[BO] Date: 30 December 2021 Date: 30 October 202129

16

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

Report of the Independent Auditors

Opinion

We have audited the consolidated financial statements and standalone charity balance sheet of Cure EB (the ‘parent’) and its subsidiaries (the ‘group’) for the year ended 31 December 2020 which comprise the Consolidated Statement of Financial Activities, the Consolidated Balance Sheet, Consolidated Cash Flow and the related notes. 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) including FRS 102.

This report is made solely to the charity’s Trustees, as a body, in accordance with section 144 of the Charities Act 2011 and the regulations made under section 154 of that Act. 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 auditor’s 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’s Trustees as a body, for our audit work, for this report, or for the opinions we have formed.

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 group 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

We have nothing to report in respect of the following matters in relation to which the ISAs (UK) require us to report to you where:

17

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

However, not all future events or conditions can be predicted. The COVID-19 viral pandemic is one of the most significant economic events for the UK with unprecedented levels of uncertainty of outcomes. It is therefore difficult to evaluate all of the potential implications on the Charities income and donations and wider economy. The Trustees' view on the impact of COVID-19 is disclosed in the accounting policies note.

Other information

The Trustees are responsible for the other information. The other information comprises the information in the Trustees' Report, but does not include the financial statements and our Auditors' Report thereon.

Scope of the audit of the financial statements

An audit involves obtaining evidence about the amounts and disclosures in the financial statements sufficient to give reasonable assurance that the financial statements are free from material misstatement, whether caused by fraud or error. This includes an assessment of: whether the accounting policies are appropriate to the company’s circumstances and have been consistently applied and adequately disclosed; the reasonableness of significant accounting estimates made by the trustees; and the overall presentation of the financial statements. In addition, we read all the financial and non-financial information in the Annual Report to identify material inconsistencies with the audited financial statements and to identify any information that is apparently materially incorrect based on, or materially inconsistent with, the knowledge acquired by us in the course of performing the audit. If we become aware of any apparent material misstatements or inconsistencies, we consider the implications for our report.

Matters on which we are required to report by exception

We have nothing to report in respect of the following matters in relation to which the Charities (Accounts and Reports) Regulations 2008 require us to report to you if, in our opinion:

18

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

Responsibilities of Trustees

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

In preparing the group 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

Auditors' responsibilities for the audit of the financial statements

We have been appointed as auditor 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 an Auditors' Report 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.

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:

19

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

We assessed the susceptibility of the charity's material misstatement, including obtaining an understanding of how fraud might occur by;

To address the risk of fraud through management bias and override of controls, we:

In response to the risk of irregularities and non-compliance with laws and regulations, we designed procedures which included, but were not limited to:

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 Auditors' Report.

20

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

Use of our report

This report is made solely to the Trustees, as a body. Our audit work has been undertaken so that we might state to the 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 its Trustees as a body, for our audit work, for this report, or for the opinions we have formed.

Namee

Haines Watts (City) LLP Statutory Auditor 69-73 Theobalds Road London WC1X 8TA

October 2021 293029

Haines Watts (City) LLP is eligible to act as an auditor in terms of section 1212 of the Companies Act 2006.

----- Start of picture text -----
21
----- End of picture text -----

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

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
3
Total
Net movement in funds
Transfer of funds
Funds brought forward
Funds carried forward		 2020
2020
2020
2019
£
£
£
£
Unrestricted Restricted
Total
Total
715,962
75,392
791,354
1,056,977
5,584
0
5,584
4,771
721,546
75,392
796,938
1,061,748
735,498
0
735,498
696,927
24,273
0
24,273
58,345
759,770
0
759,771
755,272
(38,225)
75,392
37,167
306,476
0
0
0
0
1,862,509
22,509
1,885,018
1,578,542
1,824,284
97,901
1,922,185
1,885,018

22

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

Balance Sheets

Group Group Charity Charity
Notes 2020 2019 2020 2019
£ £ £ £
Fixed Assets
Investments Investments
4		 402,928 95,724 403,028 95,824
Current assets
Cash at bank 1,802,922 1,945,796 1,730,335 1,945,796
Debtors – promissory loan 5 25,963 47,805 25,963 47,805
Other debtors- donations 105,927 90,089 183,931 90,089
receivable
1,934,812 2,083,690 1,940,299 2,083,690
Creditors
Amounts falling due within one 415,555 294,396 415,655 294,496
year- Project costs
Total net assets 1,922,185 1,885,018 1,927,602 1,885,018
Unrestricted Funds 171,988 152,752 171,988 152,752
Restricted Funds 6 97,901 97,901
22,509		 97,901 22,509
Designated funds 1,652,296 1,709,757 1,657,713 1,709,757
Total Funds 1,922,185 1 185 1,885,018 1,927,545 1,885,018

These Financial Statements were approved by the Trustees on October 2021 3029 ____ ___ BO Sharmila Nikapota Gale James Collins

23

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

Consolidated cash flow statement for the year ended 31 December 2020

Net cash inflow/(outflow) from operating
activities
(Increase)/Decrease in debtors
Increase/(Decrease) in creditors
Net cash inflow/(outflow) from
operations
Cash flow from investing activities
Fixed asset investment additions
Promissory loan repaid
Net cash (outflow) from investing
activities
Increase/(decrease) in cash at bank
Cash at the beginning of the year
Cash at the end of the year		 2020
£
2019
£
37,167
306,476
(15,838)
121,159
(31,133)
(103,271)
142,488
172,072
(307,204)
(95,724)
21,842
(47,805)
(285,362)
(143,529)
(142,874)
28,543
1,945,796
1,917,253
1,802,922
1,945,796

24

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

Notes to the financial statements

  1. Principal accounting policies

  2. (a) Accounting convention

  3. The consolidated financial statements are prepared under the historical cost convention and in preparing the financial statements the charity follows best practice as laid down in the Statement of Recommended Practice “Accounting and Reporting by Charities” SORP 2015. The charity presents its accounts under FRS 102.

Basis of consolidation - 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 2020. The results of the subsidiary is included in the statement of financial activities and inter group transactions are eliminated fully on consolidation.

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

25

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

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

  1. Designated funds are unrestricted funds designated by the Trustees for research projects in pursuit of the charitable activities.

3. Charitable activities

Research projects:
Next Gene Genome Sequencing (University of Minnesota)
Gene Editing Trial - Madrid
Colorado Gates
UCL Gene Editing
Kings College London - Nanocol
UCL Lenticol M
DEBRA - Lenticol F clinical trial
Constant Pharma
License fees
Support costs:
Admin costs
Governance costs
Bank charges (Net Refund from bank)
Audit
Events
Web hosting & Social Media consulting
Insurance
3.
Raising funds:
Fund raising & marketing
Web hosting
Fundraising admin costs		 2020
£
248,019
136,374
106,569
59,543
41,088
-
-
-
91,996
29,203
9,920
109
4,200
1,572
2,175
4,730
735,498
2020
£
16,371
1,009
6,893
24,273		 2019
£
270,515
-
102,978
133,977
-
47,670
65,550
47,805
-
17,520
7,912
-
3,000
-
-
-
696,927
2019
£
53,357
-
4,988
58,345

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

4.
Fixed Asset Investments – Held by group
Social Investments - unlisted
Cost at 1 January 2020
Additions
Cost at 31 December 2020
Fixed Asset Investments – Held by charity
Social Investments - unlisted
Cost at 1 January 2020
Additions
Cost at 31 December 2020
Shares in group undertakings
Held by charity
Cost at 1 January 2020
Cost at 31 December 2020
Net book value
At 31 December 2020		 2020
£
95,724
307,204
402,928
2020
£
95,724
307,204
402,928
2020
£
100
100
403,028		 2019
£
95,724
-
95,724
2019
£
95,724
-
95,724
2019
£
100
100
95,824

27

CURE EB (Formerly known as Sohana Research Fund, Charity number 1158672) Report and Financial Statements for the period ended 31 December 2020

The group or the company'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

In the year a social investment has been made of £92,282 €100,000 in Branca Bunus Limited, a company registered in Ireland, to further the aims of the charity by the funding of relevant research.

Also in the year a social investment has been made of £214,922 $275,000 in Fibrix Derm, Inc. a US company, to further the aims of the charity by the funding of relevant research.

5. Debtors

Included in debtors is a promissory loan of US$30,000 - £25,963 (2019: US$60,000 - £47,805) made in Constant Pharmaceuticals LLC, a US Corporation, at a coupon nil interest rate, in order to further the aims of the charity by the funding of relevant research.

Balance Income Expenditure Inter Balance
brought fund carried
6. Restricted fund forward transfer forward
balances
£ £ £ £ £
22,509 75,392 0 0 97,901

Restricted fund balance carried forward represents 3 research projects in progress and are held as cash balances.

Unrestricted and designated funds are held as bank balances, social investments and current assets.

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

  1. In the year capital and funds were provided of £170,000 to EB Therapeutics Ltd a subsidiary of Cure EB. In the year there were donations to the charity from the Trustees amounting to £115,000 (2019 - £207,200).

  2. There are no employees (2019 - none).

  3. There are no contingent liabilities.

28