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2020-12-31-accounts

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Registered charity in England & Wales (1136809) and in Scotland (SC046735) Registered in England & Wales Company number: 07278507

Reverse Rett

Report and financial statements for the year ended 31 December 2020

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Reverse Rett Trusteesí Annual Report For the year ended 31[st] December 2020

Reference and Administrative details for the year ended 31[st] December 2020

Company number 07278507 Charity number 1136809 (England & Wales) and SC046735 (Scotland)

Registered office and operational address:

Statham Link Suite 1F Lancastrian Office Centre Talbot Road Old Trafford Manchester M32 0FP

Trustee/Trustees, who are also directors under company law, who served during the year and up to the date of this report were as follows:

John Sharpe Chair Helen Simmonds Vice-Chair Rachael Stevenson Andrew J Stevenson Monica Coenraads resigned 08.11.20 Ortensia Martinotti Catherine McKinney Kate McMaster Rita Ross Neil Buckley Joanna Snyder Mwangala Lishomwa joined 04.05.21

*Trustees who are also Directors of the charitable company. The number of guarantee members is 11.

Key management Rachael Stevenson CEO

Bankers Barclays Bank Leicester LE87 2BB

Independent auditors Slade & Cooper Limited, Beehive Mill, Jersey St, Manchester, M4 6JG

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Reverse Rett Trusteesí Annual Report For the year ended 31[st] December 2020

The trustees present their report and the audited financial statements for the year ended 31 December 2020. Included within the trusteesí report is the directorsí report as required by company law.

Reference and administrative information set out on page 1 forms part of this report. The financial statements comply with current statutory requirements, the memorandum and articles of association and the Statement of Recommended Practice - Accounting and Reporting by Charities: SORP applicable to charities preparing their accounts in accordance with FRS 102.

Objectives and activities Mission

Reverse Rett is a patient advocacy and research organisation focused on delivering treatments and a cure for Rett Syndrome to everyone affected.

Objects as set out in the charityís governing document

Reverse Rett exists to relieve sickness and to preserve health for the public benefit by developing treatments and cures for Rett Syndrome and related MECP2 disorders , in particular but not exclusively by:

Main activities undertaken in relation to objects

Children and adults with Rett Syndrome are at the heart of everything we do in line with our mission to deliver treatments and a cure to everyone affected.

Four vital pillars underpin our work:

1. Research

We fund research projects that will lead to better outcomes for children and adults with Rett Syndrome both now and in the future.

2. Advocacy

We advocate for access to treatments and therapies for all affected patients.

3. Outreach

We increase public awareness and knowledge of Rett Syndrome and related MECP2 disorders so that we can register and contact affected patients who may benefit from emerging treatments.

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Reverse Rett Trusteesí Annual Report For the year ended 31[st] December 2020

4. Clinical care

We improve clinical care and outcomes for complex UK children and adults with Rett Syndrome whilst disseminating research and clinical best practice information to improve management of all those affected.

Public benefit

The trustees review the aims, objectives, and activities of the charity each year. This report looks at what the charity has achieved and the outcomes of its work in the reporting period. The trustees report the success of each key activity and the benefits the charity has brought to those groups of people that it is set up to help. The review also helps the trustees ensure the charity's aims, objectives and activities remained focused on its stated purposes.

The trustees have referred to the guidance contained in the Charity Commission's general guidance on public benefit when reviewing the charity's aims and objectives and in planning its future activities. In particular, the trustees consider how planned activities will contribute to the aims and objectives that have been set.

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Reverse Rett Trusteesí Annual Report For the year ended 31[st] December 2020

Activities and projects

1. CIPP Rett Centre, Kingís College London, £311,137

In 2019, after comprehensive external peer review, Reverse Rett committed to funding the UKís first specialist Rett Syndrome clinical treatment and research Centre based in London for a period of three years.

The CIPP Rett Centre (formerly CPMRS) was established by Professor Santosh at the Maudsley Hospital and Kingís College London.

The CIPP Rett Centre is the worldís first Centre for personalized medicine in Rett Syndrome that focuses on developing digital health strategies to monitor and manage patients whilst conducting translational research using the HealthTracker platform, providing holistic specialist care and conducting clinical trials.

Reverse Rett has committed to providing core funding to the CIPP Rett Centre at a cost of £998,000 over three years from September 2019-September 2022.

In 2020: Funds delivered to CIPP Rett Centre totaled: £311,137

2. CIPP Rett Database £12,000

£12,000 is the pro rata sum (2020) for the software license for the HealthTracker platform. The HealthTracker is an online digital platform, tailored for patients with Rett Syndrome through which families and caregivers can report the patientís symptoms on an ongoing basis.

Data are then analysed on an individual level, to check for changes in the presentation of symptoms and to alert local clinical teams and on a group level, to assess patterns in presentation across the disease group or sub-groups, elucidating wider learning within the field.

3. MECP2 Duplication Syndrome (MDS) research funding via the Rett Syndrome Research Trust (USA)

Reverse Rett funds MECP2 Duplication research through our longstanding partnership with the US based, Rett Syndrome Research Trust (RSRT).

In 2020: Funds delivered to RSRT MECP2 Duplication projects totaled £25,625

4. Contributions to the international research program at the Rett Syndrome Research Trust (USA)

Reverse Rett funds laboratory research through our longstanding partnership with the US based RSRT. Contributions to RSRT lab research were drastically impacted by the impact of the Covid pandemic on charity fundraising.

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Reverse Rett Trusteesí Annual Report For the year ended 31[st] December 2020

In 2020: Funds delivered to the RSRT international research program totaled £445. These funds were gifted to Reverse Rett by the French organisation, OpÈ Rett, with respect to RSRT programs in progress at the University of Edinburgh.

5. Clinical trial expenses £11,247

In 2020 we provided on-going support for the UK clinical trial of Cannabidiol sponsored by GW Pharmaceuticals and new support for Anavex for their clinical trial of Anavex 2-73. Reverse Rett provided identification, recruitment and retention services to support both trials. The Clinical trial expenses detailed on p 27 are the costs for patient travel, accommodation, and meal allowances for study visits. These funds were provided to the charity in advance of the study visits and deployed and accounted for accordingly with reports sent back to the sponsors on a quarterly basis.

6. Rett Disorders Alliance £0

Reverse Rett holds the fund for the Rett Disorders Alliance. In 2018, a grant of £5000 was received from the Bolland Charitable Trust by Reverse Rett and designated to the Rett Disorders Alliance fund.

These funds were used for the production and printing of the Health Checklist so that it could be distributed to families and clinicians across the UK as needed.

In 2020: No RDA funds were spent in 2020 and the fund balance is £3,211.

7. Parent 2 Parent program £1050.54

Reverse Rett is a patient advocacy and research organisation and does not formally provide support services to families of patients with Rett Syndrome. The Parent 2 Parent Project was founded in 2012 with support from Roald Dahls Marvelous Childrenís Charity, to facilitate connections between parent mentors and newly diagnosed families/those in need of additional support.

In 2019, in order to draw new mentors into the program, we held two Discovery Days to enable like-minded families to come together to support and learn from each other. Both meetings were well attended with over 70 participants in London and Edinburgh respectively.

In 2020, two more Discovery Days were planned in Oxford and Warrington. Both had to be cancelled due to the pandemic.

£1050.54 funded an online app which enabled us to switch these in person events to digital events.

In 2020 : £1050.54 was spent on switching in person events to digital format so that Discovery Days could go on.

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Reverse Rett Trusteesí Annual Report For the year ended 31[st] December 2020

8. Governance costs £5640

All charities registered in England and Wales with an income over £500,000 are mandated to have an annual independent audit. These governance costs represent the cost of our 2019 audit and related accountancy services.

9. Support costs (note 7, p 28) £147,914

In 2020, support costs included the above governance costs, office rental, general office costs including phone, internet, printing and postage and staff costs of £95,143.

Staff costs listed here are for CEO (FT), Clinical Trial Lead, (0.5 FTE) Patient Registry Co-ordinator, Finance Officer and Office Administrator/Clinical Trial Co-ordinator.

Staff costs under fundraising costs include: Fundraising Manager (0.5 FTE), Events and Campaigns Co-ordinator (0.5 FTE)

Achievements and performance

The charity's main activities and who it tries to help are described below. All its charitable activities focus on delivering treatments and a cure for Rett Syndrome and are undertaken to further Reverse Rettís charitable purposes for the public benefit.

The main achievements of the charity

Reverse Rett has been at the forefront of UK Rett Syndrome laboratory and clinical research funding for more than a decade. The timeline below shows key milestones demonstrating progress in the field since the reversal experiments of 2007 and the work of Reverse Rett which was launched in 2010.

Over the last ten years, Reverse Rett has been tightly focused on research funding. Change is now within reach. Three human gene therapy clinical trials are firmly on the horizon and as an organisation, we need to do more.

Our first principle is equality; that all patients with Rett Syndrome regardless of age or gender, should have access to emerging treatments and cures.

As well as continuing to fund clinical and laboratory research, we continue to seek out and register as many UK patients as possible, wherever they are, so that we can reach them when treatments which will improve their lives become viable. We are doing this in a few ways, through increased provision of health information, through the Rett Connect program and more. We continue to work in support of UK clinical trials of emerging treatments. Reverse Rett provides core funding to the CIPP Rett Centre, which manages the health the most complex Rett patients in the country, extrapolating and disseminating learnings which can improve the health and quality of life of Rett patients of all ages, internationally.

We are proud of our past achievements and positive about the future unfolding before us.

Below, you can see a timeline of key milestones that show progress in the field since the reversal experiments of 2007 and in the work of Reverse Rett which was launched in 2010.

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Reverse Rett Trusteesí Annual Report For the year ended 31[st] December 2020

Organisational Achievements

2010

2011

2012

2013

2014

2015

2016

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Reverse Rett Trusteesí Annual Report For the year ended 31[st] December 2020

2017

2018

2019

2020

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Reverse Rett Trusteesí Annual Report For the year ended 31[st] December 2020

Beneficiaries of our services

The beneficiaries of our services are children and adults with Rett Syndrome and related disorders. Improvements in the symptoms of Rett Syndrome can have far-reaching effects, beyond the individual patient.

There are over 50 reported symptoms of Rett Syndrome; in particular, autonomic disturbances cause significant disruption in the lives of patients and the families who care for them. Amelioration of symptoms such as sleep difficulties, agitation, breathing problems and anxiety can have a significant impact on the lives of patients and families, increasing stress and isolation and impacting the health and well-being of other family members as well as the patient.

At Reverse Rett, we work to enable patients to access emerging treatments through clinical trials as soon as these treatments become available.

Reverse Rett has also been instrumental in facilitating the delivery of UK clinical trials through our work in improving UK clinical provision for patients with Rett, the development of a UK Rett Syndrome Patient Registry, our recruitment, pre-screening and retention support for clinical trials and in 2019, the commitment to fund the CIPP Rett Centre (formerly CPMRS), the UKís first national clinical treatment and research centre for Rett Syndrome based at Kingís College Hospital.

The CIPP Rett Database which monitors the condition of patients with Rett Syndrome of all ages and stages, all around the UK, gathering anonymized data about disease progression and burden on patients and families which will be an integral component of driving emerging treatments through the regulatory processes.

Both the patient-centred and digital aspects of the work of the CIPP Rett Centre simultaneously generate learning about disease progression and management that is helping patients today, before treatments and a cure become available.

Ultimately, a treatment focused on repairing the underlying cause of the disorder (a lack of mecp2 protein) is needed to significantly reduce or reverse several existing symptoms. Gene therapy trials coming to fruition in 2021-2022, are happening as a direct result of work which Reverse Rett has heavily financially supported over the last decade.

Only time will tell, if and how these gene therapies will be safe and effectively a ëcureí in children and adults with Rett Syndrome. It may be that those who are able to access cures earlier in life recover most effectively. At Reverse Rett, our mission now goes beyond our original goal of curing Rett Syndrome. We need to focus also on enabling access to these emerging therapies for patients with Rett Syndrome of all ages and to ensuring that no one is left behind, when treatments that can drastically improve lives become possible.

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Reverse Rett Trusteesí Annual Report For the year ended 31[st] December 2020

The Board of Trustees of Reverse Rett would like to thank the following companies, community groups, trusts and individuals who generously supported our work in 2020:

Amanda Adams Jim Amos Archerfield Estate Derek and Jenny Bird S J Bradbury Mark Ross Neil and Kate Buckley Kerry Burroughs Savills Christopher Cant Caterpillar Cares Society Charities Trust Elisabeth Christopher Cleeve Vale Rotary Club Jorge Conde Core Marketing Cure for Dylan Keki Dadiseth Martin Darby Mary Davidson Elly Douglas-Hamilton DT Impact and Influence Flowers by Enchantment ℅ Neil Buckley Stephanie Zinser David Ford Sean Forde Friends of Holly Colin Gordon Greenergy HG Capital HR_Inspire Tim Jones KDW Financial Planning Barnaby Lashbrooke David Lashbrooke Danielle Ledger Chris Lowe Masonic Charitable Foundation Masons Internet Lodge 9659 Mersey Valley Golf Country club committee Masonic Charitable Foundation Patricia McCall Scott and Kate McMaster Muchloved Murphy-Neumann Charity Company Limited Nicky McBurney Charity Bootcamp Kate Noble Northern Ireland Electricity service charities committee

Peter OíGrady Peter Meyer Trust Kelly Phillips Gillian Prett Mark Ross Rita and Gavin Ross Savills John and Maureen Sharpe Clive Sheridan Matt Smith Anthony and Joanna Snyder David H Starbuck St Michael & All Angels Church Charlie Talbot Thrill Collins Thomas McMaster and Son LTD Gillian Tree Myfanwy Tree McKay Williamson Alvin and Stephanie Wood

From Grants and trusts The Pears Foundation Mrs F B Laurance Charitable Trust The Munro Foundation The Patrick & Helena Frost Foundation The Sumray Trust The Sylvia Aitken Charitable Trust

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Reverse Rett Trusteesí Annual Report For the year ended 31[st] December 2020

The Board of Trustees would like to take this opportunity to acknowledge the significant contribution of individuals, companies and community groups who have raised funds for Reverse Rett via online giving facilities such as Just Giving, the Big Give Christmas Challenge and the Reverse Rett Covid Resilience Fund in 2020.

Financial review

2020 was a difficult year for Reverse Rett. Income dropped by 27% compared to 2019 due to the Pandemic and sharp decrease in fundraising events and activities.

Funds which had been set in reserve for 2020 payments to the newly funded CIPP Rett Centre (formerly CPMRS) kept the charity afloat. This meant that we did not have an immediate cashflow problem when the pandemic struck, however, it also meant that we had to restrict any additional research payments over and above the CIPP Rett Centre until the situation stabilized re fundraising.

Here are some examples of the dramatic income changes:

There are no uncertainties about the charityís ability to continue as a going concern.

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Reverse Rett Trusteesí Annual Report For the year ended 31[st] December 2020

Reserves policy

Reverse Rett is a parent-driven, patient organisation. Children and adults with Rett Syndrome are at the heart of everything we do. The relentless nature of the condition demands that they should be able to access treatments and cures as quickly as possible.

Funds raised and donated are typically deployed to research projects on a quarterly basis. In 2020, the charity held a greater sum in reserve and reduced contributions to the international research program at RSRT because of the ongoing unpredictability of the fundraising situation during the pandemic and the commitment of £998,000 over three years made to CIPP Rett Centre in September 2019. The charity holds a minimum of 6 months running costs as free reserve. Total funds held at year end was £430,954 of which £85,430 was restricted.

As the fundraising situation continues to stabilize, contributions to the international research program at RSRT have cautiously resumed.

Plans for the future

A Reverse Rett Annual Plan is developed every autumn for the following year. During 2020, the initial annual plan, developed pre- pandemic, was revised in March 2020 to adjust to the evolving situation with Covid.

That plan remained dynamic and was readjusted several times during the year due to new developments which affected in person fundraising capacity.

A plan for 2021 written in autumn of 2020 had to be revised several times due to more changes.

In early 2021, the Reverse Rett Board of Trustees set to work to develop a new long-term strategy for the organisation. The strategy document is entitled ëChange is within Reach,í the Reverse Rett Strategy 2021-2026.

This longer-term plan feeds into the current dynamic annual plan and provides helpful longer-term perspective.

In 2021, Reverse Rett is focused on:

Research:

Continuing to financially support and monitor the CIPP Rett Centre and CIPP Rett Database. Building international research contributions to RSRT to pre-pandemic levels. Providing recruitment and retention services for on-going and new clinical trials.

Advocacy:

Providing medical information and resources to families shielding vulnerable family members during the crisis.

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Reverse Rett Trusteesí Annual Report For the year ended 31[st] December 2020

Outreach:

Increasing general public awareness and knowledge of Rett Syndrome and MECP2 Duplication Syndrome so that we are able to register and contact affected patients who many benefit from emerging treatments.

Directly seeking out under-represented groups and unidentified children and adults with Rett Syndrome for the same reason.

Clinical care:

Improving clinical care and outcomes for complex UK children and adults with Rett Syndrome whilst disseminating research and clinical best practice information to improve medical management of everyone affected.

Structure, governance and management

Reverse Rett is a company limited by guarantee, company number 07278507 incorporated on 9[th] June 2010. The company was established under a Memorandum of Association which established the objects and powers of the charitable company and is governed under its articles of association.

Reverse Rett is a charity registered in England and Wales, charity number 1136809 and a charity registered in Scotland, charity number SC046735.

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Reverse Rett Trusteesí Annual Report For the year ended 31[st] December 2020

The first Trustees are those persons notified to Companies House as the first Directors of the Charity. The Charity may by ordinary resolution, appoint a person who is willing to act as a Director and determine the length of rotation in which any additional directors are to retire.

Rachael Stevenson and Andrew Stevenson were involved in the founding of the Charity and remain Trustees to date.

The management of the company is the responsibility of the Trustees who are elected and coopted under the terms of the Articles of Association.

The trustees are members of the charity, but this entitles them only to voting rights. The trustees have no beneficial interest in the charity.

Members of the charity guarantee to contribute an amount not exceeding £1 to the assets of the charity in the event of winding up. The total number of such guarantees on 31 December 2020 was 10.

The Trustees of the Charity who served during the year ended December 31, 2020 are shown on p1. The Trustees generally meet in person, once annually and via online conferencing on a bi-monthly basis and as needed basis. Since the pandemic started, Trustees have met more frequently and through online face to face meetings via Zoom!

As a parent-driven, patient organisation, Reverse Rett looks first to the Rett Syndrome community to recruit Trustees. The organisationís founding document states in section 19 that

Potential trustees are nominated to the Board by one or more of the existing Board members. The validity of the nomination is discussed. The Trustees then vote on whether to approve the membership of the proposed individual.

No other person or external body is permitted to appoint charity trustees.

Induction and training of Trustees is delivered in person through one-to-one contact with the organisationís Chairman, where Trusteeís roles and responsibilities are explained and supporting information is sent to the newly recruited Trustee as appropriate.

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Reverse Rett Trusteesí Annual Report For the year ended 31[st] December 2020

Reverse Rett is a full member of the umbrella organisation, the Association of Medical Research Charities (AMRC). Membership of AMRC requires member organisations to fulfil specific criteria with regards to a high standard of external peer review of proposed research projects and subsequent monitoring.

Detailed information about the established AMRC peer review process at Reverse Rett can be found here. https://www.reverserett.org.uk/what-we-do/how-we-fund-uk-clinical-research/

The Board of Trustees of Reverse Rett delegates day to day operational responsibility of the organisation to the CEO, Rachael Stevenson.

In accordance with the charityís Financial Procedures Policy, expenditure of >£20K must be approved by Board Chairman as well as CEO.

The Board of Trustees must review and approve:

The Reverse Rett Conflict of Interest Policy is signed annually by all Trustees.

Remuneration policy for key management personnel

Two of the charityís Trustees are full-time employees of the organisation and thus receive a salary for their work.

As Founding Trustees of the organisation, Rachael Stevenson and Andrew Stevenson are recused from any Board meetings to discuss the details of their employment at Reverse Rett. Adjustments in remuneration for both parties are decided by the Board of Trustees.

Employment of Directors of the Charity is permitted by Article 6.4.2 of the Memorandum and Articles of Association of the Charity which provides that Directors of the Charity may be employed providing that the majority of Directors do not benefit in this way.

All remaining trustees give their time voluntarily and receive no benefits from the charity. Any expenses reclaimed from the charity by these Trustees are set out in note 10 to the accounts.

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Reverse Rett Trusteesí Annual Report For the year ended 31[st] December 2020

Related parties and relationships with other organisations

Reverse Rett is a full member of the Association of Medical Research Charities (AMRC) We work in partnership with the following organisations:

The following are international organisations from whom we have received donations during the 2020 financial year:

Douces Rett Association OpÈ Rett

With special thanks to our industry partners:

GW Pharmaceuticals Anavex Life

Sciences Corp

Newron Pharmaceuticals

Taysha Gene Therapies

Novartis Gene Therapies

Risk management

During the annual in person board meeting 2020, the charity trustees considered the major risks to which the charity is exposed.

These include but are not limited to;

Keeping a six-month reserve protects the charity in the short term from a major decrease in fundraising which we have now experienced due to the Covid-19 outbreak.

The potential for key personnel changes will be reviewed on an ongoing basis. The charity is insured against the loss of the Executive Director as recruitment for this post is likely to bring a significantly increased cost for the charity. In 2021, Reverse Rett is working to broaden the management base to deliver more protection for the charity against the loss of key personnel.

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Reverse Rett Trusteesí Annual Report For the year ended 31[st] December 2020

Fundraising

Reverse Rett is registered with the Fundraising Regulator and considered to be demonstrating commitment to good fundraising practice.

Reverse Rett is committed to following the Fundraising Regulatorís Code of Fundraising Practice and the Fundraising Promise and is permitted to use the Fundraising Regulator badge on all fundraising materials.

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Reverse Rett Trusteesí Annual Report For the year ended 31[st] December 2020

Statement of responsibilities of the trustees

The trustees (who are also directors of Frs102 company charity for the purposes of company law) are responsible for preparing the trusteesí annual report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

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

The trustees are responsible for keeping proper accounting records that disclose with reasonable accuracy at any time the financial position of the charitable company 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 hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

In so far as the trustees are aware:

The trustees are responsible for the maintenance and integrity of the corporate and financial information included on the charitable company's website. Legislation in the United Kingdom governing the preparation and dissemination of financial statements may differ from legislation in other jurisdictions.

The trusteesí annual report has been approved by the trustees on ____

and signed on their behalf by

John Sharpe ________ Chairman

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Independent Auditorsí Report to the Members and Trustees of Reverse Rett

Opinion

We have audited the financial statements of Reverse Rett (the ëcharitable companyí) for the year ended 31 December 2020, which comprise the Statement of Financial Activities (including the income and expenditure account), the Balance Sheet, the Statement of Cash Flows and the related notes. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including Financial Reporting Standard 102 The Financial Reporting Standard applicable in the UK and Republic of Ireland (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 Auditorís responsibilities for the audit of the financial statements section of our report. We are independent of the charitable company in accordance with the ethical requirements that are relevant to our audit of the financial statements in the UK, including the FRCís 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 trusteesí 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 charitable company'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 trusteesí annual report, other than the financial statements and our auditorís report thereon. Our opinion on the financial statements does not cover the other information and, except to the extent 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 there is a material misstatement in the financial statements or a material misstatement of the

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Independent Auditorsí Report to the Members and Trustees of Reverse Rett

other information. 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.

Opinions on other matters prescribed by the Companies Act 2006

In our opinion, based on the work undertaken in the course of the audit:

Matters on which we are required to report by exception

In the light of our knowledge and understanding of the charitable company and its environment obtained in the course of the audit, we have not identified material misstatements in the trusteesí report. We have nothing to report in respect of the following matters in relation to which the Companies Act 2006 requires us to report to you if, in our opinion:

Responsibilities of trustees

As explained more fully in the trusteesí responsibilities statement set out on page 18, the trustees (who are also the directors of the charitable company for the purposes of company law) are responsible for the preparation of the financial statements and for being satisfied that they 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 charitable companyís 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 charitable company or to cease operations, or have no realistic alternative but to do so.

Auditorís responsibilities for the audit of the financial statements

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 auditorís 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.

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Independent Auditorsí Report to the Members and Trustees of Reverse Rett

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 specific procedures for this engagement and the extent to which these are capable of detecting irregularities, including fraud is detailed below:

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 is available on the Financial Reporting Councilís website at: https://www.frc.org.uk/Our-Work/Audit/Audit-and-assurance/Standards-and-guidance/Standards-andguidance-for-auditors/Auditors-responsibilities-for-audit/Description-of-auditors-responsibilities-foraudit.aspx. This description forms part of our auditorís report.

Use of our report

This report is made solely to the charitable companyís members, as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006. Our audit work has been undertaken so that we might state to the charitable companyís members those matters we are required to state to them in an auditorís 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 charitable company and the charitable companyís members as a body, for our audit work, for this report, or for the opinions we have formed.

Chinwe Jennifer Daniel FCCA DChA Senior Statutory Auditor

for and on behalf of

Slade & Cooper Limited Statutory Auditors Beehive Mill Jersey Street Manchester, M4 6JG

Date: ___

21

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Reverse Rett

Statement of Financial Activities

(including Income and Expenditure account)

for the year ended 31 December 2020

Unrestricted
funds
Note
£
Income from:
Donations and legacies
3
333,808
Charitable activities:
4
262,700
Total income
596,508
Expenditure on:
Raising funds
5
110,401
Charitable activities:
6
531,077
Total expenditure
641,478
8
(44,970)
Transfer between funds
(16,000)
Net movement in funds for the year
(60,970)
Reconciliation of funds
Total funds brought forward
406,494
Total funds carried forward
345,524
Net income/(expenditure) for the
year		 Restricted
funds
£
23,650
31,266
54,916
-
37,923
37,923
16,993
16,000
32,993
52,437
85,430		 Total funds
2020
£
357,458
293,966
651,424
110,401
569,000
679,401
(27,977)
-
(27,977)
458,931
430,954		 Total funds
2019
£
526,345
367,320
893,665
152,538
477,190
629,728
263,937
-
263,937
194,994
458,931

The statement of financial activities includes all gains and losses recognised in the year. All income and expenditure derive from continuing activities.

22

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Reverse Rett Company number 07278507

Balance sheet as at 31 December 2020

Note
£
£
Fixed assets
Tangible assets
12
3,504
Total fixed assets
3,504
Current assets
Debtors
13
109,163
Cash at bank and in hand
409,978
Total current assets
519,141
Liabilities
Creditors: amounts falling
due in less than one year
14
(91,691)
Net assets
430,954
The funds of the charity:
Restricted income funds
15
85,430
Unrestricted income funds
16
345,524
Total charity funds
430,954
2020		 £
£
2,355
2,355
106,775
365,123
471,898
(15,322)
458,931
52,437
406,494
458,931
2019		 £
£
2,355
2,355
106,775
365,123
471,898
(15,322)
458,931
52,437
406,494
458,931
2019
2,355
458,931
52,437
406,494
458,931

These accounts are prepared in accordance with the special provisions of part 15 of the Companies Act 2006 relating to small companies and constitute the annual accounts required by the Companies Act 2006 and are for circulation to members of the company.

The notes on pages 26 to 39 form part of these accounts.

Approved by the trustees on //2021 and signed on their behalf by:

John Sharpe (Chair)

23

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Reverse Rett

Statement of Cash Flows for the year ending 31 December 2020

Note
2020
£
Cash provided by/(used in) operating activities
19
47,353
44,855
Cash and cash equivalents at the beginning of the year
365,123
Cash and cash equivalents at the end of the year
409,978
Increase/(decrease) in cash and cash
equivalents in the year		 2019
£
144,657
141,759
223,364
365,123

24

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Reverse Rett

Notes to the accounts for the year ended 31 December 2020

1 Accounting policies

The principal accounting policies adopted, judgments and key sources of estimation uncertainty in the preparation of the financial statements are as follows:

a Basis of preparation

The financial statements have been prepared in accordance with 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), second edition - October 2019 (Charities SORP (FRS 102)), the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) and the Companies Act 2006 and UK Generally Accepted Accounting Practice.

Reverse Rett meets the definition of a public benefit entity under FRS102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy note.

Reconciliation with previous Generally Accepted Accounting Practice

In preparing the accounts, the trustees have considered whether in applying the accounting policies required by FRS 102 and the Charities SORP FRS 102 the restatement of comparative items was required. No Restatements were required.

b Preparation of the accounts on a going concern basis

The trustees consider that there are no material uncertainties about the charitable company's ability to continue as a going concern.

The trustees have made no key judgments which have a significant effect on the accounts.

The trustees do not consider that there are any sources of estimation uncertainty at the reporting date that have a significant risk of causing a material adjustment to the carrying amount of assets and liabilities within the next reporting period.

25

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Reverse Rett

Notes to the accounts for the year ended 31 December 2020 (continued)

c Income

Income is recognised when the charity has entitlement to the funds, any performance conditions attached to the item(s) of income have been met, it is probable that the income will be received and the amount can be measured reliably.

Income from government and other grants, whether ëcapitalí grants or ërevenueí grants, is recognised when the charity has entitlement to the funds, any performance conditions attached to the grants have been met, it is probable that the income will be received and the amount can be measured reliably and is not deferred.

For legacies, entitlement is taken as the earlier of the date on which either: the charity is aware that probate has been granted, the estate has been finalised and notification has been made by the executor(s) to the charity that a distribution will be made, or when a distribution is received from the estate. Receipt of a legacy, in whole or in part, is only considered probable when the amount can be measured reliably and the charity has been notified of the executorís intention to make a distribution. Where legacies have been notified to the charity, or the charity is aware of the granting of probate, and the criteria for income recognition have not been met, then the legacy is a treated as a contingent asset and disclosed if material.

Income received in advance of a provision of a specified service is deferred until the criteria for income recognition are met.

d Donated services and facilities

Donated professional services and donated facilities are recognised as income when the charity has control over the item, any conditions associated with the donated item have been met, the receipt of economic benefit from the use by the charity of the item is probable and that economic benefit can be measured reliably. In accordance with the Charities SORP (FRS 102), general volunteer time is not recognised; refer to the trusteesí annual report for more information about their contribution.

On receipt, donated professional services and donated facilities are recognised on the basis of the value of the gift to the charity which is the amount the charity would have been willing to pay to obtain services or facilities of equivalent economic benefit on the open market; a corresponding amount is then recognised in expenditure in the period of receipt.

e Interest receivable

Interest on funds held on deposit is included when receivable and the amount can be measured reliably by the charity; this is normally upon notification of the interest paid or payable by the Bank.

26

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Reverse Rett

Notes to the accounts for the year ended 31 December 2020 (continued)

f Fund accounting

Unrestricted funds are available to spend on activities that further any of the purposes of charity.

Designated funds are unrestricted funds of the charity which the trustees have decided at their discretion to set aside to use for a specific purpose.

Restricted funds are donations which the donor has specified are to be solely used for particular areas of the charityís work or for specific projects being undertaken by the charity.

g Expenditure and irrecoverable VAT

Expenditure is recognised once there is a legal or constructive obligation to make a payment to a third party, it is probable that settlement will be required and the amount of the obligation can be measured reliably.

Irrecoverable VAT is charged as a cost against the activity for which the expenditure was incurred.

h Allocation of support costs

Support costs are those functions that assist the work of the charity but do not directly undertake charitable activities. Support costs include back office costs, finance, personnel, payroll and governance costs which support the charity's programmes and activities.

i Operating leases

Operating leases are leases in which the title to the assets, and the risks and rewards of ownership, remain with the lessor. Rental charges are charged on a straight line basis over the term of the lease.

j Tangible fixed assets

Individual fixed assets costing £1,000 or more are capitalised at cost and are depreciated over their estimated useful economic lives on a straight line basis as follows:

Office equipment 25% Computer equipment 25%

27

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Reverse Rett

Notes to the accounts for the year ended 31 December 2020 (continued)

k Debtors

Trade and other debtors are recognised at the settlement amount due after any trade discount offered. Prepayments are valued at the amount prepaid net of any trade discounts due.

l Cash at bank and in hand

Cash at bank and cash in hand includes cash and short term highly liquid investments with a short maturity of three months or less from the date of acquisition or opening of the deposit or similar account.

m Creditors and provisions

Creditors and provisions are recognised where the charity has a present obligation resulting from a past event that will probably result in the transfer of funds to a third party and the amount due to settle the obligation can be measured or estimated reliably. Creditors and provisions are normally recognised at their settlement amount after allowing for any trade discounts due.

n Financial instruments

The charity only has financial assets and financial liabilities of a kind that qualify as basic financial instruments. Basic financial instruments are initially recognised at transaction value and subsequently measured at their settlement value with the exception of bank loans which are subsequently measured at amortised cost using the effective interest method.

o Pensions

Employees of the charity are entitled to join a defined contribution ëmoney purchaseí scheme. The charityís contribution is restricted to the contributions disclosed in note 9. There were no outstanding contributions at the year end.

2 Legal status of the charity

The charity is a company limited by guarantee registered in England and Wales and has no share capital. In the event of the charity being wound up, the liability in respect of the guarantee is limited to £1 per member of the charity. The registered office address is disclosed on page 1.

28

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Reverse Rett

Notes to the accounts for the year ended 31 December 2020 (continued)

3 Income from donations and legacies

Unrestricted
Restricted
£
£
Donations
277,897
21,075
Grants -
Sylvia Aiken Trust
6,000
-
The Patrick and Helena Trust
10,000
-
Covid Response and JRS
39,311
-
Others
600
2,575
Total
333,808
23,650
Income from donations and legacies - previous year
Unrestricted
Restricted
£
£
Donations
458,619
-
Grants
Charterhouse Charitable Trust
5,000
-
Sylvia Aiken Trust
8,000
-
Lawson Trust
-
35,000
Mazars
-
9,726
The Patrick and Helena Trust
10,000
-
Total
481,619
44,726		 Total 2020
£
298,972
6,000
10,000
39,311
3,175
357,458
Total 2019
£
458,619
5,000
8,000
35,000
9,726
10,000
526,345

29

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Reverse Rett

Notes to the accounts for the year ended 31 December 2020 (continued)

4 Income from charitable activities

Unrestricted
£
The Big Give
82,502
London Event
91,317
MECP2 Fund
665
Family events
5,806
Newron Pharmacy
8,874
Parent 2 Parent programme
-
Gift Aid
71,024
Other income
2,512
Total
262,700
Income from charitable activities - previous year
Unrestricted
£
The Big Give
74,238
London Event
138,758
MECP2 Fund
-
Family events
13,791
Newron Pharmacy
-
Premier Research
-
Gift Aid
42,252
Other income
3,544
Total
272,583
Cost of raising funds
Staff costs
Fundraiser's fees
Event costs		 Restricted
£
-
-
12,960
-
3,633
14,529
-
144
31,266
Restricted
£
-
-
54,737
-
30,000
10,000
-
-
94,737
2020
£
63,456
5,139
41,806
110,401		 Total 2020
£
82,502
91,317
13,625
5,806
12,507
14,529
71,024
2,656
293,966
Total 2019
£
74,238
138,758
54,737
13,791
30,000
10,000
42,252
3,544
367,320
2019
£
55,629
23,161
73,748
152,538

5 Cost of raising funds

All expenditure on cost of raising funds is unrestricted.

Reverse Rett

Notes to the accounts for the year ended 31 December 2020 (continued)

30

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6 Analysis of expenditure on charitable activities

Unrestricted
Restricted
£
£
Staff costs
64,253
-
445
-
Travel and accommodation
1,688
-
Clinical trial expense
-
11,247
Parent 2 Parent programme
-
1,051
CPMRS
311,137
-
MECP2
-
25,625
5,640
-
147,914
-
531,077
37,923
Analysis of expenditure on charitable activities - previous year
Unrestricted
Restricted
£
£
Staff costs
53,620
-
141,632
64,463
14,161
-
Kings College Grant
6,030
-
Clinical trial expense
2,662
37,411
Rett disorders alliance
-
3,211
Parent 2 Parent programme
-
3,845
CPMRS
12,789
-
6,400
-
130,966
-
368,260
108,930
Governance costs
Transfer to Rett Syndrome
Research Trust USA
Governance costs (see note 7)
Support costs (see note 7)
Travel and accommodation
Transfer to Rett Syndrome
Research Trust USA
Support costs		 Total 2020
£
64,253
445
1,688
11,247
1,051
311,137
25,625
5,640
147,914
569,000
Total 2019
£
53,620
206,095
14,161
6,030
40,073
3,211
3,845
12,789
6,400
130,966
477,190

31

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Reverse Rett

Notes to the accounts for the year ended 31 December 2020 (continued)

7 Analysis of governance and support costs

Office rental cost
Staff costs
Office costs
Audit fees
Accountancy services
Legal and professional
Advertising and marketing
8
Net income/(expenditure) for the year
This is stated after charging/(crediting):
Depreciation
Operating lease rentals:
Property
Other
Auditor's remuneration - audit fees
Auditor's remuneration - accountancy fees		 Support
£
5,653
96,695
39,045
-
-
3,682
2,839
147,914
2020
£
1,349
-
2,568
3,000
1,600		 Governance
£
-
-
-
3,600
2,040
-
-
5,640
2019
£
543
7,572
2,568
3,480
1,920		 Total 2020
£
5,653
96,695
39,045
3,600
2,040
3,682
2,839
153,554

32

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Reverse Rett

Notes to the accounts for the year ended 31 December 2020 (continued)

9 Staff costs

Staff costs during the year were as follows:

aff costs during the year were as follows:
Wages and salaries
Social security costs
Pension costs
Allocated as follows:
Cost of raising funds
Charitable activities
Support costs		 2020
£
198,922
18,126
7,356
224,404
63,456
64,253
96,695
224,404		 2019
£
174,643
14,263
5,897
194,803
55,629
53,620
85,554
194,803

No employees has employee benefits in excess of £60,000 (2019: Nil).

The average number of staff employed during the period was 7 (2019: 6).

The key management personnel of the charity comprise the trustees and the Chief Executive Officer. The total employee benefits of the key management personnel of the charity were £53,040 (2019: £38,234).

10 Trustee remuneration and expenses, and related party transactions

Two of the trustees Rachael Stevenson (Chief Executive) and Andrew Stevenson (Director) received remuneration totalling £91,831 (2019: £90,438).

No trustee received travel and subsistence expenses during the year. (2019:nil).

Aggregate donations from related parties were £44,650. (2019: £25,550).

There are no donations from related parties which are outside the normal course of business and no restricted donations from related parties.

The Chief Executive and a director of Reverse Rett, Rachael Stevenson is on the Board of Rett Syndrome Research Trust USA. Monica Coenraads who is also a director of Reverse Rett sits on the Board of Rett Syndrome Research Trust USA.

Reverse Rett made charitable grant to Rett Syndrome USA of £445 this year. (2019: £206,095).

No trustee or other person related to the charity had any personal interest in any contract or transaction entered into by the charity, including guarantees, during the year (2019: nil).

33

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Reverse Rett

Notes to the accounts for the year ended 31 December 2020 (continued)

11 Corporation tax

The charity is exempt from tax on income and gains falling within Chapter 3 of Part 11 of the Corporation Tax Act 2010 or Section 256 of the Taxation of Chargeable Gains Act 1992 to the extent that these are applied to its charitable objects. No tax charges have arisen in the charity.

12 Fixed assets: tangible assets

Cost
Additions
Disposals
Depreciation
Charge for the year
Disposals
Net book value
At 1 January 2020
At
31
December
2020
At
31
December
2020
At 1 January 2020
At
31
December
2020
At
31
December
2019		 Computer
equipment
£
5,027
2,498
-
7,525
2,672
1,349
-
4,021
3,504
2,355

34

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Reverse Rett

Notes to the accounts for the year ended 31 December 2020 (continued)

13 Debtors

Debtors
Other debtors
Prepayments and accrued income
Gift aid debtor
Big Give debtor
Creditors: amounts falling due within one year
Trade creditors
Other creditors and accruals
Taxation and social security costs		 2020
£
6,300
26,672
25,956
50,235
109,163
2020
£
2,351
78,956
10,384
91,691		 2019
£
14,980
26,876
15,784
49,135
106,775
2019
£
1,277
8,071
5,974
15,322

14 Creditors: amounts falling due within one year

35

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Reverse Rett

Notes to the accounts for the year ended 31 December 2020 (continued)

15 Analysis of movements in restricted funds

Total
Total
MECP2
Duplication
Previous
reporting period
MECP2
Duplication
Rett disorder
alliance
Use in
Farringdon
Parent 2 Parent
Programme
Clinical
Research Funds
Parent 2 Parent
Programme
Clinical
Rett disorder
alliance
Use in		 Balance at 1
January 2020
£
2,680
4,861
200
7,107
37,589
52,437
Balance at 1
January 2019
£
2,680
3,072
200
10,952
-
16,904

 Income
£
34,035
-
-
14,529
6,352
54,916
Income
£
64,463
-
-
-
75,000
139,463		 Expenditure
£
(25,625)
-
-
(1,051)
(11,247)
(37,923)
Expenditure
£
(64,463)
(3,211)
-
(3,845)
(37,411)
(108,930)		 Transfers
£
-
-
-
-
16,000
16,000
Transfers
£
-
5,000
-
-
-
5,000		 As at 31
December
2020
£
11,090
4,861
200
20,585
48,694
85,430
31
December
2019
£
2,680
4,861
200
7,107
37,589
52,437

Name of restricted fund Description, nature and purposes of the fund

MECP2

The MECP2 Duplication Fund at Reverse Rett is a restricted fund. The fund exclusively supports projects devoted to the study and means of treatment of MECP2 Duplication/Triplication Syndrome. 100% of funds raised and contributed to Reverse Rett by families of children with MECP2 Duplication Syndrome and their supports in the UK are committed to MECP2 Duplication projects via RSPT US.

36

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Reverse Rett

Notes to the accounts for the year ended 31 December 2020 (continued)

Parent 2 Parent Reverse Rett Parent 2 Parent offers grants parent to parent support as a resource to families of newly diagnosed or struggling children with Rett Syndrome and related MECP2 disorders. Through a one to one 'match', experienced parents provide emotional support to families and assist then in finding information and resources.

Through the project, Reverse Rett provides on-going training and support for mentors and materials for both mentor and mentee. Communication between both parties is facilitated by Reverse Rett in the first six weeks of contact and thereafter as required.

Please find more information here: http://www.reverserett.org.uk/getinvolved/get-connected/

This is a designated fund which will support UK based clinical research and the Clinical Research implementation of treatment for Rett Syndrome and related MECP2 Disorders in Fund the UK.

16 Analysis of movement in unrestricted funds

General fund
General fund
Name of
unrestricted
General fund
Previous
reporting period		 Balance at 1
January 2020
Income
Expenditure
Transfers
£
£
£
£
406,494
596,508
(641,478)
(16,000)
406,494
596,508
(641,478)
(16,000)
Balance at 1
January 2019
Income
Expenditure
Transfers
£
£
£
£
178,090
754,202
(520,798)
(5,000)
178,090
754,202
(520,798)
(5,000)
Description, nature and purposes of the fund
The free reserves after allowing for all designated funds		 As at 31
December
2020
£
345,524
345,524
As at 31
December
2019
£
406,494
406,494

37

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Reverse Rett

Notes to the accounts for the year ended 31 December 2020 (continued)

17 Analysis of net assets between funds

Tangible fixed assets
Net current assets/(liabilities)
Total		 General
fund
£
3,504
342,020
345,524		 Designated
funds
£
-
-
-		 Restricted
funds
£
-
85,430
85,430		 Total
£
3,504
427,450
430,954

18 Operating lease commitments

The charity's total future minimum lease payments under non-cancellable operating leases is as follows for each of the following periods:

Property Equipment Equipment
2020 2019 2020 2019
£ £ £ £
Less than one year - 7,572 2,568 2,568
One to five years - 8,834 6,870 9,438
- 16,406 9,438 12,006
Reconciliation of net movement in funds to net cash flow from operating activities
2020 2019
£ £
Net income/(expenditure) for the year (27,977) 263,937
Adjustments for:
Depreciation charge 1,349 543
Decrease/(increase) in debtors (2,388) (83,114)
Increase/(decrease) in creditors 76,369 (36,709)
Net cash provided by/(used in) operating 47,353 144,657

19 Reconciliation of net movement in funds to net cash flow from operating activities

On behalf of John Sharp Chair of Trustees

14 September 2021

38