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2024-12-31-accounts

Reverse Rett Research l Advocate I Cure ReFKbrt and financial statements for the year ended 31 December 2024 Registered charity in England & Wales (1136809) and in Scotland (SC046735) Registered in England & Wales Company number: 07278507

Reverse Rett Reference and Administrative details For the year ended 31st December 2024 Company number 07278507 Charity number 1136809 in England and Wales. SC046735 in Scotland Registered office and operational addre5S Reverse Rett. Beehive Mill. Jersey Street. Manchester. M4 6JG Trustees: Trustees, who are also directors under company law, who served during the year and up to the date of this report were a5follows: John Harald Sharpe Helen Kay Simmonds Rachael Emma Stevenson. Andrew John Stevenson, Michael Christopher Jones Dr Ruksana Ahmed Joanna K L Snyder Kate Mcmaster Catherine McKinney Ortensia Martinotti Jocelyn LeBlanc Ph.D Oliver Freeman Matthew Bil lingsley Chair Vice Chair 'resigned 22.04.25 "resigned 22.04.25 'joined 19.09.24 'Trustees who are also Directors ofthe charitable company. The current number of guarantee members is I l. Trustees who held title to property belonging to the charity during the reporting period or atthe date of approval were: NA Key management Chief Executive Personnel Operations Manager Rachael Stevenson Catherine Sim Bankers Barclays Bank UK PLC, Leicester, LE87 2BB AuditorsllE Name Slade & Cooper Limited Beehive Mill, Jersey Street, Manchester. M4 6JG The trustees presenttheir report and the auditedlunaudited financial statements for theyear ended 2023. Included within the trustees, report is the directors, report as required by company law. Reference and administrative information set out on page I 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 accordancewith FRS 10

Reverse Rett Trustees Annual Report Financial year end 31 December 2024 Objectives and Activities ission: Reverse Rett is a patient advocacy and research organisation focused on delivering treatments and a cure for Rett Syndrome. Charity Objectives (as per governing document): Fund laboratory and clinical research projects. Advocate for access to treatments and therapies. Disseminate research and health information. Raise public awareness of Rett Syndromeand MECP2 disorders. Main Activities in Relation to Objectives: Rett Registry UK Launched in 2014 to support UK clinical trial readiness,. now holds data on 813 patients. Redesigned as an independently hosted app. enhancing usability. security. and patient control over data. Enables efficientclinical trial recruitment and strengthens advocacyfor treatment access. Recruitment of 94 patients in 2024.. and 101 patients in 2025 Clinical Care Funding CIPP Rett Centre. King's College London: 2024 funding.. £332,586 (£296,586 plus £36,000 for HealthTrackerl Centre currently manages 200+ complex patients with Rett syndrome. Reverse Rett supported clinical stabilisation amid increased need post pandemic. Funding ends 1 August 2025. HealthTracker Licensing: E36,000 (20241, £36,000 {20231. CIPP Rett CCIPP Rett Centre Platform enables real-time symptom tracking and group-level analysis. International Research Over £8 million delivered to RSRT since 2010. enabling genetherapy development. Reverse Rett expects to resume funding RSRT projects in late 20251early 2026.

Reverse Rett Trustees Annual Report Financial year end 31 December 2024 UK Research All research peer-reviewed per AMRC standards. 2024: One £30.0(X) grant approved. restricted donation of £30.000 to fund Singh project. MECP2 Duplication Syndrome Research (via RSRT) 2024: £2250 community fundraising income. Ongoing funding dependenton Cure MDS UKfamily fundraising. LEAP Education Day Annual community education conference. cost in 2024.. £17.108.51 Sponsorship received for 2024 LEAP Education Day.. £32.500 Community Education and Network Parent 2 Parent l Rett Connect: 2023= £0 spent. £3.056 remaining. Initiated in 2012, evolved to include 20 WhatsApp groups, Reverse Rett Community Facebook Group, and Reverse Rett Bitesize on line workshops. Reverse Rett Bitesize Workshops (2024): 5 sessions. 352 sign-ups. 975 views on YouTube Top-perfomiing topics: 'An Easy Intro to Gene Therapy for Rett" Rachael Stevenson (250 views) "Taysha Gene Therapies lets us look inside"(238 views) "DrJ3y Shetty talks gene therapyand seizures"(220 views) Indicating strong audience interest in foundational gene therapy education and expert- led insights into current research. Industry Support Collaboration with partners on program development. regulatory applications. community surveys. and patientcommunication. Health Checklist Developed in 2019 with Rett UK and FOXGI.. shared with families and clinicians. Plans to update in 2025 are underway.

Financial year end 31 December 2024

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Reverse Rett Trustees Annual Report Financial year end 31 December 2024 Beneficiaries of Our Services The beneficiaries of our services arechildren and adults with Rett Syndrome and related disorders. Children with Rett Syndromeare l)orn apparently healthy. In the first few years of life, they lose many abilities that most people takefor granted, such as using their hands. speaking. and walking. This loss affects their ability to communicate, form relationships. and gain independence. Some children may neverwalkand are confined to a wheelchair. while others may wa Ik but later lose this ability. Those who retain mobility often face anxiety and instability. Despite appearing less aware due to their physical limitations, people with Rett Syndrome are often very cognizant of their condition. They endure significant pain and discomfort from symptoms like seizures, breathing issues. and muscle problems. Managing these symptoms is challenging, as addressing one often worsens another. Rett Syndrome brings a rangeof severe and lif&limiting medical issues that greatly impact the lives of patients and their families. causing profound disruption and distress. There are currently no approved treatments in the UK, either to delay progression or ameliorate symptoms. At Reverse Rett. we work to accelerate treatments whi 1st empowering families and carers to keep their child, young person or adult with Rett syndrome as healthyas possible foras long as possible. Our number one focus is on enabling these patientsto access to emerging treatments as soon as they become available. We empowerour communityto take action in support ofthis workto help improvethe lives of everyone affected. both now and in the future. The Board of Trustees gratefully acknowledges the generosity of individuals, companies. and community groups who have raised funds for Reverse Rettthrough online platforms including JustGiving, the Big Give Christmas Challenge, Facebook birthdays. and otherfundraising campaigns. Financial Overview: 2023 Background In 2023, Reverse Rett reported a £95.957 deficit. a 68% reduction from the previous year, despite a 16% drop in income. This was largely due to ongoing funding commitmentsto the CIPP Rett Centre and revised billing from King's College London {KCL), following pandemic-related delays in payment processing. Although gala income declined and stafftransitions disrupted event planning, a special appeal and strong community support helped partially offsetthese losses. However, the charity s reserves were significantly depleted. raising concerns about long-term financial stability.

Reverse Rett Trustees Annual Report Financial year end 31 December 2024 2024 Financial Recovery and Growth In 2024, the charity made significant progress= Income increased by 17% to £809.095 (2023.. £674,276). Expenditure rose rnodestly by 4% to £793,670 (2023.. £764,346}, reflecting inflation and cost-of-living pressures. As a result, the deficit narrowed by £15.425. marking a continued trend towards financial recovery. Key actions taken include: Renegotiating the CIPP Rett Centre contract. reducing funding by 56% from September 2024. Hiring a Senior Development Officer. funded by a £60,000 grant, to enhance fundraising capacity. Outlook for 2025 With CIPP Rett Centre funding dueto conclude on 1 September 2025, Reverse Rett is on track to return to financial surplus. The charity is projected to end 2025 with an £112.000 surplus, restoring financial stability to pre-pandemic levels. Fundraising in 2024 Reverse Rett'sfundrai5ing is primarily driven byfamilies and friends of those affected by Rett or MECP2 Duplication Syndrome (MDS). The charity does not use professional fundraisers. Reverse Rett is registered with the Fundraising Regulatorand fully compliant with its standards, displaying the Regulator badge on all fundraising materials. Reverse Rett has three published fundraising policies. and no failures to comply with these policies or standards occurred in 2024. Key fundraising practices.. No cold calling. mailing. or street solicitation is undertaken or permitted. Fundraisers are supported directly by our Fundraising Manager from the outset. Online fundraising workshops are provided throughout the year. Fundraisers are advised notto place undue pressure on potential donors or to persistently solicit. Fundraising Oversight and Complaints All fundraising activity is monitored through direct relationships With supporters. The charity received zero complaints about itsfundraising activities in 2024. Reverse Rett did not act as a custodian trustee during the reporting period.

Reverse Rett Trustees Annual Report Financial year end 31 December 2024 Reverse Rett Fundraising Summary- 2024 2024 was a strong year for Reverse Rett fundraising. with income growlh across multiple streams.. JustGiving income rose by 131%. reaching £284,987 (2023.. £217,101). The London Event raised £72.677, up from £47.179 in 2023. Big Give Christmas Challenge income increased by 29%to £92.60712023'. £71,973). Reverse Rett has already secured Lhe full £25.000 match funding required for the 2025 campaign. 365 Club. the monthly digital prize draw. grew modestly. bringing in £13,590 12023.. E12,6601. Trusts and Foundations income rose by 38%, from £14,500 to £20,000, supported by the appointment ofa dedicated fundraiser in September 2024. Since then. 38 funding applications have been submitted. These gains reflect a year of renewed momentum and capacity-building, positioning the charity for sustained growth into 2025. Regular monthlygiving 2024 42 donors - JustGiving {19 Anonymous) 40 donors - Donorfy 8 donors - Bank account The Reverse Rett 365 Club currently has 263 members which is an increase from 244 in 202417 %). There is scope forthe charity to increase membership with a targeted campaign in 2025. The club can accommodate 365 members. Financial Position and Reserves The charity currently holds nofree reserves as laid out in Note 1 B to the accounts. Per our reserves policy. Reverse Rett aims to hold six months of operating costs atthe end of each year, to cover redundancy liabilities, lease agreements, and other key obligations should the charity cease operations. Cash held at year-end 2024: £64.184.97 Cash balance projection at the end of 2025: £112.000

Reverse Rett Trustees Annual Report Financial year end 31 December 2024 Strategic Direction Reverse Rett's 5-year strategy. "Change is Within Reach" (2021-2026). continued to guide the charity s Annual Plan in 2024 and 2025. A new strategy is under development and will be shared in Q12026. Key Focus Areas in 2024: CIPP Rett Centre tapering of funding with a view to completing Centre funding to a close in 2025. O GrowLh of the Rett Registry UK. O Support for industry partners delivering gene therapy trials. O Supportfor industry-led UK and international t)urden-of-illness surveys. Build tools and resources to support UK regulatory submissions. O Raised public awareness of Rett and MECP2Duplication Syndromes. / Targeted outreach to undiagnosed or unregistered individuals. O Targeted health information to families. 0 Online Bitesize education sessions focused on managing health complexities. O National conference biinging patient5. fafflilies, clinicians and industry together to learn. Fundraising enables all the work we do at Reverse Rett. In 2024, the charity implemented the following keyfundraising goals as well as implementing the London Gala, Big Give Christmas Challenge and 365 Club throughout 2024. Each of the below challengeswas led by Reverse Rett Co-founder/Senior Management. 100KJura55ic Trek I OOK Lake District Challenge Manchester Marathon Reverse Rett: Focus Areas for 2025 In 2025, Reverse Rett continues its mission to accelerate treatments and improve outcomes for people with Rett syndrome. Key areas of focus for the year include.. Expanding Rett Registry UK Through regular seasonal campaigns and personalised outreach. the charity aims to grow the Registry to ensure more individuals are trial-ready as new treatments become available. Building the UK Cost of Illness Model In partnership with Costello Medical. Reverse Rett is developing a UK-specific cost of illness model to support future Health Technology Assessments and improve access to emerging treatments.

Reverse Rett Trustees Annual Report Financial year end 31 December 2024 Conducting a UK Mortality Survey A nationwide survey will be undertaken to better understand early mortality in Rett syndrome and strengthen the evidence base for health policy and resource planning. Developing an Emeryency Alert Card A newtool will be introduced to helpfrontline healthcare professionals identify key clinical risks when individuals with Rett syndrome present at A&E. Delivering Targeted Education on Respiratory Care Focused community education initiatives will address respiratory complications, a leading contributor to poor outcomes in Rett syndrome. Transitioning the CIPP Rett Centre After six years offunding the Centre, Reverse Rettwill begin to step back, while continuing to supportfamilies Lo access services through NHS funding where appropriate. Supporting Clinical Trials and Industry Research The charity will continue working closely with industry partners delivering gene therapy trials and contributing to UK and global studies on the burden of Rett syndrome. Raising Awareness and Reaching the Undiagnosed Reverse Rettwill increase public awareness of both Rett syndrome and MECP2 Duplication Syndrome and conducttargeted outreach to under-represented and undiagnosed individualsto ensure inclusion in future treatment opportunities.

Reverse Rett Trustees Annual Report Financial year end 31 December 2024 Acknowledgements The Trustees thank our tremendous Reverse Retlcommunity: in particular, our Reverse Rett Ambassadors and all individuals, families, fundraisers and donors whose ongoing support makes our work possible. Our special appreciation goes out to each and every one ofour children, young people and adults with Rett syndrome who inspire this support Individual Andrews, Julie Bird, Albert Bird. Jennifer and Derek Darby, Martin Fraser, Craig Gruber, Carol Hamilton, J Jones, Sally Snaith, Ben Wainwright. David Snaith, Ben Wainwright, David Walls, Claire Companies A Star Experience, Acadia Pharaceutical. Ballymore. Black Bridge, Enthuse, Glastonbury Fesitval, Global E, Group Metropolitan Harris & Trotter, Bolton Ladies Rounders Buxton Ladies Group Trusts & Foundations Opé Rett, Charaties Aid Foundation, Highcliffe Charity HCP. MECP2 Research, Ambassadors Gareth O'Brien- Rugby League Player (Leigh Leopards I Castleford Tigers) David Ford- Musician Rhea Kara-Artistand Prideof Britain Awardwinner Gary Chambers- Director of Rugby at Warrington Wolves Karl MoThis- Founderof The Mind Factor Dominic Laurie- BBC Presenter Giles Coren - TV and Radio Presenter Carl Greaves- Boxing t¥omoterand Trainer Erin Eaves-Award W-inning Fundraiser David Rouse- Former Professional Footballer & Goalkeeping Coach Mar1("Mavis" Reilly- Former Professional Footballer. Ultra Athlete & Author Richard Marshall-AssistanLCoach atwarrington Wolves 10

Reverse Rett Trustees Annual Report Financial year end 31 December 2024 Regional Ambassadors Baine, Glenn Baine, Tara Bil lingsley, Louise Buckley, Kate Buckley, Neil Coles. Catherine Connolly, Jim Coverley. Caren Cozic, Bertrand Crookes, Simone Davidson, Mary Davidson, Melise Douglas-Hamilton, Elly Ellis, Stephanie Etherington, Andrew Freeman, Rodrigo Ful Ibrook. Georgie Ful Ibrook. Jayne Havil l. Wesley Hodgson. Dan Hodgson, Eva Claire Hunt, Donna Johnson, Jo Jones, Kylie Kensington. Kate Langhorne, Shazza Larmer, Jackie Larmer, Natalia Reil ly, Sylvia Lashbrooke. Ben Ross. Rita Lashbrooke, Debbie Rutherford, Hayley Lilly. Sarah Sargent, Kerry Lishomwa, Mary Sawyers, Dan Lishomwa. Siseho Selby, Eylem Lorimer. Amanda Sharpe. John Louden, Rhiannon Simmonds, Helen Mackenzie. Brendon Sloan. Scott Marsden. Emily Smith. Julie Martinotti, Ortensia Smith, Katherine Mccready. Katherine Smith. Liam McDonald, Jamie Snyder, Joanna McGregor-Sims, Deucalion Spence, Jill Mckendrick. Bonnie Starbuck. Sarah McKinney, Angus Stevenson, Andy McKinney. Catherine Stevenson, Rachael McKinney. Ross Taylor, Sarah Mcmaster. Kate Tree, Myfanwy Mcmaster. Scott Wainwright. David J Monti. Pamela Wainwright. Louise Moore, Allan Walls, Claire Morrison. Anna Walls, Mark Nightingale, Jill Walsh, Mark Owen, Sion Warne, Gareth Prebble. Victoria Wasowska. Ewelina Rajan. Lisa White. Tanya Read. Denise Wood. Al Reilly. Mark Wood. Stephanie Ricketts, Josh

Reverse Rett Trustees Annual Report Financial year end 31 December 2024 Structure, govemance and management Reverse Rett is a company limited by guarantee, company number 07278507 incorporated on 9th June 2010. The company was established under a Memorandum of Association which established the objects and powers ofthe 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. The first Trustees are those persons notified to Companies House asthe first Directors ofthe 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 theTru5tees who are elected and co-opted under the terms oftheArticles ofAssociation. The trustees are members ofthe charity. butthis entitles them onlyLo voting rights. The trustees have no beneficial interest in the charity. Members of the charity guarantee to contributean 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 2024 was 11. The Trustees ofthe Charity who served duringthe yearended December 31. 2024 are shown on pl. The Trustees generally meet in person. once annuallyand via online conferencing on a bi-monthly basis and as needed basis. As a parent-driven, patient organisation, Reverse Rett looks first to the Rett Syndrome community to recruit Trustees. The organisation sfounding document states in section 19that A Director must be a naturalperson aged 76years or older. No one m3y be appointeda Director if he orshe would be disqualified from acting under the provisions of article 27. 12

Reverse Rett Trustees Annual Report Financial year end 31 December 2024 In 2022. the charity audited the recruitment process for Board members. A new more comprehensive recruitment process was developed. Potential trustees are nominated to the Board by one or more of the existing Board members. The individual is approached and sent an application pack. The individual returns their application. Chairman and CEO discuss and if appropriate. invite the individual to an informal interview. Subsequent to that interview, if it is agreed to be mutually beneficial, the individual is invited to observe a board meeting and to introducethemselves atthe meeting. The Trustees then vote on whether Lo approve the membership of the proposed individual. In 2022, the Trustees highlighted the importance of recruiting additional board members who are not directly affected by Rett Syndrome. The current number of individuals personally affected on the board of Trustees (as of Sept 20241 is 9112 compared to 8111 (July 2023). 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 organisation's Chairman, where Trustee's roles and responsibilities are explained and supporting information is sentto the newly recruited Trustee as appropriate. Reverse Rett is a full member of the umbrella organisation, the Association of Medical Research Charities IAMRC). Membership ofAMRC requires member organisations to fulfil specific criteria with regards to a high standard of external peer review of proposed research projects and subsequent monitoring. 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 charity's Financial Procedures Policy, expenditure of >£20K must be approved by Board Chairman as well as CEO. The Board of Trustees must review and approve.. New organisation policies Amendments to existing policies Funding of new research projects Salary increases for CEO and related parties Remuneration KM)licy for key management personnel 13

Reverse Rett Trustees Annual Report Financial year end 31 December 2024 The Reverse Rett Conflict of Interest Policy is signed annually by all Trustees. Two ofthe charity's Trustees are full-time employees ofthe organisation and thus receive a salary for their work. These salaries are highlighted underTrustee remuneration and expenses. and related party transactions due to AS and RES Trustee status. These figures reflect salary only and are not additional expenses recovered by AS and RES in relation to their employmenLaL Reverse Rett. 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 ofthe Charity is permitted by Article 6.4.2 of the Memorandum and Articles ofAssociation ofthe Charity which providesthat Directors of the Charity may be employed providing that the majority of Directors do not benefit in this way. Al I remaining trustees give their time voluntarily and receive no benefits from the charity. Any expenses reclaimed from the charity bythese Trustees are detailed below under Trustee remuneration and expenses. and related party transactions. Related parties and relationships with other oryanisations Reverse Rett is a full memberof the Association of Medical Research Charities {AMRC) We work in partnership with thefollowing organisations= Rett Syndrome Research Trust (USA) Opé Relt Gudrun s Rett Syndrome Research Trust Israel Rett Syndrome Research and Treatment Foundation Rett Syndrome Ireland With special thanks to our industry partners: Acadia Anavex Life Sciences Corp. Neurogene Inc. Taysha Gene Therapies 14

Reverse Rett Trustees Annual Report Financial year end 31 December 2024 Risk Management At the 2024 annual in-person meeting. trustees reviewed key risks. including.. l. Sudden drop in fundraising- mitigated by a six-month reserve policy 2. Key personnel changes- especially astwo senior staff are related and parents ofchildren with Rett Syndrome To reduce risk, an Operations Manager was appointed in 2023, easing workload and improving continuity. The charity also hold5 key personnel insurancefor the CEO.Trustee Recruitment and Board Composition Proposed trustees are invited to attend a board meeting to introduce themselves, after which a vote is held. In 2022. the Trustees prioritised diversifying the Board by recruiting members not directly affected by Rett Syndrome. As ofjuly 2025, 9 of Trustees are personally affected. compared to 8 in July 2023. Fundraising Standards and Complaints Reverse Rett is registered with the Fundraising Regulator and adhere5 to the Code of Fundraising Practice and the Fundraising Promise. All fundraisers receive clear policies outlining acceptable practices. No telephone, mail, or street solicitations are used or permitted. Personal data is securely managed via Donorfy and GDPR-compliant systems. In 2022, the charity received three complaints relating to the #FreeFromRett campaign. Govemance and Oversight No external party may appointTrustees. Trustees receive induction through one-to-one sessions with the Chair and relevant support materials. Daily operations are delegated to the CEO. All expenditure over £20,000 must be approved by both the CEO and Board Chair. The Board reviews and approves: New or amended policies Research projecLfunding Salary changes forthe CEO and related parties Remuneration policy for senior staff Conflict of Interest declarations are signed annually by all Trustees. 15

Reverse Rett Trustees Annual Report Financial year end 31 December 2024 Remuneration and Related Party Transactions Two Trustees, Rachael Stevenson and Andrew Stevenson. are full-time employees. As Founding Trustees, they are recused from decisions relating to their employment. Salary adjustments are made bythe remaining Board members. EmploymentofTrustees is permitted underArticle 6.4.2 of the charity's Articles of Association, provided the majority of trustees do not receive financial benefit. Al l other Trustees serve voluntarily and receive no remuneration. Reimbursed expenses {ifanyl are disclosed in Note 10 of the accounts. 16

Reverse Rett Trustees Annual Report Financial year end 31 December 2024

Statement of responsibilities of the trustees

The trustees (who are also directors of Reverse Rett for the purposes of company law) 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).

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 trustees’ annual report has been approved by the trustees on 24/09/2025 and signed on their behalf by

Rachael Stevenson CEO

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Independent Auditors’ Report to the Members and Trustees of Reverse Rett

Opinion

We have audited the financial statements of Reverse Rett (the ‘charitable company’) for the year ended 31 December 2024, 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 Auditor’s 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 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.

Material uncertainty relating to going concern

We draw attention to the disclosure in Note 1b in the financial statements, which indicates that the charitable company incurred a net unrestricted deficit of £46,925 during the year ended 31 December 2024 and, of that date, the charitable company’s net liabilities exceeded its total assets by £97,625. As stated in Note 1b, these events or conditions, along with other matters as set out on Note 1b, indicate that a material uncertainty exists that may cast significant doubt on the charitable company’s ability to continue as a going concern. Our opinion is not modified in respect of this matter.

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 trustees’ annual report, other than the financial statements and our auditor’s 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 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.

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Independent Auditors’ Report to the Members and Trustees of Reverse Rett

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 trustees’ 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 trustees’ responsibilities statement set out on page 17 , 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 company’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 charitable company or to cease operations, or have no realistic alternative but to do so.

Auditor’s 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 auditor’s 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

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Independent Auditors’ Report to the Members and Trustees of Reverse Rett

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 Council’s website at: https://www.frc.org.uk/auditorsresponsibilities. This description forms part of our auditor’s report.

Use of our report

This report is made solely to the charitable company’s 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 company’s members 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 charitable company and the charitable company’s 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: 25/09/2025

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Reverse Rett Statement of Financial Activities (including Income and Expenditure account) for the year ended 31 December 2024 Unrestricted fijnds Restricted fijnds Total funds 2024 Total funds 2023 Note Income from: Donations and legacles 450,088 67,093 517,181 454,358 Charitable activities: 289,664 2,250 291,914 219,918 Total income 739,752 69,343 809,095 674,276 Expenditure on: Raising funds 294,155 3,824 297,979 228,230 Charitable activities: 492.522 20,262 512,784 536,116 Total expenditure 786,677 24,086 810,763 764,346 Net Income/(expendlture) for the year (46,925) 45.257 (1,6681 (90,070) Transfer between funds Net movement in funds for the year (46,925) 45.257 (1,668) (90,070) Reconciliation of funds Total funds brought forward (136,899) 40,942 (95,957) (5,887) Total funds carried forward (183,824) 86.199 (97,625) (95,957) The statement of financial activities includes all gains ènd losses recognised in the year. All income and expenditure derive from continuing activities. 21

Reverse Rett Company number 07278507

Balance sheet as at 31 December 2024

----- Start of picture text -----
Note 2024 2023
£ £ £ £
Fixed assets
Tangible assets 12 2,415 2,071
Total fixed assets 2,415 2,071
Current assets
Debtors 13 96,404 40,995
Cash at bank and in hand 64,496 46,375
Total current assets 160,900 87,370
Liabilities
Creditors: amounts falling
due in less than one year 14 (260,940) (185,398)
Net assets (97,625) (95,957)
The funds of the charity:
Restricted income funds 15 86,199 40,942
Unrestricted income funds 16 (183,824) (136,899)
Total charity funds (97,625) (95,957)
----- End of picture text -----

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 23 to 37 form part of these accounts.

Approved by the trustees on 24/09/2025 and signed on their behalf by:

John H Sharpe (Chair)

22

Reverse Rett Statement of Cash Flows for the year ending 31 December 2024 2024 2023 Cash provided byl(used in) operating activities 19 19.672 (146 102) Cash flows from investing artivities.. Purchase of tangible fixed assets (1,551) (1,728) Cash provided by/(used in) investing activities (1.551) (1.728) Increase/(decrease) in cash and cash equivalents in the year 18,121 (147,830) Cash and cash equivalents at the beginning of the year 46,375 194,205 Cash and cash equivalents at the end of the year 64,496 23

Reverse Rett Notes to the accounts for the year ended 31 December 2024 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 Recomrnended Prartice 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 Accountinq Practice. Reverse Rett meets the definition of a public benefit entity under FRS102. Assets and liabilities re initially recognised at historical cost or transartion value unless otherwise stated in the relevant accountinq policy note. b Preparation of the accounts on a going concern basis The Trustees have assessed the ability of Reverse Rett to continue as a going concern for the period December 2024 to December 2025. Following a significant deficit in 2023 (£95,957), the charity implemented measures to reduce expenditure and strengthen income streams. In 2024. income increased by 170/0 to £809,095, while expenditure rose by only 4% to £793,670. The annual deficit narrowed to £15,425, reflecting improved fundraising performance and the successful renegotiation of the CIPP Rett Centre contrart, which will conclude on 31 August 2025. Looking forward, the ending of this funding commitment pla￿S the charity on course to return to surplus, with a projected £82.925 surplus in 2025. FunLlraising perfomiance has remained in line with projections to date, with strong growth across community fundraising, trusts and foundations, and key events. The Trustees have considered the principal risks to going concern, including loss of staff and loss of key supporters. Mitigation steps include subcontratting finance functions, investing in operational capacity, and recruiting a Senior Development Officer funded by a three-year grant. While the wider cost-of-living crisis continues to challenge family fundraising, Reverse Rett has diversified income streams and maintained a stmng supporter base, including the 365 Club and ongoing legacy campaigns. The charity has no material liabilities beyond manageable lease commitments and the tapered conclusion of the CIPP Rett Centre funding. Cash flow forecasts indicate the charity will be able to meet its obligations as they fall due. The Trustees are confident that Reverse Rett will continue to operate as a going concern for the period under review and into 2026 and therefore have considered it appropriate to prepare these accounts on a going concern basis. 24

Reverse Rett Notes to the accounts for the year ended 31 December 2024 (continued) c Income Income is recognised when the charity has entitlement to the funds, any perforniance conditions attached to the item{sl 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 'capital' grants or 'revenue' grants, is recognised when the charity has entitlement to the funds. any performan￿ conditions attached to the grants have been met, it 15 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 eartier 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 distribLJtion is received from the estate. Receipt of a legacy, in whole or in part. is only considered probable when the amount can be measLJred reliably and the charity has been notified of the executor's 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. Incorne 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 recogllised 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 trustees, annual report for more infom)ation about their contribLJtion. 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- 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. 25

Reverse Rett Notes to the accounts for the year ended 31 December 2024 (continued) f Fund accounting Unrestricted funds are available to spend on activities that further any of the purposes of charity. Designated Funds are unrestrirted 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 charity's 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 actlvity for which the expendlture was incurred. h Allocation of support costs Support costs are those functions that a5S15t the work of the charity but do not directly ndertake charitable activities. Support costs include back office costs, finance, personnel, payroll and governance costs which support the charity's programmes and activities. 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 charge5 are charged on a siraight line basis over the term of the lease. J Tanglble fixed assets Individual fixed assets costing £l.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 Cornputer equiprnent 250/0 250/0 26

Reverse Rett Notes to the accounts for the year ended 31 December 2024 (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. I Cash at bank and in hand Cash at bank and cash in hand includes cash and short terni 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 ormally 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 Penslons Employees of the charity are entitled to join a defined contribution 'money purchase, scheme. The charity's contribution is restriLted to the contributions disclosed in note 9. There were no outstanding contributions at the year end. 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 l. 27

Reverse Rett Notes to the accounts for the year ended 31 December 2024 (continued) Income from donations and legacies un￿$tritted Restricted Total 2024 Donations Grants Legacies 398,092 1.996 50,000 17,093 415,185 1,996 loo,000 50,000 Total 450,088 67,093 517, 181 Income from donations and legacies - prewous year Unre5tritted Restricted Total 2023 Donations Grants Legacie5 410.554 14,500 29.304 410,554 14,500 29.304 Total 454,358 454,358 28

Reverse Rett Notes to the accounts for the year ended 31 December 2024 (continued) Income from charitable activities un￿$tritted Restricted Total 2024 The Big Give MECP2 Fund London Event Event Income Gift Aid 365 Income other income 92,607 92,607 2,250 72,677 5,950 104,716 13,590 124 2.250 72,677 5.950 104,716 13,590 124 Total 289.664 2.250 291,914 Income from charitable artivities - previous year Unrestrirted Restricted Total 2023 The Big Give London Event Newron Pharmacy Event Income 365 Income Gift Aid Other income 71,973 47.179 71,973 47.179 4,650 34,864 12,660 44.098 4,494 4,650 34.864 12,660 44,098 4.494 Total 215,268 4,650 219,918 Cost of raising funds 2024 2023 staff costs Fundraiser's fees 365 Prizes Event costs 168.449 13.470 3,676 112.384 143,975 14.909 4,219 65.127 297.979 228,230 All expenditure on cost of raising funds is unrestritted except for £3.824 of event costs which are restricted (2023.. £Nil). 29

Reverse Rett Notes to the accounts for the year ended 31 December 2024 (continued) Analysis of expenditure on charitable activities un￿$tritted Restricted Total 2024 Staff costs Travel and accommodation Kings College Grant Clinical trial expense CPMRS MECP2 Governance costs (see note 7) Support costs (see note 7) 81,884 1.886 296,583 491 36,000 81,884 1,886 296,583 3,660 36,000 17,093 9,444 66,234 3.169 17,093 9.444 66,234 492.522 20.262 512,784 Analysis of expenditure on charitable activities - previous year Unre5tritted Restricted 2023 staff costs Travel and accommodation Kings College Grant Clinic31 trial expense CPMRS MECP2 Govemance costs (see note 7) Support costs (see note 7) 71.570 5.446 313.417 1.151 36.000 71.570 5,446 313,417 21,044 36.000 8,460 19,893 8.460 80.179 80,179 507.763 28.353 536,116 30

Reverse Rett Notes to the accounts for the year ended 31 December 2024 (continued) Analysis of governance and support costs Support Govemance Total 2024 Office rental cost Office costs Audit fees Accountancy services Legal and professional Advertising and marketing 13,001 32.887 13,001 32,887 4,320 15,794 9,649 27 4,320 15.794 4.525 27 5,124 66.234 9,444 75,678 Net income/{expenditure) for the year This is Stated after charging/(crediting)'. 2024 2023 Depreciation Auditor's remuneration audit fees Auditor's remuneration - accountancy fees 1.207 3.400 1.850 1.625 3,240 1,750 31

Reverse Rett Notes to the accounts for the year ended 31 December 2024 (continued) staff costs Staff costs during the year were as follows: 2024 2023 Wages and salaries Social security Costs Pension costs 221.820 19.642 8,871 193,881 14.606 7,058 250.333 215,545 Allocated as follows: Cost of raising funds Charitable activities Support costs 168.449 81,884 143, 975 71,570 250.333 215,545 One employee has employee benefits in excess of £60.000 (2023.. Nil). The average number of staff employed during the period was 5.3 (2023: 6). The key management personnel of the charity comprise the trustees, the Chief Executive Officer nd the Operations Manager (emplpoyed from July 2023). The total employee benefits of the key management personnel of the charity were £114,169 (2023- £88,895). 10 Trustee remuneratlon and expenses. and related party transactlons Two of the trustees Rachael Stevenson (Chief Executive) and Andrew Stevenson received remuneration totalling £114, 169 during the year (2023: £100,400). Three trustees received travel and subsistence expenses during the year of £942.95. {2023- nil). Aggregate donations from related parties were £34,000 (2023= £34,000). There are no donations from related parties which are outside the normal course of busines5 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. Reverse Rett did not make charitable grant to Rett Syndrome USA thi5 year. (2023.. £8.428). 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 {2023.' nill- 32

Reverse Rett Notes to the accounts for the year ended 31 December 2024 (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 Computer equipment Cost At l January 2024 Additions Disposals 10,802 1.551 At 31 December 2024 12,353 Depreciation At l January 2024 Charge for the year Disposals 8,731 1.207 At 31 December 2024 9,938 Net book value At 31 December 2024 2.415 At 31 December 2023 2,071 33

Reverse Rett Notes to the accounts for the year ended 31 December 2024 (continued) 13 Debtors 2024 2023 Other debtors Prepayments and accrued income Trade Debtors Gift Aid Debtor Big Give debtor 3.645 26,816 600 20.343 45,000 1,140 25,156 4,699 10,000 96.404 40.995 14 Creditors: amounts falling due within one year 2024 2023 Trade creditors Other creditors and accruals Taxation and social security costs 218.985 29.183 12.772 165,536 8,138 11,724 260.940 185,398 34

Reverse Rett Notes to the accounts for the year ended 31 December 2024 (continued) 15 Analysis of movements in restricted funds Asat31 December 2024 Balance at i January 2024 Income Expenditure Transfers MECP2 Duplication Fund Rett disorder alllance 2.630 19.343 (17.0931 4,880 4,861 4,861 The Fitton Trust 20,000 20,000 Singh Research 30,000 30,000 Clinical Research Funds Pears Grant 33,451 (6.993) 26,458 Total 40,942 69,343 (24.086) 86,199 Previous reportlng period Balance at I January 2023 Asat31 December 2023 Income Expenditure Transfers MECP2 Dupl1￿tIon Fund Rett disorder 311iance Use Farringdon 11,090 (8,460) 2,630 4,861 4,861 200 (200) Parent 2 Parent Programme Clinical Research Funds Pears Grant 3.056 (3,056) 48.694 8,000 4.650 (19.893) 33,451 (8,000) Total 75,901 4,650 (28,353) (11,256) 40,942 Name of restricted fund Description. nature and purposes of the fund 35

Reverse Rett Notes to the accounts for the year ended 31 December 2024 (continued) MECP2 Duplication The MECP2 Duplication Fund at Reverse Rett is a restricted fund. The fund Fund (Cure MDS) exclusively supports projetts devoted to the study and means of treatment of MECP2 Duplicationmriplication Syndrome. IOOWO 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 RSRT us. Parent 2 Parent Reverse Rett Parent 2 Parent offers grants parent to parent support as 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 resour￿$. The Reverse Rett Parent 2 Parent project is now housed under Rett Connect umbrella. Please see here for more details. https=//www.reverserett.org.uk/rett- connectl Clinical Research Fund This is a designated fund which will support UK based clinical research and the implementation of treatment for Rett Syndrome and related MECP2 Disorders in the UK. 16 Analysis of movement in unrestricted funds AsatJi December 2024 Balance at i January 2024 Income Expenditure Transfers General fund (136.899) 739.752 (786,6771 { 183,8241 (136,899) 739.752 (786,677) { 183,8241 Prevlous reportsng period Asarji December 2023 Balance at I January 2023 Income Expenditure Transfers General fund (81,788) 669,626 (735,993) 11,256 (136,899) (81,788) 669.626 (735,993) 11.256 (136,899) Name of unrestricted Descrlptlon, nature and purposes of the fund General fund The free reserves after allowing for all designated funds 36

Reverse Rett Notes to the accounts for the year ended 31 December 2024 (continued) 17 Analysis of net assets between funds General fund Designated funds Restritted funds Total Tangible fixed assets Net current assetsl{liabilities) 2,415 (186.2391 2,415 { 100,0401 86,199 Total (183.8241 86,199 (97,6251 18 Operating lease commitments The charity'5 total future minimum lease payments under non-cancellable operating leases is as follows for each of the following periods- Property Equipment 2024 2023 2024 2023 Less than one year One to five years 19 Reconciliation of net movement in funds to net cash flow from operating activities 2024 2023 Net income/{expenditure) for the year Adjustments for: Depreciation charge Decrease/(increase) in debtors Increase/(decreEsel in creditors (1.6681 (90,070) 1.207 (55,409) 75.542 1,625 68,914 (126,571) Net cash provided by/(used in) operating 19.672 (146,102) 37