Company number: 04899036 Registered charAty number". 1101971 Registered charity number (Scotland): SC043852 ACTION DUCHENNE LIllttTED ANNUAL REPORT AND FINANCIAL STATEMENTS FOR THE YEAR EM)ED 31 MARCH 21124
ACTION DUCHEIYNE LITrED FOR THE YEAR ENDED 31 MARCH 2024 CONTENTS Page Administrative and sLthitory details Message from the Chief Executive Officer R¢port of the Trustees 5-10 Independent Auditors. Accounts comprising: Statement of fjnancial activities 15 Statement of financial position 16 Ststement of cashllows 17 Notes to the financial ststements 18-27
ACTION DUCHEP4NE LIMITED ANNUAL REPORT AND FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2024 ADMINISTRATIVE AND STATUTORY DETAILS Board of Trustees Mark Silvernrdn Gary Fegan Roger Cockerton {TUrer} Emma Simmonds Anna Mabile Greg Hill Dr Victoria Plydell Chief eCutIve Offieer Florence Boulton Scientific Advisory B(Ard tkne Proftssor K Davies - Chair Professor M Wood - Vice Chair Registered Wellesley House Duke of Wellington Avenue Royal Arsenal London SE18 6SS Auditors Simpson Wreford LLP Wellesley House Duke of Wellington Avenue Royal Arsenal London SE18 6SS Company number 04899036 Charity number 1101971 SC043852 (Scotland) Solicitors Morgan Cole Bradlcy Court Park Place Cardiff CFIO 3DR Banks Barclays B&]k POBox3 77 North Stre Keighl BD213SA The Co-operative Bank Ple PO Box 250 Skelmersdale N3 6wr
ACTION DUCHENNE LITrIfTED MESSAGE FROM THE CHtEF EXEcifnvE OFFICER FOR YEAR EED 31 1CH 2024 ACTION DUCHENNE As we end another year at Action Duchenne, l am deeply proud of all we have achieved together. It h&8 been a iear of growth and progress, as we fac challenges while staying trne to our mission: creating a world where t)uchenne muscular dystrophy no longer limits lives. Our updated strategy, approved by the Board of Trustees in March 2024, reflects our renewed commitment to the Duchenne community. We promise to ke¢p pn)viding hope, sup and advocacy, and we are detennined to make the coming years transfonnative for everyone &ffected. One of our biggest Juecesses this year has been the grojvth of our 'AII-tbrough Support, programm (Our Impae¢ - Action Duchenne] which has become a vitsl lifeline for families newly diagnosed with Duchenne. Knowing how ovenvhelD]iDg a diagnosis ean bfy we've worked bard to offer tailored support from the outseL Our team made 885 contscty expanded regional support with 44 groups? and launched 4 new group coun5elling sessions. We partDered with 7 Clinies to support 82 newly diagnosed familie4 ensuring no ODe feeb alone. Additionallyy 69 young people joined our transition to adulthood programm building key skills and peer networks. Alongside our support efforts. we've made great progress in r&8earch and education. We continue lo invest in cutting-edge research, from genome editing to new treattnents. This year, we nIntained supEx)rt for key pmjects, expanded our ducational workshops to 23 locations. and created 48 bite-sized science videos for the community. These workshops help families make infornied decisions about treattnent and care. As new scientific advances bring hope, we remain committed to cnsuring the Duchenne community has access to the latest infonnation and therapies. Action Duehenne provides a saffe where we come together each year. The Annu41 Internatlonal Conference offers a chance lo s¢ep away fvm dalty life, conne wllh oihers, share 4)eriences, fmd sUPPOrt, nd have fun In o fully acclhIe environmenL
ACTION DUCHENNE LIMrrED MESSAGE FROM THE CHIEF EXECUTIVE OFFICER FOR YEAR EIWED 31 MARCH 2024 A highliglrt of 2023 was our November conference which brought together over 300 families, clinicians, researchers, and industy leaders. With 26 sessions on research and practical advice, it remains one of Europe's largest Duchenne-focused events. Patron Hary Hill also presented the AD Champion Awards, reco]IS]g our key supporters. The event rcinfor¢¢d the importance of uniting our community and advancing th¢se vitsl conversations. We've made great progress in clinical tria15 and trthent reviews. which are vital for developing new therdpies and improving outcomes for people with Duchenne. This year. Action t)uchenne has worked closely with researchers. pharmaceutical Companies. and regulators to ensurc the voices of those with Duchenne are heard. Our efforts with organisations like NICE and the MHRA have been key in securing access to life-changing treatments for many in our community. -Fundraislng remains vilal, and wee been touehÉd by our supporters. generoslty. The 'Challenge 79, campoign. launched for World Dmchenne Awareness Day* not onfy raedfmndS bul also Incrwed global awareness of Duchenn& We 4Lso collaborated wlth UK and Inlernalional organisations to ralye awarene&v. leodlng ¢0 lhe UN'S reeogntslon of 7th September World Duchenne Awareness Day - a testament to our ability to unite people worldwide for meanlngful change. AcIayowLEDGEMENTS As we celebrate these achievemenL% I want to take a moment to acknowledge that none of this would have been possible without the dedication and hard work of our team, volunteers, supporters, fundeTS. and partner organisations. l am deeply grateful to our Slaff, whose commitment and passion drive our mission forward every day. Your hard work and dedication are the foundation of everything we accomplish. To our trustees and Patrons your wisdom, guidance, and leadership have been invaluable in helping us navigate the challeng&8 of this p&st year. You have played a crucial role in keeping us on cOUe. To our volunteers, who give so generously of their lime and energy-you are the heart of our community. Your wmmitment to our cause is truly inspiring, and you help us reach more people than we could ¢ver manage on our own. To our 8UPPOrters and funders your generosity and belief in our mission have enabled us to expand our services and reach more families than ever before. Your contributions are making a real difference in the lives of those affected by Duchenne, and for thaL we are profoun(lly thankful. And to our partner orgaDisations thank you for standing with us, working with us, and &mplifying our impact. Your collaboration h&8 been crucial in moving our shared goals forwar and together we are making significant Strides towards & tUre where lives are no longer limited by Duchenne.
MESSAGE FROM CJItEF EXECUTIVE OFFICER FOR ThE YEAR EIYDED 31 MARCII 2024 LOOKING AHEAD Our vision for the next 10 years is clear: a world where Duchenne is no longer life-limitin& and everyone affected has acce&8 to the care, trlmen and supw)rt they need to live full lives. Achieving this will take continued efforL Innovatio and collaboration. but I'm confident we will keep moving forward together. Our'AII-through Support, programme remains a priority, providing tailored guidance and care forthose affected by Duchenne at every stsge of lif¢. 4¢ We're eommlued to adapting thif support as Ihe communlty's neetts evolve. We'll also keep invesllng research supporting innovath*proJects to change Ihefv(Mre of Duchenne, while eApandlng edueallonal resourcu to give famllidy the knowledge they need to make informed decision&" We will build on the success ofour international conference. making iteven more impactful by bringing together more volS from around the worlil Clinical trials and treatment reviews will also T¢main a key fo¢$ as we work to ensure the best possibl¢ care for the Duchenne community. Join me in shaping tbe future for th{e affected by Du¢henn& Stay engag¢d, support our mission, and explore new opportsnitie5 to coll#bor81& Together, we Can creat¢ a better future for everyone livimg with Duchenn& Florence Boulton Chief Executive Officer
ACTION DUCHENNE IIMITED REPORT OF THE TRUSTEES FOR YEAR ENDED 31 MARCH 2024 The Trustees present their report and the financial statements forthe twelve months ended 31 March 2024 which have been prepared in acwrdance with accounting policie5 set out in the notes to the accounts and comply with thc charity's governing document, the Charities and Trustce Investment (Scotland) Act 2005, the Charities Act 2011, the Companies Art 2006, the MemoraTJdum and Articles of Association and Accounting and RetK)rting by Clwities: Statement ofReconunend¢d Practice applicable to cl)arities preparing their accounts in accordance with the Financial Reporting SLqndard applicable in the UK and Republic of Ireland (FRS 102) (effective I January 2019). Reference and administrative detsils Action Duchenne Limited is registered under th¢ Companies Act as a company limited by guardntec (company number 04899036). The Clwity registrdtion number is 1101971 (England and Wales) and SC043852 (Scotland). The registered otTAce address which is also the principal office address is Wellesley House, Duke of Wellington Avenue, Royal Arsenal. London SE18 6SS. The governing documents are the Company's Memorandum and Articles of A3sociation. Each of the members has undertaken to contribute up to £1 in the event of dissolution. The board of Trustees manages the company on behalf of the members and the authority to appoint and remove Trustees is vested in the board. The following persons were Directors and Trnstees during the year: Mark Silvernian Gary Fegan Roger Cockerton (Tre&surer) Victoria Penrice (resigned on 29 Febrnary 2024) Emma Simmonds (appointed 8 February 2024) Anna Mabile (appointed 25 June 2024) Greg Hill (appointed 25 June 2024) Dr Victoria Pleydell (appointed 25 June 2024) The Board is delighted to welcome three new members and express theirthanks to Victoria for her contribution as charity secretary. Our new Tnjstees have been briefed with their legal obligations under charity and company law, the content of the Memorandum and Articles of Association, the committee and decision- making processes, the business plan and recent financial perforniance of the Charity and any ¢hang¢s therein. This includes the delivery of Charity Commission publications explaining their role. The Board would also like to thank all Patrons, statT and volunteers p&8t and pr¢senL who have given their time and energy to Action Duchenne. Introduetioll We, the Trustees of Action Duchenne, are pleas to present our report for the year ending 31 March 2024. This past year has seen continued progress in our core worL supported by strong governance and a clear long-terni vision for the charity. Our key priorities are to ¢nsure that our financial resources, governance, and operations a well-aligned with our mission to create a World where Duchenne muscular dystrophy no longer limits lives.
ACTIO1¥4 DUCHENNE LIMrrED IIEPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2024 Governance and leadership Action Duchemie is governed by a Board of Trustees. who make sure the charity follows its legal, regulatory, and ethical obligations. Throughout 2023124. the Trustees held regular meelings to oversee the charity's work, monitor progres& and approve key plans. This year, we were delighted to welcome three new Trustees-Anna Mabile. Greg Hill, and Dr. Victoria Pleydell-who bring valuable experience in resear¢fy finance, and healthcare. Their expertise strengthens our llderShiP team &8 we prepare for the next stage of our developm¢nt. All Trustees have been fully briefed on their responsibilities under charity and company law. and we arc planning a revi¢w of our governance to ensure It Temains fit for the future. We remain committed to ensuring our Board reflects the div¢T5ity of the Duchenne community. alongside professional expertise. Strategie oversight and long-terni plaDDiDg Our long-tmn strategy is focused on providing lasting and meaningful support for people affected by Duchenne rnuscular dystrophy. As we complete our 2021-2024 strategy, we ar¢ now working on a new three-yeaT plan. This will build on our successes while addre&8ing the new challenges our community faces, especially in tern of access to tr¢atn]ents and support. The Ttee5 are focused on making sure our prwammes and initiatives continue to support our long-temi goals. Our key areas of focus include.. Sustaining the 'All-through Support, programme: Making sure we can continue to provide lifelong, tsilored support to those affected by Duchenne. Research and education: Continuing to invest in high-impact research and educational initiatives that help improve treatments and care. Partnerships and advocacy: Strengthening collaborations with Internation p8rtners to maintsin our role as leaders in the fight for better treatments and care standard8. About 118: our vision and objectives Action Duchenne h&s a very clear vision: a world where liv are no longer limited by Duchenne muscular dystrophy. We have three core objectives in the next year and are woud to spend g).6p in every £1 raised on our charitable activities: Building a community by uniting and supporting families. educating about Duchenne, and raising the profile of the condition. Giving families, clinicians and the wider community the most accessible and up to date inforn]ation in the right at th¢ right time Funding impactful research and projects that make an immediate difference and campaigning for these ¢h2nges. It is clear that despite the best efforts of Action Duchellne and its parthers. there is still an unmet need for support and delivering the right inforniation at the right time. We hav¢ idcntified opportunities to expand ow All-througb-Supp)rt" to the entire community and revatnp our communications strategy and these will be major are&8 of focus for Action Duchenne.
ACTION DucHE LIMrrED IIEPORT OF THE TRUSTEES FOR THE YEAR KNDED 31 TriARCH 2024 Finaneial revlew The Tnjstees are SpOnSIble for ensuring the fllvancial health of the charity. and we are pleased to report that Adion Duchenne is in a stable financial position. In 2023124 the Charity had a net deficit forthe year of £29,979 following a sury)lus of £l31.019 in the previous year. Scientific educatio research, supporting families and grants payable increased by 4Yo from £508,861 to £527,534. Cost of events and general fundraising increased by 69Yo from £35,725 to £60,446, which compounded the deficit for the year Income for the year totslled £612,379, this is a decrease of14% on the previous year (£711,864 in 2023), with amounts generated from donations and legacies decreasing 12% to £257,546 for the year (£293.483 in 2023), income from other trading activities, increasing 3/Tr to £209,235 for the year (£160,911 in 2023) and a decre of 470/0 to £135,819 (£257,442 in 2023) in income from charitable activities. Expenditure on charitable activities was £581.912 in the year (2023: £545.120), including allocated support costs. This represents .60/th of total expenditure, compared to 93./0 in the previous year. As well as the research organisations listed alx)ve, this includes Eurordis membership, World Duchenne Organisation membership and Genetic Alliance UK membership. Reserves The Finance Committee, on behalf of the Board of Tn]stees, monitors the level of unrestricted reserves in the general fimd. which is compared to the minimum level of required reserves calculated in accordance with the reseryes Policy. This is based on six months of charity expenditure of £207,700, which is aimed at providing cover in the event of a sudden reAluction in incom¢: To allow time for reorganisation in the event of a downturn in income. To protrct ongoing work programme To allow the Charity to meet its obj¢¢tives. To ensure the General fLmds are allocated to meet the Charity's Aims and Objectives. Unrestricted erVeS at the year*nd are £521,436, up from £480,195 in March 2023. and restricted Teserves are £nil (2023: £71220). The unrestricted reserves exceed the minimum required under the policy. Grant making policy The Charity has a pr0me of grant making to provide funds for new research towards fmding viable treatrnents and ultimately curing Duchenne muscular dystrophy. Our research strategy sets out five areas. where we will focus our investment in research going forward: Innovation- we will c17-f]d novel researcb projects Outcome measur&8 and natural history data Investing in tissue collection and biobanking Standards of Care - continuing our long-standing involvement in supporting the best possible multidisciplinary standards of care Maintsining the UK DMD Registry The rapidly changing developments in international research demand a constant updating ofthe Charity's grant making polÉcy. Our peer reviews grant applications as part of a two-stage review Pro$$ and systematically reviews and agrees its research and grant making policy during the development of its annual business plan.
ACTION DUCHENNE UMITED REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2024 Investment policy The Charity's assets will be invested in accordance with the Trustee Act 2000 and the trust instrument. Any investsnents will be managed prudently and in such a way as to provid¢ sufficient inrne to enable the charity to cany out its purposes effectively both in the short terni and over the longertern). In order to spread the level of risK were split and placed on short terni time deposits with different end dates to enable easy access to funds. While the Charity's overall inv&sknent policy has been set by thc Board of Trustees as a whole. responsibility for ongoing investment matters has been delegated to the FiDanc¢ Committee. Internal control and prnce8se8 The systems of internal controL put in place by the Trnstees. are designed to provide reasonable but not absolute assurance against material misstatement or loss and include: Financial TeForts are reviewed at th¢ quarterly Board meetings as part of meaSUS to ensure that the resources of the Charity are effectively allocated and utilised Expenditure approval limits beyond which approval must be sought from the National Director and then the Finance Committee and/or the board of Trustees The management team prepare a business plan with internally audited yearly accounts and projections of budget expenditure at the end of each year. This is fully discussed by the Finance Comrnittee and then at a specially Conven meeting of the Board of Trustees Chain of command overseen by the Treasurer, delegation of authority and segregation of duties Ensuring that the Clwity submits Annu RertS to the Charity Commission and Companies House in line with cU¢t standard reporting procedures Trustees are encourdged to undertake Trustee and governance training by accredited Providers of education to the charity sector Charity procedure5 (including financial control) Equality. diversity and inclusion Social media and digitavelectronic communications The Board of Trustees me¢t face to face or via remote conferencing at least fourtimes a year. While the Charity aims to involve parents and those living with Duchenne muscular dystrophy as members of th¢ Board of Trustees, a balance is sought by recruiting non-family members who have other scientific, business, and professional expertise. The Board is supwrted by four committees, each with specific tern)s of reference: corporate engagemenL audiL finance & risk, delivery & r&%earch, and conference.
AcfIoi¥4 DUCHENNE LITrtrTED REPORT OF THK TRUSTEES FOR THE YEAR ENDED 31 MARCH 2024 Trustees, re5ponyibilities The Trustees (who are also Directors of the chlty for the purposes of company law) are responsible for preparing the Truste¢s' Am]ual Rewrt and t financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Acceptsd Accounting P17Ctice). Company law requires the TTUStees to prep8tt financial slatements for each financial year which give a twe and fair view of the state of affairs of the charitsble company and of the incoming resources and application of resour¢e& including the income and ¢xpenditur¢. of the charitable company for that period. In preparing these financial sLqtements, the Trustees are required to: select suitsble accounting policies and then apply them consistently: observe the methods and principles in the Charities SORP. make judgments and estimates that are reasonable and prudent. state whether applicable UK Accounting Standards have been follow¢4 subject to any material departS disclosed and explained in the financial statements. and prepare the ffftancial statements on the going concern basis unless it is inappropriate to presume that the charitable company will continue in business. The Trustees are responsible for keeping proper accounting records that disclose with reasonable accuracy at any time the financial position ofthe charitable company and enable them to ensure that the financial statements comply with the Cornpanies Act 2006. They are also responsible for safeguarding the &8sets of the charitable company and hence fortaking reasonable steps forthe prevention and Ition of frnud and other irregularities. In so far as the Trustees are aware: there is no relevant audit inforniation of which the charitable company's auditor is unaware. and the Tn]stees have taken all steps that they ought to have taken to make themselves aware of any relevant audit inforniation and to establish that the auditor 1$ aware of that infonnatio The Trustee5 are responsible for the maintenance and integrity of the corporate and financial inforniation included on the charitsble company's website. Legislation in the United Kingdom governing the preparation and dissemination of financial statements may differ from l¢gislation in other jurisdictions.
ACTION DUCHENNE LIMrrED REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2024 Auditor Simpson Wreford LLP were reappointed as Auditor during the y&qr and have expressed their willingness to continue in that capacity. The alM)ve retK)rt h&$ be prepared in accordance with the special provisions of Section 419(2) of the Companies Act 2(K)6 relating to small compani&8. [AkIllg Ahead Looking forwrf the Trustees are committed to building on our SUcceeS and ensuring the charity remains sustainable for the long tenn. Our next phe of developmt will focus on maintsining financial stsbility. expanding our support services. and continuing to lead the way in research and advocacy for the Duchenne community. We will work closely with the management team to monitor prOeSS and make sure we achieve our goals while maintaining strong governance and financial health. Signed on behalf of the Board of Directors. Roger Cocke Treasurer Date: Kq ¥i-v 10
INDEPENDENT Ai]DrroRS9 REPORT TO THE TRUSTEES OF AcfIoN DUCHENNE LlllllTED FOR THE YEAR ENDED 31 MARCH 2024 Opinion We have audited the financÉal statements of Action Duchenne Limited (the 'Charitable company.) for the year ended 31 March 2024 which comprise the Statcm¢nt of Financial Activities. Statement of Financial Position, C&8h Flow StaternenL and the related notes to the financial statements, including a summary of si1f1¢9nt accounting policies. The financial reporting framework that has Ixen applied in their preparation is applicable law and Unitd Kingdom Accounting Standard8, including Financial Reporting Standard 102: The Financial Reporting Standard applicable in thc UK and Republic of Ireland (United Kingdom Generally Accepted Accounting Praclicc). In our Opinio the financial statements: give a true and fair view of the state of the Chartty's affairs as at 31 March 2024 and of its incoming resources and application of resouTces for the year then ende(L have be¢n properly prepared in accordance with United Kingdom Generally Accepted Accounting have been prepared in accordanrK with the requirements of the Companies Act 2006. Basis for opinion We conducted our audit in accordance with International Standards on Auditing (UK) (ISAS (UK)) and applicable law. Our responsÉbilities 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 Charity in accordance with the ethical requirements that are relevant to our audit of the financial statements in the UK, including the FRC'S Ethical Stsndar(L and we have fulfilled our other ethical resp)nsibiliti¢s in accordance with these requirements. We believe that the audit evidence w¢ have obtained ts sufficient and appropriate to provide a basis for our opinion. Conclusion8 relating to golng eoncern We have nothing to report in respect of the following matters in relation to which the ISAS (UK) require us to report to you where: the Trwt¢e5' use of the going concern basis of accounting in the PLEparation of the financial ststements is not appropriate. or the Trustees have not disclosed in the financial statements any identified material uncertainties that may cast significant doubt about the Charity's ability to continue to adopt the going concern basis of accounting for a period of at least twelve months from the date when the financial statements are authorised for issue. Other information The Trustees are responsible for the other inforntion. The other infonnation comprRses the inforn]ation included in the annual report othu than the fu)CIal statements and our auditor's report thereon. Ow opinion on the financial statements does not cover the other inforn]ation an(L except to the extent otherwise explicitly stated in our reporL we do not express any forn] of assurance conclusion thereon. In connertion with our audit of the financial statements. our responsibility is to read the other inforn)ation and, in doing so, consider whether the other inforntion is materially inconsistent with thc financial statements, or our knowledge obtained in the audit or otherwise appears to be materially misstate(L If we identify such material innSiStenC1eS or apparent material misstatement4 we are r¢quired to d¢terniine whether there is a material misstatement in th¢ fllwncial statements or a material misstatement of the other inforn]ation. If, based on the work we have perfomed, we conclude that there is a materAal misstatement of this other lnf0nnatio we are uired to rep)rt that fart. We have nothing to report in this regard. 11
INDEPENDENT AUDITOIIS? REPORT TO THE TRUSTEES OF ACTION DUCHENNE LIhffTED FOR THE YEAR ENDED 31 MARCH 2024 Matters on whfi¢h Jve are required to report by exception In the light of the knowledge and understanding of the Charity and its environment obtained in the course of the audi( we have not identifIed matsrial misstatements in the Trust4, AJJnual Report. We have nothing to report in respect of the following matters in relation to whi¢b the Companies Act 21J)6 requires us to report to you if, in our opinion: adequate accounting records have not been kept orreturns adequate for our audit have not been received from branches not visited by us" the financial statements are not in agreement with the accounting e0rdS and returns; we have not obtained all the inforniation and explanatio necessary for the purposes of our audit" the director5 were not entitled to prepare the financial statements in accordanee with the small companies, regime and take advantage of the small Companies, ¢x¢mption in preparing the directors, rq)ort andtake advantage ofthe small companies, exemption from the requirement to prepare a strategic report. Responsibilities of the Trustees As explained more fully in the Trustees. responsibilities stat¢ment set out on page 10, the Trustees are responsible for the preparation of the financial statements and for being satisfied that they give a tru¢ and fair view, and for such internal control as they deterniine is necessary to enable the preparation of fjnancial statements that are free from nterial misstatanenL whether due to fraud or ettor. In preparing the financial statements, the Trugtees aTr reSnSIble for assessing th¢ Clwitable company's ability to continue as a going Conc di5closin& as applicable, matters ftlated to going concern and using the going concern basis of accounting unles8 the Tn3Stees either intend to liquidate the Clwity or to cease operations, or have no realistic alternative but to do so. Our responslbilltles for the audit of tbe financial ststements The Trustees have eleGted for the financial statements to be audited in accordance with the Charities Act 2011 rather than the Companies Act 2006. A¢¢ordingly. we have been appointed as auditor under section 144 of the Charities Act 2011 and report in accordance with regulations made under section 154 of that Act. Our objectives are to obtsin reasonable assurance about whethff the financial statements as a whole are free from material misstatemenl whether due to fraud or error. and to i&8ue an auditors. report that includes our opinion. Reasonable assurance is a high level of assurance but is not a guarantee that an audit conducted in accordance with ISAS (UK) will always detect a material misstatement when it exists. Misstatements can arise from fraud or error and are considered material if, individually or in the aegate, they could reasonably be expected to infiuence the economiG d¢cisions of users taken on the basis of these financial statements. A fiwther description of our responsibilities for the audit of the fEnancial sWements is locatsd on the Financial Reporting Council's website at: [www.frc.org.uk/auditorsresponsibilities]. This d¢s¢ription foTms part of our auditor's 12
INDEPEIYDENT AiIDITORS' REPORT TO THE TRUSTEES OF ACTION DUCHENNE LJMfTED FOR THE YEAR EM)ED 31 MARCH 2024 Extent to which the audit wag eonsidered capable of detectlng irregularities including fraud the engagement parlner ensured that the engagement team collectively had the appropriate comFtence. capabilities, and skills to identify or JEC0)Is¢ non-compliance with applicable laws and regulations" we identified the laws and regulations applicable to the Charitable company through discussions with directors and other managemenL and from our commercial knowledge and experience of membership organisations and support servic&s sector. we focused on specific laws and regulations which we considered may have a direct material effect on the fmancial statements or the operations of the Charitable company, including the Companies Act 2006, data protection and Arts Council regulations. we assessed the extent of compliance with the laws and regulations identified above through making enquiries of management and inspecting legal correspondence. and i(kntified laws and regulations w¢r¢ communicated within the audit tsam regularly and the team remained alert to instances of non-compliance throughout the audit. Audit respon8e to risks identified We assessed the susceptibility of the Charitsble company's financial statements to material misstatemen¢ including obtaining an understanding of how fraud might occur, by: making ¢nquiries of management &8 to where they considered there was susceptibility to fraud their knowledge of actual, suspected, and alleged fraud" and considering the internal controls in pla to mitigate risks of fraud and non-compliance with laws and regulations. To address the risk of fraud through management bias and override of controls, we: perforn]ed analytical prOClureS to identify any unusual or unexpected relationships. • test journal entries to identify unusual transactions" assessed whether judgements and assumptions made in detennining the accounting estimates were indicative of potential bias; and investigated the rational¢ behind SIlficant or unusual transactions. In r¢SnSe to the risk of irregularities and non-compliance with laws and regulatiotL8, we designed procedures which included, but were not limited to: aIng fmancial statement disclosur¢s to underlying supporting documentstion and. enquiring of management as to actual and potential litigation and claims. reviewing correspondence with regulators. Thfflt are inherent limitations in our audit procedures described above. The more removed that tsws and regulations are froni financial transactions, the less likely it is that w¢ would become awatE of non- compltancG Auditing standards also limit the audit procedures required to identAfy non-compliance with laws and regulations to enquiry of the diTectors and other management and the inspection of regulatory and legal corresponden¢4 if any. Material misstatements that arise du¢ to fraud can be harder to detect than those that arise from em)r as they may involve deliberate concealment or collusion. 13
INDEPENDENf AiiDITORS' REPORT TO ThE TRUSTEES OF AcfJoN DUCHENNE LIMITED FOR THE YEAR ENDED 31 MARCH 2024 Use of our re)rt This rert is made solely to the Charitsble company's Mernbs. as a body9 in accordance with Chapter 4 of the Charities (Accounts and Reports) Regulations 2(K)8. Our audit work has been undertaken so that we might state to the Charitable company's mem1rS those matters we are required to state to them in an auditor's rq)ort and for no other purpose. To the fullest extent pemiitted by law, we do not accept or &8sume TesEK)nsibility to anyone othw than the Charitable company's members as a bodys for our audit work for this repo¢ or for the opinions we have fornied. Miehael Broder, SenAor Statutory Auditor For aDd on behalf of Simpson Wreford LLP, Statutory Audilor Wellesley House Duke of Wellington Avenue Royal Arsenal London SE18 6SS Dated: 5 Zoz* Simpson Wreford LLP is eligible to act as an auditor in tern]s of section 1212 of the Companies Act 2006. 14
AcfioN DUCHEiYNE Lii¥ifTED STATEMENT OF FINANCIAL ACTivrrIES (Incllldlng Jtatement of Ineome expenditsre) FOR YEAR ENDED 31 MARCH 2024 2024 2024 Restrictsd funds 2024 Totsl funds 2023 Total funds Unresticted funds Notes ncome and endowments from: Donations and legacies Charitable activities Other trading activities Investments Other- Government lts 214218 43,328 135,819 257,546 135,819 209,235 9.779 293,483 257,442 160,911 28 209.235 9,779 Total income 433 179 147 612 Expellditure on: Raising funds: Cost of events and g¢neral fundraising Charitable activities.. Campaigning and education, Research, supporting families, and grants payable Improved management and medical care 15 60,446 60,446 35,725 208,384 85,086 293,470 128,208 68,783 165,281 234,064 380.653 Total expendilure 91 642 Net incomel(expenditure) 41,241 (71,220) (29,979) 131,019 Trattsfers between funds Net movement ID funds 41 97 Reeonciliation of funds: Balance at l April 2023 480 195 551415 420 396 Balance at 31 March 2024 The notes on pages 18 to 27 fomi part of the fjnancial statements. 15
ACTION DIJCHENNE LIMrrED STATEMENf OF FINANCIAL PoS10N AS AT 31 MATCH 2024 Notss 2024 21123 Fixed assets Tangible assets Investments 1.620 2.161 1,622 2,163 Current assets I)ebtors Cash at bank and in hand 62,368 534 978 597,346 6,948 625 039 631,987 18 Current liabiliti Creditors due within one ycar Net current assets 519 814 549 252 Total assets less current liabilities 521.436 551.415 Net &ts 17 551415 Represented by. Restricted fund8 Unrestricted funds 12 13 71.220 480 195 521436 551415 The company is entitled to the exemption from the auditrequirement contsined in section 477 ofthe Companies Act 20(, for the period ended 31 March 2024. No member of the company has deposited a notice, pursuant to section 476. requiring an audit of these OUnts under the requirements of the Companies Act 2006. The directors acknowledge their ttsponsibilities for complying with the requirements of the Companies Act 2006 with respect to accounting ordS and the preparntion of fitwicial statements. These acUnts have been prepared in accordance with the provisions applicable to company's subject to the small companies. regime, Thef behalf by. . ents on pages 15 - 27 were approved by the Trustees on .... . . Lit. and Sied on their Roger Cock rusteeTfre2surer Registered charity Registered charity - ber- 1101971 C043852 (Scotland) 16
ACTION DUCHENNE LIMrrED STATEMENT OF CASH FLOWS FOR THE YEAR ENDED 31 MARCH 21)24 2024 Total 2023 Total Nots8 Cashllows from operating activities: Net cash provided by operating activities 17 99 40 194066 Casbfloivs from investlng activities: Dividends, interesL and rents from investments Purchase of equipment Proc¢eds from disposal of tangibles 9.779 28 Net (used in) by investing activites 28 Cashllows from financing adivities: Loan received Interest paid Net c&sh {used in)Iprovided by financing activites (719) Change in cash and cash equivalents in the reporting period (90,061) 149,111 Cash and c&8h equivalents as at l April 2023 625 039 475 928 Cash and cash equivalents as at 31 March 2024 17
ACTION DUCHEIYNE LtMfTED NOTES TO THE FINANCIAL sTATEmEs FOR THE YEAR ENDED 31 MARCll 2024 l. Aeeounting poli¢ies a) Company infonnation-Action Duchenne Limited is a privatecompany limited by guarantee. incorporthd in England and Wales (Company Registration Number: 04899036) and registered as a charity with the Charities Commission (Registered Charity Number: 1101971) and in Scotland (Registered Chlty Number - Scotland: SC043852). The principal and registered office is Wellesley House, Duke of Wellington Avenue. Royal Arsenal, London SE18 6SS. b) The financial statements have been prepared in accordance with accounting policies set out in the notes to the accounts and comply with the charity's governing documen¢ the Charities Act 2011 and Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financi Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (etTective l January 2019) - (Charities SORP FRS 102), th¢ Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) and the Companies Act 2(K)6. Action J)uch¢nne Limited meets the definition of & public benefit entity under FRS102. Assets and liabilities are initially recOls¢d at historical cost or transaction valu¢ unless otherwise sthted in the relevant accounting policy note(s). The financial statements are prepared in sterlin& which is the functional currency of the company. Monelary amounts in the fmancxal statements ar¢ rounded to the n&qrest £. The financial statements have been prepared under the historical cost convention, modified to include the revaluation long-tern] leasehold property and certain financial instnllnents at fair value or amortised cost. The principal accounting policies are set out below. The effects of events relaling to the twelve months ended 31 March 2024 which O¢CUTred before the date of approval of the financial statements by the Truste&s has been included in the financial statements to the extent wuired to show a true and fair view of the state of affairs &8 at 31 March 2024 and the results for the year ended on that date. c) Going Concern - at the time of approving the financial statements, the Trustees have a reasonable ¢xpedation that the charity has adequate rtsources to continue in operational existence for the foreseeable future. Thus, the Trustees continue to adopt the going concern basis of accounting in preparing the financial statements. d) Donations and legacies are accounted for when receivable by the Charity. Revenue grants ar¢ credited to the Statement of Financial Activities (SOFA) when the Charxty is wnsidered to have entitlement to th¢ ass¢ts. Et is probable that the resources will be re1v and the monetary value of incoming resources can be measured with suffici¢nt reliability. If grants are related to a fLrture donor-Émposed period, the income is defeffed until that period. Other income is accounted for on an accn]al basis. e) Direct chsritable expenditure includes the direct Costs ofthe activities. Support costs are allocated per note 15 on the basis of time spent. Fundraising costs are th¢ direct costs of obtsining funds, and attributable allocated support costs. g) Governat)ce costs include those costs incurred in the governaftce of the Charity, such as auditors, fees. 18
ACTION DUCHENNE LIfvirfED NOTES TO FINANCIAL STATEMEN13 FOR THE YEAR EI¥DED 31 MARCH 2024 l. Accounting policies (continued) h) Progranllne related investments are included in the accounts at cost less amounts written off as grants payable. i) Fixed assets are only capitalised were their values exceed £500. Fixed assets are ststed at cost and depreciation is calculated so as to write off the cost of an &8seL less its estimated residual valu4 over the eful economic life of that Set at a rate of 250/0 reducing balance. j) Impairnient of fixed assets - at each reporting date, the charity reviews the carying amounts of its tangible assets to detern]ine whether there is any indication that those assets have suffered impairnient loss. If any such indication cxists, the recoverable amount of the asset is &8timated in order to deterniine the extent of the impaimient loss (if any). k) DebtOTS- trade and other debtors are recognised at the 5cttlement amount du¢ after trade discount offere Prepayments are valued at the amount prepaid net of any trade discounts due. l) Casb and cash equivalents - include cash in han(t deposits held at call with banks, other short-terni liquid investtnents with original maturities ofthree months or less and bank overthafts. Bank overdrafis are shown within borrowings in current liabilities. m) Financial instruments - the charity only has financial &8sets and liabilities of a kind that qualify as basic financial instruments. BlC financial instruinents are initially recognised at transaction value and subsequently measured at their settlement valu¢. n) Creditors and provisions- are recognised at the Int where the charity has a present obligation resulting from a past event that will probably result in the transfer of fim(t8 to a third party and the amount due to settle the obligation can be measured or estimated reliably. Creditors and provisions are nornially recognised at their settlement amount after allowing for any trade discount due. All expenditure is accounted for on an accruals basis and includes irrec4)verable Value Added Tax. rants payable are payments made to third parties in the furtherance of the Charity's objectives. Single or multi-year grants are reCOlsed as resources expended when a ant commitment is made without Conditio or when the condition will not in practice allow the chlty to avoid the liability. Perforniance related grants are charged to SOFA as fOrnianCe conditions are met. o) Operating le&8e commitments- rentals paid under opernting Iwes are charged on a straight-line b&8is over the lease tern]. p) Employee benefits - the cost of any unused holiday ¢ntitlement is recognised in the period in which the employee's services are received. q) Pension scheme- the Charity provides a defined contribution scheme for all new employees, the assets of which are held separately from those of the company in an independently administered fund. Contributions to this scheme are charged to the InMe and expenditure account as they become payable. r) Redundancy payments - the Charity reco]SeS redundancy payments relating to the early tennination of an employee or group of employees immediately as an expense in the SOFA when there is a legal or constructive obligation to pay it. 19
ACTION DUCHENNE LIMITED NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2024 l. Aecounting p)lieies {contiDued) s) Fund accounting- General funds a unrestricted funds which are available for use at the discretion of the Trustees in furtheranc¢ of the general objectives of the charity which have not been designated for other purposes. Restricted funds made to the charity are to be used in accordance with specific restrictions imposed by donors. The cost of raising and administering such funds are charged against the specific fun<L The aim and use of each restricted fund is set out in the notes to the financial ststements. 2. Employees Costs to the company were as follows: 2024 2023 Gross wages: - projects non-projects stsff pension Employer's Nl contributions 266.713 41.810 7,693 242,636 26,615 5,847 The defmed contribution expense is allocated between restrictsd and unreskncted funds in accordance with the allocation of wages and salaries costs. There was one employee at Action Ducbenne Limited Who remuneration exceeded £60.(X)O. During the year redundancy payments totslling £nil (2023: £nil) were made to employees. Th¢ average nuMTrr of full-time employe&8 during the year was 9.75 (2023: 9) analysed as follows: 2024 Number 2023 Number Management . FTE Research - FTE Supporting families - FTE Fundraising - FTE AdvocacylCampaign5 - FTE 5.35 3. Net ineoming resources is stated after charging 2024 2023 Auditors. fees Independent examination and accountancy fees I)epreciation 8,100 12.756 7,800 12,646 20
ItON DUCHENNE LIMTTED NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2024 4. Analysis of income and eDdoJvments Unrestficted fllnds Restricted funds 2024 Total 2023 Total DonatioJJ8 and legaeies - Grants of a g¢neral nature - Membership subscriptions - Fundraising income - Gift Aid 43,328 43,328 33,862 162,308 18.048 128,814 10,012 142,160 l2.496 33,862 162.308 18.048 Charitable activities - Perfornlance related grants - Other 139,819 l39,819 257,442 Other trading activities - Fundrnising events - Non-charitable trading activities - Shop income IDve5tments 209.235 209,235 160.911 9.779 9,779 28 Other- Government grants 179 147 612 5. Tangible #88ets Computer equipment & fittings luipment Totsl C05t At l April 2023 Additions Disposals 2.772 1,425 4,197 31 March 2024 Depreciation At l April 2023 Charge fyr the year Disposals 1,213 390 823 151 2,036 541 At 31 March 2024 974 Net book value At 31 March 2024 At 31 March 2023 21
AcfioN DUCHENNE LKMITED NcyfES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2024 & Iovestments 2024 2023 Programme related finvestments ConvertibI¢ loan note in Halo Therapeutics LLC Less: treated as m paid 2012 225,000 224 999 225,000 Halo Therapeutics is a clinical-stage biopharniaceutical firni focused on developing innovative therapies for rare fibrotic diseases such a Duchenne Muscular Dystrophy. The proarnMe has now merged with DART to ensu tP protection in anticipation of FDA approval. 2014 saw an application being made to the US regulatory body that included nonclinical study reports, phanna¢okinetic4 hunwl safety, and biomarker data from the DMD clinical program. and a comprehensive analysis and summary of the year's activity. There has been no communication from Halo Therapeutics Tegarding additional fjnancing arrangements. Th¢ Trustees are therefore unable to consider the fair value of this holding and it should remain valued at cosL 2024 2023 Other investmellts 1.371 Ordinary slwes of £O.001 PepGen Limitd (company number 11170794) is a company focused on biotech res&vch and developmenL to improve the delivery and effectiveness of exon skipping dnjgs &8 a way of restoring dystrophin. In April 2018. Action Duchenne was donated a number of sl)ares inthe comFWly in reci)gnition of previous SUprt and funding to the University of Oxfort which amounted to a grant of £48,000 in April 2017. In December 2020 PepGen Limited participated in a $45m Series A funding round led by RA Capital Management with an exchange of shares originally denominated in Sterling to US DollaTS in PepGen Inc. In August 2021 PepGen Limited announced an IPO closing of $112.5m crnlssover financing to advance transforniative therapies for ]Mmimuscular diseases that resulted in an increase in our shwEholding OnallY 1,371 to 13,467. The shares are listed on NASDAQ with a value of CS9 giving an ovcrnll value to our holding of $121203. However, there is a restriction as to when shares can be sold. In view of the high-risk nature of this type of investment the Board has decided not to recognise the value of this holding until a decision is reached whether to keep the shares once p¢rniitted to sell them. 22
A10 DUCHENNE LIMITED NOTES TO THE FINANCIAL STATEMENV FOR THE YEAR ENDED 31 MARCH 2024 7. Debtors 2024 2023 Trade debtots Other debtors Prepayments 32,574 5,755 4,385 506 8. Creditors: gmounts falling due Ivithin one year 2024 2023 Trade creditors AccnMls and deferred income Tax and social security Other creditors 4.803 61.254 7,146 29 1,062 78,158 Deferred income included above relates to donations totalling £nil (2023: £nil). and grant income Telated to the following projects: Jointly SuprtIng Newly DIaoSed £51,546 (2W23: £16,965) and Corporate Sponsorships £nil (2023: £35,0(K)). Donation inrA)me is def¢ed when it relat¢s lo a specific event tsking pla¢e in the following period. Grant income is deferred in aordanCe with the grant dUMentation period. 9. Trustees, expenses and indemnity insllranee A Trustee may receive reimbursement of reasonable out-of-pockct eXpenS actually incurred in Tunning the charity. In 2024, the total out-of-pocket expenses reimbursed was £483 {2023: £392) for travel and accommodation. No indemnity insurdnce was paid by the company on bchalf of the Trustees. No Trustees received any remuneration from the Charity during the year. 23
ACTION DUCHENNE LIMITED NOTES TO THE FINANCIAL STATEMEIYIS FOR THE YEAR ENDED 31 MARCH 2024 10. Control relationships The company is limited by guarantee with the liability of the members limited to £1 each in the event of a winding up. Consequently, no Trustee or 0Up of Trustees has overall control of the company. 11. Other professional servie¢¥ provided by the auditor In common with many other businesses of our size and nature. we use our auditors to assist with the preparation of the financial statements. 12. Restricted funds The Charity has a number of restricted funds which are for future use. The movements for the year are as follows: At l April IDeoming 2023 Resources Outgoing Resources Transfers At 31 March 2024 Restricted funds: Nation Lottery Fund 29,462 135,819 Supporting Families 7.540 7,7(K) Contact a Family 15.138 4,360 31 Transition to Adulth¢)od 19.080 68 179 147 (165,281) (15,240) (19,498) 50 Detsils of funds National Lottery Fund - We received a >t of £480.130 from the Governmen( in partnership with the National Lottery Community Fun(L over two years to support the 'AII-through Support, programme, the first of its kind for the Duchenne community. Launched in October 2021, the prOe ensures that every family facing a Duchenne diaOSiS can immediately access a support network and resources during this difficult time. Additionally, a smaller of £8,173 was awarded in SeptemEer 2023 from the All-through Support- Lottery Cost of Living Grant. The pilot programme completed in 2023124. Supporting Famllies Through Diagnosis aDd Imp)ssRble Decisions (previously called Science on Tour) - This projecL funded by a wup of pham1aceutl companies, completed its third year in March 2024. It's part of the 'AII-through Support, pilot pmarnMe and helps families through difficult decisions after a Duchenne diagnosis. Contact a Famfity - This project has set up peer-to-peer supp(wt UpS where parents. grandparents, siblings, and those living with Duchenne Can come together to share their experiences and support each other. These groups are thriving and cover itnportant topics such as going back to school. anxiety, declining mobility, and loneliness. They provide a vital. safe space for our community. Transltlon to Adulthood - Also supp)rted by pharnlaceutical companies, this project finished its second year in March 2024. It's part of the 'AII-thTh)ugh Support, pilot programme and help5 young people with Duchenne as they move into adulthood. 24
NOTES TO THE F]NANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2024 13. Unrestrieted funds General Fund At l April 2023 Income Expenditure Transfer 480,I95 433,232 (391.991) At 31 March 2024 The General Fund- Funds allocated to pursue the CharAty'S aim of fmding a cure for Duchenne, bring new medicines for Duchenne to the nwket and to enable us to continue to &qmpaign for gr¢ater standards of care for those with Duchenne. 14. Analysis of net assets betwem funds Unrestricted Restricted funds funds 2024 Total 2023 Total Fixed assets Current assets Current liabilities Non-current liabilitiC5 1,622 597,346 (77,532) 1,622 597.346 (77.532) 2,163 631,987 (81735) 25
NOTES TO THE FINANCIAL STATEMENTS FOR YEAR EP4DED 31 MARCH 2024 IS. Analysts of resources expended 2024 2023 Support costs". Bank charges and interest Insurance Wages and salaries Printing, postage and ststionery Training, recruitment and other staff costs Computer costs Storage Telephone and internet costs Depreciation Governance costs Professional fe Miscellaneous expenditure 3,951 1,666 340,640 5,935 31,234 16,531 2.838 4,694 540 20.856 28,311 4,226 1,364 294,999 6,282 35,523 19,550 2,561 4,472 720 20,446 17,600 Support and governance costs are allocat as follows: Support and governance Direct costs Total Research, supporting families, and payable Fundraising and events Scientific education Improved management and medical care 212.884 52,930 143,300 21,180 7,516 150,170 234,064 60.446 293,470 463 492 178 642 The allocation of support and governance costs has been deterniined on the basis of time spent by staff. 26
ACTION DUCHKNNE LTED NOTES TO FINANCIAL STATEME FOR THE YEAR ENDED 31 IURCH 2024 16. Grants pald and future commitments The following institutional grants. in spect of research projects in fiwtherance of the charitable activities, were treated as grants payable during the year. 2024 2023 Grant- The Univerity of Glasgow 21,180 The following payments in respect of Tesearch projects have IKen committed to but not provided for in the accounts: 2024 2023 Grant to The University of Glasgow 17. Reconciliation of net ineome l (pendItllre) to net cashflow from operating activities 2024 Total 2023 Totsl Net surplusl(deficit) for the reportiDg period Adjustments for: Depreciation charges Loss on disposal of tangibles Interest payable Grant income related to bounce back loan Dividends, interesc and rents from investments Increase l (decrease) in debtOTS Incre&se / (decrease) in creditors (29.979) 131,019 540 720 719 (9,779) (55,420) 03 (28) 4,101 Net Cash provided by (used In) operatfing activite8 I& Analysis of cash and cash equivaleDts 2024 2023 Cash in hand 534 978 625 039 19. Events after the reporting period There are no events after the re)rtIng date which require disclosure in the financial statements. 27