REGISTERED COMPANY NUMBER: 7339522 (England gnd Wales) REGISTERED CHA]UTY NUMBEIL. England and Wal&s 1137820, Scotland SC047369 REPORT OF THE TRUSTEES AND UNAUDTfED FINANCIAL STATEMENTS FY)R THE YEAR ENDED 31ST MARCH 2024 FOR A COMPANY LIMITED BY GUARANTEE ChaTiOt Hoe Limited 44 Grnnd Parade Brighton E&st Sussex BN2 A
A COMPANY LIMITED BY GUARANTEE COIYfENTS OF THE FINANCIAL STATENfENrs FOR THE YEAR ENDED 31ST MARCH 2024 Page Chair's Report 202>24 Report ofthe Tn 2 to 12 Independent EmIner'S Report 13 Statement of nancIal Activities 14 Balance Sheet 15 to 16 Notes to the FinAnclal Ststements 17 to 24 Detsil¢d StAtement of Knan¢ial Activities 25 to 26
RETT UK A COMPANY LIMITED BY GUARAKTEE CHAIR'S REPORT 2023-24 FOR THE YEAR ENDED 31ST MARCH 2024 I would like to start with thanking the Rett UK team who continue to an 2m82ing job. the Rett Community and all those that have supported the clwity ovff the last year. l am writing this as the fal pr¢pRrations att being made for the Rett UK Family Weekend being held in Northampton in October 2024. It has been a long time since we organised a in person event of this 5caJ4 but with the Covid-19 pandemic now finnly behind us, the time felt right for a big evenL Rob and the whole team have pulled out all the stops to prepare a bigger, b¢tter and entirely free weekend (thanks to our spotL8ors and a very suc(xsful Big Give campaign). l know that the programme will showcase and celebrdte all &spects of the charity's work from family support to cornmuni¢ation workshops and the latest update5 on gene therapies and treatmen1& But even more imw)rtanL it will be a chance for the Rett Community to Come together in person to learn from and w one anothu. If. lik¢ m4 you are unable to atten¢ then look out for the reports on our website and in Rett News. Just as the staff team have had a busy year, so also it h&8 been an eventful twelve months on the Board. Much effort went into preparing a n¢w Strategi¢ Plan, we have made giKMI progress reviewing and updating our policies and procedures and we have managed to maintain a healthy finan¢iaI position in a challenging economic environmenL In facL we have been so successful at fimd-rdising that we are Lwrying more reserves than we ideally should This has enabled us to invest in support functions such as rr and the website. but in the year ahead we are planning more significant investments in frontline activities such as expanding our family support team under Julie's leadership and purcha5in8 new eye-gaze devi¢es to replace our ageing devices which loaned to Rett families as part of the critical LX)mmunication support we provide. I am very grnteful for all the fundraising activities that hav¢ been going on this year giving us the financial base to enable this to happen (and to th)nna for her unstinting efforts to provide administrative support to all our intrcpid fillthiscrs). The Board of TnLStees compri 12 tslcntcd and Mmitted iTrlividuais and I would like to thank each one of them for their contributions thts year. W¢ have a great balance of skill a mix of youth and cxperienK a good gender balance and a healthy mix of people with and without dirert family experi¢n¢e of Rett syndrome. It h&$ been thrilling this year to have Romi Loffler join us - the fit person with Rett syndrome to join the Board. The Board has had to l¢arn new ways of working so th* Romi can fully and equally participate at Board meetings, which has ultimately improved the way it works. Romi's insight into what it means to live with Rett is really valuable. It is a tremendo testament to Romi. her parents and her communication parthers. that this h&s been at all ssible. Hers is a maelloUS example of people with Rett syndrome fulfilling their IntIal. As a charity we aim to help supp)rt every person with Rett synthDme to discover and fulfil their own potential. recognising that this is differart for each prnn. Onwards and upwants into another yearT Page I
RETh UK A COMPANY LIMfTED BY GUARAiwfEE REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31ST MARCH 2024 The truste&s who are also directors of the charity for the purw)ses of the Compgnias Act 2006, present their report with the financial ststem¢nts of the charity for the year ended 31st March 2024. The trustees have adopted the provisions of Accounting and Reporting by Charities: Statement of Reo)mmended Practice applicable to charities preparing their acwunts in a¢¢ordance with the Financial Reporting Standard applicable in the UK and Republi¢ of Ireland (FRS 102) (effective l January 2019). Objectives and aim$ About Rett Syndrome Rett syndrome is a progressiv¢. neurodevelopmentai disorts. Rett syndrome is caused by mutstions in the MeCP2 gene that lead to a deficiency of the methyl cytosine binding protein 2 (MeCP2), an imp)rtant protein wnsible ft)r nornial function in the brnin and other parts of the n¢rvous system. MeCP2 mutations much more commonly affect females, as the gene is found on the X-chromosome (whi¢h females have 2 LX)pies of, whilst mal&s only have l). Rett syndrome h&8 an estimated worldwide incidence of l out of every 10,(KM>15.000 live female births making it one of the most common genetic causes of developmental and intellectual impairment in females. The Inciden in males is currently unknown. People with Rett syndrome typically have nornul development up until &18 months of ag¢ but then experi¢n¢c rapid regre&sion of previously acquired milestones including speecR4 gross and fine motor skills. and develop stereotypical. repetitive hand movements that prevent them from purpM)5efui hand function. (er time people with Rett syndrome may develop muscle ¢ontrdCtures, rigidity, and debilitsting scoli(tsi4 along with periods of recurre seizure% burdensome 8astrointsstinal abnornialities and breathing abnornMliti¢& Objectives And aims Our purpose... Rett UK is a national charity dedicated to supporting and empowering people with Rett syndrome. their families and those involved in providing their care. We are a manbership orwusation and welLX)me members from the UK and abroad. Our strategic ain are to ... - provide professional family-support s¢rvices activities and events at a regional and national level - educats health. social care and education professionals aL*Jrt Rett syndrome to able quicker di48nosis and improved stsndards of care throughout th¢ UK - advocate for people with Rett synthY)me to be given the supwAt and resources needed to be active communiL7tors - promote, support and encourage research into new therapies and treatments for Rett syndrome Our VASlOn... That everyone with Rett syndrome is given evffy possible OPWtimty to achieve their individual ptial so that they may live their life to the full.
RETT UK A COMPANY LIMITED BY GuARArEE REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31ST MARCH 2024 ORJECTIVES D AcfiviTIES Publie belleflt In shaping our objectives and planning our activities for the year, the Trustees have given consideration to the duties set out in section 17(5) of the Charities Act 2011 to have due regard to public benefit and to the Charity Commtssion Guidance on public benefiL Jn particular. the TeeS have considered how the planned acttvities will contribute to the overall aims and objectives that they have seL The Trustees believe that the Parngr specifically on 'Athievements and Perfornwj" for the year. relate in detail the benefit that the charity provides to the publiG Pag¢ 3
RETf UK A COMPANY LIMITED BY GUARANTEE REPORT OF THE TRusfEES FOR THE YEAR ENDED 31ST MARCH 2024 ACHIEVEMENT AND PERFORMANCE Charitable aetivities This has been a very positTve year wh¢Te we have r¢mained committed to consistently providing great quality support to our families and the Rett community. Over the past year we have rolled out numerous SU¢LY&sful proje¢t4 including our onlin¢ conference which saw record attendance. Our engagement has extended to attending a multitude of mettings, where wee been able to stand beside families during their most difficult moments, offering Steth advoca Suppo We also continued to conne¢t families with a network of Rett professional4 fosterin8 comie£tions that might otherwise never have been made. We end the year with a defi¢it of£12.679 and a Lh balance of£217,533 at 31 Marth 2024. Conne¢ting Families and Reduting Isolation Our Family Support service remains the primary point of contact for individuals affected by Rett syndrome. The demand for assistance continues to surge, with an increasing number of families initially reaching out through social media platfornjs and subsequently becoming members. thereby gaining 8Le&s to the filll spe(*nrn of support services we offer. Each quarter withesses an ov¢rwh¢lming ¢n8agemenL totalling more than 80(FF interactions with family members. These interactions encompass calls to our helpline, communications via our support mil, direct correspondence. responses ¢)n FacebooK WhatsApp, Twitter, Insts and Facebook Me&wger. These points of contact serve diverse puryx)$4 ranging from scd(ing infornwtion about Rett syndrome or specifi¢ symptoms to emotionally ¢harged calls from families grdppling with a new diagnosis. As their intensity and duration vary, our dedId family support team is equipped with extensiv¢ skills and training to th each rall effectively. Th provide comfor¢ empathy, guidanc4 advi4 and pertinent inf0rn]atA0 underst1 the unique needs of every individual who reach out to us. The demand for our s¢rrfices continues to ww. and we are comnlltted to meeting it by LX)ntinuaily bolstering our resources and exrtiSe wherever necessary. Fgmfily Support A key challenge we faced this year has been the lengthy process involved in receiving genetic test results. While the increasing use of whole genome testing by paediatricians is a p)sittve step fonvar4 providing a more comprehensive identification of 8eneli¢ defecty it has led to extended waitin8 tim4 often rangin8 from 12 to 18 months. This delay has understandably caused significant distress for many familie& To help ease this burde we have been advocating for clinicians to consider clinical diag005es based on patient symptoms and ¢stablished crit¢ri4 offering a possible solution while awaiting genetic confirn]ations. Rett UK Onlin¢ Conference 2023 The team delivered an outstanding event this year, with ovu 850 registrations and 798 attendees across nearly 50 sessions. We hosted 33 speaker4 and all tslks were meticulously hand-subtided thr accessibility. The evenvs success has been reflected in the excellent feedback and engagement we've receiv4 &8 well as the ongoing ngagement with our services. Our marketing team wtll continue to promote the recorded talks to esure sustained engagemenL
RETh UK A COMPANY LIMrrED BY GuARAE REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31ST MARCH 2024 Dydtabase We successfully laun¢hed our datsbase proje¢t in January> thanks to fimding from CAF. and it has already Start delivering tangible benefits. While there were a few initial challenge4 our ongoing monthly collaboration with our database provider, has helped r¢solve legacy data i&sues and ensure that all rew)rting features are filY aligned with our needs. In addition, we arc running complementary projects to further enhance the system's efficiency and functionality. One exciting development is the integrntion of an Outlook plugin. allowing seamle&8 communication to be directly added to the datsbase. This ha5 significantty improved our sffvice quality and streamlined opaations blIng us to Off even bdtff support. Research Partnership wlth Reading University & Gill Townend We have now embarked on a three-year proje¢t tn parthership with Reading University. Gill will be working with a group of speech and language therapy students from the university for one day every weeL Together, they will conduct targeted research to improve the effectivene&8 of our communicatio$ effo. Initially> our focus will be on the Communications Professionals NetworK and we aim to provide SUprt to our Regional Communication Coordinators (RCCS). Communleation Prof4s8ionAls Nehvork The Communication Professionals Network establish1 with the bkIng of Rett UK'S proficient Communication and Education team, continues to thrive. This dynamic network to professionals engaged with individuals having Rett syndrome. regardless of their settin& age group. level of expertis4 or geographical location within the UL Membership to thls invaluable netwo involves a one-time enrolment f4 granting aGL to a wealth of ex¢eptionaJ resources and tcam-backed suppor¢ ¢omplement¢d by the provision of comprehensive communication guidelines. Alongside these benefits, each member receiv¢s a copy of the MMUnication guidelines as a valuable reference. Explore the network's offerlngs and com)e¢t with I1mInded professionaIs at www.r&tuk.o@CPN. Trust And Foundatlons Trsin¢e We are delighted to share that we welwmed a new team member to Rett UK this year. Cherie Hunter has joined us as a Trainee Trust and Foundation Fundraiser. Cherie will be collabornting closely with Becky to gain a deep understanding of the role. Her passion for our mission is deeply personal. having experieneed our support firsthand when we &ssisted her family and her late sister, Charlotte. We are confident that Cherie's personal miectIon to Rett UK will provide her with a unique pUs1v4 enbancing her contribution to the team. European Congra8 in MarseRUe The Rett Syndrome A&80¢iation of Fr8nrK hosted the 2023 European Congress in Marseillc on the 7th and 8th of October. This marked the first major in-perwn event for many of us in the last five years, and knth Abigail and I were honored to Day l of the 7th European Rett Syndrome Conference provided valuable uk%Jates on rare disease str8tegieg. clinical trials. and the lat¢st discoverics in Rett Syndrome resear¢h. Kry topia8 included epilepsy managemenL breathing difficulties, and the daily ¢hallenges f&ed by those living with Rett syndrome. We also explored technol0C41 advancements in Augmentative and Alternative Communication (AAC) during the networking breaks. On Day 2, the focus shifte41 to innovative therapies, including discu&8ions on neurnl precursor L%ll therapy and the genetic detenninants of MECP2 reactivation. We delved into physical therapy practic4 communication guidelines, and cutting-¢dg¢ technologies. which all presented promising tools for improvin8 the quality of life for individuals with Rett Syndrome. The event was a rich source of knowledge and inspiration for ail attendees. Page 5
RETT UK A COMPANY LIMITED BY GUARAKTEE REPORT OF THE TRusfEES FOR THE YEAR ENDED 31ST MARCH 2024 Rett Syndrome Europe Event Satellite meeting 17th and 18th March. Angela Ruskin Universty Rett UK was delighted to parther with Rett Syn(Irome Europe for the first ever RSE Netwo Support and Research meeting. The main meeting w&$ held in Budape& Hun8ary. satellite meetings were held simultaneously in the UK Netherlands, Se]bi4 Georgi4 Croatia and Turkey. The UK satellite event allowed us a fantastic opporttmty to generate fresh interest in Rett syndrome. both in tems of research and clini1 focus. We were thrilled to have a diverse group of attendees join us in person and remotely, including Students, researche and professionals from Kings College Li)ndon and Cambridge University. Tog&her, we agreed on the following key priorities for the UL. - Maintaining the delivery of exceptional SUprt services - Increasing awareness of Rett syndrome . Preparing the UK for potential futsjre treatsnents Loan Device Programme Our program has grown and evolved prof1OnalIY over the past year, offerin8 unique online supporL The loan program provides an initial 8-week ternL extendable up to 6 months. with dedicated assistance from a Re8ionaI Communi¢ations a)ordinator. We*e improved the loan guide pack to align with NHS fimding application readines4 ensuring effective tracking of progr with Auw¢ntstive and AlteTnative Communication (AAC). Family FeedbAck" "l cannot tk7nk you apkl tk Rett UK team enough for your support in trialling the communication deviee. It htzs been Iife-channgf0r us, and ltrn thrilled to share that we recetved confirnlltiion today that thefundingfor the eqwi)ment has been approvedlll EHCP support Throughout the year. our committed team has seen a SIlfit increase in demand for EHCP supporL We've assisted a large number of families with both new and ongoing EHCPS. broadening our services to include acting as expert advo¢ates during Annual Rcviews. Additionally. where possible. wdve extended our assistance to professionals in both specialist and mainstream school4 focusing on ¢(MUnIcation challeng&s and Rett syndrom¢. This growing demand highlights the essential need for our servitts. Many famili&9 are seeking clarity on EHCPS, their PUTpose, entitlementy and the various timelines involved. Wee recognized a clear need for thorough 8uidanK as families often feel unsure about their role in influencing the content of documents. Friendship groups The adult (16+) friendship group is now att established part of our events calendar and continues to meet online on a monthly basis. W¢ continue to innovate in the gmups &s we continue to explore how we can work directly wlth people with Rett syndrom< to d¢velop adv(w skill4 and listen to what they tell u& wc see the members of this adult group as important contributors to helping us shape the seTvices and support we offer. Reglonal Communieation Champions We currently hold a monthly meeting for RCC discussio supplemented by additional meetings when necessary. These additional meetings are primarily intended for providing training to create resources 8nd to offer assistance to the newly appointed RCCS. We are thrilled by the seam15 integtation of the new members of the team and their remarkable level of engagement. The mentorship dynamic between the veterans and the new team members is proving to be efft¢tiv< as the newcomers have actively participated in resource 8eneTation and have also gained hands-on experience through their involvement in the loan program. Additionally, we continue actively seeking to expand our team of RCCS to 8T that arc currently not Gove in order to extend our reach and provide support to even more individuals affected by Rett syndrome. Page 6
A COMPANY LIMITED BY GUARANfEE REPORT OF THE TRUSTEES FOR THE YEAR ELYDED 31ST MARCH 2024 Communie8tion partner training This year, we revamped the Communication Partner training course to make it more intffactive and le&s content-heavy. The feedback has been overwhelmingly positive, with 10(P/o of participants finding all components helpful or very helpful and cxpresslng that they would recommend the course to others. We observed a noticeable increase in participant confidence between the two session& and three families reW)rt significant improVemts in their child's communication following the first session. Partnerships Alliances Campaigning and Awareness Raising As we maintsin our parthership with R£verse Rett under the RDA banner. we &knowledge the vital importancc of unity in the face of advancing medical and trchnological developments. Working together not only deepens our ¢ollective knowledge but also ensures thal as new treatments and technolo81&8 emerge, we are well-prepared to adapt effectively. This collaboration allows us lo stay at the forefront of suppo¢ ensurin8 that the entire UK Rett community fully benefits from these groundbreaking treaknents and innovation& Carer Poverty Coalition We joined 50 other members of the Carer Poverty Coalition in wrAting to the Chancellor ahead of the Autumn ststemenL urging him to provide unpaid carers and the people th¢y look after with the financial support they urgently need. Across the UK at least 5.7 million people care for a loved one who is older, disable4 or seriously ill. Yet despite the invaluable support they provid4 thousands are facing huge financial hardship, with 750/0 of those receiving Carevs Allowance struggling to make ends meeL Dtsabled Children's Parthership As members of the parthership, we were invofved in the following Lxmpaigns ov¢r the u[Se of the year.
SEIWABetterMegsage - This campaign focusas on ensuring that the govermnenvs SEND refom programme creates a
fairer, more accsIble system of support for disabled ¢hildrer4 making services e&sier to navigate and obtain without
CiveItBack- A long-standing Lxnpaign that athlIE the sI1fiCant underfimding of disabled children's health and care
services, calling on the government to reinvest in vital service5 for these ¢hildrEn and families.
FailedADdForyotten - Following the pandemic. this campaign highlights the unprecedented delays in health and Sla]
care service5 for disabled Childre calling for urgent improvements to addre backlogs. DCP Manifesto - l£ading up to th¢ expected general electio this manifesto calls for major wlitical parties to prioritise disabled Childre advocating for the appointment of a Minister for Disabled Children and stronger accountability across the educatio heald4 and social care systems. We are also now part of the newly rc-fonned Public Affairs Group Meeting which has a focus on tying to engage with politicians to get things achieved. This looks like it has got off to a good start with ¢ommitsnents from senior Labour party members willing to engage immediately. Rett UK is also a member of The Helplin Partnethp. Genelic Alliance UK Embracing Complexity. The NVCO, Bedfordshire charnb of Commewe.
RETf UK A COMPANY LNITED BY GUARANTEE REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31ST MARCH 2024 NHS Clinics Our specialised Rett clinics operats across four lotions. Cardiff. Manch¢ster, IL)nd0 and Nottingham. All clinics have returned to their regular schedule& with Manchester and Nottingham offering in-person appoinlments. IA)ndor4 on the other hand, has opted to continue conducting clinics virtually. a choice that has proven effectTve for familie5 scattered across the UK. This approach minimises travel-relatd disruptions for families and their chilthEn. The added advantage of observing the child in their familiar environment has yielded posttive r&8ults. In situations Whe clinic team members deem an iTrperson me&ing necessary, such app)inknents will be 2rrange(L ensuring faLts>face a&8essments for families. This service Proves invaluable for familias stn]ggling to find lo experts with knowl* of this rare disordcr. We persist in exploring av¢nues to enhanL% the capabilities of these clini Rett UK remains dediLYted to making a meaniw itnpa¢t on families grappling with the daily Chlenge$ posed by Rett syndrome. Our efforts encompass various dimension4 from aileviatin8 the isolation th&8e families often experience, to empowering them as effective advocates for their children. We focus on bolstering their emotional SI11enCe. enhancing their overall well-bein& fostering positive intrd-family relationships. and ensuring they access the entitled benefits to optimi7£ their family's financlai stability. Through these initiatives, Rett UK is actively shaping a brighter firture for those affected by this devastating disor Page 8
A COMPANY LIMITED BY GUARANIEE REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31ST MARCH 2024 FThANcL REEw Principal thnding sour Rett UK is funded by donations from individuals. cOrE10nS and trusts. The Board of Tn]ste¢s reviews the funding to limit the exposure to any particular source of fimds. Where fimd5 are Te1ved from donors with a re5tri¢tion on their they are h¢ld in sep8ratc strIcted funds. Investment policy and objectives The Finance Committ¢¢ will r¢wmtncnd aj monitor the invcstm¢nt stnrt risk profile and priorities of the Charitys investments and for this purpose may seek appri)priate advice from an independent interniediary / advisor who is authorlsed by the FCA. Re(J)mmendations will be brought to the Board of ThteeS at the next meeting. The Finance Committee has delegated powers to authorise any nece&8ary urgent changc4 which will be circulated to The Board of Tnstees, norn]ally by mail, for MmentIa8reeMent within 7 days. Rett UK'S investments currently comprise cash held on dqyosit with Hampshire BanL This enables easy and speedy aCCS to funds and refiects the Board's low risk approa¢h to investsnents. Reserves policy Rett UK has a p)licy of maintsining a genttal (or unrestricted) resffve of betwea) 3 and 6 rnonths, running COS calculatsd against the current yeaes budgeted g¢n¢raI expenditure. The lower amount is to pmvide a safe margin for the security of Rett UK'S ongoing work. The higher amount is to ensure that are consistently disbursed towards the charitable objectives of Rett UL That range of general reserve also includes an awareness of the likely costs of lUndanCY payments and other winding up Costs should Rett UK decide, or be force<L to (se operntions. tn addition reserrfes are held where funds are raised for dedicated projects. At 31 March 2024 reserves are higher than our policy &$ funds from additional fundraising are being held to pay for national Family Weekend in 2024. This is a substantial event and to suppKIrt the event it is anticipated that further funding will be rnised in the year to support this key cvenL Rett UK will regularly monitOT its teserves via the Honorary Treasur and CEO who will report the current reserve to each quarterly Finan Committee and Trustee meeting. This policy will be reviewed at le&8t arn)ually by the FinanLE Committe4 norn)ally in the final quarttr of each financial year. as part of the budget setting proc for the following financial year. STRUCTURE, GOVERIYANCE AND MANAGEME Governing document The organisation is a company limited by guarnth. incorprntcd on 9 AUg$t 2010 and regISted &8 a charity on 6 September 2010. The company was established under a Memorandum of Association whith established the objects and powers of the charitable company and is 8overned by its Articles of Ass(xiatioTh Copies of the Articles of A&sociation are available at www.rettuk.org or from its Head Office by r¢quttt. The charity waq fomied to Lx)ntinue the work of R&t SYn(trne Association UK {working name RSAUK) a ¢harity registered in 1986. and given a more succin& name. The members have guaranteed to contribute a maximum of £10 eath in the event ofthe LX)mpany being wound up.
RETT UK A COMPANY LJhtlTED BY GUARANTEE REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31ST MARCH 2024 STRuCrlr GOVERNANCE Al MANACEME Organisational stru¢ture The charity is governed and overseen by its Tnts Board which comprise5 of twelve individuaIs with a mix of experience of Rett Syndrome. The Board operated two Sub Committw a Manag¢ment Sub Comniittee that oversees the running and administration of the charity and a Finance Sub Committee that oversrt8 all financial matter for the charity. The day to day running of the charity is dele8ated to the Chief Executive Officer. Robert Adam¢k Appointm¢n& and Induction and training of Dew trustees The Directors are Charity Trustees as defined by section 177 of the Charities Act 2011. Tnth are apw>inted by ordinary resolution and at ea¢h Annual General Meeting one-third of the Trustees rn$t retiT4 but may be reappointed. The present trustees may app)int new TnL8tees but those Trustees aprK)inted by the Trustees rn$t retire at the next Annual General Meeting. Prnspective members of the Board of TneeS are given a file of introductory papers including planning and strategic dvrnents and other relevant documentation. They will nomially attend at least one Trnstee meeting as an observer. Internal Control and Risk management The Board of Thtee5 is responsible for the charitys system of internal control and for reviewing its effectiveness. It acknowledges that such a system can onIy manage and mitigate risk rather than finally eliminate the risk of failure to achieve set objectives. The management of risk is delegated to th¢ CEO who has implemented a risk manwent policy and provides reports to Trusttts at ea¢h board meeting. Our systems of control include a threfryear BlnesS Plan written by the CEO and 8n Annual BudgeL Regular Consideration is given to monitoring the actual perfornwice against the budget and forecasts and to the fom]al delegation to spend within clearly defined limits. Having examined the major strategi4 businass and Operation ne5 which the Charity faw the Board of Tntstees confirms that systems have been established to minimise organisationaI and financial risks. The Board of Thistees has established two sui)Mtte4 each with SIfiC tcrn)s of reference and chaired by a member of the Board of Trustees. The Finance Committee. Chaired by the Treasurer, discusses and agree5 the annual b1get (including approving salary reviews) for approval by the Board of Trustees. It monitors the investment S1cture, risk profile and priorities of the charity's inveslments and for this PUryK)se may seek appropriate 8dvi¢e from an independent interniediary / adviser who is authorised by the FCA. It reviews the annual audit plan of the external organisation's Reserves, Policy and practice and makes appropriate r¢¢ommcndations to the Board of T. The Management Conunit*e reviews and discuw personnel and genernl nwwent issues before making recommendations to the Board of Tnee9. It also h&$ responsibility thr reviewing the policies and procedures of Rett UK. the majority are Teviewed every three years with the exception of The Safeguarding Children and Vulnerable Adults Policy. The Finance Policy and The Reserves Policy which arc reviewed annually. Other PM)licies may be reviewed when a change in legislation or guidance necessitates IL Page 10
RE UK A COMPANY LIMITED BY GUARAwfEE REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31ST MARCH 2024 REFERENCE AND ADMINISTRATIVE DETAILS Registered Company number 7339522 (England and Wales) Registered Charity number England and Wales." 1137820 Scotland: SC047369 Rwstsred office Victory House Chobham Street Luton Bedfordshire LUI 3BS Trustee$ Mr M Britten Mr P R Gander Mr D A Rogerson Mr C R Beadl¢ Mts J Campobello Mr S Ledger Mrs P S Bardon Mr A Sadek (resigned 19n12023) E J Le-warde Indepelldent Examiner Dr Shona F Wardrop C.A Chariot House Limited Chartered Accountants 44 Grand Pajzde Brighton East Sussex BN2 9QA Page 11
RETT UK A COMPANY LIMITED BY GUARANTEE REPORT OF THE TRusfEES FOR THE YEAR ENDED 31ST MARCH 2024 REFERENCE AND ADMINISTRATIVE DETAIIS Bankers Metro Bank plc One Southatnpton Row London WCIB SHA HSBC Ballards Lane Church End Finchley ix)ndon N3 2BH Hampshire Trust Bank plc PO Box 74003 IL)ndon EC2P 2QR Cambridge & Counties Bank Chamwood Court 5b New Walk Leicestsr England LEI 6TE Patrons Yvonne Milne MBE Evelyn Glennie DBE Gloria Hunniford Jon Snow Victoria Murphy President Yvonne Milne MBE Vice President Lorna Jaffa Approved by order ofthe board of tswtees on 28th September 2024 and signed on its behalf by: 04Q50 Mr D A Rogerson . Tn Page 12
INDEPENDENf EXAMINER'S REPORT TO THE TRUSTEES OF RETT UK A COMPANY LIMITED BY GUARANTEE Independent examiner's report to the trustees of Rett UK (A company limlted by gugr8ntse) Cthe Company,) I report to the charity trust on my examination of the accounts of the Company for the year end 31st MarGh 2024. Responsibfilities gnd basis of Trport As the charity's trustee5 of the Company (and aIso its directors for the purwises of Lx)mpany law) you are responsible for the preparation of the acnts in acLx)rdance with the requiMents of th¢ Companies Act 2006 (lhe 2006 Ad). Having satisfied myself that the aecounts of the Company are not required to be audited under Part 16 of th¢ 2006 Act and are eligible for independent examination, I rep)rt in respect of my examination of your charity's accounts as Lxried out under S¢ction 145 of the Charities Act 2011 Cthe 2011 ACV). In carying out my examination I have followed the DiRctions given by the ChaTity Commission under StIOn 145(5) (b) of the 2011 ACL Independent examine$ ststemeDt Since your charity's gro&8 income exceeded £250,000 your e9M1fter must be a member of a listed bly. I can confinn that I am qualified to undertake the examination because l am a membff of the Institute of Chartered Accountants of S¢otIan whi¢h is one of the listed bodie I have cornpleted my examination. I ¢onfirn] that no rnattS have come to my attention in connection with the examination giving me ¢ause to believe: accounting records were not kept in rwt of the Company as Tcquired by Se£%ion 386 of the 2006 ACL. or the a¢LN)unts do not accord wlth those rewrds. or the accounts do not Comply with the accounting requirem¢nts of Sectis)n 396 of the 2006 Act other than any requirement that the accourt8 give a true and fair view whi¢h is not a matter LX)nsider¢d as part of an independent examination. or the a¢¢ounts have not been prepared in a¢)rdance with the Meth( and principles of the Statement of Recommended Practice frir accounting and reporting by charities (applicable to ¢harities preparing their aOUnts in accordance with the Financial Reporting Stsndard applicable in the UK and Republic of Ireland (FRS 102)). I hav¢ no concerns and have ¢ome acro&q no other matters in connection with the examination to whTch attention should be drawn in this rew)rt in order to enable a proper Und5 of the accounts to be Mche(L Dr Shona F Wardrop C.A The InStite of Chartered Accountwjts of Scotland Chariot House Limited Chartered A¢¢ount8nts 44 Grand Parade Brighton E&st Sussex BN2 9QA P8ge 13
REvf UK A COhtPANY LIMITED BY GUARANfEE STATEMENT OF FINANCIAL AcfiviTIES ILYCORPORATING AN INCOME AND EXPENDITURE ACCO FOR THE YEAR ENDED 31ST MARCH 2024 2024 Total funds 2023 Totsl funds fun<Ls funds INCOME AND EIYDOWMENfs FROM Donations and legacies 299.772 299,772 357,690 Other trading activities Investment income 5,873 236 5.873 236 7227 155 Totsl 305 881 305 881 365 072 EXPENDITURE ON Raising funds 73501 73501 79.666 Charitable activities Charitable activities 274 183 Totsl 318 353 849 NET INCOMEI(EXPENDrruRE) (11679) (12.679) 11.223 RECONCILIATION OF FUNDS Total funds brought foThvard 200.804 7,742 208,546 197,323 188 125 195 867 208 546 The not&8 fom) part of these financial statements Page 14
RE UK A COMPANY LIMITED BY GUARANTEE GISTERED NUMBEIL. 7339522 BALANCE SHEET 31ST MARCH 2024 2024 Totsl funds 2023 fun(Ls fimds funds Notas Debtor5 Cash at bank io 16,614 16,614 217.533 19,322 234 759 226.405 7.742 234,147 254,081 CREDITORS Amounts falling due within one year li {38280) (38,280) (45.535) NET CURRENT ASSETS 208.546 TOTAL ASSETS LESS CURRENT LIABILITIES 188.125 7.742 195,867 208,546 NET ASSETS 188,125 7.742 195,867 13 Unrestricted fLmds Restricted funds 188,125 7,742 200,804 7.742 TOTAL FUNDS 195 867 The charitable company is entitled to exemption from audit under Section 477 of the Companies Act 2006 for the year ¢nded 3 1st March 2024. The members have not required the company to obtsin an audit of its fina[al statements for the year ended 3 Ist March 2024 in 8¢¢ordance with Section 476 of the Compani&8 A¢t 2006. The trustea athiowledge their responsibilities for (a) ensuring that the charitable company kee accounting reLx)rds that comply with stions 386 and 387 of the Companies Ath 2006 and preparing financial statements which give a true and fair view of the state of affairs of the charitable company as at th¢ end of financial year and of its surplus or deficit for each financial year in accordance with the requirements of Sections 394 and 395 and which otherwise comply with the rquirements of the Companies Act 2006 relating kn financial statement4 so far &s applicable to the charitable LX)mpany. (b) The notes forni part of th&se financial statements Page 15 continued...
RETT UK A COMPANY LIMITED BY GUARANTEE REGISTERED NUMBER: 7339522 BALANCE SHEET- continued 31ST MARCH 2024 These financial statements have been prepared in accordance witb th¢ provisi0tt8 applicable to charitable companies subject to the small companies regime. The financial statcm¢nts were approved by the Board 0fTh and authorised for i&8ue on 28th September 2024 and were signed on its behalf by: Mr D A Rogerson. Trustee The notes ftinn part of these financial statements Page 16
RETT UK A COMPANY LIMtTED BY GUARANTEE NOTES TO THE FINANCIAL STATEME FOR THE YEAR ENDED 31ST MARCH 2024 AccouNfiNG POLICIES Basis of preparing the finaneial statements The financial statements of the charitdble company, which is a public benefit entity under FRS 101 have been prepared in ardance with the Charities SORP (FRS 102) 'Accounting and Reporting by Charities: Statement of Recommended PractiLz applicable to ¢harities preparing their accounts in accordance with the Finan¢iaI Reporting Standard applicable in the UK and RepubliG of Ircland (FRS 102) (effective l January 2019),, Financial Reporting Standard 102 The Financial Reporting Standard applithle in the UK and Republic of Ireland, and the Companies Act 21N)6. The financial statements have been prepared under the historical cost convention. At the time of approving the financial statements. the trustees have a reasonable expectstion that the charity has adequate resources to continue in op¢rational existen for the for&seeable future. and on that b&sis the charity is Considered to be a going wncenL The financial statements are prepared in sterling which is the function ¢urrw of the entity, and are rounded to the nearest £1. Income All income is rOgnised in th¢ Statem&rt of Financial A¢tivities 0e the ¢harity has ottidement to the fLU)ds. it is probable that the income will be received #nd the amount ¢an be measured reliably. In 2023124 a number of signifieant grants were received towards the end of the financial year which clearly related to a¢tivities and expenditure covering the following financial year. The accounting pM)licy is to reflect any income received whith clearly relatcs to futtwe years to be shown &s Deferred tncome in the Balance SheeL In 2023124 figure of £36,IXKJ has been IOrded in Creditors as Deferred tncome (2V23 £43,345). Expenditure Liabilities are re¢ognised expenditure &s soon as there is a legal or constructive obligation committing the charity to that expenditur¢, it is probable that a transfer of economic benefits will be required in settlement and the amount of the obligation can be rnured reliably. Expenditure is accounted for on an aCCnlS basis and has been classified under headings that agggats all cost related to the category. Where costs cannot be directly atiTibuted to parti¢ular headings they have been alloL*d to xtivities on a b&sis consistent with the use of resourc. Tangible fix¢d assets Depreciati<)n is provided at the following annua] rates in orts to write off each awt OVCT its estimated useful life. Plant and machinery Fixtures and fittings Computer equipm&rt 250A and 5(Ph on cost 25% and s/0 on cost 250/0 and 5Wo on rA The Chlty do not capitalise fixed assets costing le than £5W. Taxation The Charity is considered to pa&8 the tests set out in P8ragraph I Schedule 6 Finan Act 2010 and therefore it meets the definition of a charitable company ft)r UK Corporation Tax PUryKW. Accordingly the Charity is potentially exempt from t&xation in respect of income or capital gains received within categories covered by Chapter 3 Part I I Corpordtion Tax Act 2010 or Section 256 of the Taxation of CIWle Gains Act 1992, to the extent that such income or gains are applied eXcI51Vely to charitable PUTposes. Page 17 continued...
RE UK A COMPANY LIMITED BY GUARANTEE NOTES TO THE FINANCIAL STATEMENfs- tontinued FOR THE YEAR ENDED 31ST MARCH 2024 ACCOUNfiNG POLICIES- continued Fund Vdecollnting Unrestricted funds Lzn b¢ used in aOrdanCe with the chatitable objectivas at the discretion ofthe tn. Designated fimds are unrestri¢ted funits of the charity which the tn have decided at their dISclOn to set aside to use for a SIfiC purpose Restricted funds can only be Sed for particular restri¢ted purpow within the objects of the charity. Restrictions arise when specified by the donor or when fimds are raised for i)articuiar restrict&l purpos&y. Further explanation of the natu and purww of cach fimd is included in the n(rt¢s to the financial ststements. Hlre purchase And leasing commitments Rentals payable under operating leases are charged to the Statement of Financial Activities in the year in which they are payable. Pensions The pension Lt charge rwresents the LX)ntribution payable by the Charity to the employers, defined Contribution pension scheme. Judgements and key sources of estimation uneertainty In the application of the charity's accounting policie4 the charity is requirejj to make judgments, estimafrs and assumptions alx)ut the catrying value of ets and liabilities that aR not readily apparent from other sources. The estimates and a&80¢iated assumptions are b&wJ on historical experience and other factors considered to be relevant. Actual results may differ from these ¢stimates. The estimates and underlying a&sumption5 reviewed on an ongoing basis. Revisions to aC(nting estimate5 are recognised in the period in which the estimate is if the wision affects only that period, or An the period of the revision and future perioth if the revision affects the curra]t and firture (MJ$. There arc no e*irnatss and assutnptions that are considered to have a significant risk of Ing a material adjusknents to the financial statements in a futs¢ period. Financial instruments The charity has only financial assets and financial liabiliti of a kind that qualify as basic financial instruments. Basic financial instruments are initially ronISed at transaction value and are subsequently measured at their settlement value with the exception of bank loans which are measure41 at am0ed cost using the effective interest method. Financial Assets Trade and other debtors are regnisl at the settlement amount due aftv any trade discount offtred. Pryayments are valued at the amount prepaid net of any discounts due. Finan¢iaJ Liabilities Creditors and provisions are recognised where the d)arity h&$ a present obligation resulting from a pfist event that will probably result in the Irdnsfer of fimds to a third paty and the amount due to settle the obligation can be measured or estimated reliably. Creditors and provisions are nornially at their Sernent amount after allowing for any dAs¢ounts due. Page 18 continued...
RE UK A COMPANY LIMITED BY GUARANfEE NOTES TO THE FINANCIAL STATEMENIS- eontinued FOR THE YEAR ENDED 31ST MARCH 2024 DONATIONS AND LEGACIES 2024 2023 Grants 205,304 94.468 187,016 170 674 357 690 Grants receiv includd in the above. are follows: 2024 2023 Bartle Family Charitsble Tn BBC Children in Need St James, Place Foundation David Solomon Charitable Trust The Wixamtr¢¢ Trust The Bally Thomas Charitsble Fund The Edgar Lee Foundation The Woodroffe Benton Foundation Masonic Charitable Foundation CAF Focus Foundation Kilywalk WGCGC Markell Design 4 The Big Give christ[n Challenge 2022 Tower Bridge Priavo srity Kaye Charitsble Tn MK Charitsble trust Michael Cornish Charitsble Trust The D'oyly Cart¢ Charitable Tn ICECO Limited 1,000 34,191 43,345 2,500 750 5,000 20,000 1,350 2,000 500 5.000 85,797 5,000 3,690 3,100 750 3.750 22.896 13,503 1,020 170 674 Page 19 continued...
RE UK A COMPANY LIMITED BY GUARANfEE NOTES TO THE FINANCIAL STATEMEIYTS- continued FOR THE YEAR ENDED 31ST MARCH 2024 OTHER TRADING ACTivrrIES 2024 2023 Sales Unity Lottery and 300 Club Other receipts 173 4,436 2,328 4215 684 vESTmEr COmE 2024 2023 Deposit account interest 236 155 NET INCOMEI(EXPENDrruRE) Net incomel{expenditure) is stated after Char(Cra11tlng). 2024 2023 Independent Examiner TRUSTELSI REMUNERATION AND BEIYEFITS There were no trustees, remunerntion or other benefits for the year ended 31st March 2024 nor for the year ended 31st March 2023. Trustees, expenses Travel eXse$ amounting to £nil (2023: £408} were reimbursed to no (2023". 2) Trustees STAFF COSTS 2024 2023 Wages and Salaries Social Security Employers, Pension 175,919 12,417 171,827 18,286 191,163 192.560 Other Staff Costs 239 The average monthly num of employed personn¢l during the year was: 2024 2023 Page 20 continued...
RE UK A COMPANY LIMITED BY GUARANTEE NOTES TO THE FINANCIAL SfATEmE- continued FOR THE YEAR ENDED 31ST 4RCH 2024 STAFF COSTS- eontinued Average number On a full time equivalent basis There are also self employed person1 equating to a furth¢r l (2023: 1) membeT on a full tim¢ equivalent basis. Key Management persomiel (bein8 the TnL8tees and the Chief Executive Officer) remuneration {comprising gross salary, employers, national insurance and ploYerS. pension) amounted to £56.148 (2023: £55.050 Unrestricted Restricted fidS funds Total fimds INCOME Al ENDOWMENfs FROM Donations and legacies 323.499 34.191 357.690 Other tradin8 activities Investment income 7227 155 7227 155 Total 330.881 365 072 EXPENDITURE ON Raising funds 79.666 79,666 Cbaritsble activitles Charitable activities 34.191 274.183 Totsl 319.658 34,191 353.849 NET INCOME 11.223 RECONCILIATION OF FUNDS Total funds brought forward 189,581 7.742 197.323 TOTAL FUNDS CARRIED FORWARD 200.804 208.546 Pa8e 21
RE UK A COMPANY LIMITED BY GUARANfEE NOTES TO THE FINANCIAL STATEMENTS- continued FOR THE YEAR ENDED 31ST MARCH 2024 TAI¥4GIBLE FIXED ASSETS Plant and machinery Computer equipment fittings Totsls COST At 1st April 2023 and 31st March 2024 250 472 2.183 DEPRECIATION At 1st April 2023 and 31st March 2024 250 472 183 NET BOOK VALUE At 31st March 2024 At 31st March 2023 10. DEwfoRS: AMOUNTS FALLING DUE WITHIN ONE YEAR 2024 2023 Trade debtors Prepayments 150 16.614 19.322 I I. CREDTfoRS: AMOUNfs FALLING DUE wfTHIN ONE YEAR 2024 2023 Other creditors Accruals and deferred income 2,190 43.345 38280 38.280 12. LEASING AGREEMENTS Minimum lease payments under non-cancellable owating leases fall due as follows: 2024 2023 Within one year Between one and five years 912 912 1.824 912 2.736 continued...
REfT UK A COMPANY LIMITED BY CUARANfEE NOTES TO THE FINANCIAL STATEMKWts- tontiDued FOR THE YEAR ENDED 31ST MARCH 2024 13. MOVEMENf IN FUNDS Net movement in funds At 3113124 At114ll3 Unrestricted funds General fiind 200.804 (11679) 188,125 Restricted funds R¢search Fund 7.742 7,742 TOTAL FUNDS 195.867 Net Movem in funds, included in the above are &8 follows". Incoming Movement in fimds expended Unrestrlthd funds General fund 305.881 (318.560) {12,679) TOTAL FUNDS 305.881 Comparatlves for movement in funds Net movement in funds At 3113123 At 114f22 Unrestrieted funds Genernl fund 189,581 11223 200,804 Restrict hDd ReSeah Fund 7.742 7.742 continued...
RE UK A COMPANY LIMITED BY GUARANfEE NOTES TO THE FINANCIAL STATEMErs- continued FOR THE YEAR ENDED 31ST MARCH 2024 13. MOVEMENf IN FUNDS- eontinued Comparative net movement in fimds. included in the aiM)ve are as follows: Incoming Resources resources expendaj Movement in fimds Unrestri¢ted funds General fund 330.881 (319.658) 11,223 RLgtricted funds BBC Children in Need 34.191 (34.191) TOTAL FUNDS 353.849) 11,223 Research Funds All monies in the Research Funds are utilised to supp)rt possible treatments and cutE5. EIKPLOYEE BENEFIT OBLIGATIONS 14. The charitable MpanY operales a defined contribution pension scheme with contributions being made by both employer and ¢mployees at variable rates. Total pension costs in the CUTrent year amounted to £2.827 {2023: £2.247). At the year end £nil was due to the provider (2023: £nil). 15. RELATED PARTY DISCLOSURES There w¢re no related party transactions for the yr ended 31st March 2024. E J Le-Ward< a Trustee, is the son of a member of SWT.
RETT UK A COMPANY LIMITED BY GUARANTEE DETAILED STATEMEiYf OF FINANCIAL Aly[riEs FOR THE YEAR ENDED 31ST MARCH 2024 2024 2023 INCOME AND ENDoWME[S Donations and lega¢ies Donations 205.304 94.468 187,016 170.674 299,772 357,690 Other trading activities Sales Unity Lottery and 3¢X) Club Other rec¢Apts 173 4,436 2,328 4,215 684 5,873 7,227 Investment intome Deposit account interest 236 155 Total En¢oming resources 305,881 365,072 EXPENDrfuRE Raising donations and legacies Wages Insurance Telephone Postage and stationery Purch&s¢s for resale Magazine, booklet and infom]ation Event operations 47.677 541 102 1,526 1.243 47,204 1.239 438 1,292 3,064 6258 9,670 7,824 1,531 IT 11,857 1,578 73.501 79.666 Charitsble activilles Wages tnsuranc Telephone Carrled forward 191.509 1262 lJ64 194.135 192,505 2.886 2.274 197.665 This page does not ftym part ofthe statutory fuwiciai statements Page 25
RETT UK A COMPANY LIMITED BY GUARANTEE DETAILED STATEMEIYf OF FINANCIAL AcrIvtTIES FOR THE YEAR ENDED 31ST MARCH 2024 2024 2023 Charitable actlvitie5 Brought fonvard Postage and statiot Sundries Magazine, booklet and inforniation Family weekend & regionaI day Rent and property expenses 194,135 3,814 3.555 11,718 197.665 5.935 8,724 i i 1.710 6.147 7.126 6,125 1.718 29.937 3,943 1.410 5,321 Travel Bank charges Other Staff costs 10,536 4,518 242.654 271,898 Support costs Governance costs Independent Examinees ftes Total resources exnded 353 849 Net (expenditure)fin¢ome 11.223 This page does not forn] part ofthe statutory financial statements