Docusign Envelopg ID.. E804&4tF.2E5N24E-B011>89394E38BC&A RETT UK A COMPANY IJMrrED BY CONTENTS OF THE FINANCIAL STATEME FOR YEAR ENDED 31 MARCH 2025 Chair's Report 202425 Report of the Trustees 2 to 12 Independent Examiner's Report 13 Statement of Flnaneial Activities 14 Balanee She 15 to 16 Notes to the Kllancial Ststements 17 to 25
Docuwn EnveloFe ID.. E804&4DF4E5&424E-B01(k89394E388C&4 RE A COMP BYGU HAIR'S RE RT 2025 FOR THE YEAR ENDED 31 MARCH 202S I would like to slart with thanking the whole Rett UK team - Rob. Julie, Domw Bty, Cherie. Abigail, Tracey, Becca and all those involved with CommunicatioLs and Education Supwrt - w]]0 continue to do an arnazing job supporting the Rett Community. And I would like to acknowled8e all our loyal fundrai and sp)nsors who have made possible the continuing e&%ential work of the cljarity. You can read nu)re alxwt the work during 202425 in the pages below. Undoubtedly the highlight of the year was the Rett UK Farnity Weekend in Northanuyton in October 2024. This was the biggest in-person event that we have organised and it came with plenty of logistical challenges.. before during and after the Wkend itse]f. However. it was so giM)d for the Rett famity to be able to gather together in one place. with an amazi array of speake. d¢monstrations and fun activities. On behalf of the wljole Board of T[stee5. I would like to that& Rob and the whole team who pullcd out all the stops to prepare a bigger. Ixtter and entirely free weekend (thanks to a very successful Big Give can4Mign). One of the strengts of the organisation is its conllrritted and thlent Board of Trustees. There has been gwt stability on the Board this year as all the TnteeS have conttnued in with just the one new Trustee (Tom Gander) joining the Board during the year. Continuity and togetherness has ien required at tin during the year &8 we have handled a number of difficult and sensitive i&su4 and it will be even mfftE inyjttrit in the year ahead as we enter choppier financial wate. As detailed elsewhe in this rert Rett UK operated at a significant loss during 202425 an(L while this was planned for and enabl¢d us to make significant n•v invcstrnent in areas such as replament eyegdze devices. it means that some additional funding andlor Cost savings will requiffd in the coming year. W¢ Eive in challenging times economi and politically, but l am Confident that we have a Board fully equipp¢d and with the necessary ¢XPCTience to steer throug Here's to another suc¢essfill year in 2025126.
Docusign Envelope ID: E8046ADF-2E5&424E-B01Ck89394E38BC&4 RE UK COMP DBY REPORT OF THE TRUSTEES FOR THE YEAR IYDED 31 MAR The tSteeS who are also directors of the charity for the put[X of the Companies Act 21M)6, Present their report with the financial statements of the charity for the year ended 31 March 2025. The tnkn have adopted the provisions of Accounting and R¢p)iting by ChaTiti&s: Statement of Recoll Pwtice applicable to charities preparing their accounts in accordance with the Financial Reporting sta applicabl¢ in the UK and Kepublic of Ireland (FRS 102) (effective l January 2019). oBJE[VEs AND AThTIES About Rett Syndrome Rett syndrome is a progressive, neur(Mlevelopmentsl disoth. Rett syndrome is by mutations in the MeCP2 gene that lead to a deficiency of the methyl cytosine binding protein 2 (MeCP2). an in]porlant protein responsibl¢ for norn)al function in the brdin and other parts of the nervous systenL MeCP2 mutatiODS much more commonly affect females, as the gene is found on the X4hromoSon (wbich females have 2 of. whilst males only have l). Rett syndrome has an &Sttn]ated worldwide incidence of l out of every 10,(W15,(KK) liv¢ f¢malc births, making it one of the most common genetic caus¢s of dcvel(yrnental and int¢lleciual IM][ment in females. The incidence in males is People with Rett syndrome tycallY have llorn] development up until &18 months of age, but then exFwience rapid regression of previously acquired milesto5 including Speec gro&s and fine motor skills, and develop StOtypical, repetitive hand movements that prevent them from purposeful hand function. Over time people with Rett syndrome may develop Muscle contractur, rigidity, and debilitsting scoliosis, along with periimjs of recurrent seizures, burdensome gdstrointestinal abnornmlities. breathing abDornlities and COltiVe decline. Althougb the are treatments available for Rett syndrome, a si1ficant unmet need still ¢xists for new trealment options. Objectives and aims Rett UK is a national charity dedicated to supwrting and empowering people with Rett syndrome. theiT families and those involved in providing their care. We are a membership organisation and welrne rnernbe from the UK and abroad. Our strdte c aims are to - provide prof¢&sional family-supw)rt services, activiti and events at a local, regional and national level - educate healtty s(Kial care and education profe&siona]s about Rett syndrome to enable quicker diagnosis and improved standards of care throughout the UK - advocafr for people with Rett syndrome to be given the support and resources needed to be adive communicators . promote. support and en¢ournEe tesearch into new ther2pies a1 treat[ts for Rett syndrome Ourv That everyone with R¢tt syndrome is giv¢n ¢vy po&81 k Opty to achieve their individual )tentIal so that they may live their life to the fl.
Docusign Enbplope ID.. E8046ADF_2E5&424E_B01(W394E388C&4 RE UK A COMPANY L DBYCU TERED NUMBER: 7339522 REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2025 Public benefit tn shaping our objed1v and planning our activities for the Yr, the Trustees have given corL8ideration to the duties set out in section 17(5) of the Charities A¢t 2011 to have due re83rd to public benefit and to the Charity Commission Guidance on public benefiL In particular, the Tr81e have Co81dered how the planned activities will ¢oThtribute to the overnll aims and obje¢tives that they have 8¢L The Trustees believe that the paragraplL S]ficallY on 'Achievements and PerfornwKe" for the year, relate in detsil the benefit that the charity provides to the public. Page 3
Docuslgn Envejope ID.. E8O46ADF-2E524E-B01Lbe9394E38ec&I RETT UK A COMPANY LIMED BY GUARANTEE GISTERED NUMBER: 7339522 REPORT OF THE TRUSTEES R THE YEAR ENDED 31 MARCH 2 Charitable activities Despite ending the year in a deficit 2024r2025 is up there with one of the most memorable years of late - prinwily because we saw the return of the much loved and hugely valuable Family Weekend! The deficit was planned as we were using designated funds to brillg the Famity Weekend to our families free of charge, ensuring no one missed out on such an important event in terms of SUPPOT4 i¢aming mote about Rett syndrome and a chance to just bc with other familie5 walking the same p* Throughout the year though the swport for our families is unwavering including outside of office hours. One of the strengths of R¢tt UK is undoubtedly the commilment and dedicalion of our slaff team who are always there to respond to parents MageS and ll8 with knowledge and empathy. We ¢nd the year with a deficit of £75.542 and a c&8h balance of £123,427 at 31 Mar¢h 2025. Connecting Famili08 and R¢du¢lng Isolation Our Family Support team remains the PTimary point of contact for individuals affted by Rett SdrOme. This year demand has grown hugely, mainly driven by the desperate shape of ILKal services the farnilies rely on - healt education and social services. lack of respite. Education Health and Care Plans that ate not fit for purpose, key therapies such as 8c¢h and language therapy hugety oveTSubscrilKd and lengthy waiting list for life saviDg surgery putting enorn]ous strain on famili¢s that ar¢ a]r¢ady livin£ on a knifr edge. We are now providing support to over 1250 individuals with Rett syndrome and their familie4 over 9(X) interactions each quarter via our helpljw emaiL dIrt corrwndence. rwnses on FacebooK WhatsApp, Twitter, tllstagra and Facebook Messenger. These COnt points serve a wide range of pUrym . from individuals l(x)king for infomutioD about Rett syndrome or specific syinptoms. to emotionally intense calls from families facing a ent diawis. Because the nature and length of these calls can vary greatly. our dedicated family support team is highly tsained and skilled in handling each one with . They offer empathy, reassurnnce, guidance, prnctical advice, and relevant Info0 always mindful of tbe unique need8 of every person who reaches OUL Famlly Support The lengthy wait for surgery this year has been a significant challenge and stress point for many of our families. Scoliosis surgery (correcting a cwvature in the spine) and fitting a gastrostomy (supplementary feeding tube inserted in the stomach) are two of the common surgeries individua]s with Rett syndrome face. Not only have families been waiting months and months to get an actual date but also finding this then can get cancelled Several times. The emotional strain this puts on families catmot be underestimated. We are here to support them but also advocate on their behalf pressing how critical the surgery is eSIallY for scoliosis the curve can reach a point where it is actually too dangerous to 0rate. Rett UK & Rsre Minds Counsel]iDg Service We recognise how challenging parenting a cbijdladult with Rett syndrome can be and that Someti things can become overwhelming for parentslcarers. We know there are ga8 in services and long waiting lists for ¢ounselling through the GP service. We also wanted COUDsellors who understsnd the Pressures and strains caring for someone with a Rare Disease. We were delighted to parther with Ra Minds. to b¢ able to offer a SifiC savi$ to our famili&s. The pilol scheme is cumtly numing for 12 rnonth& thanks to tbose g¢n¢mus peopl¢ who swport¢d and donated to our Big Give Christmas Challenge 2024 Rett Gents
DoGu5ign Envelope ID.. E804fAADF-2E5&424E-B011>WJ94E38BC8A TTUK GU ER: 7339522 REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MAR 2025 We acknowledge the inwtance of Male Mentsl Healt14 by offering the op[lty for all males relative4 wbat¢V¢T their role is in supporting someone with Rett syndrome, to come together, to Sha exwiencffj ta]k to other dads and also to share inforn]ation to others along tbis j(Nuney. Two W Brett Martin & Steve Nangteave, host the online meetings every six week4 and they are lookll)g at IKIW can crea some face to face get togethers too. Rett Inslghts In April w¢ launched the Rett Insights via our social nKdia platforn4 weekly snapshots of infommtion about Conn08 iSSU&g for people with Rett syndrome. Jinked to more iTrdepth inf0mtion via out website. Rett UK Family Weekend 2024 We were delighted to be able to hold our Family Weekend ID Coventy in (ktober 2024. This much anticipated event had a record attendance with over l(Ki families including 84 pwle with Rett syndrome. the biggast ever gathering of people with Rett syndrome to date. Th¢re was an eXlIent progrdmme featuring some key SFakers on mlCa1 topics such &8 Epilq)sylMovement Disorders. GI symptoms in RetL Respiratory Issues & Preventative Treatments, Breathi Scoliosis & Spinal Surgery, as well as Court of protectio Wills & Tns. Communication with penOnS from people with Rett syndrome. another first! Saturday evening, saw the amazing Gala Dinner, an oprthlrrity for families to come together. The feedback from the event was extremely PitiVe. "It was AMAZING. it is many yeats since we attended • family weeken(L I was so very inwressed about how much the whole ethos. Not only was il inf0m1ve it Was so lovely to be there anM)ngst people who truly understan(L' "This was a great event for us as parents but my favourite bit is pur other daughter corning home with contact detsxls for a new group of friends who understand living with a sa)]ing that has RetL That has been wortb more than anything seeing her confthce with peers. Thank yo. Unlversity of Reading Research Collalmbration Our collaboration with the University of Reading cA)ntinues to go from strength to Streng with four Speech and tanguage Thewy ffsearch projects underway this acadenllc year involving seven final-year student& These projects butld on previous work and focus on.. . understanding commw)ication between children with R¢tt syndrom¢ and their partn. . adapting language a&8essments for ad01cents with ¢ompl¢x ncds" . updating and evaluating the impact of the Rett Syndmtne CornmuwL¥tion Guidelines through surveys of parents, carers, and profe&gionals. The aim is to provide f¢edback to Rett UK and Regional Communication Champion& and to publish findings in peer-reviewed journals, helping to sh4K b&8t practice nationally and internaiionally. Alongside thi4 we launched a Speech and tanguage Therapy Peer Support Group in 2024. which now connects 12 active SLTS through regular online meetings, sbaring exrtrtise on a&SMent and target setting. W¢ hav¢ also continued to deliver Comn1cation Partner Trdinin& dr1 clini. and online peer groups. Communication Professlonals Network The Cornmunication Professionals NetworK tablished with the backnng of Rett UK'S pTh)ficient Communication and Education t continues to thrive. This dynamic network cateTS to professionals engdged with individuals having Rett syndrome. regardl of their Setti age 8roup. level of ex1$¢ or geographical l(xation within the U Pa8e 5
Docussgn EnveEope ID: E8046ADF-2EW24E4011k89394E38BC&4 RE UK A COMPANY L GISTE ER: 7339522 REPORT F THE TRUSTEES HE YEAR ENDED 31 MARCH 2 Membership to this invaluable network involves a one-time enrollment fee, granting access to a wealth of exceptional resour$ and team-backed supporL complemented by the pmvision of comprehensive communication guidelin. Alongside these benefits, each Mern rec£1V a copy of tbe conmllcation guidelines as a valuable reference. Explor¢ the network's offtrin8s and Connect with like-minded prof10DajS at www.rettykorglCPN. 9th World Congreys in Rett Syndome- BrLsbane9 Australia- October 2024 This was a stellar event organised by the Rett Syndrome ASS1 of AtralIa over 4 days. W¢ two streams of prcscnlations Thing - a family sttEam and a scientifidrlinieal one . the audience could here the latest news and advances in understanding on all aspects of Rett syndrome from daily living through to gen¢ therapies. Rett UK was very well represented by our CEO RoL*rt AdameK along with Gill Townend and Becky Jenner, who was also representing {and fillthd by) Rett Syndrome Eun)rt. This enabled to see more ta]ks and share notes, key Ints and learning which we could bring back to our support team and familie& There were fantastic networking opportunities &8 well - every parent organisation with a representative present took to the platforni to share news and infornution about their countri&s wrt allowing for collalK)rntion and a gtrr under8tanding of each othetrs challenges. The gala dinner at Sea World was a al highlight with $0 many Rett families attendmg alongside clinicians, researchers, scientists and therapists - what was so evident was the slwed pa&sioD for a lift for people with Rett syndrome - real hope for the future and a detern]ition to see tratisve treattnrnts. Over the past year. our Loan Devic£ Programme has cotitin to deliver a profe&sioDally sttuctured service that offers tailored online SUPFKirL The programme begins with an initial 8-week loan perio¢ extendable up to 6 months, and includes dedicated guidatKe from a comnMllon and Educ10 Support Champion& We've enban¢¢d our loan guide pack to better align with NHS futujmg application requirements, ensuring families are well.prep2red to demonstrate pro8 in 8]ng Augn]entstive and Ahernthe ComMunition (AAC) systems. Family Feedback: "Taking part in the eye gaze trial h&s up a whole Dew world for $. For the time, wee been able to how much our daughter can ¢xpr¢ss and understand. The support from the Rett UK team has been 11KdibLe. and we're overjoyed that this trial has led to securing the equipm¢nt sh¢ now dwn(Ls on every day." EHCP Support This year again has seen a marked rise in requests for support with Educatioo Health and Care Plans HCPS). Our experienced team bas &ssisted many families through both new applications and ongoing EHCP reviews. Last year we expantsl our serviLY to include advocacy at Annual Reviews and whC ible, offer support to ¢ducation professionals in both specialist and n)ainstream settiDgs-wially around communication and Rctt syndrome-specific nee4ts. This h&s veen invaluable to famili&s. The growing dern reflects how ctucial this supwrt is. Many families continue to seek clarity around what EHCPS involve, their entitlements, and the timelines they must navigat¢. We've ttcognised a Clear need for more in-dept accessible guidance. as families often feel uncelkn about how to infiuence the content and quality of these d(Kuments. IA)an Device Progran]n Page 6
DO819 Envelope ID.. E8046ADF-2E5&424E-B011H9394E38BC8A RE UK A COMP LIMrrED BY GUA GISTER ER: 7339 REPORT OF THE TRUSTEES R THE YEAR ENDED 31 MAR 2025 Over the past year, our Loan Device Progrdmme IMS Contin to deliver a prof¢&sionally Structu seryice that offerJ tsilor¢d onlin¢ Suppo The programme begins with an iDitiai 8-week loan extendable up to 6 month4 and Includ dedicated ldanc¢ from a Communication and Edu¥ion Supp)rt Champio]L8. Wee enhanced our loan guide pack to better align with NHS funding application wuirements, ensuring families are well-prepared to demonstrate progr in using Augmentstive and Alternative Communication (AAQ systems. Family Feedback: "Taking part in the eye gaze trial has 0[ned up a whole new world for us. For the fitst time, wee been able to see how much our daughter can express and understand. The support from the Rett UK team has been incredible, and we're OVi0ycd that this ttial has led lo s¢curing the equipment She now derthds on every day." EHCP Support This year again has seen a marked rise in requ&sts for suppx)rt with Educatio Health and Care Plans (EHCPS). Our Last ycar we expan our service to include advocacy at Annual R¢vi¢ws an4 where possible. offer support to education professionals in both specialist and mainstream setting5p18IIY around communication and Rett syndrorne-speGifi¢ Theeds. This has vccn invaluable to fan)ilk¢s. The growing demand reflects how crucial this swrt i& Many fatDilies continue to seek clarity around what EHCPS involve, their entitlements, and the timelines they must Davigate. Wee recognised a clear ne8J for more in-dept accessil)Re guidance, as families ofien feel uncertain alt how to infiuence the content and quality of these documents. Communitation Champion Our CC team continues to meet monthly, with addition training slOnS and LX)IlaiK)rative meetings held &s neede These extra se&sions are <ksigned to build confidence in raource creation a1 to SUprt newly apkx)inted CC. we' pleased to see how $mthIY new CC have inte into the teanL bringing enepdy and fresh perspectives. The mentoring relationships between experienced and CC have been wially vahthle. enabling skill-sharing and Looking aherf we remain focused on growing our CC netwo into CUTrently uM)vered regio allowing to expand our reach and offer communication support to more families affected by Rett syndrome. We were also able to fa¢ilitat¢ out and about groups in 7 areas with a total of 57 families Si1ng up. These are in a local place of interest such as a wildlife park or museum providing rich 0]MticS to practise communication strategies with the support of the CC and oth¢r New Courses Our experienc team developed 2 new ones during the year. Framework and Modelling. The courses are based on the SETT Framework by Joy Zabala and takes into account the StudenL the EnviroDmenL the Tasks and the Tools. It is moff for professionals or thos¢ a bit fLlltber along with their Lxjmmunicatio Social Media Page 7
Docusign Envelopo ID.. E804&4DF-2ESH24E-B01M9394E38BC8A RE UK LIrrED BY TERED ER: 7339522 REPORT F TIIE TRUSTEES AR ENDED 31 MAR This year wee seen just how pow¢thl our social media can be in biinging fatni]ies together and slwing real stories. Facebook continues to be where we reach the llst peopl4 •ially when we ask families to get involve4 whether ies shing World Book Day costum. photos from Family Weekend or words of 5UPPOrt on Mothefs Day. Posts that show people and personal experiences always Sp the biggest reactioll& far more than graphics or ¢v¢nt adverts. Some of OUT biggest high1lts included the Big Give campaigo Family Weeken¢ the Sibling Awards, and our Lifrracy campaiw all of which received wonderfill engagement from our community. UFM]afrs on researc such as the latest from Taysh4 also reached and resonatal strongly. showing how imfftt it is to ba]anL% famity yo1S with hope for the filture. Partnerships% Allianc Campaignlng 2nd Awareness Ralslng As w¢ continu¢ our partsietship with Reverse Rett under the RDA banner. we recognise th¢ Critic impothe of collaboration in a rapidly evolving landscape of medical and iechThological advancements. By working together, we strengthen our shared expertise and ensute we are ready to resp)nd &8 new treatments and innovations become available. This united approach keeps us at the forefront of progres4 ensurin8 that the enlire UK Rett community can access and benefit from the latest breakthughs. Disabled Chlldren's Partnershlp As eberS of the Parthership. we have worked clos¢ly with other organisations to Campai on a viide rnnge of issu affe¢ting disabled chi14tra4 young peopk, and their families. Together. we have be¢n able to rnise awa[ess, thare ¢xpertise, and strengtkn our collective voice to ensure that the ne4ts and rights of disablejj pw?le are not overlooked. We are also now active membas of the newly re-fonned Public Affairs Gmup Meetin& which brings organisations together to Coord efforts in infiuencing decision.makers. The group is partIc8Y focused on building Constructive relationships with ]K)'tiCIanS and licYMak5 to wsh for nningfill change. Rett UK is also a member of Th¢ Helplin&s Partnerty. G¢n¢tic Allia1C UK Embwing Complexity, The NVCO. Bedfordshire ChaDkn of Commerce. NHS Clinics Our specialist Rett clinics are now fully owational across four lOtiOns. Cardiff, Mancheskr. and Nottingham. Manchester and Nottitigh have resumed in.person app)intnt& wl)ile the London clinic continues to operate VirtslIY. aD approach that has proven hWy effective for families l(Kated across the U Virtual clinics reduc¢ the stiain of travel and allow cliniciaTrs to obsuve children in th¢ir home environments. oftc providing deeter insights into their daily nee(Ls. When an ill-per &8s¢ssment is requirt the clinic t¢am will arrange These clinics are a lifrline for famili who struggle to acce&8 I(1 profe&8iona]s with exttrtise in Rett syndron. We Rett UK is deeply comnlltted to stillg famili&s living with the daity Challeng of Rett syndrome. Our WO goes beyond clinical car4 we f£ on reducing Isolatio building emotional resilience. and emEM)weTing families to bccome strong advocates for their children. We help improve overall well-bein& nurture healthy famity relationships, and ensure families the financial support and benefits they are entitled to. Througb these effort4 Rett UK contffinues to make a me&DingfuL lasting impacL helping to shape a brigbter and more secure firture for everyone afftcted by this complex and devaststing conditio Page 8
DoSh3n EnveloFe ID: E8046ADF-2E58424E401[89394E38Bc8A RETTUK A COMPANY LIMITED BY ISTERED NUMBER: 22 REPORT OF THE TRUSTEES R THE YEARENDED 31 MAR FINANCIAL REVIEW Principal fundlng sourees Rett UK is funded by donations from illdu81S, cowations and tnts. The Board of Trustees reviews the funding to limit the exp)sure to any parti source of fimds. Wh¢re funds ate reLzivcd from donoT5 with a restriction on their usc they are held in syrn* trActed fids. Investment poliey and objeetives The Finance Committee will rKomDwid and rnODitor the investment structure, risk profile and priorities of the Chariws investsnents and for this pllr may seek appropriate advice from an Indellt inteTMed1 l advisor who is authorised by the FCA. Recomrnendati0Tr8 will be bmugbt to the Board of TnteeS at the next meetin& The Finale Committee has delegated powers to authorise any necessary urgent chango wbich will be ¢irculated to The Board of Tn]stee4 nornulty by e-mail, for comtIagreeMt viithin 7 thys. Rett UK'S inv1M¢nts curr¢ntly Con4 Ash h¢ld on dwit with Hamts Tt Bank This ¢nables casy and spcedy access to fidS and reflects the Board's low risk apprOh to Invts. Reserves pollcy Rett UK has a policy of njaintsining a genernl (or unrestrict&l) reserve of between 3 and 6 months, ruDning costs, calculakd against the current yeavs budgeted genernl exF¢nditure. The lower annt is to provide a safe nwgin for the security of Rett UK'S ongoing work. The higher amount is to ensure that fijtth are consistently disbursed towards the charitable objeclives of Rett That range of gene1 reserve also includes an awareness of the likely Costs of redundancy payinents and other winding up costs should Rett UK decide, or be force(L to cease operations .In addition reserves a held where funds are raised for dedicated projec1& At 31 March 2024 r&serves are bigher than our policy &8 fidS from additional fundraising are being held to pay for national Faroily Weekend in 2024. This is a substsntial event and to support the event it is anticipated that fiwther fUlldg will be raised in the year to support this key evenL Rett UK will regularly monitor its reserv&8 via the Honorary Tre&wrer and CEO who will report the current reserve to This lIcY will be reviewed at least annually by the F]DaD Coninuttee. norn)ally in the fllul quart¢r of each fllW)cial year. as part of the bty setting process for the following financial year. Governing document The organisation is a company limited by guarantee. incorporth on 9 August 2010 and register&1 &8 a clwity on 6 Sq)tember 2010. The company was established under a Memorandum of knociation which established the objects and powers of the chaTitabl¢ company and is governed by its Articles of A%ClatIOn. Copies of the Articles of Association are available at WWWttUE0rg or from its Head Office by reqUL The charity was fom]ed to continue the work of Rett SyThlrome A&socithon UK (wOlDg name RSAUK) a charity registered in 1986, and given a more succinct name. The membffls have guaranteed to contnlmtte a nxIMuM of £10 each in the event of the cOmY being wound up.
Docus4qn Envelope ID: E8o46ADF.2E5&424EOllm93g4E38BC8A RETT UK A COMP DBYGU TERED EL.7 REPORT OF THE TRUSTEES YEAR ENDED CH 2025 Organisational strnethre The clwity is governed atKI overseen by its Trustee Boa which comprises of twelve individuals with a mix of experience of Rett Syndrome. The Board 0rnted two Sub Con]mitte4 a Management Sub Committee that oversees the running and administration of the chatity and a Finance Sub Conunittee that oVe¢¢S all financial matler for the ch8Tity. The day to day nmning of the charity is (kl¢gat¢d to the Chief Executive OtTicff. Robert AdameL Appolntmen( and Induction and tr8lnlng of new trustees The Dire¢tOTS are Charity Trustees as defined by section 177 of the Charities Act 2011. Tnte¢S are appointed by ordinary resolution and at each Annual General Meeting one-thitd of the Trustees must retire, but may be reappointed. The present trustees may apw)int new TteeS but those TnL8tees apN)inted by the Trustees must ]re at th¢ next Annual Prospective rneMb of the Board of Tnts are given a ffle of introductory papers including planning and strdtrgic documents and other rclevant d(KumentatimL They will nonDalty atfend at le&st one Tnte¢ meeting as an observer. Internal Control and Risk mAnagement Th¢ Board of TntS is resp)nsible for th¢ Charitys system of Intern control and for r¢viewing its effectivene&8. It acknowledges that suth a system can only manage and mitigate risk rnther than finally elimxnate the risk of failuLE to achieve set objectives. The management of risk is delegated to the CEO who has in]plemented a risk managernenl policy and provides reports to TnteeS at each board meeting. Our systems of control ilUde a three-year Business Plan written by the CEO and all Annual BudgeL Regular Consideration is given to monitoring the actual f0m}ee against the budget and foreL* and to the forn delegation to within clearly defined limits. Having examined the major strategic, b8]n and oational rules vthich the Clwity faw the Board of Tnths confink)s that systems have Lwi established to Mini organItional and fujancial risks. The Board of Tte¢S has estsbliskul two sulFcommittees. eath with specific tern of thce and chair1 by a member of the Board of Trustees. The Finance Committee, Chaired by the Treasurer, discu and a8rxs the annual budget (iludIng approving salary reviews) for approval by the Board of Tntees. It monitors the investment Structu risk profile and priorities of th¢ charitys investments and for this purpose may seek approprAat¢ advice from an indeFtndent inÉerni¢diary l adviser who is authorised by the FCA. It Thiews the annual audit plan of the exteTnal organisation's Reserves, Policy and practice and recommendations to the Board of TThtees. It akn h&8 responsibility for reviewing the policies and procedures of Rett UK. the majority are reviewed every three yeaTS with the exception of The Safeguarthng ChiIdren and Vuhwable Adults Policy, The Finance Policy and Th¢ Reserves Policy which are reviewed ann. Other policies may be reviewed when a change in legislalion or guidance necessitat&s it. REFERENCE AND ADMINISTRATIVE DETAIts Registered Company number 7339522 (England and Wales) Re2lstsred Charlty number 1137820 Page 10
Docu$wJn Envelope ID: E8046ADF.2E5&424E-8011M9394E38BC&A RETT UK A COMP LIMTfED BY GU GISTERED NUMBEL. 7 22 REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 MARCH 2025 Registered office Victory House Chobharn Street Luton Bedfor&hire LUI 3BS Trustees Mr M Britten Mr P R Gand¢r Mr D A Rogerson Mr C R Beadle Mrs J Campobello Mr S Ledger Mrs P S Bardon E J iL-Warde Mrs D Cavaldoro (apwinted 1119r20251 Mrs D Cowburn (appointed 111912025) Mrs M Forest (appointed 111912025) Mr T Gander (apwiTht 111912025) Mi&s R Loffler (app)int¢d 111912025) Independent Examiner Dr Shona F Wardrop C.A Chariot House Limited Chartered Accountants 44 Grand Parade Brighton East Sussex BN2 9QA Pagell
DOIgn Enveiope ID.. E8046AtF.2E5&424E.801M9394E388C8A RE UK ANY LIMrrED BY TERED EIL. 7 22 REPORT OF THE T STEES FOR THE YEAR ENDED 31 MAR 202 Bankerg Metro Bank plc One Southampton Row IA)ndon WCIB SHA HSBC Ballards Lane Church End Finchley tLJndon N3 2BH Hampshire Trust Bank plc PO Box 74003 London EC2P 2QR Cambridge & Counties Bank Chamwood Court 5b New Wa]k Leicester England LEI 6TE Honorary PrIdent Yvonne Milne MBE Honorary Vice President IA)rna Jaffa as Vice Approved by order of the LK>ard of truste on.... 6th December 2025 and sigtKd on its behalf by". 34,,a e Mr D A Roger80n- Trustee Page 12
Docuslgn Envelope ID: E8046ADF.2E5&424E4011W394E388C&A INDEPENDENT EXAMtNER'S REPORT T TTUK A COMP TItE TRUSTEES OF Independent ex¥miner'$ report to the trustees of Rett UK (A tompany limited by guarantee) ('the Company I report to the ¢h8Tity tr$tee8 on my examithon of the a¢¢ounLq of the Company for the year ended 31 March 2025. ResponsAbllftles and basis of report As the charitys tnlslees of the Company (and also its ditorS for the putTx)ses of company law) you T¢Snsible for the prepardtion of the accounts in accord with the reqUIents of the CompaD1 Act 2006 Cthe 2(K16 ACO. Having satisfied MYlf that the accounts of the Company arc not reffjllred to bc audit] under Part 16 of the 2¢J)6 Act and are eligible for independent eXaMitio I [crt in [esFt of my eXamItion of your clwitys accounts as caLTied out under Section 145 of the Charities Act 2011 Cthe 2011 ACV). In carrying out eXamition I have followed the Directions given by the Charity con)MlOn under Sethion 145(5) (b) of the 2011 ACL Independent examiner'$ statement Since your charitys gross incorne exceed1 £250,(KK> your examiner mst be a member of a listed Ixyfy. I can confllm that I am qualified to undertake the examition Ixaus¢ l am a memiw of the Institute of chart Accountants of Scotlan which is one of the listed b¢JJies. I have completed my examinatiorn I confirni that no rnattas have come to my attention in connection with the eXamItion giving me cause to believe: 8CCOUnting rer&S were not kept in respect of the CPanY as by Scction 386 of the 2[ Ac¢ or the aOUThts do not accord with those reconls" or the accounts do not comply with the accounting rowitements of Section 396 of the 2(K16 Act other than any requirement that the accounts give a true and fair view which is not a matter considered as part of an indep¢ndent examination. or the accounts have not been prepared in accordanc¢ with tbe methoth and principl¢s of th¢ Statement of Rcrommcnded Prn(ti for arwunling and r¢w)rting by charitias (applicable to clwitics prq)aring their accounts in accordance with the Financial Rewrting Standard applicable in the UK and Rwblic of treland (FRS 102)). I have no ¢oncen)s and have ¢onK across no other mattus in connection with the eXaMiOn to wl)ich attention should be drawn in tbis r¢p)rt in ord¢r to ¢nabl¢ a pro understanding of the accounts to be [h Dr Shona F Wardrop C.A The Institute of Charterd Accountants of Scotland Chariot House Limited 44 Grand Parade Brighton Fast Sussex BN2 22 December 2025 Page 13
Docusign Envelope ID.. E8046ADF-2E5&424E4011>89394E38BC8A RE UK TED BY GUARANTEE STATEMENf OF FINANCIAL AlTIEs CORPORATING AN INCOME AND EXPEIYD FOR THE YEAR ENDED 31 MARCH 2025 2025 Total 2024 Total Not¢s INCOME AND EIyDOWmE FROM Donation5 and legacies 285501 45,1XM) 330,501 299,772 Other trading activities Investtnent income 8,052 2,615 8,052 1615 5,873 236 Total 296,168 45,IKKJ 341,168 305,881 Raising funds 103J09 103J09 73,501 Charitfdble activitse8 Charitable activities 313.401 313,401 245,059 Totsl 416.710 416,710 318,560 IYET INCOMEI(EXPENDTfuRE) (120542) 45,(MX) (75,542) (12,679) RECONCILIATION OF FUNDS Total fullds bn)ught forward 188.125 7,742 195.867 208,546 TOTAL FUNDS CARRIED FORWARD 67.583 51742 120,325 195,867 The notes fonn Irt of these fit)allc statements Page 14
Dwstgn Envelope ID: E81746ADF4E5PA24Eol{L39394E38Bc&q RE UK STERED NUMBEIL. BALANCE SHEET 31 MAR 2025 2025 Total 2024 Total CURRE ASSETS Debtors Cash at bank io 14.980 55,705 14.980 108,447 16,614 217.533 51742 70,685 52.742 123.427 234.147 CREDfTORS Amounts falling due within one year li {3,1(Y2) (3.102) (38.280) NET CURREiYf ASSETS 67,583 51742 120,325 195,867 TOTAL ASSETS CURREiYr LIABILITtES 67583 51742 120J25 195.867 NET ASSETS 67,583 52,742 120325 195.867 FUNDS Unrestricted fijnds Restricted funds 13 67.583 52.742 188,125 7,742 TOTAL FUNDS 120J25 195,867 The charitsble compny is entitled to ex•on from audit under Section 477 of the Companies Act 2(X)6 for thc year ended 31 March 2025. The m¢mbers have not required the company lo obtsin an audit of its financial statements for the year ended 31 March 2025 in accordance with Section 476 of the Collynies Act 2(X)6. The trustees acknowledge their resw)nsibilitie5 for (a) ensuring that the ¢haTitable company keeps accounting ffcords that comply wÉth Sections 386 and 387 of the Companies Act 21K16 and Preparing financial statements which ve a true and fair view of the state of affairs of the ¢haritable company as at end of each financial year and of its swplus or deficit for each financial year in aceordance with the requireDts of Sections 394 and 395 and which otheThvise comply with the requInts of the Companies Act 2(K56 relating to financiaI statemeng so fir as applicable to the cbaritable company. (b) The notes forni part of financ slatements Page 15 continue(L..
Do(S[gn Envelo ID: E8046ADF-2E5&424E401IH9394E38BcaA RE UK COMP DBY TERED NUMBER: 7339 22 BALANCE SHEET- 31 IKARCH 20 ntinued Thcsc financial Statent$ have been prepatcd in a¢ with the provisio$ applicable to ch8Titabie companies subject to the small companies regime. The financial statements were approved by the Board of Tnstees and authorised for i&sue on . 6th December 2025 and were signed on its behalf by: Mr D A Rogn. Trusfre The not&$ f(m prt of these fuwicial statements Page 16
Docuslgn Enbelope ID.. E804&4DF-2E5N24E-B01049394E38BC&A RE UK NOTES TO THE FINANCIAL sTATEmEs FOR THE YEAR ENDED 31 MARCH 2025 AccouNfiNG POLICIES Basis of preparing the financial sthtements The fllwicial statements of the charitable comny, which is a public benefit entity und¢r FRS 102, hav¢ been prepared in accordance with the Charities SORP (FRS 102) 'Accounting and Rw)rting by Charities: Statement of Recommded Prncti¢¢ applicabl¢ to ¢baritiG5 prqyaring th¢iT accounts in accordance with the Financi Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective l January 2019),, Finan¢ial Reporting Standard 102 The Financial Reporting Standard applicle ID the UK and Republic of treland, and the Companies Ad 2006. The fmancial statements have been prepared underthe historical cost conventio At the time of approving the financial statementy the trustees have a Thsonable expectation that the ckwity l)as adequate resources to continue in oatiOn eXiStee for the foreseeable and on that basis the chwity is CO81dered to a going conL%rn. The fllwjcial statements are pre[¢d in sterling which is the futKtional CUTreDcy of the entity, and are rounded to the nearest £1. IDcome All income is recognised in the Statent of Financi Activities once the charity has entitlement to the fiuxjs. it IS probable that the incorne will be reIVed and the allUnt can be measured reliable. Income from Grants is defer wIe f0M&reIatl conditio$ outside of the control of the charity are attache Expendiknre Liabilities are recognis•J as expenditure as s(K)n as tIKre is a legal or c0Th8tructive obligation conllnitting the charity to that expenditur4 it is probable that a transfer of economic benefits will be required in settlement and the amount of the obligation can be tne&8ured reliably. Expendith is accounted for on an aCcnS basis and has been classified under headings that aggregate all cost related to the category. Where costs Cal0t be directly attributed to particular headings they have been all( to activiti&8 on a b&sis consistent with the e of resources. TnRe fixed 2wts Depreciation is provided at the following annual rntcs in order to write off each asset over its tIM useful lifr. Plant and nwhinery Fixtures and fittings Computer equipment 25 % and 5(Y/o on rMt 250/0 and 51Y/o on cost 25 % and 5(P/o on c(K8t The charity does not capitalise fixed a&sets costing15 than £5(K). Taxation The Charity is considered to pa&% the tests set out in Pardgrdph I Schedule 6 Finance Act 2010 aDd therefore it meets the d¢finitioD of a charitable company for UK CoTporatioD Tax pUryK. A¢¢ordingly the Charity is potcntially exempt from taxation in resF*d of i)Me or capitsl gains receiv within cat¢g()Ti¢S wv¢r¢d by Chapter 3 Part I I Co[tion Tax Act 2010 or Section 256 of the T&xation of Chargeable Gains Act 1992. to th¢ extent that such income or gaiJk8 are applied exclusively to charltable purposes. Fund accounrting Unrestricted funds can be ud in accordance with the charitable obje¢lives at the discretion of the trustees. Page 17 continued...
DocLt8lgn Erwelope ID.. E8046ADF_2E5&424E.B01(k8¢J394E38BC&4 OMP NOTES TO THE FINANCIAL TATEMENrs. FOR THE YEAR ENDED 31 MARCH 2 ntlnued AccouNfING POLICIES. ¢ontinued Fund accounthig Desied fill)&s are Un$tricted funds of the CIlty which the In have thided at their discretion to set aside to use for a specific prse Restricted ran only be US for particular r¢striGted purposes within the objects of the clwity. Restrirtions arise when specified by the donor or when a lSed for partIllar Kstsicted purpos¢s. Further explanation of the nature and purp)se of each fund is included in the notes to the finawial statements. lTre pllreh and leaslng eonllnitments R¢ntals payable under operating leases are charged to the Statement of Financial Activities in the year in whi¢h th¢y are payabl¢. Pensions The pension cost Cha ryresents the conthl)ution payable by the Cl)arity to the employers, defined Contribution pension scheme. Judgements and key sources of tIOn uncertsinty In the application of the charitys tIng 11¢1 the charity is required to make jud, e5tin]ates and assumptions about the canying value of assets and liabilities that aff not readily apparent from other sources, The estirnat¢s and associatcd assumptions are baseAJ on historical exlenCe and other factors considered to be relevanL Ackn1 results may differ from these estimates. The estimts and underlying assumptions are reviewed on an ongoing basis. Revisions to accounting estimates are reCOlsed in the lod in which the estimate is revisaL if the revision affects only that Perio or in the peri(Kl of the revision and future pffliods if the revision affects l)oth the current and future periods. There are no &8tin]ates and assumptions that are Co81dered to have a significant tisk of ¢au8ing a rnaterial adjuslm¢nts to the fula1 statements in a futute ri0 nan¢ial illstrumeDts The charity has only financial assets and financial liabilities of a kind that qualify as basic financial instruments. Basic financial instnllnents are initially Tecognis&J at tratL8action value and a subsequendy measured at their settlement value with the exception of bank loaDs which are mwured at amortised cost using the effertive interest Trad¢ and other debtots are recognised at the settlement amount due after any tra<k disCot offerd Prepayments are valu¢d at the amount Ptcpaid net of any diwunts du Financial Liabilities Creditors and provisions are whaE th¢ ¢harity has a psellI obligation SUtIng from a past event that will probably result in the traThsfer of fijnds to a third paty and the amount to settle the obligation can be me&sured or estimated reliably. Credit(Ys and provisions are nornmlly recognised at their settlement amount after allowing for any discounts thje. Page 18 ntinue(L..
Dryxslgn Envelop8 ID.. E8046ADF_2E58424E-B01fr89394E38BC8A RErr UK NOTES TO THE FINANCIAL STATEMEKfs. continue41 FOR THE YEAR ENDED 31 MARCH2025 DONATIONS AND LEGACILS 2025 2024 Donations I£gacies Grdnts 155,002 23.418 152,081 205.304 94.468 330,501 299,772 Grants receivel included in the abov< are &s follows: 2025 2024 Bartle Famity Charitable TrtLSt BBC Children in Need St James, Place Foundation David Solomon Ckwitable Trust The Bally Thomas Clwitable Fund The Edgdr Ltt FouudatioD The Soutr Charitable Trust The Woodtoffe Benton Foundation The Thomas Siveright Catto Charitable Settlement TNryford And District Round Table Tower Bridge Priavo Se¢urity Kaye Charitable TTUSt K Charitable trust Michael Cornish CEwitable Tnjst The D'oyly Carte Charitable Tftt ICECO Limited Mack Foundation AXIS Specialty Europe Limited Big Giving Campaign Douglas Arter Foundation The Stockwell Charitsble TDJSt Delamere DaY Foundation 1,000 43,345 2,5 750 20,(M)O lJ50 22iX) 750 4,031 13,503 1,020 1,0 1,000 123.IIKI 152,081 94.468 Page 19 continued...
Dcruslgn Envelope ID: E8o46ADF-2E5&424E0193g4E38BC& RE UK OMPANY BYG NOTES TO THE FINANCIAL sTATEmE- continued FOR THE YEAR ENDED 31 MAR H 2025 2025 2024 173 4,436 1264 Unity Lottery and 300 Club Other receipts 3,684 4.368 8,052 5,873 VESTMENT COmE 2025 2024 Dqx)sit acc(xJnt interest 2,615 236 NET INCOMFJffXPEIYDTfuRE) Net incomeJ(¢xpenditure) i8 Stated after charn(credIting). 2025 2024 2,555 2.405 TRUSTEES, REMUNERATION AND BENEFITS There were no tnLStees' remuneration or other benefits for the year eth 31 ma 21)25 nor for the year ended 31 March 2024. Trustees, expenses There were no Intees, extuws paid for the year ended 31 March 2025 nor for the y¢ar en(kd 31 March 2024. STAFF COSTS 2025 2024 Wages and Salaries 185,419 13,134 175,919 12.417 Employe, Pension 201.595 191,163 239 The averagc nionthly numbw of employcd perso1 dwing the year w&s: 2025 2024 Page 20 continued..
Docusign Envelope ID.. E8046ADF-2E5&424E-B01(W3g4E388C&4 RETT UK OMP NOTES TO THE FINANCIAL STATEME FOR THE AR ENDE 2025 - eonthilled STAFF COSTS- conthived Averag¢ number On a fiffl lime equivalent basis There are also self employed peThonnd equating to a furtbff l (2024: 1) on a full time quivalent basis. Key Management p¢TronDel (king the Tntstxs and the Chief Executive Officer) remuneration (comwising gross salary. employers, national insur and employers, pcnsion) amounted to £58.870 (2024: £56,148) COMPARATIVES FOR THE STATEME OF ANCIAL AtTlEs UDre5trictd Restrict fimds Total INCOME AND ENDOWMENTS FROM Donations and l¢gacies 299.772 299.772 Other trading activities Investment income 5.873 236 5,873 236 Total 305.881 305,881 Raising fim(b 73501 73,501 Charltable 2Ctivitses Charitable activities 245,059 245,059 Totsl 318560 318.560 NET INCOMFJ(EXPENDITURE) (11679) (12.679) RECONCILIATION OF FUNDS Total fimds brought forward 21K).804 7.742 208,546 TOTAL FUNDS CARRIED FORWARD 188,125 7,742 195,867 Page 21 continued...
DouJ8ign EnveloFe ID.. E8o46ADF-2ES24E-BolIM9394E38Bc8A RErr OMPANY LIMITED BY GUARANTEE NOTES TO THE FANCIAL STATEME THE YEAR ENDED 31 MARCH 2025 - continued TANGIBLE FIXED A&SETS Plant and Comwter equipment fittings Totals COST At l April 2024 and 31 March 2025 250 2.472 2,183 4.905 DEPRECIATION At l April 2024 and 31 March 2025 250 2,472 2,183 4.905 NET BOOK VALUE At 31 March 2025 At 31 March 2024 10. DEBTORS: AMouNfs FALLING DUE wrrHIN ONE YEAR 2025 2024 TTade debtors Prepayments 150 16,464 14,980 14,980 16,614 11. CREDrfoRS: AMouNfs FALtING DUE wrfHIN ONE YEAR 2025 2024 Other creditors ACCTrlS and defeed income 702 38,280 3,102 38,280 Page 22
Dwslgn Envelope ID: E8o46ADF.2E5&424E-BO1189394E38Bc8A RErr UK A COMPANY L DBY NOTES TO THE FINANCIAL STATEMENfs- continued FOR THE YEAR ENDED 31 H 2025 12. LEASING AGREEMENTS Minimum Icase paym¢nts under noTrcancellabk operating kases f1 due as follows: 2025 2024 Within one y 912 13. MOVEMENf IN FUNDS Net mov¢ment At 3113125 At 114r24 Unrestricted funds Genernl fimd 188,125 (120542) 67,583 RtrIcted fuDd$ Rcsearch Fund Big Give Eyegaze Fund 7.742 7,742 31,000 14.000 31,(MJO 14.(K)O 7,742 45.(XX) 52,742 TOTAL FUNDS 195,867 (75,542) 120J25 Net niovement in fillrt% inchmkd in the above are as follows". Incoming Resources Movement in fimds Unrestricted fund5 296.168 (416,710) (120,542) Restrieted funds Big Give Eyegdze Fund 31.000 14,000 14,(KXI 45,(xX) 45,000 TOTAL FUNDS 341,168 (416,710) (75.542) Page 23
Dwsign EnveloFe ID.. E8046ADF_2E58424E-B011H9394E38BC8A RErf UK A COMP LIMITE BYGU NOTES TO THE FINANCIAL STATEMENTS- eontinu FOR NDED 31 MARCH 2025 13. MOVEMENT IN FUNDS. Continued ComparadY for DVem¢llt in hnds Net movement ID funds At 3113124 At 114123 UnMtricted hnds General fund 2(X).804 (12,679) 188,125 Restricted funds Research Fund 7.742 7,742 TOTAL FUNDS 208,546 (12.679) 195.867 Compardtiv¢ movement in fiulds. included in th¢ ab)ve aTe as follows: Unrestricted funds 305.881 (318SfA)) (12,679) TOTAL FUNDS 305.881 {318,5fK)) (12,679) Research Funds All rnonies in the Reseawh FutKJs are utilised to suppjrt treatments and cure& EMPLOYEE BENEFrr OBLIGATtONS The charitable company 0*S a defined contrknution pension scheme with contnl)utions being made by Ix)th employer and ¢mployees at variabl¢ Tatcs. Total peL8ion costs in the cunEnt year amounted to £3,042 (2024: £2,827). At the year end £702 was due to the provider (2024: £nil). Page 24 continue(L..
t)0{S3n Envelo ID.. E8046ADF.2E5&424E.B011M9394E38BC&4 OMP ILWED NOTES TO THE FINANCIAL STATEMENTS. OR THE ENDED I MARCH 25 ntinued I& RELATED PARTY DISCLOSURES There were no related paty tiansactiotss for the year ended 31st March 2025. E J Le-wardc. a Tr81ee, is the son of a of staff.