Trustees Report and Accounts Year ended 24[ th ] January 2026 ## **Contents** ## **1) Structure, governance and management** ## **2) Report of the Trustees for the Year Ended 24 January 2026** - a) Charitable purpose statement - b) Fundraising Activities and Performance in the Year - c) Charitable Activities – Clinical Research - d) Developments in the treatments of SMA - e) Future Outlook ## **3) Financial review and Governance** - a) Financial Review - b) Governance - c) Independent Examiner’s Report ## **4) Accounts** - a) Statement of Financial activities - b) Balance Sheet - c) Notes to the Financial Statements 2 ## **1. Structure, governance and management** |Charity name|RESEARCH SMA (Changed from Rally Round Rupert on
14thJanuary 2026)| |---|---| |CharityRegistration|Registered in England and Wales;Number 1201716| |Contact Address|81 Jennings Road, St Albans, Al1 4NY| |Bank|Natwest Bank,St Albans| |Trustees|George Mosey (Chairperson)
Charlotte Mosey
Janet Harvey
Matthew Atkinson
Paul Drayton
Dave Auckland
Annemari Merilainen-Ottridge (resigned 28thFebruary
2026)| |Website|https://researchsma.org.uk/| |Contact us|info@researchsma.org.uk| 3 ## **2. Report of the Trustees for the Year Ended 24 January 2026** The Trustees, who also serve as directors of Research SMA (hereafter referred to as "the Charity") for the purposes of the Companies Act 2006, are pleased to present their Annual Report and Unaudited Financial Statements for the year ended 24 January 2026. ## **a. Charitable Purpose Statement:** The objectives and aims of the Charity are to relieve the need and protect the health of children and their families affected by Spinal Muscular Atrophy (SMA) throughout England & Wales for the public benefit by: - Working to improve the understanding and knowledge of Spinal Muscular Atrophy (SMA) among the public. - Providing financial support to further advance clinical research into Spinal Muscular Atrophy (SMA). ## **b. Fundraising Activities and Performance in the Year** The Trustees are pleased to report on the Charity’s activities and financial performance for the year ended 24 January 2026. The Charity’s primary objective is to generate income in support of its charitable purpose. This is typically achieved through a flagship annual fundraising event, supplemented by smaller, standalone activities throughout the year. These efforts are supported by an ongoing strategy to raise awareness of SMA via the Charity’s website. In June 2025, the Charity hosted its major fundraising event — ‘100 WALK 100’ — a 100-mile charity walk along the Jurassic Coast. The event, held over three days, attracted more than 100 participants and was a resounding success both in terms of fundraising and engagement. The event proved to be a tremendous success, generating over £125,000 in direct donations for the Charity. Beyond these essential funds, the event significantly raised public awareness of the condition. 4 _The finish line of our Jurassic Coast Event where over £125,000 was raised_ During the year, the Trustees approved a change of name from Rally Round Rupert to Research SMA, reflecting the charity’s growth and expanding impact. The charity remains committed to raising awareness and funding clinical research, and will also continue to develop strong and meaningful partnerships with families, clinicians and leading research organisations. As the charity has matured, the Trustees have reflected and feel that the new name better represents our mission and future ambitions. Research SMA marks the next chapter for the charity, building on past achievements while positioning us to drive further progress in SMA research and care. Annemari Ottridge resigned as a Trustee in February 2026. The trustees would like to thank her for her contribution and acknowledge the improvements that Annemari brought to our decision making processes and thinking related to the research projects that we support. 5 ## **c. Charitable Activities – Clinical Research Commitments** During the year to 24[ th ] January 2025, the charity pledged £107,000 of funds to Great Ormond Street Hospital and partners, to conduct a 2-year Nutritional study. This study continues to operate, and results are expected to be published in 2026/27. Funding of £100,000 was awarded to the University of Oxford during the year to 24[ th ] January 2025 to fund a clinical trial into physiotherapy for children with SMA. The project continues to run successfully with results expected to be published in 2026. ## **d. Developments in the treatments of SMA** 6 The wider SMA community has long pushed for advancements to treatments for SMA, and Research SMA has always been a vocal proponent of this. Early diagnosis and access to effective treatments remain critical in improving outcomes for children with Spinal Muscular Atrophy (SMA). During the year, there has been continued progress in both newborn screening and treatment availability. Heel prick (newborn blood spot) testing has gained increased recognition as a vital tool in identifying SMA shortly after birth. Early detection through this method enables clinicians to begin treatment before symptoms appear, significantly improving long-term health outcomes and quality of life for affected infants. Newborn screening for SMA will begin across 72% of England from October 2026 with the remaining six newborn screening laboratories to begin screening from October 2027. NHS Scotland added SMA to its newborn screening programme in an evaluative and research capacity from the 23rd March 2026. Alongside advances in screening, the role of the National Institute for Health and Care Excellence (NICE) in evaluating and approving innovative SMA treatments has been pivotal. NICE has approved a number of disease-modifying therapies for use within the NHS, giving eligible patients access to life-changing treatments that can slow or halt disease progression. These decisions reflect the growing evidence base and the importance of sustained investment in clinical research. Together, the expansion of early diagnostic approaches and the approval of new therapies mark a significant step forward in the standard of care for SMA, offering greater hope to families and reinforcing the importance of continued research and advocacy. ## **e. Future outlook** Following a successful year of fundraising, the Charity is planning to expand its support for clinical research in the year ending 24 January 2027. Discussions are currently underway with potential bodies who have suitable ideas that align with our Charitable Purpose. 7 Fundraising activity remains central to achieving the Charity’s objectives. We have already undertaken our key fundraising event, where 100 people walked from Leeds to Lake Windemere along the Dales Way raising money through sponsorship. As in previous years, we were proud to have been accompanied by Stan, a person with SMA, in a specially adapted all terrain wheelchair who with a dedicated support team was able to overcome obstacles throughout the weekend. In addition, two Trustees successfully completed the Brighton and London Marathons in April 2026, helping to raise awareness while proudly representing the Charity in its new mascot attire. _Dales Way June 2026_ 8 _Brighton and London Marathons April 2026_ The Board of Trustees remains firmly committed to advancing knowledge of Spinal Muscular Atrophy and supporting impactful clinical research. On behalf of the Board, we extend our sincere thanks to all supporters and volunteers whose generosity, time and dedication continue to make our work possible. Your ongoing support is deeply valued and essential to our progress. 9 ## **3. Financial Review and Governance** ## **a) Financial Review** The Charity raises funds to meet its objectives while maintaining financial stability. In its third year since registering as a charity, Research SMA had net income of £113,306 (2025 - net expenditure of £39,582). This arose from £129,021 of income from fundraising events (2025 - £132,187), partially offset by the costs of raising funds of £21,148 (2025 - £9,752) and supported by interest income £5,433 (2025 – income of £3,379). The charity undertook no charitable activities in the year (2025 - £165,396) but continued to support our existing ongoing clinical research projects with major internationally recognised research organisations. As at 24 January 2026, the Charity had total net assets of £256,798 (2025 - £143,492) of which £41,604 is designated for the ongoing support of the SMA4Nutrition project. All of the income for the year is unrestricted. The Charity has adequate reserves to continue in operation and support its ongoing obligations as they fall due. ## **b) Governance** The charity is controlled by its governing document and a deed of trust and operates as a Charitable Incorporated Organisation (CIO). There is an annual review of trustees in line with the governing documents of the Charity. ## **c) Independent Examiner’s Report** I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination giving me cause to believe that in any material respect: 1. accounting records were not kept in respect of the Trust as required by section 130 of the Act; or 2. the accounts do not accord with those records; or 10 3. the accounts do not comply with the applicable requirements concerning the form and content of accounts set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a 'true and fair view which is not a matter considered as part of an independent examination. I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached. Christopher Hardy ACA Associate of The Institute of Chartered Accountants in England & Wales 4 Hambleden Drive Wallingford OX10 0PQ Date: 27th July 2026 Approved by order of the board of trustees on 27[ th ] July 2026 and signed on its behalf by: George Alec Mosey – Trustee and Chairperson of Research SMA Date: 27[ th ] July 2026 11 ResearchSMA 4. Accounls Stskmentofthan¢knlactr4lk$ Forthe year ended 24 January a)26 Yearended 24th Year ended 24th nuary 2026 nuary2025 ijnwestrkted ￿nd Unrestktsd ljnd Noks Income OthertRdng actNttEs Totslkncorne 129,021 129.(r21 13? 187 132.187 Expendknr• Expe nditure on B igng funds Expenditure on ¢har[tab￿ actNrtps Tots l expendilure 121.1481 19.7521 165.396 (175,148) (21,14 Inte re* Income 5,433 3,379 Net kn¢ome I (expendI￿re) 111>J6 (39.582) Netmovementkn *nd$ TolalfUndsb￿)ughtfO[warrj Totslthndsearrkd kn￿ard (39,582) 188 074 143.492 256.798 Balance the•t Asat24 January 2tr26 24th January 2026 24th J•nuary 21ll5 Mo*$ Prepayments Cath atbankand kn hand TotslcuThentaTrts 10 Credltors 8rn0unlsfalng due wlihkn one year Netcurrenta$8etr4(kabkn* Tolalnetas*ts 2.025 2,395 145997 148,392 251798 Generalfund De9Jnated fvnd Totsl Funds 215,194 101,888 12 ResearchSMA Accounfjng PokiE5 1 Ba*$of preparing the fmancial slatsrnents The f￿anC M l gatetnentsof the c hari1y. wh￿￿ pubk benefft ellltty undei FRS Itr2. have been prepared kn accordance ¥￿th 1he CharM*s￿Rp(￿lO?).ACC0Un1kng and Reportlng by Charttles sta lement ol Recomrnended tlac lice a pptabk lo chatllE5piepa￿9 Iheir accounts accordance with 1he ￿a￿claIReportlng &andaid apP￿ab￿ w the UKand ftepubl￿ oflreknd IFRS 1021 (erfect￿e 1 thnuary Z)19y. Fknanckl Reporihg Standatd 102'1he Fknanckn l Reportkng &and8 rd appk a ble wi 1he UK avd Repubk of Ireland. and Ihe C harilie5Acl XIY2. The financwl letnent5 have been pEpafed undei 1he h￿o￿al cost conventM)n. Income All ￿COrne isrecognr*d li Ihe Satemenl ol FMancHI Ac tNitEsonce the chawtty hasen11t￿rnent to 1he fund& tt &proba that econornt benefNswl fk)w to the chattty and ff the amount can be m Èa ￿red rÈltsbty. Expendthre EKpendlture Isthe amounl of the tha￿ly'sie￿￿ree$1hat have been 4)ent orotherw1￿ u*d up kn carrying outitsac1wNies iwbfjlEsaE recOgTr￿d asexpendllute ass)on asthere ￿galor con*tuc1Ne oblga1w)n c0rntnrfl￿g the chaitty to Iha t ewendlluie. tt ￿ probab￿ that 8 1[an￿er of econom* benenlswllbe required h ￿lt￿Men18nd thè amounl ofthe ob*Jatk)n can be ea wred relpbly. &pendtlure ￿acCOu￿ted for on an accruatsba 35and ha 5been clasBtEd under headlngstha t a ggtegate a I co* tekn ted to the ca1egory. Where costs c a nno1 be diec t all￿bUted 10 part*ukr headlngs they have been ak)ca ted to aC1￿m*S0n a ba Iscon*31ent wtth 1he U￿ of iegjurces Taxalon The charfty &exempt from laxon Mschathable acl￿11￿$g￿en alkncome forch8rf1ab puTpo*s Fund accounkng Unre&lK ted fund5can be u*d ￿ ac c ordance wtth Ihe cha Thtab￿ obFc tr￿esa t the di%retw)Tr of 1he 1￿Steesf0r etther general u* 01 de￿ll81ed for a parllcukr u*. Restr* ted fundscan onty be used for ulai reslr* led pu0)0￿$WIthkn the objec Is of Ihe cha rfty. RedtK t￿￿5 a when yecrfied by Ihe donor ow when fundsare rd foiparlK ular led purpo*s Cash atbankand in hand Cath at bankand wi hand ￿hekj 10 meel thort tetm comwnilmen1sasthey tdldue and Inc ￿deSaI ca th equha ￿ntShek1 kn the lorm of thort tertn hlghty Iqukl Inyegtnents A ca equhfalenlwlhave a mamium malurfly dale ofihree monlhsfrom the dale ofa¢qu$tion. 13 ResearchSMA ReseNes Pol*y Tre Tru ste es have ad op ted Ihe followng re*rves polcy to en￿re the ongoing operat￿rn al sta bilty ofthe charity and iisabilily to meetitsmraiegc objeciNe& Tre Trusteesaim to hold a M￿lMuM Operat￿naIre*rYe of￿0.0001n cath. IhLSlSto provide a againstunexpecied dropsin Income orunfore*en cost& Beyond thtsoperanonalre*rve, the chanty'smodelisto accumulate generalunresmcted fiJnds ahead of awarding re&arch grants Ihe Tnjsteeswllidentrfy and pkan forfvttjre expendibJre8 and thiswill nform the overal Èvelof fijndsheld. Ihe Tnjsteesacknowledge 1hat fOlknW￿g a sgnificant di￿￿r￿mentOn charrtable acllville4 re*rvesmay fallbutcornmiThentswllnoibe rnade that take the pogiion bebw Ihe mnimum operat￿ndIre￿Ne lewel. At24January 2026. the chanty'sre*Nesof£256,P3B are above the targetrninimum operational re*Ne. Tre TnJsteesconsderthisÈveladequate to conbnue In operabon, ￿pport Cjngoing obligatDn8 and begn accuMulat￿g fijndsforthe nexicycÈ 0fre￿arch project& InvethentPollcy The trusteeswill ontry place cath wrth bankswith a Moody'sratng ofAA3 orbetter. The tnjsteeswill place cath In an Interestbeanng depostaccountio Ihe extentlhatii*noiiequied ￿ the thort term lo oplimise Investmentincome. 2 Othertrading activifjes 0thertr8d￿a 8CtivttiesGompri*sentirely ofincotne from fvndrai8no events 3 Invesknentln¢ ome Investmenl Income relate8to bank intere8treGewed during the year. 4 Trusipeg remunerafjon and benefts There were no tru8teeg remuneiation orotherbenefitsforthe yearend 24th January 2026(2025- NH) 5 Trusteeg expen*s There were no tJusteeg eXpen￿SpaKI forby the charity forlhe yearended 24th January 2026 2025- Nil) 6 Expendi￿re on r8 i5￿g fijnds Expenditure on r8isnq ffiJndSielatestocostsa￿cHledWith a fundrawq event Year to 241h Year to 24th January 2026 January 2025 Event material cost Web ste c 08ts Otheradmin￿rative costs GDFundMe tran￿ctIOn costs To* l expendi￿re on rn i5￿g •Jnds 16,656 198 687 4,858 339 187 7 Expendi￿re on charitable ac fvrbes Year to 241h Year to 24tt) January 2026 January 2025 A 4Nutntson ACE WA Physio Tri21 To*lchari*ble actrity COSIS 65,396 100000 14 ResearchSMA B Movementin fijnds Nei Al25ih movemen1 At241h January 2025 nds January 2026 Unrethctsd •Jnd8 G eneral lund De￿nated 121 Djnds 101.B 41 604 113.306 21&194 Transfer bemeen Movement nds In ￿ndS IncoM￿g uiilk*d In the reg)urces year Unre￿c*d ￿ndS G ener81 fijnd De￿nated Tr)tal ￿ndS 113,3 113.306 113306 Ihe G enerdl Fund repre￿￿1£ the free re￿1¥￿s0f1hQ chariiy a¥adable forilsgÈneral chania ble pu￿0￿% Ihe Deggnated Fund of £41,61J4 brought loThvard from 2025 rem£ins(Jesgna1e4 lorre*8rch Inlo Ihe nutlltional need$olchiblren wrth SMA. Thero wasno ulilL4 I￿n for Ihts purpo* during ihÈ yéar wilh adequÈ1e funding of ihe proieci 8 kè8(Jy provided. Thisleavesarnouniscommrtied of [41.604 Iha I will be pa￿ oui In ihe ye8 r 10 241h J8nuary ?￿7 durDg which time 1he projec1 Isewec1ed 10 dr8W 1he rebt of the funds8 nd re8ch COTnpÈtDn. Dunng the year there wa sno 2 pplea I￿n of Éither Iho G enoral Fund or the Dosgna led Fund 10 fund Ihe Expendiiure on Ch8niable A cir4itse$l*e Noie n 9 Prepaymentsand Accrued Income Asat24t As8t24th January 2W6 Janua ry JJ25 Prep3id expen*sfor fvndrd1￿g evenl Accnjed Inieresi recerrfab Tot81 2395 325 025 395 10 Credi￿rS Asa1241h As81241h nuary 2CQ6 January 3)25 Deferred Income Tota I 11 Rel8*d p81ty dixlosjres Ihere ￿ere no related party Iransc1ionswilh any of1he trutheesforlhe year ended 24January PD25- NID. 12 Events8fer the ieporlng perksd Ihere were no eventsafter the end of the reporfinq pemd a ffEclinq 1he chanty. 13 Independentexamher co Ihe *r¥￿e$proVI(jed by the In(Jependen1 ex£ minerwere carne¢J out graluilougy an(J no feeswere IncU￿ed. 15