2024-03-31-accounts

ANNUAL REPORT 2023-2024 14 •4 Spinal Muscular Atrophyuk SUPPORTING • INFORMING • ADVOCATING

Chair's Report I look bock over the lost12 months with great pride at the achievements of SMA UK, a year in which amongst other things Saw a seamless transttion betwee Angela Smith-morgan and our new CEO, Giles Lomax. Our Support Teom, once ogoin, has delivered on exceptional service to all those affected by SMA and ontinues to be ot the core of everything we do, whether it be providing practical or emotional support to onyone offected by SMA or lioising with neuromuscular advisors and other healthcarè professionols to ensure that all those living with SMA receive the best possible care. The team have olso advocoted on several key topics incfuding ensuring continued access to disease- modifying treatments through the NICE multi technology assessment (MTA) process, an area of work we w411 keep working on behalf of the community so overyone living with SMA should have access to a treatment if they wish. The Charity was thrilled to secure a grant from the Motability Foundotion whTch enabled us to lounch the SMArt Moves programme supporting the community to oc¢ess gronts for wheelchairs ond other pie¢es of much needed mobility equipment.... A real game honger! Community engagement continues to be o major focus with our Picnics in the Porks, the adults 'Resonate wèekènd, hèld in Exmoor in July ond Our ofilinè community networks. In addition, we hove launched a new Adult's Advoccxcy Steering Committèe which is o key platform for us to gather insights and key advocacy priorities from the adult SMA community.: In November, the second terms of four trustees come to on end ond following o re¢ruitmerJt prooess we appoi nted Maryann Aspinal, Tracey-Jane 8ailey- Burnley, Rogg Hovey, Jènniè Shehan. and Ben Williams as new trustees. l am excited to have them all as part of the board. You can reod more about them on our w8bsite. For the Ilth year running, we were proud to be oworded our PIF accreditatton (Previously the Information stondard) which confirms that our SMA related information has been through a professional and thorough production process ond is based on reliable, up-to-date evidence which is communicated clearly. SMA UK is here to represent unyone living with and affected by SMA. During the year we launched our new and rebranded website and social media channels, which I hope you agree showcases SMA UK as a rftodern, forword thinking ond (Jgtlè ehority. Wé htsve also reviewed our internal data management systems and reviewed our organisational structure which will enable us to serve the community as b8St as possible. Of course, SMA UK con't operate without you- our generous donors, our wonderful supportefs, our incredible volunteers, and of course our amazing team who hove all WOTked so tirelessly to keep on delivering for the SMA community. Thank you! Newborn screening continues to be a priority tor SMA UK and we were delighted that thè Newborn Screening committee (NSC) announced in June that on In- Service Evoluation (ISE) would toke plijce. In addition, several SMA UK colleagues were invited tojoin the SMA in-service evoluation (ISE) partnership boord and associated 3 sub-groups to provide expertise and insights into how ond when newborn screening for SMA will be delivered in the NHS across the UK. We will continue to do everything in our power to 9et SMA included on the bloodspot programme. The success of SMA UK depends on the hard work and dedication ol so many people including our volunteer trustees. It was with great sodness thot in October we learned of the deoth of one of our trustees. Clare Gray. Clare was o powerful advocote not only for the SMA community but also for the èntire disabled community. She will be greatly missed. Murk Dearlove Chair of the board of Trustees

CEO Report As we draw 2023124 to o close, I can look back on my first year as CEO extremely positively, and our annual report will reflect this witti some of the amazing work the team have donè on bèhtslf ofthe SMA community. Despite the cost-of-living crisis, pressurè on the charity sector and impact on securing funds, SMA UK has gone from strength to strength generating income to deliv8r vital programmes, projects and services that the SMA community really want and need. Over the last12 months, and moving forward, we will continuolly review the volue in the pound to ensure that funds thot are raised directly benefit the SMA community. I would like to publicly thank all of the staff for their hard work and dedication, we really do have a fantastic team, and l am extremely grateful for our incredible supporters and donors as withoutyour efforts we would not be able to carry out our vital work. Giles Lomax Chief Executive Officer

ADVOCACY UPDATE

Evrysdi- (risdiplam) for oral solution 60mg180mL (0.75 mglmL) Newborn Screening The Newborn Screening Committee recommends that plann>ng starts for an in-s8rvice evaluation (ISE) for newborn gcreening for SMA. The 'pilof will inform th8 economic modgl. Spinraza" Progress on this work was reported to the June 2023 UK NSC meeting and committee members endorsed a 2- fold recommendation for the projecys next steps to simultaneously. Attetition pharfPaCiSt: Evrysdi mu COD5tituted wilh woter pnor to d (nLJsinersen) Injection dèvelop a nèw comprehensive and flexible cost effectiveness SMA screening modelling study for the UK sereèning context otsl krlurne èfier start scoping an in-service evaluation (ISE) of newborn screening for SMA in real world NHS services in the UK NICE Multi-TechnologyAppraisal for Risdiplam and Spinraza Part ol the ISE is to create a number of sub boards including the SMA ISE partnership board. IVS role is to oversee the development of the ISE, ensuring it provides robust eviclence to support a definitive UK NSC recommendation. What is our role as a patient organisation? From professional discussions with industry and linicians, it became clear that the clinical evidenco was not fully reflecting the real-life experiences of treatment for those living with SMA. Notably, the value of stabilisation for adults and the importance of access for all no matter the severity of the condition. What is it? The National Institute of Health and Core Excellence (NICE) approved Nusinersen for funding through the NHS in England in July 2019 and Risdiplam in August 2020. This announcement is progress. Ifs a decision that shows the impact of th8 work of the Newborn Screening Alliance (SMA UK & MD UK}. Butwhilst newborns will be screened for SMA during this evaluation, it is not the final decision that we, the SMA community negd now, and it does not catch us up with the rest of the world. This was on the condition that researchers would collect more information from patients ond their clinicians on how we11 it works, how safe it is and whether or not it is good value for money. This was because, at that time, the NICE committee did not feel there wos enough evidence from the clinicol triols to answer thèse questions. SMA, be4ng a rare disease, meant the numbers of participants were not big enough to satisfy a final recommendation. Working olongside Treat SMA and MDUK, SMA UK led on a response os a unified voice from the SMA community whtch was submitted to the NICE appraisal committee members. The work started with ctn intormation webinar to inform the community about the appraisal process and how they could contribute their experiences and views of Spinrozo ond Risdiplam. UK SMA Newborn Screening Alliance Both treatments have been funded viatime limited Managed Access Agreements (MAA)which come to an end in 2024. A survey was circuloted within the SMA community based on the very specific questions the patient orgonisotions were being osked by NICE. People prescrtbed either of these drugs, have been completing physio assessmerits, answering questions and completing patient reported outcomes to creatè clinicol data which will be used as evidence olong with data from new clinical trials. We received 145 responses to the carer survey and 115 rèsponsès to thè survey for those living with SMA. The dato was anolysed and summarised ond a joint submission will be submitted on the19th April 2024.

DisabilityAction Plan 2024 In July 2023, the UK government soughtvaluable feedback fiom the disabled community regarding their ambitious goal to transform the UK into'Th8 most occess£ble place in the world lor disabled people,. SMA UK took proactive steps to gother insights ond perspectives from the SMA community, collaborating with numerous other disobility-focused organizations to compile a comprehensive response. Following thorough consideration of all submtssions, th8 government publi5h8d th8 action plan on 5th Februory 2024. This plan outlines strategic initiatFVéS and measures aimed at fostering inclusivtty and occessibility across various sectors. For further details on th8 action plan and its implications.you con flnd more intormation here. Genomics England's Generation Study WÈ wèrè delighted to sèè SMA is on the list of Ovèr 200 treatable conditions for the Generation Study. Genomics England who ore running the study describe the project as an "NHS-embedded research study whrch aims to understand whether sequencing babies, genomes can help to discover rare genetic conditions earlier.- Spinal Bracing Through SMA UK social networks, it has been mode clear thot diffèrent NHS Trusts across the UK have different paediatric spinal care pathways. Several families are going to the private sector to occess braces that they perceiv8 to be more comfortable and more efficacious. often from a recommendation from another family, not a clinician. The Generation Study. will sequence the genomes of 100,000 newborns to look for a specific set of rare gÈnètiC conditions thtst offèct babiès tsnd con bè acted on. To raise awareness of this issue ond to lay the found¢Jtiong for one of thé topics propogÈd for thè SMA Care UK Project STrdA UK designed and circulated a survey to the paediatric braced community. Dr Quince, a research fellow form Sheff ield Children's Hospital ogièed to anolyse ond summarise the data. The findings highlighted the inequities in provision across the country and have initiated a clinical survey which will go to oll speciolist sites to establish what their pathways for spinol care look like. The two d(xto sets will be combined into a report which we hope will facilitate trusts across the UK to work towards some alignment in the field. The study is not an alternative to newborn screening, its purpose is to evoluote the feasibility of screening newborns for a lorger number of childhood-onset rare genetic conditions in the NHS, using whole genome sequencing. It will be exploring the potential risks and benefits of storing an individuol's genome over their lifetime. We expect os many as 40 NHS Trusts ocross England to porticipate over the course of thè study. which runs until March 2025.

Adults Advocacy Steering Committee SMACare UK Clinicions and Patient Groups want to establish a Project (SMA Care UK) to update and implement UK standards of Care across all ages. A proposal is due to be finol¢sed in 2023 when SMA UK Will endeavour to secule funds to support the first 3 years of the project. To ensure that the priorities of the adult community are heard and that we are representing all members of the SMA community, we launched the Adult Advocacy Steering Committee in August 2023. Clinicians and Patient Groups want to establish a project to update and implement UK SMA Standards of Care across all ages und groups. The project would oddress people's evolving care and monagement needs reflecting devesopments around treatments, ensursng that those living with SMA are centrol tg this process. Led by oul Head of Advocacy and Community, Portio Thorman, and facilitated by soctal entreprerieur living with SM4 Martyn Stbley, the voices we hear from the working group will shope ond form the SMA Core UK ro aectand furthermore, will inform SMA UK'S long and short-term strategic planning. Childrens Book Project We were delighted to be owarded o sponsorship from Biogen to produce a new children's book all about SMA. Althou9h SMA UK hove previously published books"About SMA and Me" with the introduction of treutment, these ore now out of date. The main objectlves of the first 3 years of the project would be: To review the International Standards of Care {SoC) {2017) with clinicians and patients to identify key aspects of car8 that require revision l update in light of the chonging SMA londscape. Furthermore, with the possibility of newborr) screening for SMA on the horizon it was felt we needed to produce o non-fiction book focusing on- The geneti¢s of SMA Timeline ol scientific progression, how for research hos come How new treatments work on your body Individual differences, why your SMA looks different to someone else's SMA health professionols and their role Living with SMA and support To establish an UK SMA Soc consensus for each area of car8. iy To implement and disseminate a UK minimum recommèndation for eoch aspect of care. Address Ènequalities in care for f(2milies and adults b8bNeen different sites across the UK by campaigning for this UK standard to be accessible to all poople who have SMA, no matter where they. live. The book wilT be due for publicotion in December 2024. Identity orèos of trore where ￿rther work I 8vid&nce I research is needed, and work with SMA Europe ond other international groups to develop new consensus statements for specific elements of care. How canyou help. Learning from individual expeTiences Is $0 tmportant when trying to find best practtse. If you would like to inform the diagnosis working group of the SMA Care project by gharing your diagnosis story, then our Head of Advococy and Community would love to hear from you. Link wsth ongoing internationol initiattves to update the Soc recommendations based on the evolving theropeutic fands¢ape. Please emall [e-mail] We look forward to updattng you as the project developes.

Partnerorganisations SMA Europe SMA UK continues to work with partner organisutions to bring a united voice on issues which impact those livsng with physical di8abilÉties. Working with umbrello organisations like Genetic Alliance UK and MDUK we can add the perspectives of those living with SMA to policy compaigns such as improved coordination of care, faster diagnosis and improved care provision. Annual General Meeting Prague In April 2023, SMA UK went to Prague to join delegates from around Europe to look at developments made over the last year and discuss the priorities for SMA Europe movir¥g forward. 4th SPIn￿ Mus¢ular kn - It was a fantastic opportunity to hear about access to treotment ond theropies ocross Europe ond to discuss what gaps still needed to be filled for the SMA community. You can listen to a podcast about the trip here. SMA UK continues to play an active part in the AdLJIts' and Childrens REACH networks, bringing the patient pèrspective to them. SMA UK continues to work with Industry partners. We supported Roche in a Delphi pa.nel to gain expert consensus on the healthcare resources required by people14ving with SMA, the outcome of which will inform their economic model for the MTA evidence. ,aL' We continue to work with all three leading pharmaceutical companies, ensuring we have regular updates and taking on consultation work if aligned with our strategy. SMA Scientifi¢ Congress 2024 Ghent This was a fantastic conference that brought together speciolist clinicians, researchers, and industry and patient odvocotes working in the field of SMA. Before the event officially started representatives from SMA UKjoined a global advocacy event with advocates from over 50 countries around the world, and met eorly COreèT rèsèor¢hers to exploill Ljftmèt nÈÈds in thè SMA field. UK clinicions and industry experts expressed their gratitude tor the work SMA UK ore doing and how much they volue the working relationships we hove formed. Working with James Sleigh. our scientific correspondent who also attended, SMA UK shared a SLtmmary of eight research projects from the conference, read it here.

COMMUNITY ENGAGEMENT Picnic in the Parks spin MUStsJ Atr Summer 2023 saw the return of SMA UK'S Picnic's in the Park events for anyone living with, or affected by, spinal Muscular Atrophy. 214 people ottended three events, hosted in Essex, Yorkshiie and Gloucestershire, giving people an opportunity to connect with each other and of course, the SMA UK team. The positive feedback csnd sense of community from these gatherings insptred us to plon even more inclusive and engaging events for th8 future, ensuring that people affected by SMA always have a supportive and welcoming .community to turn to. ffll.lw ' It was lovelyto meet upwith people from last year and meet new families too. It's so great to build those connections and a support system so you don't feel so alone.

RESONATE J2023. "I didn'tknowmanyother peoplewith SMA before Resonate, and being able to spend time with others experiencing similarthings was realtyvaluable. Resonate weekend In July 2023, SMA UK was proud to launch our first Resonate event, an adventure weekend for 21 adults livÉng with SMA at the Calvert Trust, Exmoor. The wèèkend fétstLJrèd u full ugènda of OC¢ÈSSiblÈ activities like abseiling, archery, crote stacking, swimming, and zip liningf Each actFvity was carefully chosen to be both exciting and inclusive, a14owing porticipants to push their limits and try new things. I was also able to participate in activities I didn't thinkwere possibleforme. such as abseiling and zip lining! It was suchan amazingcouple of daysand I've made some brilliant memories- thank you SMAUK!" Sophie Resonate 2023 wasn't just about the activities, though. It was olso about building new friendships and creoting lasting memories. Check out the highlights and hear from participants about their experiences at Resonate 2023 here.

dj •*PP LIVING ITH SMA PODCAST IDULI.S WhatsAPP Community Networks SMA UK'S WhatsAPP networks connect the SMA community across England, Wales, Scotland clnd Northern Ireland. They bring a sofe, well moderated space for people IEving With SMA in Similttr ¢ireumsttsncès, who can support each other both emotionally and praetically. Living with SMA. Podcast and Webinars 1236 SMA UK'S udvocacy, engagement, support, information and Comms teams work closely together to identify the big issues coming from the SMA UK community across the UK. Podcast Dowloads New Subscribers +51% IEEIIEIHS The WhatsApp networks huve also been a fantastic resource for advocacy purposes, gauging opinion and experience through polls and questionnaires. This has provided insights for all of SMA UK'S projects and will continue to do so in the future. A topic is agreed and questlons are collected form the community via our sociol channels. Through our close relationships with specialist clinicians and members of the SMA community we are able to creat8 currenL informative digital content on YouTube foT the SMA community and theif support networks, both in the UK and internotionally. YOUIG ADUIIS 1.2K 31K 'Wotch Time +124° Views +89% 22 25 86 39 Adults Teenagers Families Young Adults

SUPPORT SERVICES UPDATE

Supportand Outreach Service Support is ot the core of what we do at SMA UK. Over the past year the Support Team has continued to ofter high quality practical and emotional advice and support to anyone affected by SMA. We have supported 255 individuals and tamilies across the UK and responded Thè tetjm havè Supported fomiliég and indtviduals with one-off onquires and with morè ongoing complex situations, often r8lated to, for example their care ond support needs, education, employment benetits, housing, adaptations, ar¢d equipment. We have provided information on treatments and supported people in finding information and further support with their hoalth and wellbeing, stgnposting to others who moy offer help. Thls map illustrates tho l. spread of location where people are supported. The team have written supporting letters that explain the impact of SMA on the individual and have requested that services respond appropriatèly for that person. Our supporting lÈttÈrs, on mony occasions have been successful yn securing o positive outcome for the individual - for example maintaining a taxi service to and from school tor an 8-year-o¢d boy, and on two seperate occasions, ensuring that (J family received a full needs ossessment for their child. We have attended meetings with adults and families, home visited, and supported amotionally and practically lor as long as we hove been needed. 255 individuals with SMAand families supported across the UK •••r Nicola Beer joined the Support Team in August- she comes from a health and social care background and ovér the last few months has enjoyed getting to know the SMA community.

.1111 Ourworkwith partners The Support Team continues to link with the Neuromuscular Centres, Neuromuscular Advisors and specialist nurses. We visited Winsford Neuromuscular Centre, seejng whotthey do ond how we ¢on access the support they olfer. We continue to link with other charities and organisations to bring the best possible,. support to the SMA community. trl Flexible Response Grants (FRG'S) SMA UK offers Flexible Response Grants to families and individuals in need. These are managed by the Support Team and are administered via two grant sehemes; FRGI FRG I, offers financial support to attend hospital for treatment or medical assessments, and this year we gave 47 grants from £20.00 to £656.00. FRG2 FRG 2, offers financial Support with itemslservices that are not met through other grantslfunding sources. This year we gove 31 gronts from £74.17 to £1070.00 The largest proportion of these gronts have supported hildren ond adults to access disease modifying treotmenL There were also grants given in support of acute hospital stays, spinal surgery, sleep studies and oth&r assessments. The largest portion of this grant provided non-NHS equipment for exomple car seats with isofix ondlor buggy bases. Go-to-SÈats, a Squiggles mot, and mobile hoists. There were also smaller grants for urgently needed household items, and Support to attend events, for example Resonatg. Toypacks We hove sent out 22 toy packs to newly diognosed babies, their parentslcarers. These packs contain multl-sensory toys specially designed to stimulate young babies and are given to families free of chargg.

SMArt Moves BY SMA UK Motability Foundation Karol's Story Empowering the SMA community through mobility Karol is a lively 2-year-old with SMA Type l. His mother, K4agda, applied to SMArt Moves l.I tor help funding a Panthera Micro wheèlchaii. Although they had a Wheelchair Services voucher, they still faced an outstanding balance. Ally Allen became part of th@ teom this yeor, as Community Grants Officer overseeing tho administrution of our new SMArt Moves Grants. We (JrÈ dèlightèd thut SMA UK hag been awordèd grant from The Motobility Foundotion, giving us the opportunity to assist people living with SMA in purchasing mobility equipment and wheelchairs through our SMArt Moves grant. SMArt Moves is split into three grant-giving schemes- To date, we have had 33 opplications for both manual and powered wheelchairs, as well as for repa¥rs, batteriés, tsnd tyrés. SMAYt Moves stepped in to cover the remaining costs, paying the supplier direGtly. Thanks to this suppor¢ Magda could order Korol's new wheelchatr. Here's what Mogda had to say: By working alongside other grant giving charities we have supported several adults to secure funds to purehose new powered wheelchairs. We have also enabled families to access their child's first manual or powered chair. -1 am absolutely happy and gratefuy for the incredibly massive help Karol received to get his first wheelchair. A year ago, he was so weak that he couldn't even sit, roll or touch his toes. Now, he is able to move around in hys wheelchairl SMArt Moves 1.1 Offering grants to fully fund powered wheelchairs and manual wheelchairs that Gost up to a moximum of £5,000. Since receiving his new wheelchair, Karol is doing brilliontly. He absolutely loves his wheelchalr. His arms and hands are getting stronger, and everyone is so impressed with how easily he navigates narrow spaces and spins, even going backward is lots of funl SMArt Moves 1.2 Offering grants of up to £5,000 towards powered wheelchairs and manual wheelchairs that cost over £5,000. We are toking his Panthera to friends. houses so he (Jn move independently (Jnd ploy with friends. SMArt Moves 2 Offering grants up to £1500 for other mobility equipment, including risers, batteries etc. Thonk you $0 tyiuch for makAng this POssNble, ond for the huge support from Jo in the Community Support Team when applying."

INFORMATION UPDATE

Our Website Our website pages are designed so that anyone can easily find information about the causes, symptoms ond effects of SMA olongside information about treatments and care. To make sure all our information is accurate and up to date, we work with clinical experts and other hèalth professionals, many of whom join us for community webinars which answer quegtiong about health matters. Our 'Living with SMA. website pages respond to the many questions the SMA community ask us. Topics range from starting school and occessing work, to leisure, trovel and adapting your homo. We would like to thank the SMA community tor engaging so generously ond openly with us to highlight these important topics. All our information pages were successfully integrated into our new website in time for it's lounch at the beginning of August 2023. Since then we have had positive feedback from users. New information pages We published two now information poges for families who have had a recent diognosis of SMA. Between then ond 31st Morch 2024, OUT website top 'hits' were- Hearing your Baby's DiognosES of SMA Hearing your Child's Diagnosis of SMA Page Hits Looking After Your Child 3,590 As we worked on thes8, we were very aware that parents could find out that their baby has SMA as a result of the Oxford-Thames Valley and Wessex - Treatments & Research.. 2,645 Trusted Information Creator This meant thot wè had to carefully revkèw many of our information pages to make sure they were sensitive to this possibility. About SMA, 2,622 P4tiÈnt IDFprmatlon Forurn We wilT need to update them furtherwhen the National Screening Committee's In-service Evaluation for newborn screening of SMA goes live. We understand thss is likely to be sometime in 2025. In October we again passed the r8view that confirmed we remain a Trusted Information Creator, accredited by the Patient Information Forum.The PIF TICK Quality Mork helps people identtfy trustworthy print ond digital health information: pifonline.org.uklpif-tickl You can find these pages here.

Emergencycare Guide SMA UK were proud to publish our'lnformotion Sheet for Emergency Services, in August 2023, the result of months of collaborative work with families living With SMA and specialists clinÈcians. NEW RESOURCES FOR FAMILIES Children living with SMA may need extra support to recover from common ailments, r&quirin9 emergency care at their local hospitol. Frequently, frontline clinical staff will not have come acr068 SMA and we were hearing mony distressing stories from families obout the difficulties in accessing approprrate care in an emergency. Our staff teamg worked together with clinical experts to produce on information sheet for families to inform paromedics, the A&E teom and clinicions working in local children's wards. It provides informotion that will asskst them with their assessment and care pathway deveEopment. Carers can downEoad the document from our website You con find oll three informotion sheets in the 'Recently Diagnosed, section of our website here. Getting your child who has SMA readyfor school Autumn 2016 morked the very beginnjn9 of the possibility of disease-modifying treatments for SMA. For children who have SMA Type I these have been life-saving, and life-changing for other children who hove SMA. Most treated children hove gained strength, movement and better health. Though many do have complex care needs: with appropriate support these children are jotning mainstream schools. The pock iriclude6- A summary for schools about SMA Examples of how information about children who have different levels of need could be presented to a school Blank templates of these examples thot parents can use for their child As we have heard from families, however, getting o sehool ploee, is not always eosy. Therefore, wè developed a new resource for families, 'Getting your child who hos SMA ready for school. to help families as they start to think about primary education options. It was developed with ideas and input from Natalie Smith, Clinic(Jl Nurse Specialist ot Greot Oimond Street Hospital, ond families who had experienced this journey already. Thank you to them. Our staff worked with clinical experts and families to create a guide called 'Getting the Right Support and Educotion, os the educotion systems Qfe corrkplicoted and varies across the UK.

Communitywebinars Treutment Updates from Health professionals We produced five community webinars recorded with health professionals. These have been watched by more than1,400 people. We would like to thank the volunteers who hosted these and asked the questions posted by the community. Sept 2023 update on Treatments for Adults Jan 2024 Update on Zolgensma in the UK Find thom on our YouTube channel: vnmw.youtu￿.¢OMl@sP1nu1musCularAtrtsphYuK Conver$ation$ with Health professionals July 2023 Diet and Nutrition Oct 2023, Exercise and SMA Oct 2023. The Development of Cognition and Communication Skills in SMA Type I In 2024125 we plan to: Continue to maintain our Patient Information Forum ocoreditotion (PIF) for oll our heolth informotion, Continue to develop our Living With SMA sectton of thè website in response to community needs and questions. This will include more informotion for young people who are beginning to think about18aving school ond moving forvoord into odult yeors. We will further update our informotion sheets so that they are in line with the information published for the Notionol Screening Committee's In-service Evaluotion lor newborn screening for SMA (ISE for NBS) when this 90es l ive.

FUNDRAISING UPDATE

spinal mtJ5cuI •*. sp rnu￿u Frazer's Fundraising Story Frazer Lloyd and 30 of his friends and family, took on the mission of completing the UK Three Peaks Challenge in just 24 hours. The group managed to climb Ben Nevis, Scaffell Pike & Snowdon in an incredible 23 hours & 50 minut@s and were joined by even more supporters for the fjinol climb. Not only did they complete this mammoth Challenge in an unbelievable time, they also held a fun day- with bouncy costlès, ftscè Painting (Jnd gomes lor the kids, followed by live music from a DJ, a raffle and an ouction in the evening. Raising Funds We continued our digitol journey by lo.un¢hing o new website in August 2023, implementing our new branding. This allowèd us to offer the SMA community o bettèr usèr experience when sourcing important information about the condition, os well as o plotform to shore the community voice and developments within the SMA spoce. SMA UK'S achievements are only made wssible beccjuse of our g8n8rous donors and supporters. In order for us to continue to meet the needs of all those Tiving with SMA we need to ensure thot our fundraising income is sustainable and consistent Their mission wcjs to roise awareness of SMA, inspired by Frazer and Leah's nine-month old son, Frank, who has SMA Type l. Frank was born in January 2023 ond received treatment ot AEder Hey Hospital, who continue his care as an Outpatient following o long stay in hospital. Ir> 2023/24. thrI￿gh Vorious fundraising tirtives tsr donations ourraised income was £1263,853. Thank you to everyone who supported our viork in 2023124. We particularly would like to than Frank's Grandma, ShaTOn, says, "He is an absolute inspiration to us all. He defies all the odds that he's up against and powers through. He is an amazing, beautiful, lunny, little soul. Our little warrior and adored by our whole group of friends and supportive family., We offered a range of fundraising activities to keep supporters engaged, from chollenge events to coffee and cake days, ond were successful with o large gront from the Motability Foundation to fund our SMArt Moves programme, We also had a successful year raising Income from Trusts and Foundotions and through our fundraising campaigns. At the end of January 2024,155 individuals were supporting us with o regular gift and wè gratefully received four legacy gifts. All our wonderful fundroisers ond donors Our industry partners Novartis, Roche, Biogen & Pfizer The charitable trusts and foundations, particularly of note, Provinciol Grond Lodge of Worwickshire The family are keen to continue roising awareness of SMA with fL&ture events and will be making a donotson to SMA UK from the funds they have raised so foT. Thank you so much to you all for your amazing supporti The Motability Foundation for supporting our SMArt Moves grant initiotive

The Big Give Challenge 11.p • Ilh, I spinal muscular atrophv Thank you to everyone who donated to The Big Give Christmas Chollenge; we reoched our target of £30,000. Jyi r todoy, hope loi Christnias Challenge BlgGlve Ride Scorpion Porticipants in the 2023 Ride Scorpion event raised over £26,000. Thrs is a fun cycling event in aid of SMA UK, taking participants through the beautkful Cotswolds countryside covering opproximotely 65 miles! 'I'll' JIA Trustee Gala Dinner On 16th May 2023, SMA UK'S Trustees hosted"An Evening with Sir Richard Dearlove OBE at the De Vere Grand Connaught Rooms in London, raising £llO,000 for SMA UK. 11 Over180 guests listened to Sir Richard Dearlove, former head of M16, discuss global issues. The event also featured personal stories from SMA advocates, including Portia Thorman and Toby MiFdon. BBC Radi04 Chairty Appeal We were seEected to take part in the BBC Radio 4 Appeal Broadcast in August 2023, during SMA Awareness Month. Our appeal first uired on Sunday, 20th August and was available for worldwide listening. The appeal raised £15,000 while significantly increasing owareness. Il'j u'lji. Plans for 2024125 With the chorivs 40th annEversary approaching we w411 look at ways of maximisFng income and engagement with the SMA community and our partners. Matt ChoTley, a Times journalsst and broadcoster with two cousins living with SMA and o long-term supporter of SMA UK'S work, presented our appeal. We will contFnue to highlight the importance regular gifts make, as well as offering excitÈng chaIlenge events and fundraising compaigns to our supporters.

DIGITAL COMMUNICATIONS UPDATE

SoGiol media update The implèmentation of thè brand refresh through our social media channels has boosted engagement and reach. In the last year our Facebool Twitter and Instagram followers increased by 20%. In 2024125 we plun to" In 2024125, we will look to increase followers across all social media platforms as a means of engagement and information sharing with the SMA community, leveroging our growing online presence to create meaningful connections ond drive collaboration within the community. SMA UK hasa face lift! The needs of the SMA community are ever changing and we felt thcst our website, which is our main communication wtndow, needed to deliver information clearly as well as being a plattorm where the SMA community's voices con be seeri and heard, centre stage. As the decision was made to develop our website, we felt it was also the Tight time to Incorporate a brand refresh in line with the new site. 30.3K Instogram Reoch It was important thotwe gave the brand a refresh rather thon chan9e it completely and wonted o destgn that represented the charity's mission as a forward thinking, modern and agile one, that can be trusted and recognised as the leod voice for all people living with SMA and their families. 308K Old Logo Facebook Reoch spinal muscular atrophyuk So thot we made sure we met the needs of the SMA community within the website and branding, Wé Crèatéd ts Wèbsitè Dèvelopment Committèè consisting of a range of people living with SMA, their families, supporters of the charity and staff. The result is o brand and website that has incorporated their valuable feedback and we ore very grotetul for their input. New Logo Our TikTok chtsr)nèl, (Iounchéd in February 2023) ended the year with 145 followers. This is a greot space to share community videos and raise awareness for SMA. In August 2023 we launched the new website along with our new strapline. Supporting, Informing and Advocating which highlights the work we do alongside the SMA community and are areas that we continue to build on as a charity. spinal Muscular Atrophyuk

SMA Matters and e-ngwsletters li E-NEVdS 'OCTOBER I PD23. In April and September 2023, w8 sent out OUT bi-ohnuol updute magozine, SMA Motters. This publication, along with our monthly e-newsletter. 9erveg ag a vital plattorm for us to share the lutest an.d" most significant news and infoimation about alj things SMA wlth the cornmunity and their networks. $MArt Mov•s Through these comfftunlcations, we strive to keep our roaders Informed obout recent dev&lopments. research odvoncements, and up¢oming events related to The magazine featur.es in-depth orticles, personal .stories, expert opintons ond various r@sources to SUPPOrt those affected by SML Our goal access to the knowledge and support they need.: nv T￿Irr￿v￿rkn idvrr- 3.889 3,736 SMA Matters Subscribers E-News Subscribers OYouTube Find us on YouTube @SpinalMuscularAtrophyUK 65+ years 2.70/. 45-54 years 10.00 /. 18-24 years 22.60/. Our YouTube Channel Our Audience As shown in the chaTt to the right the majority of our YouTube channel viewers are young adults, with the largest segment being those aged 25-34. This is followed by viewers aged 18-24, and then those in the 35-44 age group. The 45-54 age group also has a notoble presence. In the lost year, our YouTube channel subscribers grew by 39% to 334. The channel is dedicated to supporting and empowertng all those affected by SMA, featuring a range ol content aimed ot raising uvoareness about SMA, providing information on the condition, and offering support to those impacted. 35-44 years 18.301. It includes educotional videos explaining the causes, symptoms, and treatment options lor SM4 as well as personal stories and webinars that discuss living with the condition and advancements in research and core. Older demographics are less represented, with fewer viewers aged 55-64 and even fewer 09ed 65 and above. Notably, there are no viewers in the13-17 age range. 25-34 years 41.70,

OPERATIONS UPDATE

Our Enhanced Systems Following on from last yeor's dat(Jbose upgrade to a customer relatFonship platform we are now deployed fully and reaping the benefits from the upgrade. We also used the change as an opportunity to increase the number of constituents we can work with on the platform, helping SMA UK with more capacity and retained working historical knowledge of our community. streamlining Operations and oftice Strategy Our IT & Operations department have dived head-long into brin9ing the automation of some of SMA UK'S bctsic businèss processès into the 2020s. Our plun ig to use the technological automation available to us through Microsoft 365's off ice tools. This means that new and established staff can all work to common standards ot operation aeross business apps and utilities. We've started with the automation of processes such as expense claiming as well as the harity's finonciol budgeting processes. staff Team As of April 2023- March 2024 Liz Ryburn Information & Support Coordinator Libby Roper Communications & Support Lucy De'L¢mos Head of Fundraising & Communications Yvonnewright Fundraising Administrator Rebecca Lewis Fundraising Manager stacey Shillingford Trust FuTrdrakser Giles Lomax C.E.O P•rtia Th•rmun Advocacy Lead Michele Phillips Outreach and Support Coordinotor Claire Holdcroft Outreach Worker After some due-diligence and cost analysis, the decision was taken to double-down on our exksting office space facilities for the foreseeable future. This has given the planning of physical resources a green light to cover the future needs of both office-based and remote home-based staff. It hos also allowed for timely renewals of some operationoa contracts with suppfièrs offording us good èfficiencies Over expenditure. Jo Spi¢er Outrea¢h Worker Becci Howell Outreach Worker Bec Noy Digital Communicotions Officer Long-Term IT Infrastructure Strategy Our strategy of IT-for-Staff is al so ear- marked to begin this year. We plan to embark upon a multi-year strategy to refresh technology used by staff across the board, starting with replacement of our oldest units where needs are jtjstified. The refresh cycle is expected to take up to four years which will mean costs can be kept low each year whilst still delivering on oreas of the charity's infrastructure most in naed. Nicola Beer Outreach Worker Finance Olficer Ally Allen Community Glants Officer LuisCantoECastro Community Serrfices Lead Gary Edg¢¢omb* Community Services Assistant Martin Penning Operations, Dotabose, Security DrJomes Sleigh Scientific Research Correspondent Vanesstj ehristie-Brown Research Coordinator

With special thanks to: SMA MUSCULAR EUR DYSTROPHY OPE UK Our Trustees Mark Dearlove, Chair of Trustees Katharine Jackson, Treasurer Prof. Kevin Talbot, Senior Advtsor to the Board Casimir Knight Deborah Woltier Toby Mildon Srin Modlpalli Dr. Anne-marie Childs Dr Ros Quinlivan Lauren West Dr. Alistair Emslie-smith (MBE) Yvette Edwards Michael Collins Ross Hovey Julian fiorentinl Ben Morris Tim She.ffield TreatSMA OURMUSCLES. MArrER GENETIC ALLIANCE- - Motablllty Foundatlon SMAREACHUK: UK SMA Newborn Screèning Alliance ADLJLT SMAREACN=_ i-l 01789 267 520 [e-mail] smauk.org.uk Spinal Muscular Atrophyuk SMA UK Address: Unit 9, Shottery 8rook Offsce Park, Timothy's Bridge Road, stratford-upon-Avon, Warwiekshire, CV37 gNR [e-mail]101789 267520 sma uk RegTStered Chority Number1106815 Spinal Muscular Atrophy UK

splnal Muscular Atrophyulr FINANCIAL REVIEW . 2023- 2024

TREASURERS REPORT

Income for the year was £1,264k an increase of 3.7% on the prior year. This was driven primarily by a £239k grant from the Motability Foundation to provide a 3 year programme of wheelchair and mobility equipment support for people living with SMA. The charity also benefited from a large one off legacy and the National Lotteries Grant of £137k.

The total pharmaceutical funding received during the year was £161k the majority of which is restricted for SMA Care. Pharmaceutical funding was 13% of total income compared to 34% in the prior year.

Specific donation received in 2023/4 were Roche £110k, Novartis £31k, Biogen £15k, Pfizer £5k. We are committed to transparency on pharmaceutical funding and ensure that we do not accept funding from any party if we feel it will place the charity under undue pressure to act in a way that does not support or compromises our charitable objectives or independence.

SMA UK’s spending is broadly divided between information provision, support and research – our charitable purpose - and fundraising and administration. We aim to maximise spending on our core purpose and ensure that other costs are carefully monitored. This year, expenditure on fundraising has increased by £34k or 20% due largely to one off expenditure required to run a fundraising event which raised £103k and produced a profit of £81k.

Overall, there has been an increase in expenditure in the year of £80k or 9%. The proportion of SMA UK costs that were spent on its charitable purpose, our value or pence in the pound, was 68p with the majority of resources focused on the provision of support to the SMA community and research.

Our net income for 2023/24 was a surplus of £326k compared to £67k in the prior year. The majority of the 2023/4 surplus relates to restricted funds provided by Motability for the 3 year equipment programme, Pharmaceutical support for SMA Care and various community engagement projects. The surplus is therefore committed to services to be provided in 2024/5 and subsequent years. As a result, SMA UK has finished the year with a strong cash position of £965k, £387k of which is restricted. The charity is operating within its reserves policy and the board will continue to monitor activities and reserves very carefully.

Katharine Jackson Treasurer

REPORT OF THE TRUSTEES For the Year Ended 31 March 2024 ~~ae~~ Future plans The trustees present their report with the financial statements of the charity for the We will continue to: advocate for access to year ended 31 March 2024. the new drug treatments, representing the

We will continue to: advocate for access to the new drug treatments, representing the views of the SMA Community to regulatory authorities and pharmaceutical companies; monitor the roll out of NHS programmes and pharmaceutical initiatives supporting individuals seeking access. We will continue to provide and further develop our information, outreach and support services and opportunities for people in the SMA Community to connect with each other. Our fundraising efforts will need to achieve income levels that will enables us to achieve our goals. We will continue to adapt our working practices to ensure they are safe for both the SMA Community and our staff and trustees.

The trustees have adopted the provisions of Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019).

OBJECTIVES AND ACTIVITIES

Objectives and aims As stated in its Memorandum and Articles of Association, Spinal Muscular Atrophy Support UK is established for:

FINANCIAL REVIEW

• The relief of people living with Spinal Muscular Atrophy and related medical conditions;

• The relief of persons who are in need after experiencing a bereavement or loss due to Spinal Muscular Atrophy; and

• The promotion of research into the causes and treatment of Spinal Muscular Atrophy.

Public benefit

The Trustees confirm that they have referred to the guidance contained in the Charity Commission's General Guidance on Public Benefit when reviewing the Charity's aims and objectives and in planning future activities.

ACHIEVEMENT AND PERFORMANCE

A detailed overview of the charity achievements and performance can be found in the Annual report 2024

Financial position See Treasurers Report from Katharine Jackson, Treasurer.

Investment policy

No investments are currently held by the Charity.

The investment policy is reviewed annually.

Reserves policy

Restricted reserves will always be applied in accordance with the Trust/donor's award specification. Where there is no specific budget, an element or general (core) overheads will be recovered against those reserves. The percentage recovery date is a matter of judgement; however, costs allocated will be reasonable, proportionate, justifiable and transparent.

Unrestricted cash reserves should be not less than three months of unrestricted expenditure, based on the most recent three-months of unrestricted expenditure.

STRUCTURE, GOVERNANCE AND MANAGEMENT

Governing document

The Charity is governed by its Memorandum and Articles of Association and constitutes a company limited by guarantee.

Appointment of Trustees

Trustees are recruited as required to fill specific gaps and to complement the management experience of the Board of Trustees. Appointments are made in accordance with the Articles of Association, after the appointment has been approved by the resolution of Trustees.

Organisational structure

All policy, strategy and financial decisions relating to the Charity have to be formally approved by the Board of Directors. The Board meets six times a year on a bi-monthly basis. Three of these meetings are held at the charity's offices in Stratford upon Avon, alternating with meetings held by telephone conferencing.

Risk management

The Trustees have a duty to identify and review the risks to which the Charity is exposed and to ensure appropriate controls are in place to provide reasonable assurance against fraud and error.

Trustees

T J D Sheffield (resigned 22.11.23) C S B Knight (resigned 22.11.23) Mrs D J Waltier (resigned 22.11.23) Dr R Quinlivan T J Mildon M T Dearlove Mrs K M Jackson M P Collins B M O Morris (resigned 22.11.23) Ms L E J West Dr A M E Smith Dr A M Childs Mrs K Y Edwards J M Fiorentini S Madipalli Miss C M Gray (resigned 3.10.23) Mrs T J B Burnley (appointed 22.11.23) B H Williams (appointed 22.11.23) Mrs M M Aspinall (appointed 22.11.23) Mrs J E Sheehan (appointed 22.11.23) R S Hovey (appointed 22.11.23)

Auditors

Cooper Adams Ltd Chartered Accountants and Statutory Auditors 12 Payton Street Stratford upon Avon Warwickshire CV37 6UA

Patrons

Professor V Dubowitz

The Trustees carried out regular reviews of the key risks affecting the Charity in the course of the year and took appropriate action.

REFERENCE AND ADMINISTRATIVE DETAILS

Registered Charity number

1106815

Principal address

Unit 9 Shottery Brook Office Park Timothy's Bridge Road Stratford upon Avon Warwickshire CV37 9NR

TRUSTEES' RESPONSIBILITY STATEMENT

The trustees are responsible for preparing the Report of the Trustees and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice) including Financial Reporting Standard 102 "The Financial Reporting Standard applicable in the UK and Republic of Ireland".

The law applicable to charities in England and Wales, the Charities Act 2011, Charity (Accounts and Reports) Regulations 2008 and the provisions of the trust deed requires the trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the charity and of the incoming resources and application of resources, including the income and expenditure, of the charity for that period. In preparing those financial statements, the trustees are required to

The trustees are responsible for keeping proper accounting records which disclose with reasonable accuracy at any time the financial position of the charity and to enable them to ensure that the financial statements comply with the Charities Act 2011, the Charity (Accounts and Reports) Regulations 2008 and the provisions of the trust deed. They are also responsible for safeguarding the assets of the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

Approved by order of the board of trustees on 14 June 2024 and signed on its behalf by:

M T Dearlove - Trustee

• Select suitable accounting policies and then apply them consistently;

• Observe the methods and principles in the Charity SORP;

• Make judgements and estimates that are reasonable and prudent;

• State whether applicable accounting standards have been followed, subject to any material departures disclosed and explained in the financial statements;

• Prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charity will continue in business.

REPORT OF THE INDEPENDENT AUDITORS TO THE TRUSTEES OF SPINAL MUSCULAR ATROPHY UK ~~>»~~ Opinion Conclusions relating to going concern We have audited the financial statements of In auditing the financial statements, we have Spinal Muscular Atrophy UK (the 'charity') for concluded that the trustees' use of the going the year ended 31 March 2024 which comprise concern basis of accounting in the the Statement of Financial Activities, the preparation of the financial statements is Statement of Financial Position, the Statement appropriate. of Cash Flows and notes to the financial Based on the work we have performed, we statements, including a summary of significant have not identified any material uncertainties accounting policies.

Based on the work we have performed, we have not identified any material uncertainties relating to events or conditions that, individually or collectively, may cast significant doubt on the charity's ability to continue as a going concern for a period of at least twelve months from when the financial statements are authorised for issue.

The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice), including Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland'.

Our responsibilities and the responsibilities of the trustees with respect to going concern are described in the relevant sections of this report.

• In our opinion the financial statements: Give a true and fair view of the state of the charity's affairs as at 31 March 2024 and of its incoming resources and application of resources, for the year then ended;

Other information

The trustees are responsible for the other information. The other information comprises the information included in the Annual Report, other than the financial statements and our Report of the Independent Auditors thereon.

• Have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice, including Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland'; and

Our opinion on the financial statements does not cover the other information and, except to the extent otherwise explicitly stated in our report, we do not express any form of assurance conclusion thereon.

• Have been prepared in accordance with the requirements of the Charities Act 2011.

In connection with our audit of the financial statements, our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements or our knowledge obtained in the audit or otherwise appears to be materially misstated. If we identify such material inconsistencies or apparent material misstatements, we are required to determine whether this gives rise to a material misstatement in the financial statements themselves. If, based on the work we have performed, we conclude that there is a material misstatement of this other information, we are required to report that fact. We have nothing to report in this regard.

Basis for opinion

applicable law. Our responsibilities under those standards are further described in the Auditors' responsibilities for the audit of the financial statements section of our report. We are independent of the charity in accordance with the ethical requirements that are relevant to our audit of the financial statements in the UK, including the FRC's Ethical Standard, and we have fulfilled our other ethical responsibilities in accordance with these requirements. We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our opinion.

Matters on which we are required to report by exception

We have nothing to report in respect of the following matters where the Charities (Accounts and Reports) Regulations 2008 requires us to report to you if, in our opinion: The information given in the Report of the Trustees is inconsistent in any material respect with the financial statements; or

• Sufficient accounting records have not been kept; or

• The financial statements are not in agreement with the accounting records and returns; or

• We have not received all the information and explanations we require for our audit.

Responsibilities of trustees

As explained more fully in the Trustees' Responsibilities Statement, the trustees are responsible for the preparation of the financial statements which give a true and fair view, and for such internal control as the trustees determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error.

In preparing the financial statements, the trustees are responsible for assessing the charity's ability to continue as a going concern, disclosing, as applicable, matters related to going concern and using the going concern basis of accounting unless the trustees either intend to liquidate the charity or to cease operations, or have no realistic alternative but to do so.

Our responsibilities for the audit of the financial statements

We have been appointed as auditors under Section 144 of the Charities Act 2011 and report in accordance with the Act and relevant regulations made or having effect thereunder.

Misstatements can arise from fraud or error and are considered material if, individually or in the aggregate, they could reasonably be expected to influence the economic decisions of users taken on the basis of these financial statements.

Irregularities, including fraud, are instances of non-compliance with laws and regulations. We design procedures in line with our responsibilities, outlined above, to detect material misstatements in respect of irregularities, including fraud. Because of the inherent limitations of an audit, there is a risk that we will not detect all irregularities, including those leading to a material misstatement in the financial statements or non-compliance with regulation. This risk increases the more that compliance with a law or regulation is removed from the events and transactions reflected in the financial statements, as we will be less likely to become aware of instances of non-compliance. The risk is also greater regarding irregularities occurring due to fraud rather than error, as fraud involves intentional concealment, forgery, collusion, omission or misrepresentation.

A further description of our responsibilities for the audit of the financial statements is located on the Financial Reporting Council's website at www.frc.org.uk/auditorsresponsibilities. This description forms part of our Report of the Independent Auditors.

Use of our report

This report is made solely to the charity's trustees, as a body, in accordance with Part 4 of the Charities (Accounts and Reports) Regulations 2008. Our audit work has been undertaken so that we might state to the charity's trustees those matters we are required to state to them in an auditors' report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the charity and the charity's trustees as a body, for our audit work, for this report, or for the opinions

we have formed.

Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue a Report of the Independent Auditors that includes our opinion. Reasonable assurance is a high level of assurance, but is not a guarantee that an audit conducted in accordance with ISAs (UK) will always detect a material misstatement when it exists.

For and on behalf of Cooper Adams Ltd Chartered Accountants and Statutory Auditors 12 Payton Street Stratford upon Avon Warwickshire CV37 6UA

14 June 2024

STATEMENT OF FINANCIAL ACTIVITIES for the Year Ended 31 March 2024 ——

ee oe	ee	Unrestricted ee	Restricted eee	2024 Total eee	2023 Total ee
INCOME AND ENDOWMENTS FROM ee oe	Notes ee	funds £ ee	funds £ eee	funds £ eee	funds £ ee
Donations and legacies oe	2	624,113	629,526	1,253,639	918,342
Other trading activities oetf	3 tf	3,755 tf	- tf	3,755 tf	5,743 tf
Investment income tf	4 tf	6,459 tf	- tf	6,459 tf	588 tf
Total ===>	===>	634,327 ===>	629,526 ===>	1,263,853 ===>	924,673 ===>
EXPENDITURE ON Raising funds ===>	5 ===>	203,390 ===>	- ===>	203,390 ===>	169,411 ===>
Charitable activities Provision of support ===>	6 ===>	261,941 ===>	321,855 ===>	583,796 ===>	601,569 ===>
Governance costs ===>	===>	92,671 ===>	- ===>	92,671 ===>	64,973 ===>
Research related activity —————	—————	45,745 —————	12,258 —————	58,003 —————	21,570 —————
Total —————	—————	603,747 —————	334,113 —————	937,860 —————	857,523 —————
NET INCOME Tt	Tt	30,580 Tt	295,413 Tt	325,993 Tt	67,150 Tt
RECONCILIATION OF FUNDS Total funds brought forward Tt Pp	Tt	564,980 Tt	91,334 Tt	656,314 Tt	589,164 Tt
TOTAL FUNDS CARRIED FORWARD Ppot	ot	595,560 ot	386,747 ot	982,307 ot	656,314 ot

STATEMENT OF FINANCIAL POSITION 31 March 2024 —— te

31 March 2024 ——	——	——	——	—— te	te
ee	Notes ee	Unrestricted Funds £ ee	Restricted Funds £ ee	2024 Total Funds £ ee	2023 Total Funds £ ee
FIXED ASSETS a		a
Tangible Assets a	11	8,762 a	-	8,762	7,037
CURRENT ASSETS SS	SS	SS	SS	SS	SS
Stocks SS	12 SS	5,628 SS	- SS	5,628 SS	5,791 SS
Debtors aa	13 aa	25,598 aa	- aa	25,598 aa	36,117
Cash at bank and in hand a	a ee	578,567 a eeee	386,747 ee	965,314 ee	628,044 ee
Total		609,793	386,747	996,540	669,952
CREDITORS
Amounts falling due within one year a	14	(22,995)	-	(22,995)	(20,675)
NET CURRENT ASSETS a a		586,798	386,747	973,545	649,277
TOTAL ASSETS LESS CURRENT LIABILITIES a a		595,560	386,747	982,307	656,314
NET ASSETS SS	SS	595,560 SS	386,747 SS	982,307 SS	656,314 SS
FUNDS SS	SS	SS	SS	SS	SS
Unrestricted funds: General Fund a				595,560	564,980
Restricted funds: Various Funds a	ee	eeee	ee	386,747 ee	91,334 ee
TOTAL FUNDS a	a	a	a	982,307 a	656,314 a

The financial statements were approved by the Board of Trustees and authorised for issue on 14 June 2024 and were signed on its behalf by:

M T Dearlove - Trustee

K M Jackson - Trustee

2024 2023 Notes £ £ Cash flows from operating activities —— Cash generated from operations 1 336,003 38,646 Net cash provided by operating 336,003 38,646 activities Cash flows from investing activities or a Purchase of tangible fixed assets (5,192) (2,395) Interest received 6,459 588 Net cash provided by/(used in) 1,267 (1,807) investing activities —— Change in cash and cash equivalents 337,270 36,839 in the reporting period Cash and cash equivalents at the 628,044 591,205 beginning of the reporting period ———— Cash and cash equivalents at the 965,314 628,044 end of the reporting period eeee ee

NOTES TO THE STATEMENT OF CASH FLOWS for the Year Ended 31 March 2024 ss	NOTES TO THE STATEMENT OF CASH FLOWS for the Year Ended 31 March 2024 ss	NOTES TO THE STATEMENT OF CASH FLOWS for the Year Ended 31 March 2024 ss	NOTES TO THE STATEMENT OF CASH FLOWS for the Year Ended 31 March 2024 ss
1. RECONCILIATION OF NET INCOME TO NET CASH FLOW FROM OPERATING ACTIVITIES
		2024	2023
		£	£
	Net income for the reporting period (as per the Statement of Financial Activities)	325,993	67,150
	Adjustments for:
	Depreciation charges	3,467	3,473
	Interest received	(6,459)	(588)
	Decrease in stocks	163	494
	Decrease/(increase) in debtors	10,519	(20,878)
	Increase/(decrease) in creditors	2,320	(11,005)
	Net cash provided by operations	336,003	38,646

2. ANALYSIS OF CHANGES IN NET FUNDS

Net Cash	At 1.4.23 £	Cash flow £	At 31.3.24 £
Cash at bank and in hand	628,044	337,270	965,314
Total	628,044	337,270	965,314

NOTES TO THE FINANCIAL STATEMENTS for the Year Ended 31 March 2024 ae 1. ACCOUNTING POLICIES

Basis of preparing the financial statements

The financial statements of the charity, which is a public benefit entity under FRS 102, have been prepared in accordance with the Charities SORP (FRS 102) 'Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019)', Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland' and the Charities Act 2011. The financial statements have been prepared under the historical cost convention.

Tangible fixed assets Depreciation is provided at the following annual rates in order to write off each asset over its estimated useful life.

Office equipment - 10 - 20% on cost Computer equipment - 25% straight line basis

Stocks

Stocks are valued at the lower of cost and net realisable value, after making due allowance for obsolete and slow moving items.

Taxation

The charity is exempt from tax on its charitable activities.

Income

Fund accounting

All income is recognised in the Statement of Financial Activities once the charity has entitlement to the funds, it is probable that the income will be received and the amount can be measured reliably.

Unrestricted funds can be used in accordance with the charitable objectives at the discretion of the trustees.

Restricted funds can only be used for particular purposes within the objects of the charity. Restrictions arise when specified by the donor or when funds are raised for particular purposes.

Expenditure

Liabilities are recognised as expenditure as soon Restrictions arise when specified by the donor or as there is a legal or constructive obligation when funds are raised for particular purposes. committing the charity to that expenditure, it is probable that a transfer of economic benefits will be required in settlement and the amount of the obligation can be measured reliably. Expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all cost related to the category. Where costs cannot be directly attributed to particular headings they have been allocated to activities on a basis consistent with the use of resources. 2. DONATIONS AND LEGACIES 2024 2023 £ £ Donations and gifts 717,901 759,199 Legacies 159,944 5,312 - Motability 238,500 The National Lottery Community Fund 137,294 153,831 1,253,639 918,342 ——=5

3. OTHER TRADING ACTIVITIES

3. OTHER TRADING ACTIVITIES
	2024 £	2023 £
Merchandise Sales	3,755	5,743

4. INVESTMENT INCOME

2024 2023 £ £ Bank Interest 6,459 588 5. RAISING FUNDS 2024 2023 Raising Donations and Legacies £ £ Staff Costs 137,965 133,680 Fundraising and publicity 26,826 21,090 Events and promotions 33,953 12,304 Cost of merchandise sales 4,646 2,337 203,390 169,411 _—__ 6. CHARITABLE ACTIVITIES COSTS 2024 2023 Provision of Support £ £ Staff Costs and other expenses 337,154 373,414 Information and awareness raising 19,722 34,641 Shared experience network 13,783 24,045 Outreach service 77,482 48,285 Welfare and equipment grants 135,655 121,184 583,796 601,569 —= 2024 2023 Research Related Activity £ £ Staff costs and other expenses 42,412 18,093 - Medical research grants 6,729 Other research activities 8,862 3,477 58,003 21,570 ===

7. SUPPORT COSTS

	7. SUPPORT COSTS
				Management £
	Governance costs				92,671
2024 £ 2023 £ Staff costs and other expenses 75,039 51,285 Professional fees and bank charges 7,311 6,478 Other costs 10,321 7,210 92,671 64,973 ===
8. TRUSTEES’ REMUNERATION AND BENEFITS
There were no trustees' remuneration or other benefits for the year ended 31 March 2024 nor for the year				There were no trustees' remuneration or other benefits for the year ended 31 March 2024 nor for the year
ended 31 March 2023.

Trustees' expenses

There were no trustees' expenses reimbursed for the year ended 31 March 2024 (2023: £nil).
Payments in respect of trustee indemnity insurance amounted to £438 (2023: £398).
9. STAFF COSTS
2024 £ 2023 £ Wages and salaries 483,714 461,860 Social Security costs 41,460 43,784 Pension 21,884 20,476 547,058 526,120 —==
The average monthly number of employees during the year was as follows:
2024 2023 Management and administration 1 1 Direct charitable expenditure 12 10 Fundraising and publicity 5 5 18 16 ===
We also engaged contractors in 2024 to assist us with our management and administration 1.2 FTE.

No employees received emoluments in excess of £60,000 (2023: None)

10. COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES

	INCOME AND ENDOWMENTS FROM	UNRESTRICTED FUNDS £	RESTRICTED FUNDS £	TOTAL FUNDS £
	Donations and legacies	423,127	495,215	918,342
	Other trading activities	5,743	-	5,743
	Investment income	588	-	588
	Total	429,458	495,215	924,673
	EXPENDITURE ON
	Raising funds	169,411	-	169,411
	Charitable activities
	Provision of support	157,878	443,691	601,569
	Governance costs	64,973	-	64,973
	Research related activity	20,686	884	21,570
	Total	412,948	444,575	857,523
	NET INCOME	16,510	50,640	67,150
	Transfers between funds	(367)	367	-
	Net movement in funds	16,143	51,007	67,150
	RECONCILIATION OF FUNDS
	Total funds brought forward	548,837	40,327	589,164
	TOTAL FUNDS CARRIED FORWARD	564,980	91,334	656,314
11. TANGIBLE FIXED ASSETS
	COST	Office equipment £	Computer equipment £	Totals £
	At 1 April 2023	2,554	20,863	23,417
	Additions	-	5,192	5,192
	At 31 March 2024	2,554	26,055	28,609
	DEPRECIATION
	At 1 April 2023	1,550	14,830	16,380
	Charge for year	158	3,309	3,467
	At 31 March 2024	1,708	18,139	19,847
	NET BOOK VALUE
	At 31 March 2024	846	7,916	8,762
	At 31 March 2023	1,004	6,033	7,037

12. STOCKS

2024 £ 2023 £ Stocks held for re-sale 5,628 5,791 ————
13. DEBTORS: AMOUNTS FALLING DUE WITHIN ONE YEAR
2024 £ 2023 £ Prepayments and accrued income 25,598 36,117 —————
14. CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR
2024 £ 2023 £ Taxation and social security 16,273 14,555 Other creditors 6,722 6,120 22,995 20,675 ———i
15. LEASING AGREEMENTS
Minimum lease payments under non-cancellable operating leases fall due as follows:
2024 £ 2023 £ Within one year 15,000 20,094 Between one and five years 7,500 22,500 22,500 42,594 ——
16. MOVEMENT IN FUNDS
At 1.4.23 £ Net movement in funds £ At 31.3.24 £ Unrestricted funds General fund 564,980 30,580 595,560 Restricted funds Various funds 91,334 295,413 386,747 TOTAL FUNDS 656,314 325,993 982,307 ==S55

16. MOVEMENT IN FUNDS - CONTINUED
Net movement in funds, included in the above are as follows:
Incoming resources £ Resources expended £ Movement in funds £ Unrestricted funds General fund 634,327 (603,747) 30,580 Restricted funds Various funds 629,526 (334,113) 295,413 TOTAL FUNDS 1,263,853 (937,860) 325,993 __
Comparatives for movement in funds
At 1.4.22 £ Net movement in funds £ Transfers between funds £ At 31.3.23 £ Unrestricted funds General fund 548,837 16,510 (367) 564,980 Restricted funds Various funds 40,327 50,640 367 91,334 TOTAL FUNDS 589,164 67,150 - 656,314 __
Comparative net movement in funds, included in the above are as follows:
Incoming resources £ Resources expended £ Movement in funds £ Unrestricted funds General fund 429,458 (412,948) 16,510 Restricted funds Various funds 495,215 (444,575) 50,640 TOTAL FUNDS 924,673 (857,523) 67,150 __

16. MOVEMENT IN FUNDS - CONTINUED

A current year 12 months and prior year 12 months combined position is as follows:

At 1.4.22 £ Net movement in funds £ Transfers between funds £ At 31.3.23 £ Unrestricted funds General fund 548,837 47,090 (367) 595,560 Restricted funds Various funds 40,327 346,053 367 386,747 TOTAL FUNDS 589,164 393,143 - 982,307 __
A current year 12 months and prior year 12 months combined net movement in funds, included in the above
are as follows:
Incoming resources £ Resources expended £ Movement in funds £ Unrestricted funds General fund 1,063,785 (1,016,695) 47,090 Restricted funds Various funds 1,124,741 (778,688) 346,053 TOTAL FUNDS 2,188,526 (1,795,383) 393,143 ___

16. MOVEMENT IN FUNDS - CONTINUED Statement of funds

16. MOVEMENT IN FUNDS - CONTINUED Statement of funds
	Balance b/f at 1.4.23 £	Incoming resources £	Resources expended £	Movement in funds £
Unrestricted funds
General fund	564,980	634,326	(603,746)	595,560
Restricted funds
Toy Packs	500	1,675	(2,175)	-
Community Information Webinars	-	5,000	-	5,000
Motability	-	238,500	(110,639)	127,861
SMA Care UK Grant	-	67,354	-	67,354
Community Engagement	-	47,350	-	47,350
UK SMA Newborn Screening Alliance	5,398	15,974	(21,373)	-
SMA Horizons Project	763	(560)	(203)	-
Working with the SMA Community	68,399	137,294	(144,189)	61,504
Website & Digital Comms Development	6,274	-	(6,274)	-
Support Services	-	40,950	(38,930)	2,020
PhD Scholarship Yr2	10,000	-	(6,730)	3,270
SMA and Me Books	-	15,000	(3,600)	11,400
Know No Bounds	-	30,255	-	30,255
Content and Web Development	-	30,733	-	30,733
Total Restricted Funds	91,334	629,526	(334,113)	386,747
TOTAL FUNDS oe	656,314 oe	1,263,852 oe	(937,859) oe	982,307 oe

Community Engagement

16. MOVEMENT IN FUNDS - CONTINUED

—=

SMA UK received grants from trusts and pharma to support our community engagement events which included Picnics in the park and our Children's and adults resonate weekends.

UK SMA Newborn Screening Alliance

Toy Packs

Our multi-sensory toy packs are available free of charge to families in the UK for newly diagnosed children.They include items that provide visual, tactile and auditory stimulation. They have been designed to offer entertainment during the day, fun at bath time and comfort at bedtime. They are suitable for infants aged up to 12 months of age.

Community Information Webinars

We ask expert health, education and social care professionals questions on topics of interest and concern to the SMA Community such as on treatments, diet and exercise. These popular webinars hosted by a community member provide easy access to important up-to-date and accurate information.

The Alliance brings together clinicians, patient groups and other stakeholders, determined to achieve the earliest possible introduction of newborn screening for SMA in the UK and in so doing deliver the best outcomes from treatment and reduce future healthcare costs. This fund supports the costs of the Project Manager, the secretariat (SMA UK and MDUK) and communications.

SMA Horizons Project

The SMArt Horizon project has the goal to identify new innovation, 'out of the box' therapies for people living with SMA, especially for the chronic population. These therapies may be complementary to the existing ones that target the SMN upregulation.

Working with the SMA Community

This Fund goes towards the costs of our information, outreach and support , community development and advocacy services.

Motability

SMA UK were awarded a 3 year grant from The Motability Foundation, giving us the opportunity to assist people living with SMA in purchasing mobility equipment and wheelchairs through our SMArt Moves grant.

SMA Care UK Grant

The SMA Care UK project will bring together members of the SMA community and a range of health care and other professions to update the guidance outlined in Standards of Care (2018) and ensure it is relevant and meaningful to those living with SMA in the UK today. Funding has been received and requested from trusts and industry.

Website & Digital Comms Development

This year this fund was set up to enable the launch of a new website and branding refresh targeted for August 2023. It also increased our Communications staffing capacity, our communications reach and supported the further development of community virtual networks.

Support Services

This fund targeted any Support Services costs that were not covered by any of the other restricted funds that support this work.

16. MOVEMENT IN FUNDS - CONTINUED

PhD Scholarship Yr2

This supports our commitment to fund the 4- year research programme that aims to further understand the motor enlargement process in people who have SMA and how this might be addressed and improve treatment outcomes. It runs from 2022-2025, and is funded jointly with Muscular Dystrophy UK.

Content and Web Development

As part of our on going website and communications development, were we awarded a grant to strengthen and facilitate Community engagement through our multimedia platforms whilst improving imagery including videos on the SMA UK website.

SMA and Me Books

The books 'SMA and me' were published in 2016 before disease modifying treatments changed the landscape of SMA. With input from children living with SMA, their families and their clinicians, this new resource sponsored by Biogen, will help children to understand what SMA is, how the treatments work and, importantly, why we now see so many individual differences within the SMA community.

Know No Bounds

Two members of the SMA Community have set them self a challenge to climb Snowdonia to fundraise for SMA UK to purchase specialise off road wheelchairs therefore aiming to give more opportunities for people living with SMA to explore the great outdoors.

17. RELATED PARTY DISCLOSURES

There were no related party transactions for the year ended 31 March 2024.

18. CHARITY STRUCTURE

On 4th August 2022 the charity changed from a 'company limited by guarantee' to a 'charitable incorporated organization'.

DETAILED STATEMENT OF FINANCIAL ACTIVITIES for the Year Ended 31 March 2024—	—	—
	2024 £	2023 £
INCOME AND ENDOWMENTS
Donations and legacies
Donations and gifts	717,901	759,199
Legacies	159,944	5,312
Motability	238,500	-
The National Lottery Community Fund	137,294	153,831
	1,253,639	918,342
Other trading activities
Merchandise sales	3,755	5,743
Investment income
Bank interest	6,459	588
Total incoming resources	1,263,853	924,673
EXPENDITURE
Raising donations and legacies
Staff costs and other expenses	137,965	133,680
Fundraising and publicity	26,826	21,090
Events and promotions	33,953	12,304
Cost of merchandise sales	4,646	2,337
	203,390	169,411
Charitable activities
Staff costs and other expenses	379,565	391,507
Medical research grants	6,730	378
Other research activities	8,862	3,099
Information and awareness raising	19,722	34,641
Shared experiences network	13,783	24,045
Outreach service	77,482	48,285
Welfare, equipment grants and toy packs	135,655	121,184
	641,799	623,139

	2024 £	2023 £
Support costs
Management
Staff costs and other expenses	75,039	51,285
Professional fees and bank charges	6,642	6,478
Other costs	10,990	7,210
	92,671	64,973
Total resources expended	937,860	857,523
Net income	325,993	67,150

Address: Unit 9, Shottery Brook Office Park. Timothy’s Bridge Road, Stratford-Upon-Avon, Warwickshire, CV37 9NR [e-mail] | 01789 267520 Registered Charity Number 1106815

splnal Muscular Atrophyulr FINANCIAL REVIEW . 2023- 2024

TREASURERS REPORT

Income for the year was £1,264k an increase of 3.7% on the prior year. This was driven primarily by a £239k grant from the Motability Foundation to provide a 3 year programme of wheelchair and mobility equipment support for people living with SMA. The charity also benefited from a large one off legacy and the National Lotteries Grant of £137k.

The total pharmaceutical funding received during the year was £161k the majority of which is restricted for SMA Care. Pharmaceutical funding was 13% of total income compared to 34% in the prior year.

Specific donation received in 2023/4 were Roche £110k, Novartis £31k, Biogen £15k, Pfizer £5k. We are committed to transparency on pharmaceutical funding and ensure that we do not accept funding from any party if we feel it will place the charity under undue pressure to act in a way that does not support or compromises our charitable objectives or independence.

SMA UK’s spending is broadly divided between information provision, support and research – our charitable purpose - and fundraising and administration. We aim to maximise spending on our core purpose and ensure that other costs are carefully monitored. This year, expenditure on fundraising has increased by £34k or 20% due largely to one off expenditure required to run a fundraising event which raised £103k and produced a profit of £81k.

Overall, there has been an increase in expenditure in the year of £80k or 9%. The proportion of SMA UK costs that were spent on its charitable purpose, our value or pence in the pound, was 68p with the majority of resources focused on the provision of support to the SMA community and research.

Our net income for 2023/24 was a surplus of £326k compared to £67k in the prior year. The majority of the 2023/4 surplus relates to restricted funds provided by Motability for the 3 year equipment programme, Pharmaceutical support for SMA Care and various community engagement projects. The surplus is therefore committed to services to be provided in 2024/5 and subsequent years. As a result, SMA UK has finished the year with a strong cash position of £965k, £387k of which is restricted. The charity is operating within its reserves policy and the board will continue to monitor activities and reserves very carefully.

Katharine Jackson Treasurer

REPORT OF THE TRUSTEES For the Year Ended 31 March 2024 ~~ae~~ Future plans The trustees present their report with the financial statements of the charity for the We will continue to: advocate for access to year ended 31 March 2024. the new drug treatments, representing the

We will continue to: advocate for access to the new drug treatments, representing the views of the SMA Community to regulatory authorities and pharmaceutical companies; monitor the roll out of NHS programmes and pharmaceutical initiatives supporting individuals seeking access. We will continue to provide and further develop our information, outreach and support services and opportunities for people in the SMA Community to connect with each other. Our fundraising efforts will need to achieve income levels that will enables us to achieve our goals. We will continue to adapt our working practices to ensure they are safe for both the SMA Community and our staff and trustees.

The trustees have adopted the provisions of Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019).

OBJECTIVES AND ACTIVITIES

Objectives and aims As stated in its Memorandum and Articles of Association, Spinal Muscular Atrophy Support UK is established for:

FINANCIAL REVIEW

• The relief of people living with Spinal Muscular Atrophy and related medical conditions;

• The relief of persons who are in need after experiencing a bereavement or loss due to Spinal Muscular Atrophy; and

• The promotion of research into the causes and treatment of Spinal Muscular Atrophy.

Public benefit

The Trustees confirm that they have referred to the guidance contained in the Charity Commission's General Guidance on Public Benefit when reviewing the Charity's aims and objectives and in planning future activities.

ACHIEVEMENT AND PERFORMANCE

A detailed overview of the charity achievements and performance can be found in the Annual report 2024

Financial position See Treasurers Report from Katharine Jackson, Treasurer.

Investment policy

No investments are currently held by the Charity.

The investment policy is reviewed annually.

Reserves policy

Restricted reserves will always be applied in accordance with the Trust/donor's award specification. Where there is no specific budget, an element or general (core) overheads will be recovered against those reserves. The percentage recovery date is a matter of judgement; however, costs allocated will be reasonable, proportionate, justifiable and transparent.

Unrestricted cash reserves should be not less than three months of unrestricted expenditure, based on the most recent three-months of unrestricted expenditure.

STRUCTURE, GOVERNANCE AND MANAGEMENT

Governing document

The Charity is governed by its Memorandum and Articles of Association and constitutes a company limited by guarantee.

Appointment of Trustees

Trustees are recruited as required to fill specific gaps and to complement the management experience of the Board of Trustees. Appointments are made in accordance with the Articles of Association, after the appointment has been approved by the resolution of Trustees.

Organisational structure

All policy, strategy and financial decisions relating to the Charity have to be formally approved by the Board of Directors. The Board meets six times a year on a bi-monthly basis. Three of these meetings are held at the charity's offices in Stratford upon Avon, alternating with meetings held by telephone conferencing.

Risk management

The Trustees have a duty to identify and review the risks to which the Charity is exposed and to ensure appropriate controls are in place to provide reasonable assurance against fraud and error.

Trustees

T J D Sheffield (resigned 22.11.23) C S B Knight (resigned 22.11.23) Mrs D J Waltier (resigned 22.11.23) Dr R Quinlivan T J Mildon M T Dearlove Mrs K M Jackson M P Collins B M O Morris (resigned 22.11.23) Ms L E J West Dr A M E Smith Dr A M Childs Mrs K Y Edwards J M Fiorentini S Madipalli Miss C M Gray (resigned 3.10.23) Mrs T J B Burnley (appointed 22.11.23) B H Williams (appointed 22.11.23) Mrs M M Aspinall (appointed 22.11.23) Mrs J E Sheehan (appointed 22.11.23) R S Hovey (appointed 22.11.23)

Auditors

Cooper Adams Ltd Chartered Accountants and Statutory Auditors 12 Payton Street Stratford upon Avon Warwickshire CV37 6UA

Patrons

Professor V Dubowitz

The Trustees carried out regular reviews of the key risks affecting the Charity in the course of the year and took appropriate action.

REFERENCE AND ADMINISTRATIVE DETAILS

Registered Charity number

1106815

Principal address

Unit 9 Shottery Brook Office Park Timothy's Bridge Road Stratford upon Avon Warwickshire CV37 9NR

TRUSTEES' RESPONSIBILITY STATEMENT

The trustees are responsible for preparing the Report of the Trustees and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice) including Financial Reporting Standard 102 "The Financial Reporting Standard applicable in the UK and Republic of Ireland".

The law applicable to charities in England and Wales, the Charities Act 2011, Charity (Accounts and Reports) Regulations 2008 and the provisions of the trust deed requires the trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the charity and of the incoming resources and application of resources, including the income and expenditure, of the charity for that period. In preparing those financial statements, the trustees are required to

The trustees are responsible for keeping proper accounting records which disclose with reasonable accuracy at any time the financial position of the charity and to enable them to ensure that the financial statements comply with the Charities Act 2011, the Charity (Accounts and Reports) Regulations 2008 and the provisions of the trust deed. They are also responsible for safeguarding the assets of the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

Approved by order of the board of trustees on 14 June 2024 and signed on its behalf by:

M T Dearlove - Trustee

• Select suitable accounting policies and then apply them consistently;

• Observe the methods and principles in the Charity SORP;

• Make judgements and estimates that are reasonable and prudent;

• State whether applicable accounting standards have been followed, subject to any material departures disclosed and explained in the financial statements;

• Prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charity will continue in business.

REPORT OF THE INDEPENDENT AUDITORS TO THE TRUSTEES OF SPINAL MUSCULAR ATROPHY UK ~~>»~~ Opinion Conclusions relating to going concern We have audited the financial statements of In auditing the financial statements, we have Spinal Muscular Atrophy UK (the 'charity') for concluded that the trustees' use of the going the year ended 31 March 2024 which comprise concern basis of accounting in the the Statement of Financial Activities, the preparation of the financial statements is Statement of Financial Position, the Statement appropriate. of Cash Flows and notes to the financial Based on the work we have performed, we statements, including a summary of significant have not identified any material uncertainties accounting policies.

Based on the work we have performed, we have not identified any material uncertainties relating to events or conditions that, individually or collectively, may cast significant doubt on the charity's ability to continue as a going concern for a period of at least twelve months from when the financial statements are authorised for issue.

The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice), including Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland'.

Our responsibilities and the responsibilities of the trustees with respect to going concern are described in the relevant sections of this report.

• In our opinion the financial statements: Give a true and fair view of the state of the charity's affairs as at 31 March 2024 and of its incoming resources and application of resources, for the year then ended;

Other information

The trustees are responsible for the other information. The other information comprises the information included in the Annual Report, other than the financial statements and our Report of the Independent Auditors thereon.

• Have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice, including Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland'; and

Our opinion on the financial statements does not cover the other information and, except to the extent otherwise explicitly stated in our report, we do not express any form of assurance conclusion thereon.

• Have been prepared in accordance with the requirements of the Charities Act 2011.

In connection with our audit of the financial statements, our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements or our knowledge obtained in the audit or otherwise appears to be materially misstated. If we identify such material inconsistencies or apparent material misstatements, we are required to determine whether this gives rise to a material misstatement in the financial statements themselves. If, based on the work we have performed, we conclude that there is a material misstatement of this other information, we are required to report that fact. We have nothing to report in this regard.

Basis for opinion

applicable law. Our responsibilities under those standards are further described in the Auditors' responsibilities for the audit of the financial statements section of our report. We are independent of the charity in accordance with the ethical requirements that are relevant to our audit of the financial statements in the UK, including the FRC's Ethical Standard, and we have fulfilled our other ethical responsibilities in accordance with these requirements. We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our opinion.

Matters on which we are required to report by exception

We have nothing to report in respect of the following matters where the Charities (Accounts and Reports) Regulations 2008 requires us to report to you if, in our opinion: The information given in the Report of the Trustees is inconsistent in any material respect with the financial statements; or

• Sufficient accounting records have not been kept; or

• The financial statements are not in agreement with the accounting records and returns; or

• We have not received all the information and explanations we require for our audit.

Responsibilities of trustees

As explained more fully in the Trustees' Responsibilities Statement, the trustees are responsible for the preparation of the financial statements which give a true and fair view, and for such internal control as the trustees determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error.

In preparing the financial statements, the trustees are responsible for assessing the charity's ability to continue as a going concern, disclosing, as applicable, matters related to going concern and using the going concern basis of accounting unless the trustees either intend to liquidate the charity or to cease operations, or have no realistic alternative but to do so.

Our responsibilities for the audit of the financial statements

We have been appointed as auditors under Section 144 of the Charities Act 2011 and report in accordance with the Act and relevant regulations made or having effect thereunder.

Misstatements can arise from fraud or error and are considered material if, individually or in the aggregate, they could reasonably be expected to influence the economic decisions of users taken on the basis of these financial statements.

Irregularities, including fraud, are instances of non-compliance with laws and regulations. We design procedures in line with our responsibilities, outlined above, to detect material misstatements in respect of irregularities, including fraud. Because of the inherent limitations of an audit, there is a risk that we will not detect all irregularities, including those leading to a material misstatement in the financial statements or non-compliance with regulation. This risk increases the more that compliance with a law or regulation is removed from the events and transactions reflected in the financial statements, as we will be less likely to become aware of instances of non-compliance. The risk is also greater regarding irregularities occurring due to fraud rather than error, as fraud involves intentional concealment, forgery, collusion, omission or misrepresentation.

A further description of our responsibilities for the audit of the financial statements is located on the Financial Reporting Council's website at www.frc.org.uk/auditorsresponsibilities. This description forms part of our Report of the Independent Auditors.

Use of our report

This report is made solely to the charity's trustees, as a body, in accordance with Part 4 of the Charities (Accounts and Reports) Regulations 2008. Our audit work has been undertaken so that we might state to the charity's trustees those matters we are required to state to them in an auditors' report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the charity and the charity's trustees as a body, for our audit work, for this report, or for the opinions

we have formed.

Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue a Report of the Independent Auditors that includes our opinion. Reasonable assurance is a high level of assurance, but is not a guarantee that an audit conducted in accordance with ISAs (UK) will always detect a material misstatement when it exists.

For and on behalf of Cooper Adams Ltd Chartered Accountants and Statutory Auditors 12 Payton Street Stratford upon Avon Warwickshire CV37 6UA

14 June 2024

STATEMENT OF FINANCIAL ACTIVITIES for the Year Ended 31 March 2024 ——

ee oe	ee	Unrestricted ee	Restricted eee	2024 Total eee	2023 Total ee
INCOME AND ENDOWMENTS FROM ee oe	Notes ee	funds £ ee	funds £ eee	funds £ eee	funds £ ee
Donations and legacies oe	2	624,113	629,526	1,253,639	918,342
Other trading activities oetf	3 tf	3,755 tf	- tf	3,755 tf	5,743 tf
Investment income tf	4 tf	6,459 tf	- tf	6,459 tf	588 tf
Total ===>	===>	634,327 ===>	629,526 ===>	1,263,853 ===>	924,673 ===>
EXPENDITURE ON Raising funds ===>	5 ===>	203,390 ===>	- ===>	203,390 ===>	169,411 ===>
Charitable activities Provision of support ===>	6 ===>	261,941 ===>	321,855 ===>	583,796 ===>	601,569 ===>
Governance costs ===>	===>	92,671 ===>	- ===>	92,671 ===>	64,973 ===>
Research related activity —————	—————	45,745 —————	12,258 —————	58,003 —————	21,570 —————
Total —————	—————	603,747 —————	334,113 —————	937,860 —————	857,523 —————
NET INCOME Tt	Tt	30,580 Tt	295,413 Tt	325,993 Tt	67,150 Tt
RECONCILIATION OF FUNDS Total funds brought forward Tt Pp	Tt	564,980 Tt	91,334 Tt	656,314 Tt	589,164 Tt
TOTAL FUNDS CARRIED FORWARD Ppot	ot	595,560 ot	386,747 ot	982,307 ot	656,314 ot

STATEMENT OF FINANCIAL POSITION 31 March 2024 —— te

31 March 2024 ——	——	——	——	—— te	te
ee	Notes ee	Unrestricted Funds £ ee	Restricted Funds £ ee	2024 Total Funds £ ee	2023 Total Funds £ ee
FIXED ASSETS a		a
Tangible Assets a	11	8,762 a	-	8,762	7,037
CURRENT ASSETS SS	SS	SS	SS	SS	SS
Stocks SS	12 SS	5,628 SS	- SS	5,628 SS	5,791 SS
Debtors aa	13 aa	25,598 aa	- aa	25,598 aa	36,117
Cash at bank and in hand a	a ee	578,567 a eeee	386,747 ee	965,314 ee	628,044 ee
Total		609,793	386,747	996,540	669,952
CREDITORS
Amounts falling due within one year a	14	(22,995)	-	(22,995)	(20,675)
NET CURRENT ASSETS a a		586,798	386,747	973,545	649,277
TOTAL ASSETS LESS CURRENT LIABILITIES a a		595,560	386,747	982,307	656,314
NET ASSETS SS	SS	595,560 SS	386,747 SS	982,307 SS	656,314 SS
FUNDS SS	SS	SS	SS	SS	SS
Unrestricted funds: General Fund a				595,560	564,980
Restricted funds: Various Funds a	ee	eeee	ee	386,747 ee	91,334 ee
TOTAL FUNDS a	a	a	a	982,307 a	656,314 a

The financial statements were approved by the Board of Trustees and authorised for issue on 14 June 2024 and were signed on its behalf by:

M T Dearlove - Trustee

K M Jackson - Trustee

2024 2023 Notes £ £ Cash flows from operating activities —— Cash generated from operations 1 336,003 38,646 Net cash provided by operating 336,003 38,646 activities Cash flows from investing activities or a Purchase of tangible fixed assets (5,192) (2,395) Interest received 6,459 588 Net cash provided by/(used in) 1,267 (1,807) investing activities —— Change in cash and cash equivalents 337,270 36,839 in the reporting period Cash and cash equivalents at the 628,044 591,205 beginning of the reporting period ———— Cash and cash equivalents at the 965,314 628,044 end of the reporting period eeee ee

NOTES TO THE STATEMENT OF CASH FLOWS for the Year Ended 31 March 2024 ss	NOTES TO THE STATEMENT OF CASH FLOWS for the Year Ended 31 March 2024 ss	NOTES TO THE STATEMENT OF CASH FLOWS for the Year Ended 31 March 2024 ss	NOTES TO THE STATEMENT OF CASH FLOWS for the Year Ended 31 March 2024 ss
1. RECONCILIATION OF NET INCOME TO NET CASH FLOW FROM OPERATING ACTIVITIES
		2024	2023
		£	£
	Net income for the reporting period (as per the Statement of Financial Activities)	325,993	67,150
	Adjustments for:
	Depreciation charges	3,467	3,473
	Interest received	(6,459)	(588)
	Decrease in stocks	163	494
	Decrease/(increase) in debtors	10,519	(20,878)
	Increase/(decrease) in creditors	2,320	(11,005)
	Net cash provided by operations	336,003	38,646

2. ANALYSIS OF CHANGES IN NET FUNDS

Net Cash	At 1.4.23 £	Cash flow £	At 31.3.24 £
Cash at bank and in hand	628,044	337,270	965,314
Total	628,044	337,270	965,314

NOTES TO THE FINANCIAL STATEMENTS for the Year Ended 31 March 2024 ae 1. ACCOUNTING POLICIES

Basis of preparing the financial statements

The financial statements of the charity, which is a public benefit entity under FRS 102, have been prepared in accordance with the Charities SORP (FRS 102) 'Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019)', Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland' and the Charities Act 2011. The financial statements have been prepared under the historical cost convention.

Tangible fixed assets Depreciation is provided at the following annual rates in order to write off each asset over its estimated useful life.

Office equipment - 10 - 20% on cost Computer equipment - 25% straight line basis

Stocks

Stocks are valued at the lower of cost and net realisable value, after making due allowance for obsolete and slow moving items.

Taxation

The charity is exempt from tax on its charitable activities.

Income

Fund accounting

All income is recognised in the Statement of Financial Activities once the charity has entitlement to the funds, it is probable that the income will be received and the amount can be measured reliably.

Unrestricted funds can be used in accordance with the charitable objectives at the discretion of the trustees.

Restricted funds can only be used for particular purposes within the objects of the charity. Restrictions arise when specified by the donor or when funds are raised for particular purposes.

Expenditure

Liabilities are recognised as expenditure as soon Restrictions arise when specified by the donor or as there is a legal or constructive obligation when funds are raised for particular purposes. committing the charity to that expenditure, it is probable that a transfer of economic benefits will be required in settlement and the amount of the obligation can be measured reliably. Expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all cost related to the category. Where costs cannot be directly attributed to particular headings they have been allocated to activities on a basis consistent with the use of resources. 2. DONATIONS AND LEGACIES 2024 2023 £ £ Donations and gifts 717,901 759,199 Legacies 159,944 5,312 - Motability 238,500 The National Lottery Community Fund 137,294 153,831 1,253,639 918,342 ——=5

3. OTHER TRADING ACTIVITIES

3. OTHER TRADING ACTIVITIES
	2024 £	2023 £
Merchandise Sales	3,755	5,743

4. INVESTMENT INCOME

2024 2023 £ £ Bank Interest 6,459 588 5. RAISING FUNDS 2024 2023 Raising Donations and Legacies £ £ Staff Costs 137,965 133,680 Fundraising and publicity 26,826 21,090 Events and promotions 33,953 12,304 Cost of merchandise sales 4,646 2,337 203,390 169,411 _—__ 6. CHARITABLE ACTIVITIES COSTS 2024 2023 Provision of Support £ £ Staff Costs and other expenses 337,154 373,414 Information and awareness raising 19,722 34,641 Shared experience network 13,783 24,045 Outreach service 77,482 48,285 Welfare and equipment grants 135,655 121,184 583,796 601,569 —= 2024 2023 Research Related Activity £ £ Staff costs and other expenses 42,412 18,093 - Medical research grants 6,729 Other research activities 8,862 3,477 58,003 21,570 ===

7. SUPPORT COSTS

	7. SUPPORT COSTS
				Management £
	Governance costs				92,671
2024 £ 2023 £ Staff costs and other expenses 75,039 51,285 Professional fees and bank charges 7,311 6,478 Other costs 10,321 7,210 92,671 64,973 ===
8. TRUSTEES’ REMUNERATION AND BENEFITS
There were no trustees' remuneration or other benefits for the year ended 31 March 2024 nor for the year				There were no trustees' remuneration or other benefits for the year ended 31 March 2024 nor for the year
ended 31 March 2023.

Trustees' expenses

There were no trustees' expenses reimbursed for the year ended 31 March 2024 (2023: £nil).
Payments in respect of trustee indemnity insurance amounted to £438 (2023: £398).
9. STAFF COSTS
2024 £ 2023 £ Wages and salaries 483,714 461,860 Social Security costs 41,460 43,784 Pension 21,884 20,476 547,058 526,120 —==
The average monthly number of employees during the year was as follows:
2024 2023 Management and administration 1 1 Direct charitable expenditure 12 10 Fundraising and publicity 5 5 18 16 ===
We also engaged contractors in 2024 to assist us with our management and administration 1.2 FTE.

No employees received emoluments in excess of £60,000 (2023: None)

10. COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES

	INCOME AND ENDOWMENTS FROM	UNRESTRICTED FUNDS £	RESTRICTED FUNDS £	TOTAL FUNDS £
	Donations and legacies	423,127	495,215	918,342
	Other trading activities	5,743	-	5,743
	Investment income	588	-	588
	Total	429,458	495,215	924,673
	EXPENDITURE ON
	Raising funds	169,411	-	169,411
	Charitable activities
	Provision of support	157,878	443,691	601,569
	Governance costs	64,973	-	64,973
	Research related activity	20,686	884	21,570
	Total	412,948	444,575	857,523
	NET INCOME	16,510	50,640	67,150
	Transfers between funds	(367)	367	-
	Net movement in funds	16,143	51,007	67,150
	RECONCILIATION OF FUNDS
	Total funds brought forward	548,837	40,327	589,164
	TOTAL FUNDS CARRIED FORWARD	564,980	91,334	656,314
11. TANGIBLE FIXED ASSETS
	COST	Office equipment £	Computer equipment £	Totals £
	At 1 April 2023	2,554	20,863	23,417
	Additions	-	5,192	5,192
	At 31 March 2024	2,554	26,055	28,609
	DEPRECIATION
	At 1 April 2023	1,550	14,830	16,380
	Charge for year	158	3,309	3,467
	At 31 March 2024	1,708	18,139	19,847
	NET BOOK VALUE
	At 31 March 2024	846	7,916	8,762
	At 31 March 2023	1,004	6,033	7,037

12. STOCKS

2024 £ 2023 £ Stocks held for re-sale 5,628 5,791 ————
13. DEBTORS: AMOUNTS FALLING DUE WITHIN ONE YEAR
2024 £ 2023 £ Prepayments and accrued income 25,598 36,117 —————
14. CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR
2024 £ 2023 £ Taxation and social security 16,273 14,555 Other creditors 6,722 6,120 22,995 20,675 ———i
15. LEASING AGREEMENTS
Minimum lease payments under non-cancellable operating leases fall due as follows:
2024 £ 2023 £ Within one year 15,000 20,094 Between one and five years 7,500 22,500 22,500 42,594 ——
16. MOVEMENT IN FUNDS
At 1.4.23 £ Net movement in funds £ At 31.3.24 £ Unrestricted funds General fund 564,980 30,580 595,560 Restricted funds Various funds 91,334 295,413 386,747 TOTAL FUNDS 656,314 325,993 982,307 ==S55

16. MOVEMENT IN FUNDS - CONTINUED
Net movement in funds, included in the above are as follows:
Incoming resources £ Resources expended £ Movement in funds £ Unrestricted funds General fund 634,327 (603,747) 30,580 Restricted funds Various funds 629,526 (334,113) 295,413 TOTAL FUNDS 1,263,853 (937,860) 325,993 __
Comparatives for movement in funds
At 1.4.22 £ Net movement in funds £ Transfers between funds £ At 31.3.23 £ Unrestricted funds General fund 548,837 16,510 (367) 564,980 Restricted funds Various funds 40,327 50,640 367 91,334 TOTAL FUNDS 589,164 67,150 - 656,314 __
Comparative net movement in funds, included in the above are as follows:
Incoming resources £ Resources expended £ Movement in funds £ Unrestricted funds General fund 429,458 (412,948) 16,510 Restricted funds Various funds 495,215 (444,575) 50,640 TOTAL FUNDS 924,673 (857,523) 67,150 __

16. MOVEMENT IN FUNDS - CONTINUED

A current year 12 months and prior year 12 months combined position is as follows:

At 1.4.22 £ Net movement in funds £ Transfers between funds £ At 31.3.23 £ Unrestricted funds General fund 548,837 47,090 (367) 595,560 Restricted funds Various funds 40,327 346,053 367 386,747 TOTAL FUNDS 589,164 393,143 - 982,307 __
A current year 12 months and prior year 12 months combined net movement in funds, included in the above
are as follows:
Incoming resources £ Resources expended £ Movement in funds £ Unrestricted funds General fund 1,063,785 (1,016,695) 47,090 Restricted funds Various funds 1,124,741 (778,688) 346,053 TOTAL FUNDS 2,188,526 (1,795,383) 393,143 ___

16. MOVEMENT IN FUNDS - CONTINUED Statement of funds

16. MOVEMENT IN FUNDS - CONTINUED Statement of funds
	Balance b/f at 1.4.23 £	Incoming resources £	Resources expended £	Movement in funds £
Unrestricted funds
General fund	564,980	634,326	(603,746)	595,560
Restricted funds
Toy Packs	500	1,675	(2,175)	-
Community Information Webinars	-	5,000	-	5,000
Motability	-	238,500	(110,639)	127,861
SMA Care UK Grant	-	67,354	-	67,354
Community Engagement	-	47,350	-	47,350
UK SMA Newborn Screening Alliance	5,398	15,974	(21,373)	-
SMA Horizons Project	763	(560)	(203)	-
Working with the SMA Community	68,399	137,294	(144,189)	61,504
Website & Digital Comms Development	6,274	-	(6,274)	-
Support Services	-	40,950	(38,930)	2,020
PhD Scholarship Yr2	10,000	-	(6,730)	3,270
SMA and Me Books	-	15,000	(3,600)	11,400
Know No Bounds	-	30,255	-	30,255
Content and Web Development	-	30,733	-	30,733
Total Restricted Funds	91,334	629,526	(334,113)	386,747
TOTAL FUNDS oe	656,314 oe	1,263,852 oe	(937,859) oe	982,307 oe

Community Engagement

16. MOVEMENT IN FUNDS - CONTINUED

—=

SMA UK received grants from trusts and pharma to support our community engagement events which included Picnics in the park and our Children's and adults resonate weekends.

UK SMA Newborn Screening Alliance

Toy Packs

Our multi-sensory toy packs are available free of charge to families in the UK for newly diagnosed children.They include items that provide visual, tactile and auditory stimulation. They have been designed to offer entertainment during the day, fun at bath time and comfort at bedtime. They are suitable for infants aged up to 12 months of age.

Community Information Webinars

We ask expert health, education and social care professionals questions on topics of interest and concern to the SMA Community such as on treatments, diet and exercise. These popular webinars hosted by a community member provide easy access to important up-to-date and accurate information.

The Alliance brings together clinicians, patient groups and other stakeholders, determined to achieve the earliest possible introduction of newborn screening for SMA in the UK and in so doing deliver the best outcomes from treatment and reduce future healthcare costs. This fund supports the costs of the Project Manager, the secretariat (SMA UK and MDUK) and communications.

SMA Horizons Project

The SMArt Horizon project has the goal to identify new innovation, 'out of the box' therapies for people living with SMA, especially for the chronic population. These therapies may be complementary to the existing ones that target the SMN upregulation.

Working with the SMA Community

This Fund goes towards the costs of our information, outreach and support , community development and advocacy services.

Motability

SMA UK were awarded a 3 year grant from The Motability Foundation, giving us the opportunity to assist people living with SMA in purchasing mobility equipment and wheelchairs through our SMArt Moves grant.

SMA Care UK Grant

The SMA Care UK project will bring together members of the SMA community and a range of health care and other professions to update the guidance outlined in Standards of Care (2018) and ensure it is relevant and meaningful to those living with SMA in the UK today. Funding has been received and requested from trusts and industry.

Website & Digital Comms Development

This year this fund was set up to enable the launch of a new website and branding refresh targeted for August 2023. It also increased our Communications staffing capacity, our communications reach and supported the further development of community virtual networks.

Support Services

This fund targeted any Support Services costs that were not covered by any of the other restricted funds that support this work.

16. MOVEMENT IN FUNDS - CONTINUED

PhD Scholarship Yr2

This supports our commitment to fund the 4- year research programme that aims to further understand the motor enlargement process in people who have SMA and how this might be addressed and improve treatment outcomes. It runs from 2022-2025, and is funded jointly with Muscular Dystrophy UK.

Content and Web Development

As part of our on going website and communications development, were we awarded a grant to strengthen and facilitate Community engagement through our multimedia platforms whilst improving imagery including videos on the SMA UK website.

SMA and Me Books

The books 'SMA and me' were published in 2016 before disease modifying treatments changed the landscape of SMA. With input from children living with SMA, their families and their clinicians, this new resource sponsored by Biogen, will help children to understand what SMA is, how the treatments work and, importantly, why we now see so many individual differences within the SMA community.

Know No Bounds

Two members of the SMA Community have set them self a challenge to climb Snowdonia to fundraise for SMA UK to purchase specialise off road wheelchairs therefore aiming to give more opportunities for people living with SMA to explore the great outdoors.

17. RELATED PARTY DISCLOSURES

There were no related party transactions for the year ended 31 March 2024.

18. CHARITY STRUCTURE

On 4th August 2022 the charity changed from a 'company limited by guarantee' to a 'charitable incorporated organization'.

DETAILED STATEMENT OF FINANCIAL ACTIVITIES for the Year Ended 31 March 2024—	—	—
	2024 £	2023 £
INCOME AND ENDOWMENTS
Donations and legacies
Donations and gifts	717,901	759,199
Legacies	159,944	5,312
Motability	238,500	-
The National Lottery Community Fund	137,294	153,831
	1,253,639	918,342
Other trading activities
Merchandise sales	3,755	5,743
Investment income
Bank interest	6,459	588
Total incoming resources	1,263,853	924,673
EXPENDITURE
Raising donations and legacies
Staff costs and other expenses	137,965	133,680
Fundraising and publicity	26,826	21,090
Events and promotions	33,953	12,304
Cost of merchandise sales	4,646	2,337
	203,390	169,411
Charitable activities
Staff costs and other expenses	379,565	391,507
Medical research grants	6,730	378
Other research activities	8,862	3,099
Information and awareness raising	19,722	34,641
Shared experiences network	13,783	24,045
Outreach service	77,482	48,285
Welfare, equipment grants and toy packs	135,655	121,184
	641,799	623,139

	2024 £	2023 £
Support costs
Management
Staff costs and other expenses	75,039	51,285
Professional fees and bank charges	6,642	6,478
Other costs	10,990	7,210
	92,671	64,973
Total resources expended	937,860	857,523
Net income	325,993	67,150

Address: Unit 9, Shottery Brook Office Park. Timothy’s Bridge Road, Stratford-Upon-Avon, Warwickshire, CV37 9NR [e-mail] | 01789 267520 Registered Charity Number 1106815