aware Fighting Myasthenia Together aware Re ort of the Trustees and Financial Statements for the Year Ended 31st March 2024 ¥1 -4*1 02 STAR Myaware is a Re9lStered Charity No. England & Wales 1046443. Scotland SC044744. Company Limited by Guarantee No. 3038358 (England & Wales) Myaware Report of the Trustees and Financial Stalements for the Year Ended 31$1 March 2024 Contents Chair's Report CEO'S Report Report of the Trustees Objectives & Activities of the Charity Achievement and Performance Future Developments Reference and Administrative Details Structure Govemance and Management Financial Review Statement of Trustees Responsibilities Report of the Independent Auditors Statement of Financial Activities Balance Sheet Cash Flow Statement Notes To the Cash Flow Statement Notes to the Financial Statements 14 15 16 18 21 22 26 27 28 29 30 Myaware Report of the Trustees and Financial Siatemenis for the Year Ended 31$t March 2024 Chalr's Report- Trevor Ranson At Myaware. we exist to work with everyone with a Myasthenia condition, their support networks and healthcare professionals to raise Myasthenia awareness and reduce time to diagnosis. We empower patienls to navigate the UK healthcare system and obtain the best clinical oulcomes possible and provide support to everyone with a Myasthenia condition. We fund evidence-based research lo understand the origins and biology of Myasth8nias, and use research to advance towards treatment. tests and cures - improving the everyday experience of people living with a Myasthenia condition. We achieve this vital work through the kindness and generosity of the community who support us and work with us to ensure all people with a Myaslhenia condition can live well, now and in the future. I would lik8 to begin wilh the people at the heart of our work. The many people living with Myasthenia conditions we supported this year, who have in lum provided inspiration, motivation and insights from which we continue to learn from. They drive every aspect of our work and make everything worthwhile - Thank you. This year w8 have conlinued to implement the new operational structure, in our move from a regional to a national support-service delivery model. Throughoul Ihe year, Myaware has provided a listening ear, delivering information and signposting to all our members via telephone, online support sessions and social media. Our welfare benefits and advice service remains popular, offering much needed financial and rights-based support. Alongside this, Myaware continues to champion, fund and value high-quality research via our partn8rship work with world-class academic institutions. Our national model requires us to serve our membership community in a more innovative, collaborative and sustainable way. This year we have enhanced the us8 and development of our online systerns. and we continue to integrate our financial and operational processes to ensure our infrastructure is as robust as possible. Every day we work with key 8takeholders, including people living with Myaslhenia conditions, specialist healthcare provlders and Industry partners to understand patient education gaps and address unrnet needs, expand healthcare access, increase funding, and improve health policy refom through the inclusion of patient experience data. I would like to say a big thank you lo all our supporters who believe in us, choose to donate to us, fundraise for us, or remember us in their wills. And to our corporate partners, trusts and foundations, and the people who work for them. You enable us to do great work and offer your skills and expertise in kind - thank you. We deeply appreciate your trust, enthusiasm and support. While this report talks about our work In 202312024, we cannot but reflect on these difficult times - the crisis in heallh and social care, Ihe impact of Ihe cost-of-living increases, and the lingering effect Ihe coronavirus pandemic has had on people living with rare diseases. Such socio-economic and political events represent unprecedented challenges, and we continue to adapt to these changes, With thanks from myself and the whole team at Myaware, Page 1 Myaware Report of the Trustees and Financial Statements for the Year Ended 31st March 2024 CEO'S Report- Dr Heldl Harrlson Membership Historic research publications have stated that there were approx. 12,000 people living with myasthenia in the UK. In December 2021 a research paper entitled Prevalence and incidence of neuromuscular conditions in the UK between 2000 and 2019, wrilten by lain Carey was published outlining that this data is now estimated at 20,000 people in the UK. Throughoul 2024, Myaware's records showed that membership continued to grow steadily, reaching 2,750 members in March 2024. Over Ihe year, Myaware was delighted lo welcome hundreds of new members. Myaware appreciates that our members require Ihe highesl level of support at the beginning of and at crisis poinls in their Myasthenia journey and our aclive membership figures reflect this. Myaware began implementing lifetime memberships effective from January 2024 to ensure that members can continue to access information and support throughout their Myasthenia journey. Age Nation 251x1 20 Unknown • 19to 29 I 30to 39 • 40to49 • 501059 Isoo 601069 •70to79 •80to89 •90to99 •100+ Condition Ic#Jo 2500 2000 1500 iooo 500 Unknown • Ocular Myasthenla Generalised Myasthenia England •Wales Lambert Eaton Myasthenic Syndrorne Scotland • Northern Ireland Congential Myasthenic Syndrome Inrernational Page 2 Myaware Report of tha Trnsteas and Financial Statements for the Year Ended 31$1 March 2024 CEO'S Report contlnued Myaware national support services Myaware members benefit from a range of online and telephone support and information services which guide individuals and their family members through diagnosis and beyond. Throughout 2023-24 Myaware continued to provide and enhance online services to ensure members had access to information, advice, and peer support. We have worked hard to implement the new national delivery model, with continued streamlining of services across the UK. Onllne sesslons and webinars This year we successfully delivered weekly online support sessions, bringing our members together to discuss comfflon issues and share valuable experiences. Our highly experienced National Support Co-ordinators and Benefits and Welfare Officer provided positive and empathetic updates regarding support, awareness and research, and imparted vital information on how to live well with Myasthenia. We also hosted our first webinars, a brand-new offer from Myaware. Thase webinars were presented by our Research and Partnerships Officer and Dr Katherine Dodd and facilitated by the Support Tearn. Myaware provides a combination of monlhly online sessions for members who are new lo the condition and to our organisation, along with Peer Support Sessions for our general membership, we also provide sessions specific to age and condition, with a new offer also introduced for carers encompassing welfare related topics, Our aim is to remove any sense of isolation by guiding members through the first few months of their diagnosis, and then keep members connected with others who may find Ihemselves in a similar set of circumstances. We are delighted that over 1,030 members attended our onlin8 sessions this year and benefited from information and peer support. "These are brilliant as the conversallon is linked not just to MG but 811 other aspects that impact on MG. These sessions are imperative, online or in person.. "Very interesting. l188rnt 8 lot just by listening to otherslll "Thank you for hosting this online session. It was very informative, and most importantly It made me feel less alone, as I try and learn how to navigate this condition." Peer support network and soclal medla Myaware facilitates and manages a variety of national social media closed groups, and this year we have connected over a thousand people living wilh Myasthenia and Iheir family members. These groups provide a vital lifeline of peer support and a platform for Myaware to share updales and answer common questions. Our national peer support closed group caters for all members regardless of type of Myasthenia, age, or location. Our Myaware kids closed group is especially for parents of children who have been diagnosed with any form of Myasthenia, and our Young Generation closed group provided a platform for those aged between 18 and 39 where discussion can focus around education, employment or pregnancy and Myasthenia. And new this year, our much-needed closed group for careis. .1 have finally been officially diagnosed with CMS and 18m in a bit of shock, it is bittersweet for sure... l am so grateful for the Myaware Facebook group, il has been such an encouragement." Page 3 Myaware Report of the Trustees and Financial Statements for the Year Ended 31st March 2024 CEO'S Report continued Beneflts and welfare advlce service The benefits system is complex, the rules can change, and when living with an unpredictable and somelimes debilitating condition like Myasthenia, il can be difficult to find the energy and time lo fully research every opportunity to improve your quality of lrfe. Myaware's dedicated Welfare Officer is here to help our members navigate the benefits system and check if they are entitled to any finanGial assistance, or support relaling to transport, ernployment, or education. This year Myaware has responded to 356 benefits and welfare enquiries, Amongst these were: Driving & Myasthenia enquiries Employment and Myasthenia enquiries Personal Independence Payment enquiries Attendance Allowance enquiries Blue Badge enquiries Appeals Like all our support services Ihis advice is available to all members in England. Scotland. Wales, and Northern Ireland. The ser4ice is provided by telephone (Monday-to Friday 9am-5pm), on the Myaware wabsile, and via our online support sessions. "You provided great assistance as ever and gave me confidence regarding upcoming PIP review." "Extremely helpful when I was applying for Attendance Allowance. Thank you so much." "More h81pful than you could ever imagine, l just didn't know how to apply for help or even if I could.. Telephone and email, support and Infomiatlon Our dedicated Head Office and Support Teams are available to offer reassuran￿, advice and information. Whether members have a question they want answering or want to know more about Myaware objectives or services, our dedicated staff are here to help inform and guide members. 'It Was lovely to speak to you last week, and to receive your very helpful email on Monday. Thank you so much, for taking the tlme to research the areas of concern that I have with the Ocular Myasthenla. It was very reassuring. Thank you to all of the team at Myaware, givlng of your time to help Myasthenia patients like me. You are greatly appreciatad,. Emotlonal support service People can have many reactions lo Myaslhenia, and for this reason our National Support Coordinalors are here to listen and when needed can help point you to specialist support. 'Many thanks for your help and advice, it is massively appreciated. My sudden diagnosis and symptoms which have followed have been quite overnhelming and the infom7ation I've received from seeing neurologlsts about my MG had been limited - maybe in the most part being down to me not really knowing what to askl The support I've received from Myaware and the help and advice from you all has be8n invaluable and made things a lot less daunting for me. Thanks again for everything. It s reassuring to know thal with support from Myaware, there is help out there, and for me listening to others experiences in the support groups will be invaluable." Page 4 Myaware Report of the Twslees and Financial Statements for Ihe Year Ended 31$1 March 2024 CEO'S Report continued Myasthenla website, information, signposting and literary library In an increasingly digilal world, the Myaware website (found at www.myaware.org), is one of the most useful digital and communication tools the charity has. Our website exists to eslablish and mainlain a relationship with the Myasthenia community, supporters, funders and the public. Our website helps us to provide information and advice, and deliver services to m8mbers, h9althcare professionals, carers and a broad spectwm of stakeholders. For those who prefer to learn aboul Myasthenia in print, Myaware provides a vast library of information booklets and leaflets aimed at different audien￿5, such as the: Myasthenia Gravis information leaflet LEMS infonnation leaflet Health Care Professionals leaflet Ocular Myasthenia - a guide for medical profassionals Ocular Myasthenia - a guide for patients Myasthenia and pregnancy factsheet Congenital Myasthenia - a guide for patients CMS Pregnancy leaflet - a guide for patients A variety of flyers promoling Myaware services Myaware regularly provide large print version for members with visual impairments. Together, the Myaware website and the charily's social media acts a8 a digital hub enabling us to share the fantastic stories of our members and how Ihey have been empowered to understand their conditions, have greater say on the treatments and therapies available, and connect with other members who have Myasthenia related conditions via peer-to-pear support. Our website Includes lols of helpful information including Current research on Myasthenia, drugs to avoid, and places to find additional support. We also use our website to promote good news stories, fundraising events, and future online community sessions. The main objectives of the website are to provide advice and support for members and carers, to increase awareness in primary and acute medical audiences, as well as the general public, and to champlon evidence-based research enhancing medicines, surgical treatments and therapeutic interventions, In addition, users can access the charity's annual accounts, online shop, r9gister for support events, and attain membership informalion. We urge anyone visiling our website to become a Myaware member, whether they have a Myasthenia diagnosis, are a relative, carer or a healthcare professional with an interest in Ihe Myasthenias. Our website operates the 'ReachDesk toolbar, which ensures vlsitors can access our content in a way that suits them best. Including text-to-speech, reading and translation support. Page 5 IAyaware Report of the Trustees and Financial Stal8ments for the Year Ended 31S1 March 2024 REPORT OF THE TRUSTEES The Trustees who are also directors of the charity for the purposes of the Companies Act 2006, present their report with the financial statements of the charity for the year ending 31° March 2024 which are also prepared to meet requirements of the directors, reports and accounts for the Companies Act purposes. The financial statements comply with the Charities Act 2011, The Companies Act 2006, the Charities and Trustee Investment (Scotland) Act 2005, the Articles of Association and Accounting and reporting by Charities.. Statement of Recommended Practice applicable to charities prepaiing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1st January 2019). OBJECTIVES & ACTIVITIES OF THE CHARITY We support people affected by Myasthenia and related conditions, raise awareness about the conditions and fund research to find new therapies to reduce their impact and ultimately find a cure. Wo provide the followlng core 8UPPOrt sorvices: Telephone advice and information service. Support and information sessions delivered vla online sessions covering research information, general support discussions and benefils and welfare advice. Monthly new members support sessions. Online sessions for condilion type and age specific lo support children up to the age of 18 and young people belween the ages of 18 and 39. Information and support via the Myaware website. Our social media services include closed, secure groups for peer support for informalion and signposting. Welfare benefits and advice service. We raise vltal awareness of Myasthenia in the following ways: We represent our members via membership of umbrella organisations such as UK Neurological Alliances, Rare Disease UK and National Voices. Myaware provides specific information for our mernbers and the general public via our website Myaware provides information packs for clinicians throughout the UK. yaware is comrnltted to effectlvoly and rosponsibly funding research projects On the followlng areas: Cause, cure, prevention, treatment and quality of life, in relation to Myasthenia and related conditions. Myaware is commilted to training cliniGians of the future in the field of Myasthenia. Myaware is commilted to effectively communicating research project outcomes and future research opportunities with transparency to our members and general stake holders. To support these aims we undertake a large variety of fundraising activilies and as always are hugely graleful to the many people who have supported us with individual giving. community and event fundraising. As always, the Ghallenge is to raise more unrestricted funds that can be used to finance the day to day running of the charity - postage, telephone, printing, online services and other core costs and we are particularly grateful to those who donate rnoney that can be used in this way. Page 6 Myawar8 Report of th8 Trust88s and Flnanclal Statements for the Yaar Ended 31$1 March 2024 REPORT OF THE TRUSTEES Grant making policy The Charity may award grants to scientific research, specialist myasthenia nurses and training fellowships in support of its objective and activities. Grants are awarded by the Board of Trustees when funds become available. and only when the reserdes position of the charity mitigates Ihe risk committing funds to projecls running across several yeafs. Research grants are awarded following a rigorous peer ￿VIeW process under the control and supervision of the MyavRre Medical Committee. Public benefit The charltable company has referred to Ihe guidance contained in the Charity Commission's general guidance on public benefit when reviewing its aims and objectives and in planning its future aclivities. In particular, the Truslees always consider how planned activities will contribute lo the aims and objectives they have set. ACHIEVEMENT AND PERFORMANCE How we spend our money: Support - £545,474 Research - £402,408 Awareness - £107,598 Fundraising - £12,655 Awareness io% Fundraising Support 51% Research 38% Page 7 Myawar8 Report of the Trusl88s and Flnanclal Statements for the Year Ended 31st March 2024 REPORT OF THE TRUSTEES ort of members Our membership grew steadily during the financial year, Our data shows thal we have welcomed hundreds of new members during the year, all of whom have received a 'newly diagnosed support pack.. This year we reviewed our membership renewal process and moved to lifetime membership, this will hopefully assist us in reaching and supporting more people affected by Myasthenia. Newsletters continue to be sent to our members quarterly, providing news, support, encouragement and acknowledgement to Ihose who have supported Myaware via donations and fundraising initiatives. We continued to bring together specialist Myasthenia nurses from across the UK to facilitate the sharing of knowledge expertise across the sector. In 2023, we introduced a carer only social media community group and online support sessions in recognition of the impact Myasthenia has on those with caring responsibilities. We facilitated our first sessions for carers and welcomed carer-members lo this new support group. We held our firsl Kids online sessions for parents of chlldren wlth Myasthenla, this gave parents the opportunity to come together with other parents and share experiences and gain peer support from others in similar situations. Myaware provided several online support sessions focused on Congenital Myasthenic Syndrome and Lambert Eaton Syndrome. We also delivered our first webinars thls year In May 2023 and February 2024. 524 people signed up to attend these events. In total 672 members attended national online sessions and webinar sessions to access peer support, information, and friendship. Over 1132 people used the carefully moderated Myaware member only closed social media groups, which provide a safe plalform on which to share thoughts, concems and experiences and receive information and support. Telephone and email support are provided Monday to Friday, 9am to 5pm for members who need advice, information or someone to talk to. This service is delivered by our dedicaled and caring Support Team and Head Office staff. Benefits and Welfare advice was effectively and empathetically delivered to 356 members - giving financial and rights-based advice to support people living with Myaslhenia and their families. Page 8 Myaware R8POrt of the Truste8s and Financial Statements for th8 Year Ended 31 $1 March 2024 REPORT OF THE TRUSTEES Research The Research and Partnerships Officer {R&PO) oversaw the continued support of a variety of projects funded by Myaware. The R&PO also prepared and pursued the execution of contracts relaled to funding new projects within the research budget for the financial year 2023-2024. The details of these projects and contracts are as follows: Professor Isabel Lelte {University of Oxford): The Establishment and Use of a UK Database for Myasthenlc Dlsorders: Dr Ashraghi has applied for further funding to ensure population of the database with historical data. This funding will partially cover the employment of a Research Fellow who will apply for temporary contracts with NHS trusts to carry out data entry, The database coordinator is being funded by Myaware until September 2025. Dr Ashraghi will work with the coordinator to continua populating the database for this period and then reassess Ihe need for further funding. During the period, Myaware will receive an annual summary of achievement. Professor Davld Wralth and Professor Salju Jacob (Unlverslty of 8lrmlngham): Developlng Antlgen Speclflc Immunotherapy for Myasthenia: Dr San's project is looking to develop our understandlng of antlgen recognltlon In Myasthenla, and this work is continuing well. There has been a no-cost extension to the project that has been approved between the University of Birmingham and Myaware. Or San has continued her Glinical training with Professor Jacob while she carries out her lab work on this exciting project. Dr San has published two papers based on this work so far: San, P. P. and Jacob, S. (2023) 'Role of Gomplement in myasthenia gravls,, Frontiers In Neurology, 14. A vailable at.. htt s.'//doi.or 10.3389/fneur. 2023. 1277596. San, P. P., & Jacob, S. (2023). Autoantibody-mediated neurological diseases. Medicine, 51 (8), 558-568. htt s.'//doi. or 10.1 Dr Katy Dodd (University of Manchester): Optlmlslng the Immunosuppresslve Management of Myasthenla Gravls." Dr Dodd presented an overview of treatmenls in Myasthenia to the Myaware membership community in February and held an open discussion to hear where our community would like research to focus on going forward. Dr Dodd's T Cell work has helped identify interesting characteristics of T cells in both refractory patients and those with active and difficult to treat Myaslhenia. Dr Dodd is looking lo submit this work for publication in the near future and has presented it at national and intemational medical conferences. Page 9 Myawafe Report of the Twste88 and Financial Statements for tha Year Ended 31st March 2024 REPOR T OF THE TRUSTEES Research- continued Hayley Ramjattan {Unlverslty of Oxford) - CMS Monitoring: Hayley Ramjattan is a specialist neuromuscular physiotherapist who treats patients wilh Congenital Myasthenic Syndromes (CMS). At present, there are no validated outcome measures used to guide management, medication, and exercise for CMS patients. The aim of this project is to try and improve this and identify whether unvalidated tests used in managing Myasthenia Gravis patients (MG) could be effective. The data cut for the CMS project has been carried out, and Hayley has submitted her thesis for review and presented at th8 Post graduate symposium at the University of Oxford. This data will be shared with the Myaware community after Hayley's research has been published. Professor Isabel Lelte (University of Oxford): cov1￿19 Vacclne Response In Myasthenia Gravls Patlents.. The funding agreement for this project has now been signed by the Universily of Oxford and countersigned by Myaware. Recruitment for an appropriate researcher to undertake this work is underway. Partn8rshi Myaware have successfully applied for introduclory membership with Ihe Association of Medical Research Council (AMRC). With this membership, Myaware will be able to improve its existing network within the research community. In addition, the R&PO is now able to attend workshops hosled by the AMRC and develop their own skills in writing research policy and different methods of gettlng Involved in research from a patient organisation perspective. The R&PO was additionally invited to the Rare Disease Connect in Neurology conference in Berlin in November 2023. At this conferen￿, the R&PO was able to connect with representatives from other myasthenia-focused patient organisations from across the globe. Live translation software allowed all delegates to speak in their nalive languages to one another, creating a collaborative and welcoming experience for all. This meeting also involved healthcare professionals from a variety of countries, and there were opportunities to work together and discuss ways to improve Myasthenic care from an international perspective. Finally, Myaware successfully applied for a funding grant amounting to £19,641.93 from the pharmaceutical company Merck. This grant will go towards several projects related to Myaware's core ser4ices, including the annual research impact report, annual member surrfey, and literature library refresh. We hope to continue this sponsorship with a new application to Merck for the next financial year. Pag8 10 Myaware R8POrt of the Truste88 and Financial Stat8m8nts for the Y8ar Ended 31st March 2024 REPOR T OF THE TRUSTEES Awareness Myaware continued to bring together specialist Myasthenia nurses from across the UK to share knowledge and expertise. We plan to continue hosting these meelings to help contribute to a better understanding of the needs of people with Myasthenia amongst health care professionals. We hosted our first webinars, a brand-new offer from Myaware, These webinars were presenled by our Research and Partnerships Officer and focused on our Research Impacl Report, which covered the last 10 years of research funded by Myaware, and Dr Katherine Dodd, who educated members on advances in research. We attended the CMS Patient Day on 201h May. The specialist leam in Oxford hold this event every year, wilh the aim to update patients on treatments and information and give those affected an opportunity to meet others affected by this rare condition. In May 2023 we hosted My Awareness Month (MAM) and Ihis year we focused on raising awareness of all the Myasthenia's with healthcare professionals. As we understand the difference having an early diagnosis, access to good health care and support can make to someone's life, and we wanted to do our best to ensure that more peop18 experience this. We updated our Health Care Professional leaflet and encouraged members to share this with Heallh Care Professionals (HCPS) in their area. We joined MDUK and other leading Myasthania specialists for the 202312024 Virtual Information Seminar (Myaslhenia Gravis) hosted by MDUK on the 1 S¢h February 2024. The Nalional Support Manager and Research and Partnerships Manager altended MG: Connects In October 2023 in Manchester. This day was organised by UCB (Union Chimique Belge) and designed to bring neurologists and specialist nurses together to better coordinate Myasthenia care. Myaware were invited to host a stall at the event where we provided HCPS with literature, information about the charity, and invited them to join as professional members. Myaware also had the opportunity to listen lo several lalks given by HCPS on the challenges in Myasthenia care. Webslte perfomianco Myaware continues to offer an all-in-one digital inclusion solution called Reachdeck across our website. It helps us lo ensure that our online content is accessible and usable to everyone by: Improving tho accessibility. readablllty and reach of our online content Protecting our communlcations, content and reputatlon Empoworing our whole toam to communlcate wlth confldence Reachdeck allows all our web visitors to translale all contenl in over 100 languages, with the option lo request read aloud content, increase or reduce text size and change font and background and lext colours to increase readability for those who are visually impaired. Pag8 11 Myawar8 R8POrt of th8 Trustees and Flnanclal Statémants for the Year Ended 31S1 March 2024 REPOR T OF THE TRUSTEES Revlew of Income Activities £900.O¢X) £856,054 £800.0 £700,0 £600,0 £500,0 £4￿,000 £3W,000 £2W,CM)O El00,￿0 £86,422 E86.887 £2,069 £11,782 £2,825 E4.946 E31,629 £3.147 E41,463 £4,375 E17,5CK) £29,301 £0 Total £1 178 400 2023124 contlnued to be a challenglng year for fundraising. The ongoing impact of the cost-of-living crisis continued to make it difficult for our support&rs lo donate. Despite the challenges we are incredibly grat8ful to all those who were able to conlinue to support Myaware. The Fundraising Team also faced challenges in racruiling a full Fundraising Team, and for the whole of 2023124 functioned with a team of two, National Fundraising Manager and Individual Giving Fundraiser. During the year we were grateful to 23 people who remembered Myaware in the wills. Restricted bequests totalled £8,449, and unrestricled bequests totalled £847,605. We received £49,129 from Trusts and Grant giving organisations this year. An increase of 43Vo since last year. One of the donations for £11,787 was received from the Vitol Foundation. Other donations ranged from £200 to £5,000, Income received via Events decreased by 190/0 on the pravious year and totalled £41 ,463, as there was no Events Fundraiser in place for the whole of the 2023124. However, this has been rectified for 2025. During this financial year Myaware received £29,301 in In Memoriam donalions and we a extremely grateful to those who have chosen to remember their loved ones by donating at fv1yaware. Page 12 mYaWa￿ Rep)rt of the Trustees and Financial Slalements for Ihe Year Ended 31st March 2024 REPOR T OF THE TRUSTEES act and Value Myasthenia means muscle weakness. It affects the muscles that let you move but not the automatic ones like your heart that you don't have to think about. Your brain tells your rnuscles to work, but the message doesn't get through. Symptoms of Myasthenia include muscle weakness which makes day to day activities like walking, smiling and talking very difficult. When swallowing and breathing are affected, this can lead to a medical emergency. Myaware works lirelessly to provide accessible supporl services and infomiation to everyone who receives a Myasthenia diagnosis. We estimate there to be approximately 12,000 people in the UK with Myasthenia related condilions but there are currently no accurate published figures. Myaware supports approximately 25 % of those who have received a Myasthenia diagnosis. and our aim is to raise more awareness to ensure that everyone who receives a diagnosis can access the support that they need to live well with Myasthenia. A Myaslhenia diagnosis can be life changing and we airn to make life easier for these people and their families in the following ways.. Accesslble Informatlon and support online, on the telephone or vla emall 40 online support get-togethers this year providing support, infonmation and advice. Several secure Facebook closed groups providing online peer support and advice. National Facebook, Twitter and Instagrarn pages offering information and signposting. Telephone and email support vla our Support and Head Office Teams, Benefits and Welfare advice service. Online information for people living with Myasthenia their family members and healthcare professionals via our website. Increased awareness amongst the public and healthcare professionals Comprehensive website offering accessible information on all aspects of living with Myasthenia. A range of detailed booklets on Myasthenia. It's symptoms and treatments. Newly diagnosed information packs and medical cards. Clinic awareness packs for GP surgeries, neurology clinics, dentists, optician and pharmacies. Represenlation of our members needs at Neurological Alliance, Rare Disease UK and National Voices. Representation of our members needs at annual MG Connects meeting for Neurologists. Myaware is committed to eff8ctlvely and responslbly fundlng research projects In tho followlng areas: Cause Cure Prevention Treatment Myaware is also commitled to training clinicians of the fulure in the field of Myasthenia and effectively communicating outcomes regarding current and future research opportunities with transparency. Page 13 Myaware Report of the Trustees and Financial Stat8ments for th8 Year Ended 3151 March 2024 REPOR T OF THE TRUSTEES FUTURE DEVELOPMENTS AMBITIONS AND LONG-TERM STRATEGIES Meeting increasing demands of support from people affecled by Myasthenia requires Ihe charity to focus on developing future sustainable funding streams. Following the pandemic, Myaware now provides a nationally focused Support Team who deliver support via online plarfomis, social media, telephone and email, fv1yaware is committed to seeking member feedback via our annual member survey and short online surveys on our Social Media platforms, this assists with future services strategy. Myaware is developing additional ways in which lo allow our members lo submit feedback regarding specific support that they have received. This will be via 'How did we do, short questionnaires. Myaware will continue lo develop the support and information provided via our website and improve our website user journey to ensure vital information is easily obtainable. Myaware alms to improve access to our core sep4ices for those with accessibility challenges. Myaware will continue to be committed to effective communication and engagernent with our members. Myaware will increase ils work relaling to raising awareness wlth healthcare professlonals to improve accurate and tirnely diagnosis. This is planned via an External Medical Advisory Committee to assist with providing accurate and up-to-date medical infonnation regarding the Myasthenias. myav￿re continues to be commilted to representing our members at national forums such as Neurological Alliance and Rare Disease and to feedback updates and outcomes to our members. Myaware is committed to effectively and responsibly utilising restricted research funding to support projects in the areas of cause, cure, prevention, treatment and general improvement of quality of life, in relation lo Myasthenia and related conditions. Page 14 Myaware Réport of thè Trusteas and Financial Slatemants for the Yèar End￿ 31st March 2024 REPOR T OF THE TRUSTEES REFERENCE AND ADMINISTRATIVE DETAILS Myaware is Company Limited by Guarantee Registered Company Number in England and Wales: 3038358 Registered Charity Number in England and Wales.. 1046443 Registered Charity Number on Scotland; SC044744 Règistérod Offico The College Business Cenlre uitoxeter New Road Derby DE22 3WZ Auditors Johnson Tidsall Limited Chartered Accountants 81 Burton Road. Derby DE1 1TJ Chief Executive Officer Dr Heidi Harrison Company Secretary Ben Bourne, Ellis-Fermor & Negus also acts as solicitors to the charity: Ellis-Fermor & Negus, 2 Devonshire Avenue, Beeston, Nottingham NG9 1BS Bankers Virgin Money 11 Smithy Row, Nottingham NG13EJ Trustees Trevor Ranson - Chair Andrew Robinson - Treasurer Jon Rio Professor Bethan Peach Professor Saiju Jacob Maria Isabel Leite (resigned 09.02.24) Huw Simmonds (resigned 31.03.24) Tony Ferrari (resigned 08.07.24) Rashmi Rungta Penny Henrion Fiona Norwood Claire Wen (appointed 19.02.24) Sara Jones (appointed 08.05.24) Channa Hewanadduma (appointed 24.07.24) More infomiation regarding the Trustees can be found at,. htt s'.IIwA*W.m aware.or eslfa slcate Imeet-the-board Page 15 Myaware R8PDrt of the Trustees and Financlal Statements for the Year Ended 31st March 2024 REPORT OF THE TRUSTEES STRUCTURE GOVERNANCE AND MANAGEMENT Myaware is a company limited by guarantee, incorporated on 27th March 1995 (number 3038358), a registered charity in England and Wales (number 1046443) and a charity registered in Scotland (number SC044744). It is govemed by its Memorandum and Articles of Association adopted on 271h March 1995 and amended on 29th March 2018. Subject lo the provisions of the Companies Act 2006, the articles and to any directions given by special resolution, the business of the Company is managed by the Trustees who may exercise all the powers of the Company. No alteration of the articles and no such direction shall invalidate any prior act of the Truslees which would have been valid if that alleration had not been made or that direction had not been given. The powers given by this article shall not be limited by any special power given to the Trustees by the articles and a meeting of Trustees at which a quorum is present may exercise all the powers exercisable by the Trustees. The pay and remuneralion of Ihe senior managers of Myaware is considered annually by the trustees. The board of Trustees meets during the budget setting process to review salary levels, incremenl payments and inflation rises. The Trustees consider benchmark information relating to similar posts in similar organisations within the charity sector to assist with their decision. We continue to work in partnership wlth other organisations with shared interest, including Neurological Alliance and Rare Disease UK. Fundralslng and data protection Myaware operates within a strict fundraising policy and never uses telephone cold-calling; purchase address lists to write unsolicited letters, share the membership list to third parties or usa any other methods or approaches that may be deemed as harassing or pressurising the recipient, We always respect Ihe privacy of those who share Iheir personal information with us. Recrultment, appointment, inductlon and tralnlng of new Trustees Only members of the charity may become Trustees. The Articles of Association allow the Trustees to appolnt candidates to become a Trustee (and Director), either to fill a vacancy. or the strengthen the Board. Candidates become known lo the Board through personal knowledge or research of existing Trustees. by interested members of the organisation volunteering their sepiices or, occasionally, as a result of advertising by the Board. Before appointing a new Trustee, the Board will consider any perceived weaknesses in the current Board in terms of special abilities or experience which they believe to be lacking. A potential candidate will then be approached by the Chair. Where possibla the candidate will be inviled to altend one or more meetings of the Board as a nonvoting observer. The candidate may then be appointed as a Trustee by a formal motion of the Board. The Chair takes care to ensure Ihat new Trustees receive personal guidance on their responsibilities under the Charity's Articles, and Charity and Company law. They may also seek advice and assistance from the Treasurer and Ihe Company Secretary. Pag8 16 Myaware Report of the Trustees and Financial Sla18ments for the Year Ended 31SI March 2024 REPORT OF THE TRUSTEES aware Sub.commlttees Medical Committee: Professor Bethan Peach Professor Saiju Jacob Maria Isab81 Leite (resigned F8bruary 2024) Penny Henrion Fiona NonNood Charlolte Campbell - Research and Partnerships Sarah Cuthell CEO (resigned July 2024) Dr Heidi Harrison CEO (appointed July 2024) Channa Hewanadduma {appolnted July 2024) Flnance Commltte6: Andrew Robinson (Treasurer) Jon Rio Rashmi Rungta Jamle Capla - Finance Manager Sarah Cuthell CEO {resigned July 2024) Dr Heidi Harrison CEO {appointed July 2024) The Chief Execulive Officer (CEO) is appointed by the Trustees to manage the day-to-day operations of the charity. The CEO reports lo the Chair as her line manager. Page 17 Myawar8 R8POrt of th8 Trustees and Flnanclal Statèments foi the Year Ended 31st March 2024 REPOR T OF THE TRUSTEES Risk Mana 8ment A risk review of the overall organisalion takes place annually. The review took place in July 2023 and then in June 2024 when a commiltee of Trustees assessed the major risks. Subsequently, systems and procedures have been established to manage those risks. An annual budget proposal covering anticipaled income and expenditure is created by the CEO and Finance Committee and reviewed by the Trustees. Once agreed, this forms the basis of the financial reserve held by the charity to ensure thal commitments can be met. The Finance Committee review performance against the agreed budgel on a monthly basis and the full Board considers this quarterly. Th8 board consider any variation to budget and if necessary, implement changes to mitigate any risks identified. FINANCIAL REVIEW Flnanclal Posltlon The organisation reported a total net surplus of £130,370 compared with a total net deficit of £395,713 in the previous year. This was due to several significant legacies gifted to the charity. Unrestricted funds increased by £450,050 to £1,801,464 Restricted funds decreased by £319,680 to £339,486 Incoming Rosources Total incorning resources for the year were £1,178,400 up by £848,956 from the previous year. This year we received £972.242 in donations, of which £856,054 relates to legacy gifts. We received £11,488 in restricted funds. Income fiom olher trading activities increased by £18,231 to £119,736. Investment income has increased by £42,560 to £86,422. Page 18 Myaware Report of the Trust88s and Financial Statem8nls for th8 Year Ended 31 $1 March 2024 REPOR T OF THE TRUSTEES Resources Expended Total resources expended increased by £351,502 to £1,068,135 due to several large restricted research grants commitments. Research costs We￿ increased by £309,733 on previous year to £402,408 of which £329,515 was restricled. Support costs were increased by £32.563 on previous year lo £545,474 of which £26,998 was restricted. Awareness costs increasgd by £6,341 to £107,598 of which £712 was restricted. Fundraising costs were increased by £2,865 to £12,655. Total funds stand as £2,140,950 compared with £2,010,580 last year. Funds at the yaar*nd were made up of unrestricted funds of £1,801,464 (2023: £1,351,414) and reslricted funds of £339,486 (2023: £659,166). Contlngent Asset During the year the charity was notified of a significant legacy of which Myaware is the sole beneficiary of the residual estate. The Truslees have been unable to obtain a reliable estimate of the amount due to Myaware and has Iherefore trealed the legacy as a conlingent asset. The rationale for recognition as a contingent assel is detailed in note 23 on page 42 of Ihese financial statements. Page 19 Myaware Report of the Trus188s and Financial Stal8m8nts for the Year Ended 3181 March 2024 REPORT OF THE TRUSTEES Reserves Policy Reserves are held to ensure that planned and committed expenditure over the next five years can ba met. Unrestricted funds not invested in tangible and intangible fixed assets (the free reserves) are held to meet a minimum of twelve months budgeted expenditure and to enable the charity to fulfil its planned and commilted expenditure over the next five years which are not covered by restricted funds. As of 31 St March 2024, the 12 month's budgeled unrestricted expendilure equates to £766,924 and the free reserves, which amount to £1,799,963 leaving a surplus of £1,033,039 available for future expenditure. The surplus reflects legacies bequeathed. The charity cannot predict its legacy income year on year, and this can vary significantly. The surplus on funds generated is helping to fund our current year. Golng Concern The COVID-19 pandemic has had a negative effect on the charitable sector, and myaware is no exception lo this. The Trustees have set a realistlc budget for 2024125 with a net deficit on unrestricted funds of £450,124. This has been calculated on a reduction in giving and no legacies receivable in the year. Going concern is not considered an Issue as the charity can utillse the surplus on unrestricted funds referred to in the above reserves policy. The liquidity position is monitored by the Iruslees on monthly basis and the charity is continuing to operate within its reserves policy. On this basis the trustees consider the going concern basis for the preparation of these financial statements to b8 appropriate. Principal Funding Sources The charity benefitted during the year from a number of generous legacies amounting in total to £856,054. Donations amounted to £86,887. Evenls fundraising generated £41,463 and In Memoriam donations raised £29.301. Investment Pollcy and Objectives Truslees agree on investments in compliance wilh the Articles of Association. The return on investment for the year was 4.1 % (2023 2.0 % ). If the change in value of investments is included, the return is 5.10/0 (2023 1.6'/D). Note that these figures do not include inlerest eamed on bank current accounts - such interesl is identified in a line item in the notes to the accounts. The Trustees consider these results to be satisfactory in the current investment climate but aim to keep this under regular review. Page 20 Myaware Report of the Twslees and Financial Slatem8nis for th8 Year Ended 31 St March 2024 REPOR T OF THE TRUSTEES Statement of Trustees Responsibllities The Trustees (who are also the directors of Myaware Company Limited by Guarantee for the purpos8s of company law) are responsible for preparing the Report of the Trustees and Ihe financial statements in accordance with Ihe applicable law and Uniled 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. Company law requires the Trustees to prepare financial ststements for each financial year which give a Irue and fair view of the state of affairs of the charitable company and of the incoming resources and application resourGes, including the inGome and expendilure of the charitable company for that period. In preparing those financial staternents, the trustees are required to: Select suitable accounting policies and they apply them consistently. Observe the methods and principles in the Charity SORP. Make judgements and estimates that are reasonable and prudent. Prepare the financial statements on the going concern basis unless it is inappropriate to presume Ihat the charitable company will continue in business. The Trustees are ￿spOnsible for keeping proper accounting records which disclose with reasonable accuracy at any time the financial position of Ihe charitable company and to enable them to ensure thal the financial slatements comply with the Companies Act 2006, The Charities and Trustees Investment Act (Scotland) 2005 and The Charities Accounts (Scotland) Regulations 2006 (as amended). They are also responsible for safeguarding the assets of the charitable company and henc8 for taking reasonable steps for the prevention and detection of fraud and other irregularities. In so far as the Trustees are aware: There is no relevant audit information of whlch the charltable company's auditors are unawara; and The Truslees have taken all steps that they ought to have laken to make themselves aware of any relevant audit information and to establish that the auditors are aware of that information. The Trustees are responsible for Ihe maintenance and integrity of the corporate and financial information included on the charitable company's website. Legislation in the United Kingdom governing the preparation and dissemination of financial statements may differ from legislation in other jurisdictions. The report has been prepared in accordance with the special provisions of Part 15 of the Companies Act 2006 relating lo small companies. ON BEHALF OF THE BOARD.. Mr Trevor Ranson, Chair of the Board of Trustees DATE.. 24 January 2025 Page 21 REPORT OF THE INDEPENDENT AUDITORS TO THE TRUSTEES AND MEMBERS OF MYAWARE Oplnlon W8 hav8 audited the financial slataments of Myaware {Ihe 'charitable company,) for the year ended 31 March 2024 which comprise the Statement of Financial Activities. the Balance She8t, tha Cash Flow Statem8nl and notes to the rinan¢ial ststemenls, including a summary of significant accounting policies. The financial reporting framework that has been applled in their preparation is appli¢able law and United Kin9Jom AGGounling Stsndards (United Kingdom Generally Accepted AccountirvJ Practice), including F•nanc4al R8POrting Standard 102 The Financial Reporting Standard applicabl8 In th8 UK and Republic of Ireland.. In our opinion the financial statements: give a true and fair view of the state of the charitable company's affair8 as al 31 March 2024 and of Its incoming re$our¢es and applicalion of resources, including ils income and expendI￿re, for the year then ended., have been properly prepared in accordance with Unit8d Kingdom G8n8rally Accep18d Accounting Practice. includlng Financial R8PDrtlng Slandard 102 The Financial Reporting Standard applicable in the UK and Republic of Ireland,: and hav8 been prepared In accordance wlth the requiremenls of the Companies Act 2006, the Charilies and Truslee Investment {Scoiland) Act 2005 and Regulation 8 of the Charlties Accounts (Scotland) Regulatlons 2006. 8asls for oplnlon We conducted our audit in accordance wilh International Standards on Auditing (UK) (ISAS (UK)) and applicable law. Our responslbllllles under Iho88 Standards a￿ further de$¢ribed in the Auditors. responsibilities for the audit of the financial statements section of our r8POrt. We are Independent of the chadlable company In accordance wllh the ethical requirements Ihal are relevanl to our audit of Ihe financial statements In the UK. including the FRC'S Ethical Standard, and we have fulfilled our other ethical responsibilit18s in 8cGoTdan¢e wlth these roqulrements. We belleve thal the audlt evldenca we have obtalned is Sufficient and appropriate to provide a basis for our opinion. Concluslons relatlng to golng concam In auditing the financial statements, we have concluded that the trustees, u88 of th8 golng concem bas18 of accounllng in the preparation ol the finarKial stalernents is appropriate. Based on Ihe work we have perfomled. we have not Identified any mateiial uncertalntles relatlng to events or condilions that, individually or collectively, may casl slgnlllcant doubt on the charitabl8 company's ablllty lo contlnue 88 a going concern for a period of at least twelve months from when the financial statements ar8 authorised for issue. Our responsibilities and the responslbllltles of the tnjstees wlth r88P8¢t to going concem are d8scrlbed In the relevant sections of this report, Other Informatlon Th8 trusl88s ar8 responsible for th8 olher Informatlon. The olhèr information ¢omprlse8 thè infornation Included in the Annual Report, other than the flnanclal 8tal8ments and our Report of the Independent Auditors th8r80n. Our opinlon on the financial Statements does riot cover the other information and, excep( to the extent otherwise explicltly slated In our report, we do not expre88 any fom of assurance concluslon thereon. In connection with our audit of th8 financial statements, our responslblllty Is to read th8 Other Infom1811on and, In doing 80, consider whether the other infornation is materially Irv￿nsIstenI with the financial statements, or our knO￿edge obtaln8d In the audll or olhewlse app8ars to be materially misststed. If we idenlify su¢h material inconsistencies or apparent material ml8Statements, we are required to determine whelher this gives rise to a malerial misstalement in the financial statements themselves. If, based on the work we have performed. we conclude that there Is a malerial misstatement of this other information, we ale required to report that f8cI. We have nothing to r8POrt in this regard. Oplnlon8 on other mattèrs pros¢rlbod by tho Companles Act 2006 In our oplnion, based on the work undortaken in the course of Ihe audit- the information given in the Report of the Trustees for the financial year for which the financlal stslements are prepared is consistent with the financial slatements,. and the Report of the Trustees has been prepared in accordance wilh applicable legal requirements. Page 22 REPORT OF THE INDEPENDENT AUDITORS TO THE TRUSTEES AND MEMBERS OF MYAWARE Matters on which are requlred to roport by excepllon In the light of the kn￿edge and understanding of the charitable company and its envlronmant obtaln8d In the course of the audit. have not identsfied material missiaternent5 in the Report of Ihe Trustees. We have nolhing to report in respect of the following matters Whe￿ the Companies AGI 2006 and Ihe Charities Accounts (Scotland) Regulatsons 2006 (as amended) requires us to report lo you if, In our oplnion: adequate and proper accounting records hav8 not been kept Dr retums adequate for our audit have not been received from branches nol visited by us., or the financl81 statements are not in agreement wlth the accounting r8cords and retums; or certaSn dlsclosures of truslees. ￿Muneration specified by law are nol made: or we have not recelvod all the Information and explanations we require for our audit: or the trustees were not entitled to take advantage of the small companies, exemption frorn Ihe requirement to prepare a Stralegic Report or in preparing the Report of the Trustees. Responslblllt108 of truslaes As explaSned more fully in the Statement of Trustees, R&sponsibililies, the truste88 are responslbla for the praparation of th8 financial statem8nls and for bèlng sallsfied that they give a true and fair view, and for such internal control as the trustee$ determine is necessary lo enable tha preparalion of financial stslemenls Ihat are f￿e from material misstatemenl, whelher due to fraud or error. In preparing the financial Statements. the twslees are responsible for assessing the charltable company's ability to continue as a going concern, d18closlng. as applicable, matters relal8d to going concern and using the going concern basi8 of accounting unless the trustees either intend to liqui(Sat8 th8 charitable company or lo cease operations, or have no realistsc alternativ8 but to do so. Pag8 23 REPORT OF THE INDEPENDENT AUDITORS TO THE TRUSTEES AND MEMBERS OF MYAWARE Our responslbllltle8 for the audlt of the flnancial 81atemenls Our obj8CtIv8s ar6 lo oblaln reasonable assuran¢e 81)out whether the financial statements as a ￿01@ are free from malerial misststemenl, wh8lh8r du8 to fraud or error, and to issue a Report of the Independent Auditors that includes our Oplnion. Reasonable assurance is a hlgh level of assurance but is not a guarantee that an audit conducted in accordance wlth ISAS {UKI will always detect a material m•sstatement when il exists. Misstatements can arise from fraud or error and are consldered materlal If, Indivldually or In th8 aggregate. th8y could reasonably be expected to inlluence the economic dec18ions of users taken on the basis of the88 financial statemants. Th8 extent to whlch our p￿￿edureS ar8 capable of detscling Irwularilies. including fraud is detsiled below: Irregulan'lies, InGluding fraud. are Instances of nonThcompllance wlth laws and regulations. We design procedur8s in line with our responsibllitie8, oulli1￿ above, to detect rnal8rlal mlsstatements Sn respect of Irregularilles. including fraud. B￿aUSe of the inherent limitations of an audit, ther8 Is a risk thal wlll not detect all Irregularlties. Including those leading lo a materlal mlsstatemenl *) the financial statements or non-compliance with regulation. Thls risk Increases the more that compliance wilh a law or regulation 18 removed from the events and Iransactions reflected in the financlal 8talements. as we will be less likely to become aware of Instances of non-compliance. The risk is also greater fegarding Irregularities occuthng due to fra￿1 rather Ihan error, as fraud Involves Intentional concealment, forgery. collusion, omisslon or mlsrepresenialion. In idenlifylng and assessing th8 rtsks of material mis$latemenl in respect of irregularili&s, including fraud and non-¢omplian¢e with laws and regulalions, considered the followlng: -The nature and control envlronment of the charftable company -our di8cus8lons with management and govemance Includlng whether they had knowledge of any actual. susp8Ct8d or alleged Iraud -The Internal controls to mltlgat8 Ihe risks of fraud Following Our revlew, we have Identlfled the following area$ whi¢h are d9emed lo have the hwhest potential for fraud or material misstatement withln th8 financial st8l8ments'. - The timing of revenua recognltlon - The 8valualion of estlma18s In re8P8Ct of18gacles - The ¢offe¢t idenlifKalion of restricted funds - The Ilming and recognition of committed expenditure - The risk of management overrlde We also considered any laws and regu1811ons that w￿re cènlral to the operation of the charitsble company induding company law, ch8rity law, employment law and health and salety. The following procedure8 were undertaken in respeGt of the risks where we identified the potenllal for maierlal misstatement- Income frorn donalions and legacles was considered a risk due to the volume and nature of thes8 transactlons. Income may be pledgad bul tharè may be a timing differ8nc8 be￿88n commStrnent and recelpt. Th8 Overall Income of the charitable company could be mat8rlally underslated. Income transactlon t8sling was perfomed to ensure completeness of Income. Post year end donatlons and legacles were revlewed to ensure thal income was recognised in the correct accountlng period In accordance wlth the charitable company's accounting pollcy. In ￿Spect of legaeies, we also tested the accuracy of estlmatas by r8vi8wlng correspondencè obtalned from solicitors and executors whSch Included the wills and ststemenls of assets and Ilabilities of the deceased person's estste and where posslble agreed to rèceipis after date. Restricted funds in respect of income were iesled to donor correspondence lo ensure that the reslriclions imposed w8re adhered to by the charitable company in expending those funds. This included vouching a sample of expènditure. In addition, wè tested unrestricted income mindful of any non-recognlllon of r8strlct8d funds. Page 24 REPORT OF THE INDEPENDENT AUDITORS TO THE TRUSTEES AND MEMBERS OF MYAWARE The testing of commltted expenditure In relation to granls award8d by the charflable company in respect of research was tested by obtaining copies of the fom)al grant offer and agreeing the lenns to the credltor provlslon in the financial statements. TNstee$' l)oard meetirrfJ minutes were reviewed, and all commitments noted in the year were agreed lo the financial statements to ensure completeness. A samp18 of journal 8nlrles were 18Sted for appropriateness and enquiries made of manag8ment as lo the procedures in place for posting joumal entries. Dunng our audli we consldered any large, unusual journals or Iransa¢tions outside the nom)al course of buslness which were highlighlad as 8 r8suIt of our testing. We revlewed the minute8 of trustees. board meelings and controls put Sn place by the board of trustees including a review of Ihelr rf8k assessment. At the planning slag8 W8 discussed wlth managèment any law$ and regulalion8 which were ¢entral lo the operation of Ihe charitable company. The financlal Statements were reviewed alongside our disclosure checklists to identlfy any unusual or unexpected relationships or any areas of non. Golng concorn The Irustees regularly monitor the charity's reserves policy and rfsk a8se88rnent. A reallstlc budget for 2024125 ha8 been prepared. Llquid funds and cash now are monitored on a monthly basis. To date. no matedal unc8rtalntle8 exist that would affect the pr8paralion of th8 financial slat8m8nts on a going conc8m basis. Slgnlflcant Judgements and estlmates The following judgements {apart from those involving estimates) have been Made in the process of applylng the Charitable ¢ompany'8 a¢counting policies that have had the most signlficant effect on arnounts recognlsed In the nanclal Ststements: Legacies when calculating amounts due on legacies, man4em8nl conslders the wllls of th8 daceased, executots accounts and nolificalions received from executor8. At 31 March 2024 there is a legacy debtor, Included In other deblors, of £779,560. Grant$ - when calculating granl C¢NDmilments, rnanagemenl conslders the nature of the grants as being withln the charity's obieclives and the possible future benefils for people affected by myaslhenia, Income All income is recognised in the Stal8ment of Finandal Actlvlll88 once the charlty ha8 8ntlllemenl to the fiJnd8, It Is probable that the income will be received, and the amount can be measured reliably, Donated servlces and goods are recognised as Income when the charity has control over Ihem, the economic benefit is probable and can be measured rellably. In accordancè wilh tha Charfti88 SORP {FRS102), Ihe volunteer lime of Support Groups 18 not recognised. Infomialion about their contribulion is provided In the Trustees. Annual Report. For donattons to be recognlsed ihe charlty wlll have been notified of the amounts and the settlement date. If there are conditions attached lo Ihe donation and this requires a level of perforynance before entltlemenl can be obtained, then income is def8rr8d until Ihos8 condllions ar8 fully met or the fulfilmanl of those condltions Is wlthin the control of Ihe charity. and11 is probable Ihat they will be fuffilled. For legacies, enliuement is the earfier of the charlty belng nollfied of an impendlng distrlbutlon or the legacy being reGei¥ed. At this point income is recogn16ed. Income from trading actlvilies includes Income earned fr(Kn fundraising events and trading activilies lo raise funds for th8 charity. Income Is receSved in exchange for supplying go¢xls and services In order to ral8a funds and is recognised when enlillement has occurred. Investment income is earned Ihrough holding assets for investfflent purposes such as share5 and bank deposit accounts.11 includes dividends and interest. It 18 included when the amount can be measured reliably. Page 30 MYAWARE NOTES TO THE FINANCIAL STATEMENTS- continued FOR THE YEAR ENDED 31 MARCH 2024 ACCOUNTING POLICIES - conilnu•d Incom• - contlnued Govemment grant5 aTe recognised at the fair value of the asset recelved Dr receivable when there Is reasonable assurance that the charity will compty with conditions attaching to them and the grants will be rec8iV8d uslng the accrual model. Deblors Other debtors are recognlsed at the settlement amount due. Prepayments are valued at the amount prepaid. Expendlturn Llabllitles are reco9ni$ed as exp8ndltur8 as soon as there is a lega or constructive obligatlon commltting the chanty to thal expendilute. 11 is probable that a transfer of economic benofits will bg required in settlement and Ihe amount of the obllgation can be measured reliably. Expenditure Is accounted for on an a¢cruals basis and has been classified under headlngs Ihat aggregate all cost related to the category. Where costs cannot b8 dlre¢tly attrfbuled to Particular headings, they hav8 b88n allocai8d to actlvltles on a basis consistenl with the use of resources. Irrecoverable VAT Is charged as a ¢o$l against the actlvity for vthlch the expendilure was incurred. Allocatlon and apportlonmont of support and govomanc• Resource8 expended ar8 allocated to the particular acbvity where Ihe cosl relates dlr8Ctly to Ihal activity. However, the cost of overall dir8Ctlon and admlnlstralSon on each acb'vty, including the salary and overhead costs of th8 general offlce and regional staff, Is 8PPOrtSoned on the following bases which are an estsmale, based on staff ts'm8, of Ihe amount attributable to each activity: Percentag• allocatlon 11./0 74% 15% Research Support Awareness Intanglbl• flx•d a•8•18 Amortisation Is calculated so as to write off the cost of an asset, less Its e8ilmated residual value, over the useful 8conoml¢ Ilfe of that asset as follows: Computer 8ofvare - over 3 years straight Ilne T8nglbl• flx•d a880ts D8pr8clatlon Is provided at the following annual rate8 in order to write off each asset over its eslirnaled usefvl Ilfe. Fixtures and flttlngs Computer equipment 20% on cost 33Yo on co81 Tanglbl& fixed assets are stated at cost or deemed costs less accumulatsd depreciation. Cost Sncludes cos18 directly attrfbutabl8 to making the asset capable of operallng as intended. Individual fixed assets cosb'ng £500 or more are ¢apltsll8ed al cosL Investments Investments ar8 valued at market value which is deemed to be falr value. Movements in markgt value are reflected in the statement ol flnanclal actsvits'es as a net ga1￿(lo$s). Stocks Stocks are valued al the lower of cost and nel realisable value. after making due allowanc8 for obso18te and slow moving ilerns. Stock 1$ valued on a first in first out basls. Page 31 MYAWARE NOTES TO THE FINANCIAL STATEMENTS- continued FOR THE YEAR ENDED 31 MARCH 2024 ACCOUNTING POLICIES . contlnued Taxatlon The charfty Is exempt from o)rporation tax on its chariiable aclivltles. Fund a¢¢ountlng The chartlable company has both restNcted and unfestricied funds. All funds are used to benefit and promole its charitable objects. Restricted funds are those donated for use in a partkular area or for specific purposes, the use of whlch is restncted to that area or pU￿oSe and the restrktlon means that the funds can only be used for specific projects or activities. When donors Specify that donatlons and grants aTr for parttcular purwses which do not amount lo pre-condition8 regarding èntilbmant. Ihls Incomè Is included In incoming resources of r8slrScted fvnds when receivable. The relevant expendllure18 then malched as raslri¢ted expenditu￿. Unreslricled fund5 are general funds thal are available for use at the trustees, discretion In furtherance of any objectlves of the charity. Designated funds ara unrestricted fund8 set aside at Ihe discretion of Ihe trnstees for speclflc purpose8. Penslon costs and olher post-retlremont benollts The Gharilable company operate5 a defined contributlon pension scheme. Contriljutions payable lo the antable company's penson Scheme are charged to the Statement of Flnancial Actlvilies In the peflod to which they relate. Oporatlng l•a8e agreements Renta18 appllcable lo operaliryj leases where substantially all ol the benefits and risks of ownership remain wilh Ihe lessor are charged to Ihe SOFA on a slraighl line basis over the period of the leas8. Reserve8 The chantabl8 company maintains a level of reserves requir8d lo fulfil its obje¢tive$. The tru$tee8 monitor re8eNes at ￿gUlar meètings. Flnanclal In8trument8 FinanGial instruments are classified and accounted for, according lo (he substance of the contraclual arrangement. as either financial assets. financial liabilities or equity instruments. An equlty Instrument Is any contract that evldences a resldual Interest In the asset6 of the company after deducllng all of its liabilities. DONATIONS AND LEGACIES 2024 2023 Donations Legacies In Memoriam 88,887 856,054 85,679 63,470 972 242 184.077 The Gharity benefit5 greatly from the involvement of many helpers and volunteers, details of which are given in our annual report. In ac￿rdanCe with FRS102 and the Charities SORP {FRS1021, the economic conlribulion of volunteers is not recognised in these financial stslements. Page 32 MYAWARE NOTES TO THE FINANCIAL STATEMENTS. continued FOR THE YEAR ENDED 31 MARCH 2024 OTHER TRADING ACTIVITIES 2024 2023 Affinty programmes Appeals Colle¢ti¢)n$ Corporate Grants Lotterfes Natsonal ev8nts Regional events Sales of merchandise Trusts 2,069 11,782 2,825 4,946 31,629 3,147 15,063 26,400 4,375 2.739 6,678 1,497 3,875 {3,838) 3.114 24.033 27,367 3.700 119736 101.505 During th8 2022 year management Implem8nl8d changes to the charlV8 fundralslng structure. This restructure was an outcome of Covid and Myaware's inabilty to conlSnue to provide face to face support services. The regional fundraising slruclure was deemed unfil for current and future purpose and a new national fundraising team stN¢lure was implemented. As a result of this. cert81n restrlcted grants applled for on 8 regional ba&s In prevlous years were repald 8S the crlteda for Ihe grants could no longèr be met. Thls a180 alfected the 2023 year. INVESTMENT INCOME 2024 2023 Deposit aGcounl interest Current arxounl interest Dlvidends on shares and other Investments 76,893 3,234 33.771 3,fj20 6,471 RAISING FUNDS Ralslng donatlon8 and legacl•8 2024 2023 erchandise Evenis App8al mailings Lottery 3,308 6,454 1,331 2,910 4,250 1,150 9,790 Page 33 MYAWARE NOTES TO THE FINANCIAL STATEMENTS- continued FOR THE YEAR ENDED 31 MARCH 2024 CHARITABLE ACTIVITIES COSTS Direct Costs (see note 8) Support costs (see note 9) Totals Research Support Awareness 383,040 415,169 19,368 130,305 402,408 545,474 107 598 879 393 176087 1,055,480 DIRECT COSTS OF CHARITABLE ACTIVITIES 2024 2023 staff costs Medical res8arch Medical care Travel and mlscellaneous MyN8ws & mambèr communlcatlons Meetings and conferencos 520,898 317,424 7,882 28.626 3.669 489,872 18,981 2,245 20,970 3.768 879 393 536.892 Grants payable durlng the year were as follows.. 2024 2023 Commllmenls a8 al 1 Aprtl 2023 Commitments made In the year Commllmenls r81eased In the y8ar Grants pald during the year 356.612 316,970 500,446 18,981 (168,071) (162.815) Commltmenls as at 31 March 2024 505511 356612 SUPPORT COSTS Govemance costs Manag8m8nt Totals Research Support Awareness 17,239 115,982 2,129 14,323 19,368 130,305 150 732 176087 Page 34 MYAWARE NOTES TO THE FINANCIAL STATEMENTS- continued FOR THE YEAR ENDED 31 MARCH 2024 SUPPORT COSTS. contlnued Support costs, included in the above. are as follows: Managom•nt 2024 Total actlvltles 2023 Total activltlas Research Support AwaTrne$s Rental of premises Utilltses and insurance Office equipment Prlnting, posts￿ and slatsonery Pholocopier costs Support website IT support & soffyvare H R costs Ganaral 8XP8nses 8ank charges Amorlisatson of intangibl8 fixed assets Depreclallon of tanglble and hedtage assets 1,644 2,023 307 11,062 13,609 2,067 2,242 2,759 419 14,948 18,391 2,793 15.500 17,339 2,860 1.057 91 2,748 5,902 2,119 835 138 7,106 811 18,473 39,706 14,208 4,270 914 1,440 123 3,745 8,049 2,894 866 185 9.603 825 24,984 53,657 19,281 5,771 1,235 8,994 910 21,418 49,053 15,145 7,900 1,372 333 2,237 453 3,023 4,686 246 336 115982 158,732 147,465 Gov•mance cos18 2024 Total actlvltles 2023 Total a¢livitie$ R8S8arch Support Awar8nass Trustees. expenses Audllors. remuneration Le9al and profession81 fees 499 969 3,357 6,520 681 1,321 901 4,537 8,810 1,809 8,965 10. NET INCOMEI(EXPENDITURE) Nel Incomel(expenditure) is ststed after chargingl(crediting); 2024 2023 Audilors, remuneration DepreCiat￿n - owned assets Computer Software amortlsatlon 8,810 2,241 8,965 2,288 4,686 Page 35 MYAWARE NOTES TO THE FINANCIAL STATEMENTS. continued FOR THE YEAR ENDED 31 MARCH 2024 11. TRUSTEES. REMUNERATION AND BENEFITS There were no Irust8es' remuneralion or other benefits for the year endéd 31 March 2024 nor for th8 year ended 31 March 2023. Tru8tees' expense8 2024 2023 Trustees, expenses 1,809 Dunng the year 4 Irustees (2023.- 2) received reimbursement of thelr expenses for attending meetings tolalllng £497 (2023". £3601. The charge for 2024 Include8 accommodation for trustee meetings of £1.27712023.' £981) and tNstee cours8s of £2,763 (2023. £468). 12. STAFF COSTS 2024 2023 Wages and salarles Soclal 88cudty costs Other pension costs 456,502 37,158 431.117 34.059 24.696 520 898 489 872 The average number of full Ilme equlvalent employees durlng Ihe year was 13 {2023: 131. The average monthly number of employe88 during the year was as follows: 2024 13 2023 Fundraising, support and aw8renes$ Management and operations of Ihe Charity 17 17 The number of employees whose employe8 beneflls (excludlng employer penslon costs) exceeded £60,000 was.. 2024 2023 £60.001- £70.000 Wages and salaries include redundancy costs of £ nil <2023., £8,328). The key management personnel of the charity compris8s Ihe Chief Executiv8 Off￿er. The total employee benefits of the key managament personnel of the charity amounted to £74.658. including pen$lon conlribulions (2023: £70,396). Page 36 MYAWARE NOTES TO THE FINANCIAL STATEMENTS- contlnued FOR THE YEAR ENDED 31 MARCH 2024 13. COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES Unrestricted fund Restricted funds Total funds INCOME AND ENDOWMENTS FROM Donatlons and legacles 176,917 7,160 184,077 Other tradlng adivilies Investment Income 98,703 43,862 2,802 101,505 43,862 Total EXPENDITURE ON Ralsing funds 9,7 9,790 Charltablo actlvltles R8search Support Awareness 77.326 500.767 99.658 15,349 12,144 1,599 92,675 512,911 101,257 Total 687,541 716,633 Net gainsl{losses) on investments NET INCOMEI(EXPENDITURE) (376,583> (19,130> (395,713) RECONCILIATION OF FUNDS Total funds broughl forward 1.727,997 678,296 2,406,293 TOTAL FUNDS CARRIED FORWARD 1,351414 659,166 2,010 580 14. INTANGIBLE FixeD ASSETS Computer So￿re COST At 1 April 2023 and 31 March 2024 95,007 AMORTISATION At 1 Aprll 2023 Charge for year 91,984 At 31 MarGh 2024 NET BOOK VALUE At 31 March 2024 Al 31 March 2023 3.023 Page 37 MYAWARE NOTES TO THE FINANCIAL STATEMENTS- contlnued FOR THE YEAR ENDED 31 MARCH 2024 15. TANGIBLE FIXED ASSETS Fixtures and fittiryJs Computer equipment Totals COST Al 1 Apnl 2023 Additions Disposals 13,247 45,208 2,000 31701) 58,455 2.000 39 472) At 31 March 2024 DEPRECIATION At 1 April 2023 Charge for year Eliminated on disposal 13.247 43,466 2,241 31701) 56,713 2,241 39 472) At 31 March 2024 NET BOOK VALUE At 31 March 2024 Al 31 March 2023 16. FIXED ASSET INVESTMENTS Listed Investm8nl8 MARKET VALUE At 1 Aprll 2023 Revaluatlons 221,273 At 31 March 2024 241379 NET BOOK VALUE At 31 March 2024 241379 At 31 March 2023 221.273 There were no investment assets oulsida the UK. Cost or valuation at 31 March 2024 Is repr8sented by.. Llstod Investments Valuallon In 2022 Valuation in 2023 Valuation in 2024 229,797 18,524) 241379 Page 38 MYAWARE NOTES TO THE FINANCIAL STATEMENTS- contlnued FOR THE YEAR ENDED 31 MARCH 2024 17. STOCKS 2024 2023 Finished goods DEBTORS: AMOUNTS FALLING DUE WITHIN ONE YEAR 2024 2023 Other debtors Pr8paym8nts and accrued income 807,264 84.243 32,464 116,707 CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR 2024 2023 Other creditors Cornrnitted grants Accruals and deferred Income 28,007 202,079 3.964 239,293 252.596 20. CREDITORS: AMOIINTS FALLING DUE AFTER MORE THAN ONE YEAR 2024 2023 Committed grants 303 432 117319 21. MOVEMENT IN FUNDS Net movement In funds At 3113124 At 114123 Unrestrlctad funds General fund 1,351,414 450,050 1,801,464 ReGlrlct•d lund8 Research Support Awareness 563,262 93,758 1311,993) {26,617) 251,269 67,141 659 166 319 680) 339 488 TOTAL FUNDS 2 010 580 130 370 2 140 950 Page 39 MYAWARE NOTES TO THE FINANCIAL STATEMENTS- continued FOR THE YEAR ENDED 31 MARCH 2024 21. MOVEMENT IN FUNDS - contlnued Nel movement in fvnds. included in the above are as follows: Incoming resources Resources expended Gains and losses Movement in funds Unre$lrlcled fund8 General fund 1,140,855 (710,910) 20,105 450,050 Restrl¢ted funds Research Support Awarene$$ 17,522 (329,515 381 (26,9981 19642 ￿712) (311,993) {26,617) 37,545 357 225) 319 6801 TOTAL FUNDS 1178 400 1068 135) 130 370 Comparatlves for movement In fund8 Net movemenl in funds At 3113123 Al 114r22 Unr•8trlcl•d funds General fund 1,727.997 (376,583) 1.351,414 Reitrlctod funds Re$ear¢h Support Awareness 572,818 101,733 3,745 (9,556) {7,975) 563,262 93,758 2,146 678,296 19 1301 659 166 TOTAL FUNDS 2,406.293 395,713) 2.010 580 Comparat￿8 nel movement In funds. included In the above are as follows: Incomlng resources Resource8 exponded Gains and losses Movement in funds Unre$trl¢t•d funds General fund 319.482 {687.541) {8,524) (376,583) Restrlcted fund8 Research Support Awareness 5.793 4.169 (15,349) {12,144) {9.556) (7.975) 29.092) 19 1301 TOTAL FUNDS 329,444 716,6331 8,524) 395,713) Page 40 MYAWARE NOTES TO THE FINANCIAL STATEMENTS- continued FOR THE YEAR ENDED 31 MARCH 2024 21. MOVEMENT IN FUNDS - contlnued Restrlcted funds Restricted funds comprise: Rosoarch Restrlcted funds In this cla88 wlll be applled to: Sclantlflc and cllnlcal research Into th8 causes, dlseasa mechanlsms. diagnosls and epidemlology of Myasthenia Gravis. Lambert.Eaton Myaslhenlc Syndrome, Congenital Myasthenic Syndrome and other simllar disorders of the Neuro-muscular Junction, b. The provislon of equipment and facilities lo support (a). c. Provlslon of sp8clallsl medlcal facllltles Ilncludlng staffj vA)ere the Trustees conslder that such provislon has 8 8ignlficant Impact on the effectlv8ness of (a). Support Restricted funds in this cla8s will be applied to.. d. Development of new supwrt groups ol ihe charity, to foster Ihe hèalth and v4elfar8 of mya8thanlc8 and thelr families and carers. e. Organisallon of Reglonal Conferences lo encourage mutual support ba￿en members, myaslhenlcs, and support groups. f, In exceplional circumstances - provlsion of specialist m8dic81 facllilies (including staffj where Ihe Trustees consider that such provision would have a major Impact on the health and welfare of myasthenics. and altemative hjnding cannot ba obtsined. Awaron¢88 Restricted lunds In this class will b8 8ppll8d to= g. Preparallon, publlcallon and dlstributson of infomation aboul My8$lh8nia Gravi$, Lambert-Eaton Myasthanic Syndrome. Congenital Myasthenlc Syndrome and olhgr slmllar dlsorders of the Neuro-muscular Junction. (Including Inforniation on thelr causes, dlagnosls and treatment, and Issues concemlng the lifestyle and quality-of-life of palients wilh Ih85e disorders). Publication and distribution indude development and maintenance of the association's intemet website$. h. Publicity and promotion of events to foster awareness, in the general public, national and local government. and other bodies, of. these disorders, and the problems exp8rienc8d by patients and their families and carers, l. Aclivltles to foster awareness In the medical profe88lon of these dl8orders. and the problems experfenced by palienls and their families and carers. j. Activities to foster awareness in the medical prof@ssion of the currenl stale of best medical practi￿ in Ihe diagnosls and tr8atrnent of th888 disorders. k. Reglonal and national events to dissemlnate Inf0M￿tIOn about triese dlsordern lo myasthenics, their famllies and carers (including infonnation about current and planned future medical and scientific researth). For presentalion purposes all restricted Income receivable Is allocated lo one of the above three categorfes that bast descrfb88 Its restrktlon. A detailed breakdown of the income arKI expenditure alloGaled to these Gategories is available on ￿qUest. Page 41 MYAWARE NOTES TO THE FINANCIAL STATEMENTS- continued FOR THE YEAR ENDED 31 MARCH 2024 22. EMPLOYEE BENEFIT OBLIGATIONS The tolal ¢onthbut•on paid to Personal Pension Plans in the year for certain employees amounted to £27.238 (2023.. £24,696). 23. CONTINGENT ASSET DurifVJ the year Ihe charty was notlfied of a sonifi¢ant unrestricled legacy of vthich Myaware is the sole beneficiary of the residual estate. Probate was granted on 21 November 2023. Initial reports indlcated that the net estsle at date ol death amounted to £6,953,855, wilh a residual valu8 to th8 charity of around £3.5m. The residual value due to Myaware is after specAfi¢ bequesls to beneficiaries Including propety and chattels whlch ara granted free of inheritance tax. Th8 trustees recognise the charity's entiuemenl to the legacy but there Is uncertainty as to the amount of payment due to Myaware In respect of Its re8ldual inter86t in the estate. This uncertainty arises du8 to.. No infomiation has been received from the executors, solicitors fegardlng th8 realisalion of Ihe estate which would provide us with a reasonable estlmate of the residuary amount due to the charfty. No di8lribulions on account have been received to date. - We have not received notlfication that the inherilance tax liability has been 8ettlad on the specific bequesis. The estate at dale of death Includes a li8ted shares portfolio ol around £5.3m. The Ilmlng of th8 reallsation of thls portfolio Could hava a significant 8ffect on the valu8 to be dislribuled. After due conslderatlon, Ihe trustee8 are of the oplnion that Ihe Interest of the charity in this significanl residual legacy cannot be Measured reliably and therefore should b8 disclosed as a contlngènl assel until the crileria for income recoonits'on are met. 24. OTHER FINANCIAL COMMITMENTS At Ihe year end the charity had financlal commrtments in respect of renl amounting to £14,049 (2023: £14,049) and other leases amounllng to £2.904 (2023,, £2,904). 25. RELATED PARTY DISCLOSURES Ourlng the year the charity paid a salary, benefits 8nd 8XP8n888 ￿1mbur$ement totalling £21,585 (2023: £21,378) lo an employee who is Ihe spouse of a trustee, 20. ULTIMATE CONTROLLING PARTY The charity Is controlled by its Board of Trusl88s. Page 42