awarp Fighting Myasthenia Together Report of the Trustees and Financial Statements For the Year Ended 31st March 2025 202 2025 Myaware is a Registered Charity No. England & Wales 1046443. Scotland SC044744. Company Limited by Guarantee No. 3038358 (England & Wales)
Myaware Report of the Trustees and Financial Statements for the Year Ended 31st March 2025 Contents Page Chair's Report CEO'S Report Report of the Trustees Objectives and Activities of the Charity Achievement and Performance Future Developments Reference and Administrative Details Structure Governance & Management Financial Review Statement of Trustees Responsibilities Report of the Independent Auditors Stalemenl of Financial Activities Balance Sheet Cash Flow Statement Notes to the Cash Flow Statement Notes to the Financial Statements 19 20 21 23 25 26 30 31 32 33 3446
Myaware Report of the Trustees and Financial Slalemenls for the Year Ended 31 $t March 2025 Chair's Re ort As I write my final report as Chair of myaware, l am filled with immense pride and gratitude for all that we have achieved together. Myaware's mission, to support everyone affected by Myasthenia, empower our community, and drive progress through research and advocacy, remains as vital as ever. It has been a privilege to wilness the strength, resilience, and generosity of our members, stjpporters, and partners over the years. This year, we have continued to build on our national support model, ensuring that every person living with a Myasthenia condition, wherever they are in the UK. can access the information, advice, and community they need. Our online support sessions, telephone helpline, and dedicated social media groups have remained lifelines for many, providing connection and reassurance in challenging times. We have further strenglhened our welfare benefits and advice service, helping members navigate complex systems and secure the support they deserve. Our commilment to funding and championing high-quality research has continued, with new partnerships and projects launched to deepen understanding of Myasthenia and accelerate progress towards better treatments and, ultimately, a cure. Throughout the year, we have worked closely with healthcare professionals, academic partners, and industry stakeholders to ensure that the voices and experiences of people living with Myasthenia are heard and valued. Together, we have advocated for improved access to care, greater awareness, and meaningful policy change. None of this would be possible without the unwavering support of our donors, fundraisers, corporate partners, trusts, and foundations. Your belief in our mission, and your willingness to stand with us, has enabled myaware to remain a beacon of hope and support for so many. Thank you for your generosity, your expertise, and your trust. These past years have not been without their challenges. The ongoing pressures on health and social care, the cost-of-living crisis. and the lasling impact of the pandemic have tested us all. Yet, time and again, our community has shown remarkable adaptability, Compassion, and determination. l am confident thal myaware will continue to thrive and evolve, guided by these values. As I step down as Chair, I want to express my deepest thanks to the Board of Trustees, our dedicated staff tèam, and every member of the myaware community It has been an honour to serve alongside you. I look forward to seeing myaware continue to grow, innovate, and make a lasting difference in the lives of people wilh Myaslhenia. With heartfelt thanks and best wishes for the future, Trevor Ranson Chair. myaware
Myaware Report of the Trustees and Financial Statements for the Year Ended 3151 March 2025 CEO'S Re ort 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 prevalen and incidence of neuromuscular conditions in the UK between 2000 and 2079, written by lain Carey was published outlining that this data is now estimated al 20,000 people in the UK. In April 2025, myaware recorded a 37.95'kn increase in active membership, rising from 2,746 to 3,788 over the financial year spanning April 2024 to March 2025. Myaware began implementing lifetime memberships effective from January 2024, to ensure that members can continue to access information and support throughout their myasthenia journey, without interruption. Our large increase in membership reflects this. Age Nation 3900 2500 Llrikiioiln • O to 18 191029 301039 JOro49 •501059 •bL?1069 w 7Qto79 801089 •90ro% • jLKI+ I0 Condition 30 ifflo 20 s(x) Unkno¥in Cxiilar Myasthenia Generalised Myastherua En8land 'OlJle5 Laniberr E3iov. M¥asiP*nic Syndrome Scollan NoFthern Ir@laT)d cort8ep.iial Myasrhpnic Syndrome Internation31
Myaware Report of the Trustees and Financial Statements for the Year Ended 31 St March 2025 CEO'S Report- continued Myaware national support seprfices Myaware members have access lo a comprehensive range of online and telephone support services, offering guidance lo individuals and their families from diagnosis onward. In 2024-25, myaware continued to expand and improve ils digital offerings, ensuring members could easily access reliable information, expert advice, and peer support. We mainlained our commitment to a nationally coordinated delivery model, further streamlining seNices across the UK to enhance consistency and accessibilily. Connectin our members online Zoom sessions and webinars Over the past year, we delivered 38 online Zoom sessions, creating opportunities for members to connect, share experiences, and discuss common challenges. These sessions were led by our expert National Support Coordinators and our Benefits and Welfare Officer, who provided compassionate updates on support services, awareness initiatives, and research developments. along with essential guidance on living well with myaslhenia. We also hosted three webinars, building on the success of the previous year. To launch My Awareness Month 2024, Dr. Channa Hewamadduma presented a session on the importance of lifestyle and exercise for individuals with Generalised Myasthenia Gravis. As part of the same awareness initialive, three of Ihe UK'S Myasthenia Specialist Nurses led a 'Frequently Asked Questions, webinar, addressing the most common queries raised by their patients. In anotherwebinar, our Research and Partnerships Manager, Charlotte Campbell. shared the latest findings on lung and bone health in relation to myasthenia. All webinars were facilitated by our dedicated support team. Myaware continues lo offer a diverse range of monthly Zoom sessions tailored to members who are newly diagnosed, as well as peer support sessions for the wider community. We also provide age-specific and condition-specific sessions, alongside new offerings for carers and welfare-related topics. Our goal is to reduce feelings of isolation by supporting members Ihrough the early stages of diagnosis and helping them stay connected with olhers facing similar experiences. We're proud to report that over 1,209 members attended our online sessions this year a nearly 15 % increase from the previous year highlighting the growing impact of our digital support Seices. "Very pleased with session, learnt a lot and when I do these sessions, feel much better knowing that there are other people out there with the same diagnosis but some of a lot worse than l am Lmiich makes me grateful that I have more good days than bad days." These events are very helpful. Discussing MG and its impacts with people who have direct experience of the condition (sufferers AND their partners who also live with Ihis) gives some really helpful insights and knowledge. Thank you all for doing this. "I find them very instmmental in my recovery. I was diagnosed on 29th May 2003 Severe recuffence about 7 months ago. The Myasthenia group now is so different from the 2003 era. l enjoy the Zoom meetings where there are a variety of questions. With the members at heart."
Myaware Report of the Trustees and Financial Statements for the Year Ended 31st March 2025 CEO'S Report- continued Peer support network via social media Myaware currently facilitates and manages six national closed Facebook groups, connecting 1,282 individuals living with myasthenia and their family membefs. This year. we expanded our online peer support netsvork by launching dedicated groups for those affected by Congenilal Myasthenic Syndromes ICMSI and Lambert-Eaton Myaslhenic Syndromes (LEMS), offering these rarer patient communities a safe space lo share experiences and access support. These groups serve as a vital 2417 lifeline. providing peer-to-peer connection, updates from myaware, and answers to frequently asked questions. Our national peer support group is open to all members, regardless of age, location, or type of myasthenia. We also offer tailored groups including.. Myaware Kids- for parents of children diagnosed with any form of myasthenia Young Generation - for members aged 18-39, with discussions focused on education, employment, pregnancy, and other relevant topics Carers Group- newly Introduced this year, offerin9 SUPPOrt and resources for those caring for someone with myasthenia These online communilies play a crucial role in reducing isolation and fostering connection among those affected by myasthenia across the UK. "I have finally been officially diagnosed with CMS and l am in a bit of shock, it is bittersweet for sure . l am so grateful for the myaware Facebook group, it has been such an encouragement" ort offered b the team Telephone and Email, Support and Infomiation Our team are available Monday to Friday 9am to 5pm by telephone and email. Whether members have a question they want answering or want to know more about myaware objectives or services, our dedicated Head Office and the Support Team members are here to help inform and guide our members. Emotional support S8rvice People can have many reactions to myasthenia, and for this reason our National Support Coordinators are here to listen and when needed can help point you to specialist support. "Your response. as always, was extremely helpful, empathetic and kind. I cannot thank you enough. You are a brilliant organisation nin by brilliant individuals. Beneflts and welfare advice service The benefits system is complex, the rules can change, and when living with an unpredictable and sometimes debilitating condition like myasthenia, it can be difficull to find the energy and time to fully research every opportunity to improve your qualily of life. Myaware's dedicated Welfare officer is here to help our members navigate the benefits system and check if they are entitled to any financial assistance, or support relating to transport, employment, or education.
Myaware Report of the Trustees and Financial Slalemenls for the Year Ended 3151 March 2025 CEO'S Report- ¢ontinued Benefits and welfare advice seNice - continued This year myaware has responded to 615 benefits and welfare enquiries. Welfare service enquiries 2024-5 Otheilmlst.39 NHSlso¢lCIr. 19 2C Employmefil.3S B•nOlts.30e ruS#l¢,40 These enquiries were divided among topics like employment, housing, and transport. Almost half of these enquiries were focused on benefits. Like all our support services this advice is available to all members in England, Scotland, Wales, and Northern Ireland. The service is provided by telephone, on the myaware websile and via our Zoom sessions, and is available Monday to Friday, 9am to 5pm. "Thank you so much for this . I really appreciate all the info you provided, especially for the [Council Taxj benefit, which I had been led to believe I couldn't gel any help with. "Thank you again for helping me win Ihis decision, I thought this vwould drag out to years of stress arguing with the DLVP." Website information In an increasingly digital world, the myaware website (found at www m aw8re.or is one of the most useful digital and communication tools the charity has. Our website exists to eslablish and maintain a relationship with the Myasthenia community and a broad range of stakeholders. From April 2024 to March 2025, over 118,000 people visited the myaware website, with 95,000 of them being first-time visitors. On average. each visitor spent over a minute exploring the site. In total, users inleracted with the website more than 1.1 million limes, including reading articles, clicking links, and using support resources. The most popular website pages included. Drugs to Avoid,, 'What is Myasthenia? Support, and 'Ocular Myasthenia'_ all providing essential information and guidance. Most visitors found the site through Google searches, followed by direct visits and referrals from trusted sources like NHS and Facebook. The highest levels of engagement came from users in London. New York, Birmingham, and Edinburgh, showing that myaware continues to reach and support people both in the UK and internationally.
Myaware Report of the Trustees and Financial Statements for the Year Ended 3151 March 2025 CEO'S Report- continued Website infomiation - continued Together, the myaware website and the charity's social media acts as a digital hub enabling us to share the fantastic stories of our members and how they have been empowered to understand theif conditions, have greater say on the treatments and therapies available, and connect with other members who have Myasthenia related conditions via peer-to-peer support. Our website includes lots of helpful information including current research on Myasthenia, drugs to avoid, and places lo 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 lo provide advice and support for members and carer5, to increase awareness in primary and acute medical audiences, as well as the general public, and fund much needed research, enhancing medicines, surgical treatments and therapeutic intetventions. In addition, users can access the charity's annual accounts, online shop, register for support events, and attain membership information. We urge anyone visiting 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 the Myasthenia. Website Accessibility Our website utilises the ReachDesk accessibility loolbar, which ensures visitors can access our content in a way that suits them best. Including texl-to-speech, reading and translation support. Over the course of the year, the ReachDe¢k tool was estimated to be used around 6,444 limes on the myaware website. The most actively used features were speech playback, with approximately 756 uses, and translation tools, used around 252 times, helping visitors listen to content aloud or access it in their preferred language. These figures reflect myaware's ongoing commitment to making its online information accessible, inclusive, and user-friendly for all. Booklets, leaflets and flyers For those who prefer printed materials. myaware offers a comprehensive library of information booklets and leaflets tailored to different audiences. These include resources for individuals living with Myasthenia Gravis, LEMS, Ocular Myasthenia, and Congenital Myasthenia. We also provide specialised guides on Myasthenia and CMS during pregnancy, as well as heallhcare guides for medical professionals, including a dedicated booklet on Ocular Myasthenia. In addition, we produce a range of flyers that promote myaware's services and support offerings. As I conclude this annual report as Interim CEO, I want to express my heartfelt thanks to everyone who makes myaware such a supportive and forward-thinking community. The dedication of our members, volunteers, and staff is evident in every story, statistic, and service described in these pages. l am inspired by the progress we have made together. whether that's welcoming new members, expanding our digital reach, or making our resources more accessible than ever before. Looking ahead, l am excited lo work wilh you all to shape a new strategy that builds on these achievements and ensures myaware continues to be a lifeline for everyone affected by myasthenia. Thank you for your Irust, your engagement, and your commitment to our shared mission. Marc Smith Interim CEO, myaware
Myaware Report of the Trustees and Financial Slalemenls for the Year Ended 31st March 2025 REPORT OF THE TRUSTEES The trustees. who are also directors of the charity for the purposes of the Companies Act 2006, present their report together with the financial statements for the year ending 31st March 2025. These statements are also prepared to meet the requirements of the directors, report and accounts under the Companies Act. The financial statements comply with the Charities Act 2011, the Companies Act 2006, the Charities and Trustee Investment (Scollandl Act 2005, the charity'sArticles ofAssociation, and 'Accounting and Reporting by Charities.. Statement of Recommended Practice, ISORP) applicable to Charities preparing their accounts in accordan with the Financial Reporting Standard applicable in the UK and Republic of Ireland IFRS 1021 (effective 1 January 2019). OBJECTIVES AND ACTIVITIES OF THE CHARITY Myaware exists to support people affected by myasthenia and related conditions, to raise awareness, and to fund research aimed at reducing the impact of these conditions and Itimately finding a cure. Our core support services include: Support and information sessions delivered via Zoom, covering research updates, general support, and benefits and welfare advice. Monthly new member support sessions via Zoom. Condition-specific and age-specific Zoom sessions, including support for children {up to age 181 and young people (ages 18-39}. Information and support available through the myaware website. Social media services, including closed, secure groups for peer support and public pages for information and signposting. Telephone and online welfare and benefits advice servi. We raise vltal awareness of myasthenia by: Representing our members through membership of umbrella organisations such as the UK Neurological Alliances, Rare Disease UK, and National Voices. Providing targeted infomiation for members and the general public via our website. Supplying information packs for clinicians throughout the UK. Our commitment to research: Funding research projects focused on the cause. cure. prevention, treatment, and quality of life for people with myasthenia and related conditions. Supporting the training of clinicians in the field of myasthenia. Communicating research outcomes and future opportunities transparently to members and stakeholders. To achieve these aims, we undertake a range of fundraising activities. We are deeply gratefLtI to everyone who supports us financially and to our dedicated volunteers who contribute to both support and fundraising. Raising unrestricted funds lo cover Ihe charity's core costs, such as postage, telephone, printing, online services, and other essential expenses, remains a key challenge, and we are especially Ihankful to those who make donations that can be used flexibly in this way.
Myaware Report of the Trustees and Financial Statements for the Year Ended 3151 March 2025 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 objectives and activities. Grants are awarded by the Board of Trustees when funds are available and only when the charity's reserves position allows for the commitment of funds to multi-year projects. Research grants are subject to a rigorous peer review process, overseen by the myaware Medical Committee. Public Benefit The trustees have referred to the Charity Commission's general guidance on public benefit when reviewing myaware's aims and objectives and in planning future activities. In particular, the trustees always Consider how planned activities will contribute to the charity's objectives and benefit the public. ACHIEVEMENT AND PERFORMANCE How we receive our money: Donations and legacies- £184,623 Other trading activities £183,483 Investment income- £81,029 TOTAL- £449,135 18% 41% 41% Donations aiid Legacies Other irading activifies Ir)vesnient income
yaware Report of the Trustees and Financial Statements for the Year Ended 31$1 March 202S REPORT OF THE TRUSTEES How we spend our money: Support- £725,425 Research- £195,878 Awareness- £121,094 Fundraising £11,691 TOTAL- £1,054.088 II'A 19% 69¢ Support Research Ai'iareness Fundrai n8 The above data indicates a deficil of just over £0.6 million. While Ihis is a significant shortfall, we have been fortunate to receive several substantial legacies in recent years, which have helped sustain the charity during this period. The Trustees acknowledge that this level of deficit is not sustainable in the long term. and a strategic plan is being developed to reduce the gap belween income and expenditure. Support of Members Our membership grew significantly during Ihe financial year, increasing by 37.95 % to 3,788 members. We welcomed 746 new members, each of whom received a newly diagnosed support pack. In January 2024, we transitioned lo a lifetime membership model. which contributed to this substantial growth and enabled us to reach and support more individuals affected by myasthenia. We conlinue to keep our members informed and connected through quarterly newsletters, which provide news, support, encouragement, and recognition for those who contribute through donalions and fundraising. This year, we also brought together specialist myasthenia nurses from across the UK, fostering collaboration and sharing expertise across the sector.
Myaware Rèport of the Trustees and Financial Slalemenls for the Year Ended 31 sl March 2025 REPORT OF THE TRUSTEES Support of Members - continued Throughout Ihe year, we delivered 38 Zoom sessions led by our national support coordinators and Benefits & Welfare Officer. As part of My Awareness Month in June 2024, we hosted two webinars, one led by Dr. Channa Hewamadduma and another by the Myasthenia Specialist Nurses. A third webinar, focusing on the latest f5ndings on lung and bone health, was delivered by our Research & Partnerships Manager. In total, 1,209 members attended these national Zoom and webinar sessions (an increase of nearly 15Q/o compared to the previous year) accessing peer support, information and friendship. Our closed, members-only Facebook groups remain a safe and supportive space, with 1,282 members engaging to share experiences, ask questions, and receive guidance. We provide telephone and email support Monday lo Friday, 9am to 5pm, offering advice, information, and a listening ear through our dedicated support team and head office staff. Our Benefils and Welfare Officer supported 615 members this year, an increase of over 700 from last year. This remarkable growth reflects the compassionate and effective support being provided. Research The Research and Partnerships Manager {R&PMI oversaw the continued support of a variety of projects funded by myaware. The R&PM also prepared and pursued the execution of contracts related to f unding new projects within the research budget for the financial year 2024- 2025. This department also oversaw the advertisement. assessment, and delivery of funding agreements with five myasthenia specialist nurses in the United Kingdom. The details of Ihese projects and contracts are as follows.. Professor Isabel Leite {Oxford): The Establishment and Use of a UK Database for Myasthenic Disorders: At present, the database coordinator is being funded by myaware until September 2025. Dr Ashraghi is working with the coordinator to continue populating the database for this period and then reassess the need for further funding. During this lime, myaware will receive a yearly summary. There are at present 801 patients entered: 494 Tier 1 35 are Tier 2 272 are Tier 3 Diagnosis.. 781 MG 90% AChR 4.40/0 MUSK 5.6 % Seronegative LEMS. 18 o CMS.2
Myav4are Report of the Trustees and Financial Statements for the Year Ended 31, March 2025 REPORT OF THE TRUSTEES Research - continued Sex distribution.. 51.6 % male, 48.4 % female. Mean age at diagnosis 50 years. Mean duration of disease 9.9 years {0-71.65} Mean current age 60 years. Selected ethnicities.. 71.5010 White British, 2.4 % Indian, 1.8010 Black African, 1.80/0 Black Caribbean, 22.5Vo Not documented in patient records. Reassuringly, Ihe demographics of the patients in the registry reflect what we would expect to see in an MG population based on previous studies. This supports the integrity and quality of the data being entered into the database. Oxford University Hospitals 414 Actively consenting with plan to enter in bulk. 141 UCLHINHNN Universi Hospitals Birmingham Universi Hospitals Southampton Universit Hospitals Sussex Greater Glas ow 27 67 Imperial College Healthcare NHS Foundation Trust 41 Nottin ham Universi Hospitals Sheffield Teachin Hospitals 43 28 St George's Hospital NHS Foundation Trust 25 Barts Heatth NHS Trust Actively consenting with plan to enter in bulk. Actively consenting with plan to enter in bulk. Actively consenting with plan to enter in bulk. Actively consenting with plan to enter in bulk. Northern Care Ajliance Swansea Bay University Health Board Hywel Dda Sites in process of being set up: Hull University Teaching Hospital Northampton General Hospital Gloucester Hospitals NHS Royal Cornwall Hospitals Moorefield's Eye Hospilal Chelsea and Westminster Hospitals Dartford and Gravesham Alder Hay Children's Hospital 11
Myaware Report of the Trustees and Financi81 Statements for the Year Ended 31 $1 March 2025 REPORT OF THE TRUSTEES Research - continued Dr Katy Dodd {Man¢hester): Optimising the Immunosuppressive Management of Myasthenia Gravis.. With funding from myaware, Dr Dodd, alongside Dr Sussman and immunology experts al the University of Manchester, examined T cells in the blood of patients with acetylcholine receptor antibody-positive myasthenia gravis IAChR-MG). She has found that those who have ongoing symptoms despite Immunosuppression treatment have low'regulatory" T cells. Regulatory T cells help to regulate overactive immune responses. This may open further avenues for therapy, as there are several methods used in other autoimmune diseases to "boost" regulatory T cells, which would be worth studying in myasthenia gravis. AChR antibodies are known to activate the complement system, another component of the immune system. Comp5ement activation is known to cause further disruption at the nerve- muscle junction, bul wider effects on the rest of the immune system are less well studies. The team looked at the expression of complement receptors on T cells and showed that these are increased in those who have more active and difficult to treat disease. Further work is needed to better understand how this might further impact upon the immune response. Additionally, following rituximab therapy, those who had the worst response demonstrated persislent elevation of complement receptors on T cells, suggesling thal treatments targeting the complement system may have been better suited to those individuals. There was no difference seen in the expression of'immune checkpoints" on the T cells in the different patient groups. These checkpoints are of interest in myasthenia, as when blocked by certain cancer treatments, a severe form of myasthenia can be triggered. Going forwards Dr Dodd, with collaborators from the Manchester Centre for Cancer Research are collecting blood samples from patients with this new form of myasthenia, to try to betler understand it. This work has been part of a wider project in which Dr Dodd has also studied other immune cell types and markers in AChR-MG, with funding from the Northcare Charity and the Neuromuscular Study Group. Those with refractory disease have been found to have specific immune changes, including higher proportions of memory" B cells and certain complement proteins, and lower proportions of dendritic cells. Additionally, there are wider inflammatory immune changes including higher frequencies of monocytes, and high production of inflammatory cytokines from B cells when stimulated. The work is due to be submitted for publication in the near future but has been presented at national and international medical conferences. Hayley Ramjattan (Oxfordl - CMS Monitoring". This project set out to address the absence of key clinical outcome measures in Congenital Myasthenic Syndromes ICMSI. Hayley Ramjattan, a specialist neuromuscular physiotherapist based in Oxford, sought to gain a better understanding of the natural progression of CMS and the different clinical phenotypes. This 2-year study recruited 50 patients and is currently being prepared for publication. 12
Myaware Report of the Trustees and Financial Stalemenls for the Year Ended 31 $1 Mar¢h 2025 REPORT OF THE TRUSTEES Research - continued Professor Isabel Leite (Oxfordl - COWD-19 Vaccine Response in Myasthenia Gravis Patients.. The funding agreemenl for this project has now been signed by Oxford Universily and countersigned by the myaware CEO. Recruilment for an appropriate researcher to undertake this work is underway. Professor Isabel Leite (Oxford) - Maternal acetylcholine receptor antibody-associated neonatal disorders.. frequency and mechanisms.. This clinical fellowship is being undertaken by Dr Ezgi Bakiricioglu Duman and began in October 2024. Dr DLsman has been developing her lab skills and familiarizing herself with the methodologies that will be used for the duration of the DPhil project. These methods include live cell-based assay, radioimmunoassay, and flow cytometry. This is in preparation for the arrival of serum samples from pregnant women with clinical information for Iheir offspring of up to years of age. It is also planned that Dr Duman will collect serum samples from pregnant molhers with myasthenia gravis at John Radcliffe Hospital to begin characterisation. Dr Adam Handel {Oxford> - MyArchive.' an irreplaceable resource for myasthenia gravis research.. Emeritus Professor Nick Willcox built up a store of approximately 6,000 blood and tissue samples from over 2,000 people with myasthenia gravis dating back to 1980. These samples held at the University of Oxford are an irreplaceable and unique resource, which could help provide insight into why people develop myasthenia gravis and how those people respond to treatments. MyArchive is a proposed method to safeguard the legacy of the donors and make sure that these samples are used in the best possible way to advance research into myasthenia. MyArchive provides access to these samples to research groups who can help to answer key research questions about disease mechanisms and their trends over time. A panel of researchers based in Oxford coordinates the supply of MyArchive samples to a wide collaborative network lo ensure that individual donor's samples are used for those experiments most likely to lead to breakthroughs in our understanding or Irealmenl of myasthenia. MyArchive also promotes and enables excellence in research to best inform people with myasthenia about their condition and identify possible new treatments for the future. Supporting MyArchive has enabled researchers around the world to benefit from aCsS to an irreplaceable archive of tissues from people with myaslhenia. This has clear benefits to people with myasthenia gravis, since the diverse research projects Ihat would be possible with MyArchive have both basic immunological and translational impact on Ihe care of people with myasthenia gravis. It is likely that these research avenues will cast light on the causes and potentially identify new targets for trealmenl avenues in myasthenia. Myaware also honours the legacy of those people with myasthenia gravis, who so kindly donated samples to Emeritus Professor Nick Willcox's team since 1980, and so supporting this archive ensures thal their samples are best used lo help research in myasthenia gravis. 13
Myaware Report of the Trustees and Financial Statements lor the Year Ended 313t March 2025 REPORT OF THE TRUSTEES Research - ¢ontinuod MyArchive is now live at the University of Oxford website.. hlt s Ilwww ndin. ox ac uki reseai"chlni archive Dr Nlcholas Jones (Swanseal - Interrogating the contribution of adaptive immunometabolism in myasthenia gravis.. This Collaborative project between Ihe University of Swansea and The George Washington University in Washington DC, USA. looks to examine the roll of immune-cell metabolism in myasthenia gravis. Dr Jones, group in Swansea is looking to confimi their hypothesis surrounding targets for potential new treatments for myasthenia gravis that focus on immune- cell metabolism. At present, thirteen samples from myaslhenia gravis patients have been received in Swansea after being sent over from Washington. These samples have been run through a substantially Opiimised flow cytometry panel and the data is in the process of being analysed. It is hoped that this data will identify further therapeutic targets for myasthenia gravis. Dr Sithara Ramdas (Oxford) - Future Management of Congenital Myasthenia Syndromes.. This project looks to tackle delay in diagnosis for patients with congenital myasthenia syndromes ICMSI who present symploms at birth. This delay can potentially result in death in severe Cases and in others the inability to perform day to day activities, affecting their education, careers, and overall physical and mental wellbeing. Dr Ramdas is looking to develop a pathway to help predict the likely type of CMS in a baby identified through newborn screening. This will help the medical leams manage these patienls and apply the appropriate treatment strategy. Dr Ramdas has so far completed analysis of 252 patients from the Oxford CMS database focusing on age of onset and symptoms of onset, delineating those with onset under 2 years of age against over 10 years and over 18 years. In addition to this, a pilot study will be undertaken to assess if a wearable device will help measure fatigab5e weakness in CMS patients, which could prove lo be a Crucial and premier outcome measure for CMS. This is currently in the early stages of design and planning. Lastly, Dr Ramdas will look at the impact of CMS and disease burden, including economic impact, for CMS patients and their families. This will be crucial information to have for regulatory authorities as they review the cost effectiveness of new Ireatrnents and will be part of decision making on including CMS as part of routine national newborn screening programmes in the future. Five questionnaires focusing on quality of life and economic costs will be released to collect this dala and approval has been granted by the hospital governance team. Support - Nurses Imperial College Healthca NHS Trust - Development of an MG thymic subspecialist AHP/nurse.' This project aims lo introduce an Allied Health Professional (AHP} that focuses on post- operative care of thymoma and thymic hyperplasia patients, assisting with the development of a dedicated thymic Multidisciplinary Team in collaboration with Oxford. This dedicated role aims to improve patient care, minimise complications and reduce length of slay, as well as assist with long term follow up protsdures. 14
Myaware Report of the Trustees and Financial Slalemenls for the Year Ended 31 11 March 2025 REPORT OF THE TRUSTEES Support- Nurses - continued University Hospitals Birmingham - Additional specialist nursing support.. Myaware are helping to fund a new part time specialist nurse at University Hospitals Birmingham. It is hoped that by increasing the specialist nurses resource that this Trust will be able lo support wilh monitoring Rituximab patients and assist with the implementation of a telephone service for patients. Samord Royal Hospital, Manchester- Expanding myasthenia care and specialist nurse seThice.' This grant will enable the establishment of a helpline for myasthenia patients to a¢¢ess nursing support, create a new immunosuppression initialion clinic, providing dedicated support for patients with questions or who are new to this type of treatment and require blood monitoring. The team at Salford will also use this funding lo provide support for patients who are admitted to hospital due to flu¢tLbations or crisis in their myasthenia and provide increased emolional and social support. St George's NHS Foundation Trust / Southwest London ICB / Surrey Heartlands ICB- Myasthenia Specialist Nurse.. This funding ensures the continuation of the current specialist nurse, who supports patients in Soulhwest London and Surrey and the administration of novel therapeutics at St George's. The myasthenia gravis nurse will act as a point of contact for patients including for relapsing patients which will enable a responsive MG seNice and rapid assessment and treatment of deteriorating patients. Working across Southwest London and Surrey, including multiple Trusts and a large geography, the specialist nurse will ensure equity of access lo specialist myasthenia care, irrespective of who is seeing the patient in a general neurology service. The specialist nurse will ensure a safe introduclion of disease modifying drugs and close blood monitoring in the initial treatment stage and therefore improve patient safety. With this support, they will be able to counsel patients on side effects of treatments including steroids or steroid sparing agents. Finally, they will accelerate the workup and therefore access of patients to novel disease modifying therapies. King's College Hospital NHS Foundation Trust - Training for in-post specialist nurse Myaware have provided funding to further the training of an in-post specialist nurse at King's College hospital. The specialist nurse will attend courses that will cover essential topics such as systemic and structured history-taking assessment and physical examination skills. They will also pursue a course in non-medical prescribing which will also further benefit not only the specialist nurse but their patients. Partnerships The research and partnerships manager has continued to engage with external stakeholders, providing insight into educational proiecls with the Neurology Academy, sitting on the national myasthenia gravis steering group with the Health Innovation Neork. and collaborating where appropriate with pharmaceutical companies to elevate the patient voice and unmel needs of the community.
Myaware Report of the Trustees and Financial Slalemenls for the Year Ended 3151 March 2025 REPORT OF THE TRUSTEES Partnerships - continued The research and partnerships manager has delivered an engaging workshop at MG. Connects in Bimiingham, partnering wilh clinical staff around the country to identify better ways the charity can work alongside healthcare professionals. This meeting identified the need to share our patient packs with clinical staff so that myaware resources can be better integrated into the treatment pathway for myasthenia patients around the country. There has been a successful application for funding from external partner UCB {£41,620.12) which cover the costs of attendance at both Pulse. Live events this coming year, in Newcastle and Glasgow. This funding will also go towards supporting our welfare and support services, ordering merchandise for myasthenia awareness month, and providing an update to our website. Additionally, these activities are also supported by funding from Merck {£17,824> received in the 2025126 financial year. Awareness Raising awareness of myasthenia and related conditions remains a central pillar of myaware's mission. Throughout the year, we have continued to champion greater understanding of myasthenia among healthcare professionals, patients, carers, and the wider public. Our team has actively participated in a range of national and international events, Including the London UCB Patient Day, the EUMGA Summit in Amsterdam, the Association of British Neurologists IABNI Conference, the NEC, the RCGP Event in Liverpool, and the BJGP Conference. These opportunities have enabled us to share the experiences of those living with myasthenia, promote the latest research, and strengthen relationships with clinicians, researchers, and industry partners. We have also maintained a strong digital presence, wilh our website and social media ¢hannels providing a¢cessible, up-lo-date information to a growing audience. Over 118,000 peop5e visited the myaware website this year, with our online resources and support groups continuing to play a vital role in connecting individuals and families affected by myasthenia. Our printed materials, including booklets and leaflets, remain in high demand among both patients and healthcare professionals. In addition, myaware has continued to represent the myasthenia community through membership of umbrella organisations such as the UK Neurological Alliances, Rare Disease UK, and National Voices. We have supplied information packs for clinicians across the UK and provided targeted resources for both members and the general public. Our awareness initiatives are supported by the dedication of our slaff. volunteers, and partners, whose efforts ensure that myasthenia remains visible and understood within the healthcare sector and beyond. We are grateful for the continued support that enables us to advocate for improved care, earlier diagnosis, and better outcomes for everyone affected by myasthenia. 16
Myaware Report of the Trustees and Finaneial Slalements for the Year Ended 31 St March 2025 REPORT OF THE TRUSTEES Review of Income Activities 202412025 £500.000 £450.000 -400.000 r350.000 P30Q.000 1250.000 r?00.ooo P150.000 _100,000 £so.000 £0 É449.135 È92.95S t94.818 £49971 £53.0 t40.034 00 È292 £3.72 £5.DBI £8.663- Elg,498 The Fundraising department recruited a full time Events Fundraiser lin post from October 2024) and a part time Community Fundraiser lin post from September 2024) the positive results of which have begun to show in the 2024-2025 income. Despite the ongoing exlernal challenges of the cost-of-living crisis, we are incredibly grateful to all those who were able to continue to support myaware. During the year we were grateful to 9 people who remembered myaware in their wills. Restricted bequesls totalled £1,000, and unrestricted bequests totalled £39,034.18. Donations have increased by 8.80k since last year to £94.618 Corporale donations and affinity programmes have raised £8,663 during the period. We received £53,270 from trusts and grant giving organisations this year. An increase of 430/0 since last year. One of the donations for £41,620 was received from the UCB UK biopharmaceutical company as a restricted grant. Other donations ranged from £50 to £2,000. Income received via events increased by 124 % on the previous year and totalled £92,955. This can be seen as a direct result of a dedicated part time Community Fundraiser and a full lime Events Fundraiser being in post from September and October 2024 respectively. During this financial year myaware received £49,971 in In Memoriam donations and we are extremely grateful to those who have chosen to remember their loved ones by donating to myaware. Our quarterly fundraising appeals have been well received and have increased in income by 65.50/0 on the previous year to £19,498. 17
Myaware Report of the Trustees and Financial Slalemenls for the Year Ended 31 sl March 2025 REPORT OF THE TRUSTEES Impact and Value Myasthenia means muscle weakness. It affects the muscles that allow voluntary movement, but not the automatic ones like the heart. In myasthenia, the brain's signals to the muscles are disrupted, making everyday activities such as walking, smiling, and talking extremely challenging. When swallowing and breathing are affected, it can become a medical emergency. Myaware is dedicated to providing accessible support services and reliable information to everyone diagnosed with myasthenia. Recent research now estimates Ihat around 20,000 people in the UK are living with myasthenia, a significant increase from previous figures. As of April 2025, myaware supports nearly 19°/0 of those diagnosed, with active membership rising by 37.95°/o this year to 3,788 members. Our aim Is lo continue raising awareness so that everyone diagnosed can access the support they need to live well with myasthenia. A myasthenia diagnosis can be life-changing. Myaware strives to make life easier for people with myasthenia and their families by.. Accessible information and support online, by telephone, or via email: 38 online Zoom support sessions delivered this year, providing information, advice, and peer connection. Three national webinars, including sessions led by specialist nurses and researchers. Six secure, closed Facebook groups, including groups for Congenital Myasthenic Syndromes ICMS), Lambert-Eaton Myasthenic Syndromes ILEMS}, carers, and young people, providing 2417 peer support. National Facebook, Twitter, and Instagram pages offering information and signposting. Telephone and email support available Monday to Friday, 9am-5pm, via our dedicated support and head office teams. Benefits and Welfare advice seNice, with 615 enquiries supported this year, a 700/0 increase from last year. Comprehensive online information for people living with myasthenia, their families, and healthcare professionals via our webslte, which saw over 118,000 visitors and 1.1 million interactions this year. Increased awareness among the public and healthcare professionals: A comprehensive website offering accessible information on all aspects of living with myaslhenia. A range of detailed booklels and leaflets, including resources for rarer myasthenia Conditions and for healthcare professionals. Newly diagnosed infomiation packs sent to all new members. Clinic awareness packs for GP surgeries, neurology clinics, dentists, opticians, and pharmacies. Representalion of our members, needs at the Neurological Alliance, Rare Disease UK, National Voices, and the annual MG Connects meeting for neurologists. Commitment to research and clinical trainlng: Responsible funding of research projects in the areas of cause, cure, Prevention, treatment, and quality of life. Support for the training of clinicians in Ihe field of myasthenia. Transparent communication of research outcomes and opportunities to members and stakeholders. 18
Myaware Report of the Trustees and Financial Slalements for the Year Ended 31 St March 2025 REPORT OF THE TRUSTEES FUTURE DEVELOPMENTS AMBITIONS AND LONG-TERM STRATAGIES As demand for our support continues to grow, myaware is committed to making every penny count and finding fresh, imaginative ways lo connect with and support our community. We're focused on building a future where no one affected by myasthenia feels alone or unheard. Since the pandemic, we've embraced a digitally connected support model, allowing us to reach people wherever they are. Through Zoom. social media, phone, and email, our national support team has been able to offer help, guidance, and community to more Individuals than ever before. Listening to our members is at the heart of everything we do. Our annual member survey, along with quick polls and feedback fomis on social media, help shape the services we offer. We're also introducing new ways for people to share their experiences. including short"How did we do?" questionnaires, so we can keep improving and responding to real needs. We're investing in our website to make it more intuitive, accessible, and informative, ensuring that vital resources are easy to find and available to everyone. including those with additional accessibility needs. This includes ongoing improvements to digital tools that make our content more inclusive. Looking ahead, we're excited lo deepen our relationships with heallhcare professionals to help improve diagnosis and treatment pathways. We'll continue to represenl our members at nalional forums such as the Neurological Alliance and Rare Disease UK, ensuring that the voices of people with myasthenia are heard where it matters most. We remain deeply committed to using our restricted research funding responsibly, supporting projects Ihat explore the causes, treatments, and potential cures for myaslhenia, and ultimately, improving the quality of life for everyone affected. Finally, we continue to uphold the highest standards in data protection, ensuring full compliance with the UK General Data Protection Regulation12018}. You Can read our privacy policy here. htt s Ilwww.m aware.or rivac olic 19
Myaware Report of the Trustees and Financial Statements for the Year Ended 3151 MaTch 2025 REPORT 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 in Scotland.. SC044744 Registered Office Myaware The College Business Centre Uttoxeter New Road Derby DE22 3VVZ Auditors Johnson Tidsall Limited Chartered Accountants 81 Burton Road Derby DE1 1TJ Solicitors Ellis-Fermor & Negus 2 Devonshire Avenue Beeston Nottingham NG9 1BS Bankers Virgin Money 11 Smithy Row Nottingham NG1 3EJ Interim Chief Executive Officer Marc Smith (appointed 30.06.2025) Trustees Trevor Ranson - Chair Andrew Robinson- Treasurer Professor Bethan Peach Jon Rio Professor Saiiu Jacob Rashmi Rungta Claire Wen Sara Jones (appointed 08.05.2024J Tony Ferrari (resigned 08.07.2024) Dr Channa Hewamadduma (appointed 24.07.2024} Penny Henrion {resigned 15.02.2025) Dr Fiona Norwood (resigned 05.06.2025) Dr Kaly Dodd (appointed 25.07.2025} More informalion regarding the Trustees can be found at- hlt s'.Ilwww.m aware.or eslfa slcale lmeel-the-board 20
Myaware Report of the Trustees and Financial Statements for the Year Ended 31st March 2025 REPORT OF THE TRUSTEES STRUCTURE GOVERNANCE & MANAGEMENT Myaware is a company limited by guarantee, incorporated on 27, March 1995 (number 30383581, a registered charity in England and Wales (number 10464431 and a charity registered in Scotland (number SC0447441. It is governed by its Memorandum and Articles of Association adopted on 271b March 1995 and amended on 29, March 2018. Subject to the provisions of the Companies Act 2006, the articles and lo any dire¢lions 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 trustees which would have been valid if thal alteration had not been made or that direction had not been given. The powers given by this article and a meeting of trustees at which a quorum is present may exercise all the powers exercisable by the trustees. The pay and remuneration of the senior managers of myaware is considered annually by the Irustees. The board of Trustees meets during the budget setting process to review salary levels, Increment payments and 1nflalion rises. The Trustees Consider benchmark information relatin9 to similar posts in similar organisations within the charity sector to assist with their decision. We continue to work in partnership with other organisalions with shared interest, including Neurological Alliance and Rare Disease UK. Fundraising 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 use any other methods or approaches that may be deemed as harassing or pressurising thè recipient. We always respect the privacy of those who share their personal information with us. Recruitment, appointment. induction and training of new Trustees Only members of the charity may become Trustees. TheArticles ofAssociation allow the Trustees to appoint candidates to become a Trustee (and Director), either to fill a vacancy, or to strengthen the Board Candidates become known to the Board through personal knowledge or research of existing Trustees, by interested members of the organisation volunteering their services or, occasionally, as a result of advertising by the Board. Before appointing a new Trustee, the Board will consider any perceived weaknesses in the ¢urrenl 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 possible the candidate will be invrted to attend one or more meetings of the Board as a nonvoting observer. The candidate may then be appointed as a Trustee by a fomal mobon of the Board. The Chair takes care to ensure that new Trustees receive personal guidance on their responsibilities under the Charity's Articles. and Charily and Company law. They may also seek advice and assistance from the Treasurer and the other members of the Board. A formal Trustee induction programme is currently being developed by the Interim Chief Executive Officer and the Senior Management Team. 21
Myaware Report oflhe Trustees and Financial Slatemenls for the Year Ended 3151 March 2025 REPORT OF THE TRUSTEES Myaware Sub-committees Medical Committee: Professor Bethan Peach Professor Saiju Jacob Charlotte Campbell- Research & Partnerships Manager Dr Channa Hewamadduma (appointed July 2024) Sarah Cuthell {resigned July 20241 Dr Heidi Harrison (appointed July 2024 and resigned January 2025) Penny Henrion (resigned February 2025) Dr Fiona Norwood {resigned June 2025) Dr Katy Dodd lappoinled July 20251 Marc Smith - Intefim Chief Executive Officer (appointed July 2025) Finance Committee: Andrew Robinson -Treasurer Jon Rio Rashmi Rungta Jamie Caple-Accounts & Compliance Manager Sarah Cuthell (resigned July 2024) Dr Heidi Harrison (appointed July 2024 and resigned January 2025) Marc Smith- Interim Chief Executive Officer (appointed July 20251 The Chief Executive Officer (CEO) is appointed by the Trustees to manage the day-to-day operations of the charity. The CEO reports to the Chair as Iheir line manager. Risk Management The organisation conducts an annual risk review to assess and manage potential threats to its operations and objectives. The 2024-25 review was carried out in June 2024 by a committee of Trustees. Afurther review took place in September 2025, led by the Interim CEO and the Senior Management Team, focusing on major risks across the charity. As a result of these assessments, systems and procedures have been implemented to effectively manage identified risks. An annual budget proposal, oullining projected income and expenditure, is prepared by the CEO in collaboration with the Finance Committee and submitted lo the Trustees for approval. Once agreed, this budget forms the basis for the charity's financial reserves, ensuring that ongoing commitrnenls can be met. Performance against the approved budget is monitored monthly by the Finance Committee and reviewed quarterly by the full Board. Any significant variances are considered by the Board, and where necessary, adjustments are made to mitigate financial or operational risks. 22
Myaware Report of the Trustees and Financial Slalements for the Year Ended 3151 March 2025 REPORT OF THE TRUSTEES Financial Review Financial Position The organisation reported a total net deficit of £615,093 compared with a total net surplus of £130,370 in the previous year. Unrestricted funds decreased by £374,522 to £1,426,942 Restricted funds decreased by £240,571 to £98,915 Incoming Resources Total incoming resources for the year were £449,135 down by £729,265 from the previous year. This year we received £184,623 in donations, of which £40,034 relates lo legacy gifts. We received £1,980 in restricted funds. Income from other trading aclivilies increased by £63,747 to £183,483. Investment income has decreased by £5,393 to £81,029. Resources Expended Total resources expended decreased by £14,047 to £1,054,088. Research costs were decreased by £206,530 on previous year to £195,878 of which £117,229 was restricted. Support costs were increased by £179,951 on previous year to £725.425 of which £171.652 was restricted. Awareness costs increased by £13,496 to £121,094 of which £9,731 was restricted. Fundraising costs were decreased by £964 to £11,691. Tolal funds sland as £1,525,857 compared with £2,140,950 last year. Funds at the year-end were made up of unrestricted funds of £1,426,942 (2024., £1,801,464) and restricted funds of £98,915 {2024'. £339,486). The reported deficit reflects a year of reduced legacy income compared to last year, which had significantly boosted the overall financial result in that year. While overall income declined, core donation levels have shown a modest increase when legacy gifts are excluded, and other trading activity continues lo grow. Restricted expenditure remained high, demonstrating the charity's commitment to delivering on donor intent and ensuring thal designated funds are used appropriately. The scale of the deficit highlights the need for continued focus on income generation and cost control going forward. 23
Myawaie Report ol the Trustees and Financial Statements for the Year Ended 31st March 2025 REPORT OF THE TRUSTEES Contingent Asset During the year, the charity remained in contact with the solicitor managing a significant legacy, for which myaware is the sole beneficiary of the residual estate. As in the previous year, the Trustees have been unable to obtain a rèliable eslimate of the amount due. ArLordingly, the legacy continLses to be treated as a contingent asset. Further details are provided in note 23 on page 46 of these financial slatements. Reser4es Policy Reserves are held to ensure that planned and committed expenditure over the nexi five years can be met. Unrestf Icted funds not invested in langible and intangible fixed assets (the free reserves) are held to meet a minimum of twelve months budgeted expenditure and to enable the charity lo fulfil its planned and committed expenditure over the next five years which are not covered by restricted funds. As of 31" March 2025, the 12 month's budgeted unrestricted expenditure equates to £896,760 and th& free resetves, which amount to £1,377,748 leaving a surplus of £480,988 available for future expenditure. The surplus reflects legacies bequeathed. The charity cannot predict ils legacy income year on year, and this can vary significantly. The surplus on funds generated is helping to fund our current year. Going Concern The Trustees have set a realistic budget for 2025128, forecasting a nel deficit of £474,433 on unrestricted funds. This reflects inflationary cosl increases across core ackn'vities and a cautious assumption of no legacy income during the year. Despile the projected deficit, going concern is nol considered an issue. The charity continues to operate within its reserves policy, and Ihe Trustees monitor liquidity on a monthly basis. The surplus of unrestricted fLsnds provides a buffer to support operations, and on this basis, the Trustees consider the going concern basis for the preparation of these financial statements to be appropriate. Principal Funding Sources The charity benefitted during ihe year from a number of generous legacies amounling in total lo £40,034. Donations amounted to £94,618. Events fundraising generated £92,955 and In Memoriam donations raised £49,971. Investment Policy and Objectives Trustees agree on investments in compliance with the Articles ofAssociation. The return on investment for the year was 4.30k (2024.. 4.1 % }. If the change in value of investments is included, the return is 3.80/0 {2024'. 5.10/0). Note that these figures do not include interest earned on bank current accounts - such interest 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. 24
Myaware Report of the Trustees and Financial Statements for the Year Ended 3151 March 2025 REPORT OF THE TRUSTEES Statement of Trustee Res onsibilities The Trustees {who are also the directors of myaware Company Limited by Guarantee for the purposes of company lawl are responsible for preparing the Report of the Trustees and the financial statements in accordance with the applicable law and United Kingdom Accountsng Stsndards (United Kingdom Generally Accepted Accounting Practi} 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 statements for each financial year which give a true and fair view of the state of affairs of the charitable company and of the incoming resour$ and application resour$, including the income and expenditure of the charitable company for that period. In preparing those financial statements, the trustees are required lo". Select suitable accounting policies and they apply them consistently. Obsetve 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 that the charitable Company will continue in business. The Trustees are responsible for keeping proper accounting records which disclose with reasonable accuracy at any time the finanoal position ofthe charitable company and to enable them to ensure that the financial stalements comply with the Companies Act 2006. The Charities and Trustees Investment Act (Scolland} 2005 and The Charities Accounts (Scotlandl Regulations 2006 (as amended). They are also responsible for safeguarding the assets ofthe charitable company and hence for taking reasonable steps for the Pfevenlion and detection of fraud and other irregularities. In $0 far as the Trustees are aware.. There is no relevant audit informalion of which the charitsble company's auditors are unaware,. and The Trustees have taken all steps that they ought to have taken 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 the Maintenan and integrity of the corporate and financial information included on the charitable company'5 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 Companie5 Act 2006 relating to small companies. ON BEHALF OF THE BOARD.. Mr Trevor Ranson, Chair oflhe Board of Trustee5 DATE.. 22 October 2025 25
REPORT OF THE INDEPENDENT AUDITORS TO THE TRUSTEES AND MEMBERS OF MYAWARE Opinion We have 8udiled Ihe financial slalernenls ol Myaware Company Limited by Guarantee Ilhe 'charrt3ble company'l for the year ended 31 March 2025 which comprise the Statement of Finan¢ial Activities, the Balance Sheet. the Cash Flow Slalemenl and notes to the financial 51alements, including a sumrnary of 5ignific8lll accovnling policies. The financial reporting framework that has been applied in Iheif pparatIOn is applicabte law and United Kingdom Accounting Standards Iuniled Kingdom Generally Accepted Accounting Praclicel. including Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland,. In our opinion the financial slalernents.. give a true and fair view ol the State of the charitable company's affairs as at 31 March 2025 and of ils incoming sources and application of resources. including its Income and expenditure, for the year then ended,. have been properly prepared in accordance wrth United Kingdom Generally Ac¢epled Accounting Practi, including Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland,, and have been prepared in accordance with the requirements of the Companies Act 2006. the Charities and Trustee Investment (Scollandl Act 2005 and Regulation 8 of the Charities Accounts Iscollandl Regulations 2006. Basis for opinion We Conducted our audit in accordance with International Standards on Auditing IUKI IISAS IUKII and applicable law. Our fesponsibililies under those standards are further described In the Audbtors, responsibilities for the audit of the financial slalemenls section of our report. Vve a¥e independent ol the charitable company in accordance with the ethal requirements that are relevant lo our audit of the financial slalemenls in the UK. including the FRC'5 Ethical Slaridard, and we have fulfilled our other ethical SponsIbl1111es in accordance wrth these requiremenls. W& believe Ihal the audit eviden we have obtsined is sufficient and appropriate lo provide a basis for our opinion. Conclusions relating to going concem In auditing the financial slalements. we have ¢on¢luded that the trustees, use of the going concein basis of accounting in the preparation of the financial slalements is appropnale. Based on the work we have perfomed. we have not idenlrfied any materi81 uncertainties relating to events of condition5 that, Ind4vidual or collectively, may cast significant doubt on the charitable company's ability to continue as a going concern for a period of al least twelve months from when the financial slalemenls are authorised for Issue. 04Jr responsibilities and the responsibilities of the Iru51ees with respect to going concern are des¢fibed in the relevant sections of this report. Other infomiatlon The trustees are iesponsible fof the other information. The other information comprises the information included in the Annual Report, tslher than the financial statemen15 and our Report of the Independent Auditors Ihereon. Our opinton on the financial statements does not coverthe other information and. except lo the extent otherwise explicit slated in our report. we do not express any form of assurance conclusion theon. In connection with our audit of the financial slalemenls, Our Sponsibl11tY Is to read the other information and, in doing so, Consider whether the other inlormation is materially inconsislenl wilh the financial statements or our knowledge obtained In the audit or otherwise appears lo be materially misstated. If we identify such material inconsistencie$ or apparent material misstatements, we are required lo delem)ine whether this gives rise lo a material misslalemenl in the financial statements themselves. 11. based on the work we have perforrned, we Conclude that there Is a material misstatement of this olhef information. we are required lo report that fact. We have nothing lo report in this regard. Opinions on other matters prescribed by the Companles Act 2006 In our opinitsn, based on the work undertaken in the course of the audit.. the information given in the Report of the Trustees for the financial year lor which the financial statements are prepared is consislenl with the financial slalements.. and the Report ol the Trustees has been prepared In accordance with applicable legal requirements. 26
REPORT OF THE INDEPENDENT AUDITORS TO THE TRUSTEES AND MEMBERS OF MYAWARE Matters on which we are required to report by exception In the light of the knowledge and understanding of the charitable company and ils environment obtained in the course of the audit. we have not Idenlilied material mis51atemenls in the Report of thè Trustees. We have nothing lo report in respect of the following matters where the Companies Act 20Q6 and Ihe ChaTltY&s A¢nIS Iscotlandl Regulations 2006 las amended) requires us lo report lo yov il. in our opinion". adequate and proper accounting records have not been kept Of returns adeguale for our audrt have not been received from branches not v1511ed by us, or the financial slalernents are not in agreement with the accounting records and returns., or certain disc105ure5 of Iiuslees, remuneration spe¢ified by law are not made.. or we have not received all the information and explanations we require for our audit.. or the Iruslees We not enlilled to take advantage ol the small companies exemption from the quirement to prepare a Strategic Report or in preparing the Report of the Trustees. Responsibilities of tru$tee$ As explained more lully in the Statement of Tru51ees' Resptsnsibililies, the Iruslees are SPOnSIb for the preparation of the financial statements and for being satisfied that they give a true and fair view. and for such internal Control as the Iruslees determine is necessary to enable the preparation of financial slalemenls that are free from material misslalernenl. whether due lo fraud or error. In preparing the financial slalemenls, the Iruslees are responsible for assessing the charitable company's ability lo continue as a going concern. disclosing, as applicable. matters related to going concern and using the going concern basis of accounting unless the Iruslees either intend lo liquidate Ihe charitable company or to cease operations. or have no realistic alternative but to do so. 27
REPORT OF THE INDEPENDENT AUDITORS TO THE TRUSTEES AND MEMBERS OF MYAWARE Our responsibilÉties for the audit of the financial statements Our obieclive5 are lo obtain reasonable a55uran¢e about whether the financKal slalemenls as a whole are free from material misslatemenl. whether due to fraud c>r error, and lo issue a Report of the Independent Auditors that indudes our opinion. Reasonable assurance is a high level of assurance, but Is not a guarantee that an audit conducted in aecordance with ISAS IUKI will aayS delect a material misslatemenl when il exists. Misstatements can arise from frèud or error and are considered maleiial if. individually or In the aggregate, they could reasonably be expected to Influen the economic decisions of users taken on the basis of these financial slalements. The exlent lo which our procedures are ¢apable ol detecting irregularrties, in¢luding fraud is detailed below". Irregularilies, including fraud. are instances of non-compliance with laws and regulations. We desvJn prtscedures in line with our respons1bililies, outlined above. lo detect material misslalemenls in respect of irregularities. including fraud_ Because of the inherenl limitations of an audit, the is a risk that we will not delecl all ITgularities. including those leading lo a material misstatement in the financial slalemenls or non-compliance with regulation. This risk increases the more that compliance with a law or regula110n Is removed from the events and ITansaclions reflected in the financial stalemenls. as we will be less likely lo be¢ome aware of instances ol non-comp113nce. The risk is also greater regarding IrTegularilies oc¢urring due lo fraud rather than error, as fraud involves intentional ¢oncealmenl, forgery, collusion, omission or misrepresentation. In identifying and assessing the risks of matenal Tllis51alemenl in respect of irregularit1es, including fraud and non- ¢ompli3nce with laws and regulations. we considered the following -The nature and control environment of the chafilable company -our discussiot)s with management and governance including whetherlhey had knowledge of any actual. suspected 01 alleged fraud -The internal controls to mrtMJale the risks of Iraijd Following our rev1ew. we have Identified the following areas which are deemed lo have the highest potential for Iraud or material misstatement within the financial slatemenls". The liming of revenue recognition The evaluation of eslimales in respect of legacies The ¢orre¢l identification ol reslricled funds The liming and recognition ol cornmitted expenditure The risk of management ovefride We also considered any law5 and regu131ions thal were central lo the opeialion of the charitable cornpany Incjuding ¢ompany law. charity law, employment law and health and Safely. The followng procedUS were undertaken In respecl of the risks where we identified the potential for material misstalemenl". Income from donations and legacies was considered a risk due lo the volume and nature of these Iransaclions. Income may be pledged but there may be a liming difference between commi(menl and receipt_ The overall income of the charitable company could be materially understated. Income Iransaelion testing was performed lo ensure compkleness of income. Post year end donations and legacies were reviewed lo ensure that Income was recognised in the correct accounting period in a¢cofdan¢e with the charitable company's aceL)unling policy. In respect ol legacies. we a150 lesled the accuracy ol eslimales by reviewing Correspondence obtained from solicitors and executors which included the wills and statements of assets and liabilities ol the deceased person's eslale and Whe possible agreed lo receipts after date. Restricted funds in respect of income were lesled lo donor COrSpondence to ensure that the reslri¢lion$ imposed were adhered lo by the Charitab cornpany in expending those funds. This Included vtsu¢hing a sarnp of expenditure. In addition, we tested unrestricted income mindful of any non-recognition of reslricled funds. 28
REPORT OF THE INDEPENDENT AUDITORS TO THE TRUSTEES AND MEMBERS OF MYAWARE The lesling of committed expenditure In relation 10 9ran15 awarded by the charitable company in respect of research was lesled by obtaining copies of the fomial grant offer and agreeing the terms lo the creditor provision in the financial slatemenls. Trustees, board meeting minutes were reviewed, and all commitments noted in the year were agreed lo the financial statements to ensure completeness. A sample of joumal entries were lesled for appropriateness and enquiries made of management as lo the procedures in place for posting journal entries. During our audit we ¢onsKlered any large, unusual journals or transactions outside the normal Coufse of business which were highlighted as a result ol our testing. We reviewed the minutes of Iruslees, board meetings and ¢ontrols put in place by the board of Iruslees including a review of Iheir risk assessment. Al the planning stage we discus$ed with management any laws and regula110ns which were Genlral lo the operation of the charitable company. The financial slalemenls were reviewed alongside our disclosure check1151s lo identify any unusual or unexpected relationships or any areas of non-compliance. Discussions were held with management where il was Considered additional disclosures were required. We remained alert to any indication5 of fraud, material misslalemenl or non-compliance with laws and fegulalions throughout the audit including those relating lo Ihe financial slalemenls. A further desCrption of our respon51bililies foi the audit of the financial slalemenls is located on the Financial Reporting Council's website at www.frc.org.uklaudilorsresponsibililies. This description forms part ol our Report of the Independent Auditors. Use of our report This report is made solety to the charitable company's Members, as a body. in accordance with Chapter 3 of Part 16 of the Comp8nies Act 2006. and lo the charitable company's Iruslees. as a body. in accordance with Regulalitsn 10 of the Charities A¢¢ounts (Scotlandl Regulations 2006. Our audit work has been undertaken so Ihal we might slate lo the charil8ble company's members and the Iruslees Ih05e m8llers we are required lo stale lo them In an auditors, report and for no other purpose. To the lullesl extent permilled by law. we do not accept or assume responsibility lo anyone other than the charitable company and the Charitable company's members as a body. for our audit work. lor this report. or for the opinions we have formed. Davi FCA Isenior Slalulory Auditor) lor an ehalf of Johnson Tidsall Limiled Chartered Accounlanls & Slalulory Auditor Eligible lo act as an auditor In terms of Section 1212 of the Companies Act 2006 81 Burton Road Derby Derbyshire DE1 1TJ Mell Dale.. 29
MYAWARE STATEMENT OF FINANCIAL ACTIVITIES (INCORPORATING AN INCOME AND EXPENDITURE ACCOUNTI FOR THE YEAR ENDED 31 MARCH 2025 2025 Totsl funds 2024 Total funds Unrestricted fund Restricted fund5 Notes INCOME AND ENDOWMENTS FROM Donations and legacies 182,643 1,980 184,623 972,242 Other trading activities Investmenl income 126,352 81,029 57,131 183.483 81.029 119,736 86,422 Totsl 390,024 59,111 449,135 1.178,400 EXPENDITURE ON Raising funds 10,621 1.070 11,691 12,855 Charitable actlvities Research Support Awareness 78,649 $53,773 111,363 117,229 171.652 9,731 195,878 725,425 121,094 402.408 545,474 107,598 Total 7S4,406 299,682 1.054,088 1.068,135 Nel gains on investments 10.1401 10,1401 20.105 NET INCOMEIIEXPENDITUREI 1374,5221 1240,571) 161S,0931 130,370 RECONCILIATION OF FUNDS Totsl funds brought forward 1,801,464 339,486 2.140,950 2,010,580 TOTAL FUNDS CARRIED FORWARD 1,426,942 1 525 857 2, 140.950 The notes form part of these financial statements 30
MYAWARE COMPANY NUMBER 3038358 BALANCE SHEET 31 MARCH 2025 2025 Total funds 2024 Total funds Unrestricted fund Restricted funds Notes FIXED ASSETS Intangible assets Tangible assets Investments 14 15 16 6,216 231,239 6,216 231,239 1,501 241,379 237.455 237,455 242.880 CURRENT ASSETS Slod(s Debtors Cash at bank and in hand 17 18 2,604 618,661 580,746 2,604 618,661 1,218,794 4,162 838,534 1,596,255 638,048 1,202,011 638,048 1,840,059 2,438,951 CREDITORS Amounts falling du& wilhin one year 19 112,5241 {302,321} 1314,8451 1237.4491 NET CURRENT ASSETS 1.189.487 335,727 1,525,214 2,201,502 TOTAL ASSETS LESS CURRENT LIABILITIES 1,426,942 335,727 1,762,669 2,444.382 CREDITORS Amounts fallin9 due after more than one year 20 1236,812) 1236,8121 1303.4321 NET ASSETS 1.426,942 98,915 1,525,857 2,140,950 FUNDS Unreslricled funds Reslricted funds 21 1.426,942 98.915 1,801,464 339,486 TOTAL FUNDS 1 525,8S7 2,140,950 These financial slalements have been prepared in accordance with the provisiorss applicab lo charitable companies subject lo the small companies, regime. The financial 5talemenls wefe approved by the Board of Trustees and authorised for issue on 22 October 2025 and were signed on 115 behatr by". Mr T Ranson - Chair The notes form part of these financial stalements 31
MYAWARE CASH FLOW STATEMENT FOR THE YEAR ENDED 31 MARCH 2025 2025 2024 Nc>les Cash flows from operatin9 activities Cash generated from operations 451,548 522.4311 Net cash used in oper81ing activities 451.548 522.4311 Cash flows from investing activities Purchase of tangible fixed assets Interest received 16.9421 81.029 (2.0001 86.422 Nel cash provided by invesling activities 84,422 Change in cash and cash equivalents in the rèporting period Cash and cash equivalènts at the beginning of the reporting period 1377,4611 1438,0091 1,596 255 2.034,264 Cash and cash equivalents at the end of th& reporting period 1,218.794 1.596,255 The notes form part of these financial statements 32
MYAWARE NOTES TO THE CASH FLOW STATEMENT FOR THE YEAR ENDED 31 MARCH 2025 RECONCILIATION OF NET EXPENDITURE TO NET CASH FLOW FROM OPERATING ACTIVITIES 2025 2024 Net incomellexpenditurel for the reportSng period las per th6 ststement of Financial Activities) Adjustments for.. Depreciation charges (Gainlllosses on investments Interest received Ilncreaselldecrease in slocjts Ilncreaseydeciease in debtors Increaselldecreasel in Creditors 1615,0931 130.370 2,227 10,140 181,0291 1,558 219,873 5,264 120. 1051 186,4221 16761 1721,8271 170,965 Not cash used in operations 451,5481 522,4311 ANALYSIS OF CHANGES IN NET FUNDS Al 114124 Cash flow At 3113125 Net cash Cash al bank and in hand 1.596,255 377 461 1 218,794 1,596,2S5 377,4611 1.218,794 Total 1,596,2SS 377 4611 1 218,794 The notes form part of these financial statements 33
MYAWARE NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025 STATUTORY INFORMATION Myaware Is a chorrtable company, registered In England and Wales and Scotland. The charitable company's registered company number, registered charity number5, registered office address and business address can be found In the reference and administrative details ol the Report of Ihe Trustees. ACCOUNTING POLICIES 8asis of preparin9 the financial Statements The financial slatemenls of the chartable Company, which is a public benefit entity under FRS 102, have been prepared In accordance with the Charrties SORP IFRS 1021 'Accounting and Reporting by Charities.. Statement of Recommended Practice app11¢3ble to charities preparing their a¢¢ounts in accordance with the Financial Reporting Standard applicable In the UK and Republic of Ireland IFRS 1021 (effective 1 January 20191,. Financial Reporting Standard 102 'The Financial Reporting Standard applicable In the UK and Republic of Ireland, and the Companies Act 2006. The financial 51alemenls have been prepared under the historical cost convention, with the exception of investments which Jre Included at market value. as moLtified by the revalualion of certa1n assets. The currency basis for the preparation of these financial statements is pound slerlino i£}. Going ¢on¢ern The ITusl*s regularty monitor the charity's reserves policy and risk a5sessmenl. A realisti¢ budget for 2025126 has been prepared. Liquid funds and cash flow are monitored on a monthly basis. To dale. no material uncertainties exist that would affect the preparation ol the financ1al statements on a going concern basis. Significant judgements and estimates The following judgements (apart from those involving e51imalesl have been made In the process of applying the charitable company's accounting policies that have had the most significant effect on amounts rectsgnised in the financial stalemenls. Legacies- when calculating amounts due on legacies. management considers the wlls of Ihe deceased, executors accounts and notifications received from executors. As at 31 March 2025 the is a legaw debtoi, included in other debtors, of £569,280. Grants - when calculating grant ¢ommilments. management considers the nature of the grants as being within the charity's objectives and the possible lulure benefi15 for people affected by myasthenia. Income All Income is recognised in the Stalernenl of Financial Activities once the charrty has enlillemenl lo the funds, il is probable Ihal the income will be received, and the amount can be measured reliab. Donated services and good5 are re¢ognised as income when the charity has control over them, the economic benefit Is probable and can be measured reliably. In accordance with the Charities SORP IFRS1021, the volunteer time of Support Groups is not recognised. Information about their contribution is provided in the Trustees, Annual Report. For donations lo be re¢ognised the charity will have been notified of the amounts and the 5elllemenl dale. If there are conditions attached lo the donation and this requires a level of performance before enlitlemenl can be obtained, then income is deferred until those conditions are fully met or the fulfilmenl of those Conditions is within the control of the charity. and il Is probable that they will be fulfilled. For legacies, enlillemenl 15 the earli&r gf the charity being notified of an impending distribution or the legacy being received. The nCOme is recognised when the value of the lega¢y can be Measured reliably. Income from trading activities includes income eamed from fundraising events and Ifading activities to raise funds for the charity. Income Is received In ex¢hange lor supplying goods and services in order lo raise funds and is recognised when entitlement has occurred. Investment income is earned through holding assets lor Investment purpose5 such as shares and bank deposit accounts.11 includes dividends and intere51. 11 Is included when the amount can be measured reliably. 34
MYAWARE NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 31 MARCH 2025 ACCOUNTING POLICIES- continued Grants Government grants are recognised al the tsir value ol the asset received or receivable when there is reasonable assurance that the charity will comply with conditions attaching to them and the grants will be received using the accrual model. Debtors Other debtors are recognised at the settlement amount due. Prepayments are valued at the amount prepaid. Expenditure Liabilities are recognised as expendrture as soon as there is a legal or conslructive obligation commilling the charity lo that expenditure. il is probable that a transfer of economic benefrts will be required In settlement and the amount of the obligation can be measured reliably. Expenditure is accounled for on an accruals ba51s and has been classified under headings Ihal aggregate all c051 related lo the category. Where costs cannot be directly attributed lo particular headings they have been allocated to activities on a basis consistent with the use of resources. Irrecoverable VAT s Charged as a ¢osl against the activity for which the expenditre was incurred. Allocation and apportlonment of support costs and governance Resources expended are allocated to the particular activity where the cost relates dire¢tly lo that a¢livity. However, the c0510l overall d1Ction and administration on each activity. Including the salary and overhead Costs of the gèneral office and regional slaff, Is apportioned on the following bases which are an estimate. based on staff lime, of the amount attributable to each activrty.. Percentsge allocation 11° 74°/. 1 S'/0 Research Support Awareness Intangible fixed assets Amortisalion 15 calculated so as lo write off the cost of an asset, less Ils eslimaled SidUal value. over the useful economic l)fe of that asset as follows.. Computer sofvare- over 3 years slraighl line Tangible fixed assets Depreciation is provided al the following annual rates in order to write off each asset over ils eslimaled useful life. Fixtures and fittings Computer equipment 20°/o on cost 33°/o on cost Tangible fixed assets are slated at cost or deemed ctssts less accumulated deprecialion. Cost includes costs c*irectfy allribulable lo making the asset capable of operating as Intended. Individual fixed assets costing £500 or MO are caprtalised al $1. Investments Snvestmenls are valued al market value which is deemed lo be fair value. Movements in market value are reflected in the slalernenl of financial activities as a net gainlllossl. Stocks Stocks are valued at the lower of c051 and nel realISab value, after making due a15owance for obsolete and slow moving items. Stock is valued on a fir51 In fiTsI out basis. Taxation The charity is exempl from corporation tax on its charitable aclwilies. 35
MYAWARE NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 31 MARCH 2025 ACCOUNTING POLICIES- continued Fund accounting The charitable company has both restricted and unrestricted funds. All funds are used lo benefit and promote Ils charitable objects. Reslricled funds are those donated for use in J particular area orfor specific purposes, the use of which is reslri¢led to that area or purpose and the restriction means that the funds can only be used for spe¢ifi¢ projects or activities. en donors specify that donalitsns and grants are for particular purposes which do not amount to pre-conditions regar(Sing enlillemenl. Ihis Income is included in incoming resources of re51ricled funds when receivable. The retevant expenditure is then matched as restricted expenditure. Unrestricted funds are general funds that are available for use al the trustees, discretion in furtherance of any objectives of the charity. Designated lunds are unrestricted funds sel aside al the dIsCli0n of the trustees for specific purposes. Pension costs and other post-retirement benefits The Gharilable company operates J defined contribution pension scherne. Contributions payable lo the charitable company's pension scheme are chaiged lo the Slalement of Financial ActiVs1ies in the period to which they relate. Operating lease agreements Rentals applicable Its operating leases where substantially all of the benefits and risks of ownership remain wrth the lessor are charged lo the SOFA on a slrawhl line basis over the period ol the lease. Reserves The charitable company mainlains a level of reserves required lo lulfil ils objectives. The Iruslees monitor reserves al regular meetings. Financial instruments Financial instruments are classified and accounted for. according lo the substance of the contractual arrangement. as either financial as5els, financial liabilities or equity Instruments. An equity instrument Is any contract thal evidences a sIdual Interest in the assets of the company after dedv¢ling all of its liabilities. DONATIONS AND LEGACIES 2025 2024 Donations Legacies In Mernoriam 94,618 40,034 49.971 86.887 856.054 29,301 184,623 972.242 The charity benefits greatly from the involvement of many helpers and volLknteers, deta11s of which are given In our annual report. In a¢¢ordance with FRS102 and the Charrties SORP IFRS1C121, the economic contribution of volunteers 15 not recognised in these financial 51alemenls. 36
MYAWARE NOTES TO THE FINANCIAL STATEMENTS - Continued FOR THE YEAR ENDED 31 MARCH 2025 OTHER TRADING ACTIVITIES 2025 2024 Affinity programmes Appeals Collections Corporatè Grants Lotteries National events Regional events Sales of merchandise Trusts 1,119 19,498 292 2.Q69 11,782 2,825 4.946 31.629 3.147 15,063 26.400 4.375 17.SOO 41,620 S,081 23,308 69,647 3,724 11.650 183,483 119,736 INVESTMENT INCOME 2025 2024 Deposit account inteTesl Current account interest Dividends on shares and olher Investments 69.685 4.578 6,766 76,693 3.234 6.495 81,029 86,422 RAISING FUNDS Raisin9 donations and legacies 2025 2024 Merchandise Events Appeal mailings Lollery 5,129 4,057 774 1,731 3,308 6,454 1,331 1,562 11,691 12,655 CHARITABLE ACTIVITIES COSTS Direct Costs (see note 81 Support costs Isee note 91 Totals Research Support Awareness 176,422 594,543 94,564 19,456 130,882 26,530 195.878 725,425 121 094 865,529 176,868 1,042,397 37
MYAWARE NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 31 MARCH 2025 DIRECT COSTS OF CHARITABLE ACTVIITIES 2025 2024 Staff costs Medical research Medical care Travel and miscellaneous MyNews & member communications Meetings and COnferenS 563,161 114,475 157,331 22,136 5,884 2,542 520.898 317,424 7,682 28,626 3,669 1,094 865,529 879,393 GTants payable during the year were as follows.. 2025 2024 Commitments as at 1 April 2024 Commitments made in the yeaf Commitments released in the year Grants paid during the year 505.511 259.123 356,612 316,970 1225,5011 1168.0711 Cornmilmenls as al 31 March 2025 539.133 505.511 SUPPORT COSTS Governance costs Management Totals Research Support Awareness 17,384 116,942 23,704 2,072 13,940 2,826 19,456 130,882 26,530 158,030 18,838 176,868 Support Costs. in¢luded in the above, are as follows. Management 2025 Total activit1è5 2024 Total activities Research Support Awareness Rental of premises Ulililies and insurance Office equiprnenl Printing, postage and stationery Photocopier cos15 Support website IT support & Soare H R Costs General expenses Bank charges Amortisalion of intangible rixed as5els Depreciation of18ngible fixed assets 1,653 1,142 576 973 11.123 7,678 3,877 6,543 2,255 1,556 786 1,326 15,031 10,376 5.239 8,842 14,948 18,391 2.793 9,603 825 24,964 53,657 19,281 5.771 1,235 81 2,974 S,697 2,922 995 126 $46 20,008 38,325 19.656 6,692 846 111 4,056 7,769 3,984 1,356 171 738 27,038 S1,791 26,562 9,043 1,143 3,023 245 1.648 334 2,227 2,241 17,384 116.942 23,704 158,030 156,732 38
MYAVVARE NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 31 MARCH 2025 SUPPORT COSTS- continued Governance costs 2025 Total activities 2024 Total a¢livili&s Research Support Awareness Truslees, expenses AudilDrs' remuneration Legal and professional fees 273 1,331 468 1,833 8,954 3,1S3 372 1,815 639 2.478 12.100 4,260 4.537 8.810 6.008 2,072 13,940 18.838 19,355 10. NET INCOMEIIEXPENDITUREI NÈt incomellexpendrturel is slated after chargingllcredilingl.. 2025 2024 Auditors, remuneration Depreciation owned assets Computer software amortisalion 12,100 2,227 8,810 2,241 3,023 11. TRUSTEES, REMUNERATION ANO BENEFITS There were no Iruslees, remuneTalion or other benefits for th& year ended 31 March 2025 nor for the year ended 31 March 2024. Trustees, expenses 2025 2024 TTUStees' expense5 2,478 4.537 During the year 4 Iruslees12024.' 41 received reimbursement of their expenses for attending meetings lolalling £911. The ¢har9e for 2025 includes accommodation, meeting room hire and meals I refreshments for Iruslee meetings of £1,56712024 £1.2771. 39
MYAWARE NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 31 MARCH 2025 12. STAFF COSTS 2025 2024 Wages and salaries Social security costs Other pension cos15 495.164 41,408 26,589 456,502 37.158 27,238 563,161 520,898 The average number of full lime equivalent employees dunng the year was 11 12024.'131. The average monthly number of employees during the year was as follows.. 2025 2024 13 Fundraising, support and awareness Managernenl and operation5 of the charity 18 17 Employees receiving emoluments In excess of £60,000. The key management personnel of the charity cornprises the Chief Executive Offi¢er. The total employee benefits of the key management petsonnel of the charity amounted lo £77.511 including pension conlwibulions 12024". £74,658). COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES Unre51rrted fund Reslricled funds Total funds INCOME AND ENDOWMENTS FROM Donations and legacies 960.754 11.488 972,242 Other trading activities Investment income 93,679 86.422 26,057 119.736 86.422 Total 1,140.855 37,545 1,178.400 EXPENDITURE ON Raising funds 12,655 12,655 Charitable activities Research Support Awareness 72.893 518.476 106,886 329,515 26,998 712 402,408 545.474 107.598 Totsl 710,910 357,225 1.068,135 Nel gains on investments 20,105 20,105 NET INCOMEIIEXPENDITUREI 450,050 1319,6801 130,370 RECONCILIATION OF FUNDS Totsl funds brought forward 1.351.414 659.166 2,010,580 TOTAL FUNDS CARRIED FORWARD 1,801,464 339,486 2,140,950 40
MYAWARE NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 31 MARCH 2025 14. INTANGIBLE FIXED ASSETS Computer software COST Al 1 April 2024 9S,007 Al 31 March 2025 95,007 AMORTISATION Al 1 Apnl 2024 Charge for year Eliminated on disposal 95,007 At 31 March 2025 95,007 NET BOOK VALUE At 31 March 2025 At 31 March 2024 15. TANGIBLE FIXED ASSETS Fixtures and fittings Computer equipment Totals COST Al 1 April 2024 Additions Disposals 5,476 15,507 6,942 9,4331 20,983 6,942 9,4331 At 31 March 2025 5,476 13,016 18,492 DEPRECIATION Al 1 April 2024 Charge lor year Eliminated on disposal 5,476 14,006 2,227 9,4331 19.482 2,227 9,4331 Al 31 March 2025 5,476 6,800 12.276 NET BOOK VALUE Al 31 Mar¢h 2025 6.216 6.216 Al 31 March 2024 1,501 1.501 41
MYAWARE NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 31 MARCH 2025 16. FIXED ASSET INVESTMENTS Listed investments MARKET VALUE Al 1 April 2024 Revaluations 241,379 10,1401 Al 31 March 2025 231,239 NET BOOK VALUE Al 31 March 2025 231.239 Al 31 March 2024 241,379 There were no investment assets outside the UK. The historical c05t of fixed asset investments as al 37 March 2025 was £89.85812024. £89,858). 17. STOCKS 2025 2024 Finished goods 4,162 18. DEBTORS: AMOUNTS FALLING DUE WITHIN ONE YEAR 2025 2024 Other debtors Prepaymenls and accrued income 579,917 38,744 807.265 31.270 618,661 838.534 42
MYAWARE NOTES TO THE FINANCIAL STATEMENTS - ¢ontinued FOR THE YEAR ENDED 31 MARCH 2025 19. CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR 2025 2024 Other creditors Commilled grants Accruals and deferred income 1,063 302,321 11,461 26,007 202,079 9,363 314,845 237,449 20. CREDITORS.. AMOUNTS FALLING DUE AFTER MORE THAN ONE YEAR 2025 2024 Commbtted grants 236,812 303.432 21. MOVEMENT IN FUNDS Nel movemenl in funds Transfers between funds Al 3113125 At 114124 Unrestricted funds General fund 1,801,464 1374,5221 1.426.942 Restrlcted funds Research Support Awareness 251,269 67,141 1208.4541 122,7541 9,3631 42,815 44,387 11,713 339.486 240,571 98,915 TOTAL FUNDS 2,140 950 615,0931 1,525,857 Nel movement in funds, included In the above are as follows.. Incoming resources Resources expended Gain$ and losses Movement in funds Unrestricted funds General fund 390,024 1754,4061 110,1401 1374,5221 Restricted funds Research Support Awareness 10,168 46,039 {218,6221 168,7931 {12,2671 1208,4541 122,7S41 9,3631 59,111 299,682 1240,5711 TOTAL FUNDS 44913S 1 054,0881 110,1401 1615,0931 43
MYAWARE NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 31 MARCH 2025 21. MOVEMENT IN FUNDS- continued Comparatives for movement in funds Net movement in funds Transfers between funds Al 3113124 At 114123 Unrestricted funds General fund 1,351.414 450,050 1.801,464 Restricted funds Research Support Awareness 563.262 93.758 2.146 1311.9931 126.6171 18,930 251,269 67,141 21,076 659.166 319,680 339,486 TOTAL FUNDS 2,010.580 130,370 2,140,950 Comparative nel movement in funds, included in the above a as follows.. Incoming iesources Resour5 expended Gains and losses hlovemenl In funds Unrestri¢led funds General fund 1.140,855 1710,9101 20.105 450,050 Restricted funds Research Support Awareness 17.522 381 19.642 1329.5151 126.9981 7121 1311,9931 126,6171 18,930 37.545 357,225 319,680 TOTAL FUNDS 1,178.400 1.068,1351 20.105 130,370 44
MYAWARE NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 31 MARCH 2025 21. MOVEMENT IN FUNDS- continued Restricted lund5 Restricted funds comprise. Research Re51ricled funds in this class will be applied lo.. a. Scientific and clinical research into the causes. disease mechanisms. diagnosis and epidemiology of Myasthenia Gravis. Lambert-Ealon Myasthenic Syndiome, Congenital Myasthenic Syndrome and other similar disorders oflhe Neuro-Mus¢ular Junction. b. The provision of equpmenl and facilit$ lo support lal. c. Provision of specialist medical facilities (including slaffj where the Trustees consider that Such provision has a significant impact on the effectiveness of lal. Support Restrted funds in this class will be applied lo". d. Developrnenl of new support groups of the charity, lo foster the health and welfare of myaslhenics and their families and earers. e. Organisation of Regional Conferences lo en¢ouragè mutual support teiween members, myaslhenics, and support groups. l. In exceptional circurnstances provision of specialist medical facilitps lineluding slaffj where the Trustees consider that such provision would have a major impact on the heatth and welfare of tryaslhenics. and allernalive funding cannot be obtained. Awareness Restficled funds in this class will be applied lo.. g. Preparation. publication and distribution ol inlomalion about Myasthenia Gravis. Lambert-Ealon Myaslhenic Syndrome, Congenital Myaslheni¢ Syndrome and other similar disorders of the Neuro-muscular Junction. Ilncluding information on their causes, diagnosis and treatment, and Issues concerning the lifestyle and quality-of- lrfe ol patients with these disorders). Publication and dislribution includes development and mainlenanGe ol the association's internel websites. h. Publicity and promotion of events lo foster awareness. in the general public. national and local 9Csvernmenl, and other bodies. ol these disorders, and the problems eXrienCed by patients and their families and carers. i. Adbvrties lo foster awareness in the medical profession ol these disorders, and the problems experienced by patients and their families and carers. j. Activities lo foster awareness in the medical profession of the current slate of best medical practice in the diagnosls and trealmenl of these disorders. k. Regional and national events to disseminate Information about these disorders lo myaslhenics, their families and carers (including Information about current and planned future medical and scientific research). For presentation purposes all restricted income receivab ig allocated to one of the above three categories that be51 describes its restriction. A detailed breakdown of the income and expenditure allocated lo these categories is available on request. 45
MYAWARE NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 31 MARCH 2025 22. EMPLOYEE BENEFIT OBLIGA TIONS The lolal contribution paid lo Personal Pension Plans in the year for certain employees amounted lo £24.661 12024. £25, 1671. 23. CONTINGENT ASSET In the previous financial year, the charily was notified of a snleanI unreslricled legacy of which myaware is the sole beneficiary of the residual estate. Probate was granted on 21 November 2023. Inrtial reports indicated Ihst the nel estate at dale of death amount lo £6.953.855. Wflh a residual value to the charity of around £3.5m. The residual value due lo myaware is after specific bequests to beneficiaries including property and chattels which are granted free on Inheran¢t lax. The liuslees recognise the charity's enlitlemenl to the kgacy bul there is uncertair¢ly as lo the amount ol payment due lo myaware in respect of its residual InteSt in the eslale. This UnrtaInty arises due lo" No infoTmalion been received from the executors. solicitors regarding the expected value of the distribution which would provide us wrth a reasonable estimate of the residuary amount due lo the charity. No dislribulions on a¢Unt have been received to dale. The estate al dale of death includes a listed shares portfolio of around £S.3m. The liming of the realisation of this portfolio could have significant effecl on the value lo be distributed. After due consideration. the trustees are of the opinion that the interest of the chanly In thi5 51gnificanl re51dual legacy eannol be measured reliably and therefore should be disdosed as a contingent asset unlil the Cfileria for Income reco9nilion are met. 24. OTHER FINANCIAL COMMITMENTS Al the year end the charity had financial commrtments in sped of ienl amounting to £15.76412024'. £14.0491 and other leases amounting lo £5,280 12024. £2.9041. 25. RELATED PARTY DISCLOSURES During the year. the charity did not pay any salary. benefits, or expense reimbursements lo an employee who is the SPQLJse ol a Iruslee. of which Iheie were none during the year12024." £21.5851. 26. ULTIMATE CONTROLLING PARTY The charity Is controlled by its Board of Trustees. 46