Dyston7a UK The Dystonia Society A company limited by guarantee Trustees Report & Financial Statements for the year ended 31 March 2024
The Dystonia Society Report of the Trustees for the year ended 31 March 2024 (Incorporating the Directors, Report) Dyston7a UK Contents Reference and administrative infomation Report of the trustees 3-15 Independent examiner's report 16 Statement of financial activities 17 Balonce sheet 18-19 Statement of cash flows 20 Notes to the financial statements 21-29
The Dystonia Society Report of the Trustees for the year ended 31 March 2024 {Incorporating the Directors, Report) Dyston7'a UK Reference and administrative information Charity registration number 1062595 (England and Wales) and SC042127 (Scotland) Compony registration number 03309777 Patron Tully Keamey MBE Trustees and Directors Amit Botla From November 2023 Daniel Berry Until September 2023 Emily Birden From August 2023 Christopher Bradshaw (Chair) Until 31" March 2024 Timothy Gannicliffe Ross Grant Qamor Khan. MBE (Chair) Antonello Macerollo Nick Morgan Sophie Norman Fernanda Perez Penny Ritchie Calder MBE Andrew Russell Robert Semple Katie Wells James Wishart From 1st April 2024 From November 2023 Until June 2023 From August 2023 From August 2023 Until July 2023 Until January 2024 Until September 2023 Secretory Roger Edmonds FCA Independent Examiner Michael Williams ACA 30 Retford Drive Sutton Coldfield B76 IDG hAedical Advisers Prof. Mark Edwards Mr. Daniel Ezra Ms. Lucy Hicklin Dr Jean-Pierre Lin Dr. Morie-Helene Marion Dr. Kathryn Peall Prof. Tom Wamer Bankers CAF Bank Kings Hill West Malling Kent ME19 4TA Registered Office 3rd Floor 89 Albert Embankment London SEI 7TP Bonk of Scotland 14116 Cockspur Street London SWIY 5B
The Dystonia Society Report of the Trustees for the year ended 31 March 2024 (Incorporating the Directors, Report) Dyston7'a UK Objectives & Activities The trustees, who are also the directors of the company, submit their report and the financial statements of The Dystonia Society (he Society") for the year ended 31 March 2024 on the basis of the accounting policies set out in Note I to the financial statements, and comply with the requirements of Accounting ond Reporting by Charities.. Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial reporting Standard in the UK ond Republic of Ireland (FRS1021 (effective l January 2015) (Charities SORP. FRS102). The reference and administrative information on the previous page foms part of this report. Principal Objective The Society. as derived from the objects set OLrt in our Articles of Association. ore to promote the welfare of people who living with any fonn of the neurological movement disorder known as dystonia, or from similar or lated conditions ond to advance the education of the public about all aspects of the said conditions. Under our opercrting name of Dystonio UK. we provide support and information for our community both nationally and locally. We are the only national charity dedicated to supporting people with dystonia throughout the UL Review of Activity Our mission is "We exist to give hope and support to those living with dystonio. Creating UK and worldwide awareness.- During year 2023-24 we have continued in developing the chority to meet the needs of both members and the wider dystonia community. Our goals have been: Reach Out. Reoch All -Providing support and information for people living with dystonia. Your Voice Heard -Influencing national policies and promoting best practice to meet the needs of the dystonia community Ensuring Dystonia Matters -Roising aworeness about dystonia and Dystonia UK Dystonia Research -supporting research ond development for improved treatment and management of dystonio The Annual Report of the Trustees for 2023124 is set out under our four strateglc g001s.
The Dystonia Society Report of the Trustees for the year ended 31 March 2024 {Incorporating the Directors, Report) Dyston7"a UK Reach Out. Reach All -Providing support ond information for people living with dystonia. Dystonia UK is committed to becoming a more equal. diverse and inclusive organisation. We believe this commitment is key to delivering our strategy. and our organisational mission to be there for the whole dystonia community. Our 'Reach Out. Reoch All, programme to improve and modernise the infomation and odvice available for people with dystonia continues to grow ond develop. We oim to make information os accessible as possibleto people by using o variety of different channels-online. in print ond in person. In person - Dystonia Matters Live 2023 was the largest community event for people living with dystonio in the UL The event brought content usually found in our Dystonia Matters magazine to an audience live. The aim of the event was to support people living with dystonia across the UKwith information and to provide on opportunity forthem to connect with others. "ExCellet day, thap7k you so much for organising itl We spoke to others who felt t17e safftel The event was held over 2 days in Newcastle at the end of June 2023. we hosted around 200 people - a mixture of odult and children with dystonia, fomily & friends. carers. and professionals. On our 'Main Stage. we hosted an assortment of sessions including interactive workshops. panel discussions and presentations. Our'Acoustic Stage. was the setting for more informol sessions including live demonstrations. film screenings and deep dive workshops. We had 24 sessions and in total 33 patient & professional speakers. -what a fabulous eL/ent, thank you to eVeryoe in ippvolved and all the ama2ing speakers such open and honest event." We olso included a 40th anniversary party where we celebrated with our success and impact over the years with members of the community at an 80s themed paty. We continued to run our local support groups across the country with the support of volunteer group coordinators. With o mix of content. some induding more formal speaker sessions and others more social, these small meet ups provide the opportunity for people to share experiences. meet others with dystonia and to find out more obout dystonia. In 2023-24, we ran 24 meet ups in 6 counties. Online- Our website continues to serve as the primary source of information for people looking for information about dystonio with over 209.000 views across the year. Since the launch of our Info Hub in early 2023. we hove had 1956 views also. Through our website we were also able to release recordings from Dystonio Matters Live 2023. with the first recording 'IOO.000 voices, receiving neady 300 views.
The Dystonia Society Report of the Trustees for the year ended 31 March 2024 (Incorporating the Dirertors, Report) Dyston7'a UK Our webinors enable people to access up to date information without the need to attend conferences or in-person events. Where people can access these in real time there is also an opportunity to put questions to our experts. They are also availoble on our website and YouTube channel to view later. This yeor. we hosted o further 4 in the 'Reach Out Reach All, series reaching 1000 views and attendees: Get involved with research Your Questions Answered with Dr Marie-Helene Morion Your Questions Answered with Dr Miles Humberstone Your Questions Answered: Dystonia and the cerebellum -This webinar has been outstanding. I feel so much more positive. The support out there is ama2ing!- (Attendee of 'Your Questions Answered with Dr Miles Humberstone) In our Dystonia Matters Podcosts. people with dystonia and their families can share their stories in their own words os well as offering useful tips fortheir listeners. During 2023 we released Series 3 featuring Tajana. Beccy. Katie and Claire and we began releasing Series 4 in 2024 with stories from Rebecca. Hayley. Jason and Mar In print- We continued our commitment to producing printed moterials to reach those in particular who could be digitally excluded from informotion and supporL As part of this we distributed our Dystonio bAatters magazine to members 3 times across the year with updates on activities. reseorch and news & stories from the community. We also sent out over 1000 of our 'What is dystonia ?' booklet which includes and overview of dystonia symptoms, causes and the different forms and types of dystonia. "Thank you for the amazing booklet on dystonia. My husband who doesn't have dystonia said it was very informative and simple to understand." Additionally. we responded to 561 support enquiries by phone. email and post. Your Voice Heard -Influencing national policies and promoting best practice to meet the needs of the dystonia community. As the only UK-wide charity representing people living with dystonia. Dystonia UK uses its position to ensure your voice is heard. Our policy work and medical network are an important part of helping to raise awareness of dystonio ot governmental and national level to help you get the best possible support. care and treatment. Some of the key work in which we have been involved is summarised below:
The Dystonia Society Report of the Trustees for the year ended 31 March 2024 (Incorporating the Directors, Report) Dyston7'a UK We joined The Neurological Alliance and other member orgonisation representatives at the #BackThelin6 petition hand in. - The parliamentary event was attended by 22 MPS or their representatives. We attended The Brain Charity's parliomentory drop in event to launch their report 'lt's all in your head.. The report focussed on the importance of early diagnosis in neurological conditions and featured o dystonia story. We responded to the Major health conditions strategy call for evidence. We noted neurology has not been included in this, although few neurological conditions such as stroke and dementia have. Our response outtined the importance of including neurological communities particularly in the context of co-existing mental health issues {on area that has been included in the strategy}. We co-signed the National Voices report Vision for the Future of Primary Care. We co-signed an open Letter to Secretory of St(rte for Health and Social Care from Huntington's Disease Association on mental health. NeuroLrfeNow' findings. included experiences of people with dystonia. were used to inform neurology transfomation programmes n(rtionally. influence major Govemment health initiatives and influence healthcare practice. 'NeuroLrfeNow' is a social research platform owned by The Brain & Spine Foundation in collaboration with the Neurological Alliance. We presented to around 100 clinicions. mony of whom specialise in movement disorders. at the British Neurotoxin Network's annual meeting. highlighting the importance of treating non-motor symptoms of dystonio. We were asked to contribute to the updates to the NHS inform {Scotland's equivalent of the online NHS condition page) page on dystonia. We took part as the patient representative in a NICE Scientific Advice project for Tordive Dyskinesia ffD}. Magnifying the voice of the dystonia community is of vital importance. Too often we hear that delays in diagnosis and treatment or support in education and employment are due to a lack of knowledge and understanding of the condition in its manyfonns. Our members provide valuable support by responding to surrfeys and giving their personal stories to provide evidence forthe need for change. Throughoutthe year we have publicised surveys and policy related events to provide opportunities to magnify the voice of our community. We are members of more than 10 organisations working together on issues that will improve lives for people living with dystonia.
The Dystonia Society Report of the Trustees for the year ended 3 1 March 2024 (Incorporating the Directors, Report) Dyston7"a UK Ensuring Dystonia Matters Raising owareness about dystonio and Dystonia UK It's been 40 years since Dystonia UK was first founded. and the importance of raising awareness of dystonia is still one of our most important goals. 'What is dystonia?. is more than just a question on repeot for our community. It impacts the time to diagnosis, access to treatment and increases stigma and isolation. As part of our mission to combat this every September we run Dystonio Awareness NAonth in the UK with the aim to roise as much awareness of dystonia in the general public and across health services. During this month: Our social media content was seen 75.175 times There were 9846 views of our'what is dystonia?. mini onimation We hod 10.000 visitors to our website We spoke to 30 MPS or their representatives at Houses of Parliament 733.731 subscribers were reached through an article in The Telegraph We presented to around 100 injertors at the British Neurotoxin Network meeting Outside of this awareness raising never stops and we continuously push with the dystonio matters movement. We were pleosed to support Alliance's ocross the country with their 'Brain Awareness Week. digital campaign. attend the Dystonia Ireland patient day and Brain Charity's Head Matters doy. and also record an interview with the BBC to be aired on BBC Breakfast. For the second year running we hosted the Dystonia UK Awards. Shining a spotlight on our community. our owards applaud outstanding individuals making a difference to the community. We were delighted to announcethe winners of the Dystonia SuperstarAward, Masked Hero Award and Popular Podcast Award and at an awards ceremony held during Dystonia Awareness month where we further combined 40th anniversary celebrations. Dystonia Research Supporting research and development for improved treatment and manogement of dystonia As a small charity. our support of research is often based around patient recruitment, general guidance and support and dissemination activities. We do this to promote research into dystonia research and to ensure that people with dystonia have opportunities to directly contribute to research os patients or by shoring their own experiences. In oddition to this. when we have funds available. we will support projects with a financial contribution. We currently hold funds for research into blepharospasm will be reviewing how best to utilise these funds when resources allow. Every yeor we endeavour to support o wide range of support studies thot focus on different aspects of dystonia. Exomples of attivities we have supported this year ore: Following o pilot study which we funded a couple of years ago. a full study is being conducted by Manchester Metropolitan University with o commercial sponsor. This study is developing computer mochine-leaming oided imaging of
The Dystonia Society Report of the Trustees for the year ended 3 1 K4arch 2024 (Incorporating the Directors, Report) Dyston7'a UK neck muscles to enoble greater accuracy in targeting the correct muscles for botulinum toxin injections. Dystonia UK is supporting this study by publicising the study to recruit the volunteer patients needed for the project. We have partnered with the British Paediotric Neurology Association ond sit on the steering group for o project designed to establish Consensus Standards for the use of medications in paedi(]tric dystonia. We think that in setting these standards. it will help to improve the quality of care for children with dystonia, ond help reassure parents. carers and clinicians alike navigating the dystonia journey that management is on the right track Dystonia UK hos a history of working with students on the Cltnical Psychology doctorol course at Lancaster University to support their research projects focused on the psychological effects of dystonia. We continue our support with the advertising and dissemination of several projects including most recently 'How are coping strategies used and experienced by people with cervical {neck) dystonia?. We supported intemationol research in attending the Dystonia Medical Research Foundation's Intemational Symposium. We were also pleased to share a suNey from a group of researchers in Ireland exomining the use and effectiveness of complementary therapies. such as acupuncture. in focol dystonia. Additionally. we were pleased to support Medtronic's event revealing the latest advances in deep brain stimulation devices including the Brainsense technology. Feedback In 2023 we surveyed our community on theirviews of our current services and future needs in our 'Your Voice Heard. survey. We were pleosed to capture a broad range of responses and to understand how our service users interact with our support. For example. when we asked respondents how sotisfied they were with each of our services, our website and leoflets or booklets performed best with a positive satisfaction rating for each of 82%. We plan to use the full findings to help guide decisions about our future plans and services. We would like to take the opportunity to thank all of the people who took part and shared their views.
The Dystonia Society Report of the Trustees for the year ended 31 Ivlarch 2024 (Incorporating the Directors. Report) Dyston7'a UK Fundraising Despite a challenging landscope for the sector, we have had some great successes throughout the year. This is in part due to the increase in legacy donations os well os the increased revenue associated with Dystonia hAatters Live 2023. Activities of note include.. The London Marathon where our runner raised £2305 The Great North Run where we had 12 runners who raised over £5990 An increase in Dystonia UK members Raising £1020 crt The Research Club's black-tie dinner and dance An increase in support from Trust and Foundations & Corporate sponsors through their support of Dystonio Matters Live 2023 We would olso like to take the opportunity to thank the incredible generosity of people remembering us in their wills through Legacy gifts. Our Future Plans We aim to continue building on whcrt we have achieved over the last few years with a strategy centred on four long term goals: Connect our Community Dystonia UK will create a connected communrty for people living with dystonia that acts as both a source of support and movement for change. We will do this through local support groups. national events. and by building our community of members. Enhance quality care & support Dystonia UK is continually working towards ensuring that no matter who they are or where they come from. everyone living with dystonia receives a timely diagnosis. has access to the best possible infomiation, core. and treatment and hos the tools and support to live a good lrfe. We will continue to deliver improved infonnation resources. support research and collaborate with relevant organisations and networks. Reach Out, Reach All Dystonio UK seeks to reach the whole of the dystonia community across the UK and be an inclusive orgonisation that is accessible to all. We wont to ensure that no one who needs our support goes without it We will aim to achieve this through maintaining a varied offering of support. clinical outreach and increased public events. Ensure our future We will endeavourto increase revenue by mobilising all communities offected by dystonia. engaging with individuals. corporations. and organisations to accelerate our progress and maximise the impact we make. We will strive to accomplish this through campaigns. partnerships and increosed awareness.
The Dystonia Society Report of the Trustees for the year ended 3 1 March 2024 (Incorporating the Directors, Report) Dyston7'a UK Financial Review Our financial position for the year ending 31st Morch 2024 was a surplus of £371.077 compared to a deficit of £8.363 in the previous year. Income was £692,353 12023: £277,412) including £414,380 of legacy income 12023: £37.8921. These exceptionally generous bequests have allowed the Charity to deliver our services. while investing in the future. Expenditure totalled £321.276 (2023: £285.775). This has increased due to higher level of activity (including Dystonia Matters Live) as well as inflation. Fundraising continues to be challenging. but the impact that we have achieved from our new initiatives will. we hope, demonstrate the benefit of grants ond donations. We will continue to promote the welfare of those living with the impact of dystonia and those who support them. To do this, we need to work to ensure that our income streams enoble us to operate at break-even financially without reliance on legacy income. Thetrustees and staff have agreed a budget which assumes improvement in fundraising from charitable trusts, foundations and corporate sponsorship os well as the continued support of our many members and supporters. They will continue to monitor this income closely and to toke action to ensure that reserves are sufficient to ensure that the charity can meet its obligations as they fall due. Reserves The trustees feel it is prudent to maintain the Society's general unrestricted reserves at a level suffi'cient to cover commitments such as property rental. creditors and other liabilities and to reflect the relative uncertainty of income and potentiol restrictions on its use. The level of reserves is reviewed as part of the budget setting process and at Board meetings in conjunction with the trustees, review of the financial position. As the Charity benefited from significant legacy income in 2023124. the trustees reviewed The Dystonio Society's reserves policy and designated £410.000 (total legacy income received in the year) from unrestricted reserves. This designated fund is made up of 2 elements: £350.000 - invested separately post yeor-end to eam additional income and to supportfuture development of our seNices forthe dystonia community, recognising that the Charity's non-legacy income does not currently cover all its expenditure. £60.000-to be used as o reserve for DM Live in 2025 to be released in the 2025126 Financial Year ensure that the event can go ahead as planned. The level of unrestricted and undesignated resenies at 31st March 2024 represented 43% of unrestricted expenditure in the year (2023 97%}. Certain grants and donations received by the Society are given with for specific projects or initiotives. Restricted funds held in respect of these activities are carried forward if they are unspent or uncommitted. At 31st March 2024. funds of £157.315 were carried forword (2023.. £108,764). io
The Dystonia Society Report of the Trustees for the year ended 3 1 March 2024 {Incorporating the Directors, Report) Dyston7'a UK Investment Policy Trustees reviewed the Charity's Investment policy in October 2023. Trustees agreed that their priorities for investing surplus funds ore to eorn a reasonable return at low risk while being able to access funds immediately if needed. Trustees approved using o combinotion of CCLA'S COIF Charities Deposit Fund (low-risk money market investments vio the UK'S leoding specialist Charty Fund Manager} and bank deposrt facilities to invest legacy income when received. Structure. Governance and Management The Society is a company limrted by guarantee and is registered with the Charity Commission (Number 1062595) and with the Office of the Scottish Charity Regulator ISC042127). It is constituted by its Memorandum and Articles of Association. In the event of the insolvency of the Society. members can be asked to pay a maximum of £10 towards any unpaid debt Trustees Control of The Dystonio Society is vested in the trustees. each of whom is a member of the Society. All decisions ore made by the board of trustees. and at the present time no sub- committees are in operation. Existing trustees encourage potential trustees to stand for elettion to maintain an appropriate balance of skills and experience. Where spectfic skills are needed the recruitment of potential trustees moy be exponded to look beyond the current membership. Where there ore more candidotes than vocancies, trustees are elected by the members at an AGM or by a postal ballot Trustees serve for a three-year term and then stand for re-election. A minimum of a third of the trustees stand for re-election each year. If less thon a third of the trustees ore due for re-election. then those nearest to the expiry of their term stond for re-election. Trustees serve for a maximum of three terms. A trustee may be appointed bythe Board if a vacancy becomes available during the financial year and the trustee would then stand for re-election ot the year end. The maximum number of trustees is twelve and the minimum is three. All trustees are given o programme of induction and training. Further training is ovailable when required ond relevant. Staff The board delegates oper(rtional planning ond day-to-day management of the charity to the Senior Leadership Team {SLT). supported by the Chair of the Board. The SLT is formed of the Director of Fundraising and Communications and the Director of Operations and Developrnent. This authority is delegated within approved limits. The Chair of the Board oversees the SLT'S performance through reports and briefings. The SLT presents reports at board meetings and as part of the planning and budgeting process. The Chair of the Board carries out the oppraisols forthe SLT annuolly. on behalf of the board. The chair can involve another trustee in this appraisal work should they wish. The SLT ore supported by a small team of st(3ff. They are a highly motivated team with dedication to the needs of people with dystonia. We have found that hybrid working is a viable and efficient way of working as it ollows staff to work flexibly and adapt li
The Dystonia Society Report of the Trustees for the year ended 31 March 2024 (Incorporating the Directors. Report) Dyston7'a UK appropriately to the needs of the organisation. Some trustees are more octively involved than their govemance duties. supporting in work in responding to enquiries. developing information and support and finance and administration. We are very grateful for this additional support. Risk The trustees identify and review the mojor risks to which the Society is exposed and have established appropriate systems to anticipote further risks that may arise. The trustees consider that implementation of agreed actions ond procedures will significantly reduce the probability and impact of these risks. Principal risks & uncertainties The most recent review identvfied the key risks to be an Income and financial risk, namely our ability to achieve sufficient fundraising and therefore maintain financial sustoinability and People risk. namely our ability to avoid bumout while delivering planned activities. It was recognised that ourfinancial risk will be mitigated by significant legacy income. The Society undertakes coreful monitoring of its projected cash flows ond levels of reserves so that it can meet its finoncial duties. And our people risk will be mitigated by onboarding of new staff. We continue to review our staffing to ensure we have the right organisotion. capacity and capabilities to deliver our ambitious plans. Public Benefit The trustees have referred to the Charity Commission's guidance on public benefit, and the guidance "Meeting the Charity Test" published by the Office of the Scottish Chority Regulator. when reviewing their oims and objectives. and planning the Society's future attivity. 12
The Dystonia Society Report of the Trustees for the year ended 31 March 2024 (Incorporating the Directors, Report) Dyston7'a UK Statement of trustees, responsibilities The trustees {who are also directors of the Society for the purposes of company law} are responsible for preparing the Trustees. Report and the financial statements in accordance with applicable low and United Kingdom Accounting Standards {UK Generally Accepted Accounting Practice (UK GAAPII. Company low requires the trustees to prepare financiol stotements for each financial year. Underthat law the trustees have elected to prepare the financial statements in accordonce with UK GAAP. Under company law. the trustees must not approve the financial statements unless they are satisfied that they give a true and fair view of the state of affairs of the charitable company and of the surplus or deficit of the charitable company for that period. In preparing those financial statements, the trustees are required to: Selett suitable accounting policies and then apply them consistendy. Observe the methods and principles in the Statement of Recommended Practice "Accounting and Reporbng by Charities-. Make judgements and estimates that are reosonable and prudenL State whether opplicable UK Accounting Standords have been followed. subject to any material departures disclosed ond explained in the financial statements. Prepare the financial statements on the going concem basis unless it is inappropriate to presume that the charitoble company will continue in business. The trustees are responsible for keeping adequ(rte accounting records which are sufficient to show and explain the charFtable company's transactions and which disclose with reasonoble accuracy ot any time the financial position of the charitoble company and enable them to ensure that the financial statements comply with the Companies Act 2006. the Charities ond Trustee Investment {Scotlandl Act 2005. the Charities Accounts (Scotland) Regulations 2006 and the charity's constitution. They are also responsible for safeguarding the assets of the charitable company and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities. In so far as the trustees are aware: There is no relevant informotion of which the charitable cornpany's independent examiner is unaware. The trustees have taken all steps thatthey oughtto have taken to make themselves aware of any relevant information and to establish that the independent is aware of that infonnation. The trustees are responsible for the molntenance and integrity of the corporate and financial information included on the charitable company's website. Legislation in the United Kingdom governing the preparation and dissemination of financial statements may differ from legislation in other jurisdictions. Small company exemption This report has been prepared in occordance with the special provisions for small companies under Section 15 of the Companies Act 2006. 13
The Dystonia Society Report of the Trustees for the year ended 31 March 2024 {Incorporating the Directors, Report) Dyston7'a UK Thonks It is sadly not possible to thank every single person or organisation who has supported us, but we hope they are all aware of our huge gratitude. We would like to take the opportunity to give particular thanks to our outgoing Chair. Chris Bradshaw. for the time. dedication and commitment he made to Dystonia UK during his time as both a trustee and Chair. Additionally. we would like to thonk: Our Patron & Ambassadors We're privileged to work with many individuals who help us by increasing awareness ond encouraging others to support us. Our special thanks go to: Tully Kearney. MBE Gemma Stevenson Ella Middleton Our Staff & Volunteers We are very grateful indeed to the Society's stcrff team and volunteers. Their loyalty ond commitment is invaluable. Our Medical Network We would like to thank our medical advisory group ond other professionals who have attended meetings during the year and supported our work. They have donated both their time and expertise which is much appreciated by our members. Our hAembers & Donors Thank you to everyone who joined Team Dystonia UK or renewed their membership in 2023-24. The more members we have. the biggerthe difference we can make and we are appreciative for all of your supporL We are also grateful to everyone who supported us with a donation this year. Those who remembered Dystonia UK in their Will Once again. legacies were extremely important to our charity with the gift5 we received representing more than half our income. We are enormously grateful to all those people who remember Dystonio UK with a gift in their Will allowing the charity to continue its work and support people living with dystonia. Our Fundroisers Thank you to all the groups and individuals across the UK and beyond for your efforts to raise funds. Charitoble Trusts & Foundotions We continue to value the generous support of all the grant makers that support Dystonia UK. Componies and other organisations The contribution of our corporate supporters and partnership work remains vital to our success. 14
The Dystonia Society Report of th rustees for the year ended 31 March 2024 (Inco orating the Directors, Report) Dyston7a UK Approv This re ttsbe rt was approved by the Boord of Trustees on 12 November 2024 and signed on Qam Chair Khan. MBE Trustees 15
The Dvstonia Societv Independent Examinerfs Report to the trustees of The Dystonia Society I'the Compan} Dyston a UK I report tothe charity trustees on myexamination of the accounts of the Company forthe year ended 31 March 2024. Re5ponslbilities and basis of report As the charItS trustees of the Company (and also its direttors for the purpose5 of company lawl you are responsible for the preparation of the accounts in accordan with the requirements of the Companies Act 2006 {'the 2006 ACY). Having satisfied myself that the accounts of the Company are not required to be audited under Part 16of the2006Actandare eligible forindependentexamination, I report in respect of myexamination of yourcharivsaccountsascarried outunderthe Charities Act 2011,s145('the2011AcYI. In carry out my examination I have followed the Directions given bythe Charity Commission under s14515)(bl of the 2011 Art. Independent examinerfs statement Since the Companrfs gross income exceeded £250.OOOyour examiner must be a member of a bodv listed in s145 of the 2011Act. I confirmthatl am qualified toundertake the examination because l am member of the Institute of Chartered Accountants in Engknd and Wales, whith is one of the listed bodie5. I havecompleted my examination. I confirm that no matters have come to my attention in connection with the examination givin8 me cause to believe that: (11 accounting records were not kept in re5peLt of the Company as required by settion 386 of the 2(X Act.. or 12) the accounts do not accord with those records; or (31 theaccountsdonot complywiththe accountingrequirements of section 396 of the2006Actother than any requirement that the accountsgive a'true and fairview which is nota mattercon5idered as part of an independent examination; or 14) the accounts have not been ppared in accordance with the methods and principles of the Statement of Recommended Practice for accounting and reporting by charities applicable to charities preparing their accounts in accordan with the Financial Reporting Standard applicable in the UKand Republic of Ireland {FRS 102). I have no concems and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached. Michael A Williams ACA.. Chartered Accountant 30 Retford Drive. Sutton Coldfidd. West Midlands. B76 IDG Date: I, AZ 16
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The Dystonia Society Balance sheet at 31 March 2024 Dyston7'a UK Notes 31 M•rch 2024 31 March 2023 Non-curr•nt au•ts Tan&4ble fixed assets Investment in subsidiary company Curr•nt a**•ts Debtors Cash at bank and in hand 100,455 636,559 737.014 46,479 306,082 352,561 Cr•dltors.' amounts falllng du• wfthln on• y•ar io {34,7201 121,3441 N•t ¢urr•nt •M•ts 702,294 331,217 N•t •sxts 702,295 331.218 R•prnMnt•d by General funds Desi8nated funds Totsl unr•stri¢t•d funds Restricted fvnds 134,980 410.1)Xi 544.980 157,315 222,454 222.454 108,764 14 Tot•1 fund• 12 702,295 331.218 The Trustees are satisfied that the Charitable Company is entitled to exemption from the provisions of the Companies Act 2006 {the Act) relating to the audit of the financial statements for the year by virtue of section 477. and that no member or members have requested an audit pursuant to section 476 of the Act The Trustees acknowledge their responsibilities for ensuring that the charitable company keeps adequate accounting records which comply with section 386 ofthe ACL and preporing financial stcrtements which give a true and fairmew of the state of affairs of the charitoble company os at the end of the financial yeor and of its results for the finoncial year in occordonce with the requirements of sections 394 and 395. and which otherwise comply with the requirements of the Act relating to financial statements. so far as applicable to the charitable company. These financial statements have been prepared in accordance with the special provisions for Small Componies under Port 15 of the Companies Act 2006. 18
The Dystonia Society Bal nce sheet at 31 March 2024 Dyston7a ar Khan. MBE of Trustees Robert Semple Treasurer Company Registration Number. 03309777 The notes on pages 20 to 29 form port of these financial stcrtements. 19
The Dystonia Society Statement of cash flows for the year ended 31 March 2024 Dyston7"a UK 2024 2023 N•t incom•/(•xp•nditur•) •# pw th• stst•m•nt of fin•net•l *ctlvrli•8 Adjustments for Depreciation charges Interest from investments Ilncreasel/decrea5e in debtors Increase/ldecreasel in creditors N•t c•$h 8•n•r•t•d /(us•d) in opernling athitxs 371,077 (8,364) {8,9181 153,9761 13,376 321,559 11,383) {28,9531 1,494 (37,2061 C•$h tlows from Invutln8 aCtlvit• Interest from investments Purchase of equipment Net ea¥h provid•d by/(uMd in) Inv•stin8 •¢tlvfti 8,918 1,383 8.918 Net Incr••M/(d•cr••s•) In e•¥h and c•¥h •quiv•hnts Cash and cash equivalents at the be8innin8 of the year C•¥h •nd u•h •quival•nts •t th• •nd ofth• yur 330,477 306,082 636,559 (35,823) 341,905 Ch•ek total 636.559 306,082 20
The Dystonia Society Notes to the fi nancial stotements for the year ended 31 March 2024 Dyston7'a UK l. Accounting policies al Basis of preparation of financial statements The financial statements have been prepared in accordance with Accountin9 ond Reporting by Charities: Statement of Recommended Practice opplicable to chorities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102} (effective l January 2015), the Companies Act 2006 and the Charities and Trustees Investment {Scotland} Act 2005. The Charity constitutes o public benefit entity as defined by FRS 102. The accounts include the balances and transoctions of 30 of the Society's support groups. The preparation of the finoncial accounts requires the Society's management to make reasonable and prudent judgements, estimates and assumptions that affect the amounts reported for assets and liabilities as at the balance sheet date and the amounts reported for income and expenses during the year. These judgements are detailed in these accounting policies. b) Income Income is received by way of grants. donations and subscriptions. The income from fundraising ventures is shown gross in the period in which the event occurs. with the associated costs included in costs of raising funds. From time to time the Society receives donations of goods and services in kind and where there is a measuroble material value to the Society. which can be ascertained with reliability, they are included as both income and expenditure. Equiprnent given for use by the Society is included as a donation at estimated value when received. Legacy income is included in the period in which it is received. or, if earlier, the period in which the Society receives confirmation of entitlement ond amount. If there is uncertainty as to the amount and timing of payment the legacy is not recognised as income. but disclosed as a contingent asset Subscriptions are included in the accounts in the year in which they are received. Revenue gronts are credited to incoming resources on the dote they ore received or when they ore receivable. unless they relate to a specific period, in which case they ore deferred. c) Expenditure Expenditure is recognised on an accruals basis and includes VAT which the charity cannot recover. Direct expenditure on charitable octivities is allocated to the Society's objectives in five streams of work. Support costs ore allocated to each of the charitable activities (and to the associated restricted funds) based on stoff salary costs. Costs of raising funds relate to expenditure incurred in approaching and facilitating people and organisations to contribute financiolly to the Society's work. Grants payable are accounted for when paid or when the Society has, by communicating o commitment. creoted a valid expettotion that it will make future payments. 21
The Dystonia Society Notes to the financial statements for the year ended 31 March 2024 Dyston7"a UK Those costs shown as govemance relate to the manogement of the Society's assets. orgonisationol administr(rtion and compliance with constitutional and statutory requirements. dl Pension contributions The Society makes contributions to defined contribution personal pension schemes held by employees. Contributions are a percentoge of gross salary and are charged to the some restricted or unrestricted funds. and in same the accounting periods. as the related salary costs. e) Tangible fixed assets Items of equipment are capitalised if their cost exceeds £l.000 and if they have an expected useful life of more than two yeors. Depreciation is then charged crt a uniform rate over that life. f) Operating leases Rentals applicable to operating leases where substantially all the beneffts and risks of ownership remoin with the lessor are reflected in the Stotement of Financiol Activities on a straight-line basis over the period of the lease. g) Fund accounting Restricted funds are to be used for specific purposes as stated by the donor. Expenditure which meets these criterio is chorged to the fund. Designated funds are unrestricted funds earmarked by the trustees for specific purposes. Unrestricted funds are donations and other incoming resources receivable or generated for charitable purposes, in line with the objects of the Society. but not restricted to any specific activity. h) Financial instruments The chority only hos financial assets and financial liabilities of a kind that qualrfy as basic financial instruments. Basic financial instruments are initially recognised at transaction value and subsequently measured at their settlement value. Income and expenditure account A separate income and expenditure occount has not been prepared as the figures comprising net income for the year shown in the Statement of Financial Activities give the infomotion required under the Companies Act 2006, together with details of other recognised gains and losses. 22
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The Dystonia Society Notes to the financial statements for the year ended 31 March 2024 Dyston7'a UK Staff costs 2024 2023 Salaries and wages Social security costs Pension contributions 131,880 8,662 6,808 147,350 133,537 8,957 7,11 149,594 Staff employed under service contracts Other employment and trainin8 Costs Total employment and training costs 16,198 163,548 10,512 149.594 The averoge number of employees during the year was 3.6 (2023: 4.1) of whom 3.1 were full-time. No employee eamed more than £60.000 during the year {2023: nil). The Society contributes to defined contribution personal pension schemes. The ossets of these schemes are held separately from those of the Society in independently administered funds. At 31st March 2024. the Society owed £891 (2023." £827) to these pension schemes. 6 Trustees. remuneration and expenses The trustees received no remuneration for their seniices 12023: nil). Four trustees (2023: two) were reimbursed £811 for travel expenses and other costs (2023: £249). Non-curr•nt assots Office equipment and fixtures Cost at l April 2023 Additions Cost at 31 March 2024 22,317 22,317 Depreciation at l April 2023 Chargefor the year Depreciation at 31 March 2024 22,317 22.317 Net book value at l April 2023 Net book v•lu• at 31 March 2024 Inv•strn•nt in subsidiary Investment in Dystonia UK Ltd 25
The Dystonia Society Notes to the fi nancial statements for the year ended 31 March 2024 Dyston7"a UK Debtors 2024 2023 Prepayments Other debtors and accrued income 11,780 88,675 100,455 10,087 36,392 46.479 Cash at bank and In hand 2024 2023 Bank investment accounts Other bank and building society accounts Petty cash and groups 446,059 189,017 1,483 636,559 187,354 117,039 1,689 306,082 10 Credltors: Amounts falling du• wlthin one y•ar 2024 . 2023 Taxation and social security costs Other creditors Accruals 4 Deferred Income 3,805 15,046 15,869 34,720 3,122 12,426 5,796 21,344 11 Commitm•nts und•r opernting leas•s 2024 2023 Office Lease + Service Charge 12,436 21,690 26
The Dystonia Society Notes to the financial statements for the year ended 31 March 2024 Dyston7'a UK 13. Contingent liabilities No contingent liabilities exist as of 315t March 2024 and the date of this Annual Report & Accounts 14 Related party transactions There have been no related poty transactions in the year ending 31st March 2024 (prior yeor nill. 28
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