Dyston7"a UK The Dystonia Society A company limited by guarantee Trustees Report & Financial Statements for the year ended 31 March 2025
The Dystonia Society Report of the Trustees for the year ended 31 March 2025 (Incorporating the Directors, Report) Dyston7"a UK Contents Reference and administrative information Report of the trustees 3-21 Independent examinerfs report 22 Ststement of financial activities 23 Balance Sheet 24-25 Statement of cash flows 26 Notes to the financial statements 27-36
The Dystonia Society Report of the Trustees for the year ended 31 March 2025 (Incorporating the Dirertors. Report) Dyston7"a UK Reference and administrative information Charity registration number 1062595 {England and Wales) and SC042127 (Scotland) Company registration number 03309777 Patron Tully Kearney, OBE Trustees and Directors Amit Batla Emily Birden Timothy Gannicliffe Ross Grant Qamar Khan, MBE (Chair from I" April 2024} Antonella Macerollo Sophie Norman Fernanda Perez Penny Ritchie Calder, MBE Robert Semple Secretary Roger Edmonds FCA Independent Examiner Michael Williams ACA 30 Retford Drive Sutton Coldfield B76 IDG Medical Advisers Prof. Mark Edwards Mr. Daniel Ezra Ms. Lucy Hicklin Dr Jean-Pierre Lin Dr. Marie-Helene Marion Dr. Kathryn Peall Prof. Tom Warner Bankers CAF Bank Kings Hill West Malling Kent ME19 4TA Registered Office 3 Floor 89 Albert Ernbankment London SEI P Bank of Scotland 14116 Cockspur Street London SWIY 5B
The Dystonia Society Report of the Trustees for the year ended 31 March 2025 (Incorporating the Dirertors. Report) Dyston7'a UK Objectives & Artivities The trustees, who are also the dirertors of the company. submit their report and the financial statements of The Dystonia Society {"the Sociev) for the year ended 31 March 2025 on the basis of the accounting policies set out in Note I to the fi'nancial statements, and comply with the requirements of Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial reporting Standard in the UK and Republic of Ireland IFRS1021 {effective l January 2015) (Charities SORP. FRS1021. The reference and administrative information on the previous page forms part of this report. Principal Objective The Society, as derived from the objects set out in our Articles of Association, are to promote the welfare of people who living with any form of the neurological movement disorder known as dystonia, or from similar or related conditions and to advance the education of the public about all aspects of the said conditions. Under our operating name of Dystonia 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 UK. About Dystonia UK We are the only national charity dedicated to supporting people living with dystonia across the UK. Dystonia is a neurological movement disorder estimated to affett at least 100,000 people in the UK. It is the third most common movement disorder. Dystonia is caused by incorrect signals from the brain resulting in uncontrollable muscle spasms, which can, for some, be painful. It can affert any region of the body. Oystonia 15 a lifelong condition, which can affect both adults and children, and currently has no cure. There are several treatments available that can help relieve the symptoms and scientists around the world are actively pursuing research toward new therapies. Established in 1983 as The Dystonia Society, by a small group of people living with dystonia, in 2019 we rebranded to become Dystonia UK to better reflect ourgrowing community. For over 40 years we have worked with the dystonia community. never forgetting our founders. aim to support all people living with dystonia. Being 3 patient led organisation is still at the heart of our ambitions today and we currently have 13 local support groups run by volunteers from the community and a membership of 1454 including 11 lifetime members. We remain committed to our mission: "We exist to give hope and support to everyone living with dystonia and to create UK and worldwide awareness."
The Dystonia Society Report of the Trustees for the year ended 31 March 2025 (Incorporating the Directors, Report) Dyston7"a UK Review of Activity During year 2024-25 we have continued to evolve to meet the needs of both members and the wider dystonia community. Developed with and for our community, our strategy sets out what we want to achieve. In response in particular to the 2023 Your Voice Heard survey we committed to further development work of our Strategy. To greater serve the dystonia community, our strategic goals for the year were adjusted and have been: Connect our Community Dystonia UK will create a connected community for people living with dystonia that acts as both a source of support and movement for change. Enhance quality care and support Dystonia UK will ensure 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 information, care, and treatment and has the tools and support to live a good life. Reach Out, Reach All Dystonia UK will reach the whole of the dystonia community across the UK and be an inclusive organisation that is accessible to all. We will ensure that no one who needs our support goes without it. Ensurlng our future We will increase revenue by mobilising all communities affected by dystonia, engaging with individuals, corporations, and organisations to aclerate our progress and maximise the impact we make. The Annual Report of the Trustees for 2024125 is set out under these four strategic goals. Connect our Community We have continued to build a connected, empowered communityfor people living with dystonia- one that offers vital support and drives meaningful change through a wide range of activities. This year, we: Rebuilt connections after Covid-19 through our local support group networks Took awareness to Parliament with an event at the House of Lords Continued our commitments to members Celebrated our community at The Dystonia UK Awards 2024 Delivered direct support through our new Hospital Roadshow initiative Rebuilding and reconnecting after Covid-19 We greatly invested in our local support group network with the appointment of a new Community Project Officer. Thanks to their efforts, several group5 that had not met since before the pandemic resumed their activities. We also boosted group visibility through increased marketing, enhanced our volunteer sUPPOrt resources, and reinstated regular coordinator catch-ups to further build relationships and shared learning across our network.
The Dystonia Society Report of the Trustees for the year ended 31 March 2025 (Incorporatfng the Dirertorf Report) Dyston7'a UK "I really enjoy the social side of being with others with the same copidition,. we ha ve all become friendsl Kent group attendee Taking awareness to Parliament In September, during Dystonia Awarene55 Month. we gathered experts, clinicians. and advocates at the House of Lords for a powerful discussion on how our community can raise its collective voice. This inspiring event helped generate fresh ideas and built momentum for raising awareness as a united community- reminding everyone in the room that dystonia must no longer be overlooked. Championlng members Our membership remained strong throughout the year, with 1,454 individuals standing with us. We continued to keep members connected and informed through Dystonia Matters our magazine available both digitally and in print. Members also played a direct role in shaping our governance by voting on trustee ratifications, ensuring representation and transparency at the heart of our organisation. Celebrating our community We were delighted to host the Dystonia UK Awards 2024 for the third consecutive year. These awards shine a spotlight on the exceptional individuals making a difference within our community. In front of our largest audience yet, we proudly recognised the winners of the Dystonia Superstar Awards (England, Wales, Scotland and Northern Ireland), the Masked Hero Award, and the Popular Podcast Award. New categories this year included the Young Champion. Fundraiserof the Year, and Volunteer of the Year. helping us to celebrate a wider breadth of contributions from across our network. Delivering direct support This year marked the exciting launch of our Hospital Roadshows - a brand-new initiative bringing Dystonia UK into NHS hospitals across the country. Our team visited Salford Royal Hospital (Manchester), The Walton Centre {Liverpool), and Shawbirch Medical Centre (Telford), where we reached patients, clinicians, and the public face-to-face, raising awareness, providing trusted information, and creating meaningful connections with those afferted by dystonia. "You did an excellent job ipp Manchester at Salford Royal Hospital, Dystonia aareeSS was well spread that day. A remarkable eye- catching display and sparkling atmosphere. For some it will be the best day of their li ves because they have discovered Dystonia UK and that the Manchester group exists. ' Elaine, Map7chester group member Wherever our communlty is, we're right there beside them. Together, we are building a stronger. more connected movement for change.
The Dystonia Society Report of the Trustees for the year ended 31 March 2025 (Incorporating the Dirertors, Report) Dyston7"a UK Enhance quality care and support Everyone with dystonia deserves answers, access to effective treatment, and support to live life on theirown terms. This year, we made real progress, taking your voices to policymakers, shaping clinical conversations, and championing research that puts your needs first. This is how we made impact happen: Raised awareness and visibility of dystonia at major clinical events Drove change in national policies and promoted best practice Supported research putting patients at the centre Promoting the needs of the communlty We renewed our investment in attending exhibitions and conferences to raise awareness among medical professionals and industry leader5. Highlights included: Presenting to around 100 clinicians, many of whom specialise in movement disorders, at the British Neurotoxin Network's annual meetin& emphasising the importance of collaboration with patient communities. Guest speaking at the East Hants Primary Care Network meeting, sharing best practice with social prescribers, pharmacists, care coordinators, and youth wellbeing coaches. Our Director of Operations and Development attendingthe Association of British Neurologists conference, in partnership with The Neurological Alliance, sharing early insights from the My Neuro Sur4ey. Exhibiting at several professional events including the annual conferences of the DBS Nurse Association, the Association of British Neurologists Movement Disorder specialist interest group, and the Royal College of Paediatrics and Child Health. hanks so much for attending our meeti9 yesterday-l know the teafft found it really interesting finding out about dystonia. A few cogs turlg regardi patients they see and if dystonia may be something that haS't been considered." Hannah, Digital TransformatiOP7 Lead. East Hants PCAI Inlluencing national polities As the only UK-wide charity representing people living with dystonia. Dystonia UK continues to use its unique position to ensure the voices of those affected are heard at every level of decision-making. During Dystonia Awarene55 Month, we arranged a key meeting with Dr Niran Nirmalananthan, the National Clinical Dirertor of Neurology at NHS England. This provided an important opportunity to discuss the most urgent priorities facing the dystonia community and to advocate for greater recognition and resourcing. We continued our strongsupport forThe Neurological Alliance's#BackThelin6 campaign, which called fora dedicated Neuro Taskforce. That campaign saw a significant success in November. when the new UK Neuro Forum was officially announced. We were proud to attend the celebration of this milestone,
The Dystonia Society Report of the Trustees for the year ended 31 March 2025 (Incorporating the Directors. Report) Dyston7"a UK where our Patron, Tully Kearney OBE. delivered a powerful keynote speech highlighting the lived experience of dystonia. We were also pleased to continue the impart of this work by attending a workshop in advance of the first UK Neuro Forum meeting providing the opportunity for us to share deeper insights. Throughout the year, we shared surveys and promoted policy-related events that offered opportunities for the community to speak up and share eXperienS. A total of 658 people with dystonia completed My Neum Survey. contributing powerful evidence of the need for better seniices. We were also involved in the surrfevs steering group, helping to shape its design and inform the communications Strategi around its findings, ensuring it reflectsthe reality of our communttvs needs. We worked behind the scenes too. Through our membership in over ten alliances and coalitions, we helped shape responses to national consultations, co-signed open letters, and called directly on ministers to invest in neurological research. We also developed and Submitted our own response to the NHS 10-Year Plan, using this as an opportunity to spotlight some of the specific challenges faced by people with dystonia includingthe urgent need for better workforce planning, improved transitions from paediatric to adult care, and stronger integration between seNices. Finally, we took these messages to Parliament. In January. alongside rnernber and Neuro Alliance of Scotland trustee, DK McPhee. we represented the dystonia community at the Neurological Alliance's Parliamentary Neuro Reception. There. we spoke to 35 MPS or their representatives. putting the realities of dystonia front and centre in political conversations. Supporting dystonia research Our research support spans prattical assistan and partnership working to ensure people with dystonia are included in shaping future treatments. We believe research should work forthe dystonia community- and this year, we supported projects that do exactly that. We helped recruit 201 participants for a Manchester Metropolitan Unlversity study developing machine-learning imaging for more targeted botulinum toxin treatment. Remained involved in the British Paediatric Neurology Assotiation's steering group to set Standards for paediatric dystonia medication - improving confidence in care for families and clinicians. Continued our collaboration with students on the Clinical Psychology doctoral course at Lancaster University, most recently promoting a study exploring the use of self-compassion apps in people with neck dystonia. shared a survey from a group of UCL Queen Square Institute of Neurology researchers examining access to physiotherapy services, helping understand barriers and enablers to treatment for our community. We will never stop pushing for better diagnosis, better treatment, and better lives for everyone living with dystonia.
The Dystonia Society Report of the Trustees for the year ended 31 March 2025 (Incorporating the Dirertors. Report) Dyston7"a UK "I felt it was afternoon well spent as the research will ultimately lead to the trainiL7g of more clinicians who understamd dystOk7ia ak7d are able to treat it and the ability of medical professionals to build up a library of images of the neck for each patient so that injections will be more efftctive." Chris, MMIA study participant Reach Out. Reach All We aim to reach the entire dystonia community across the UK. making sure that whoever you are and wherever you live, you can access our support, so no one has to face dystonia alone. This year we took meaningFul action to expand our reach and deepen our impact. We magnified the voices of those living with dystonia on national platforms We expanded and improved how people access vital information and support We ran impactful campaigns to spread the message that Dystonio Motters Magnifying the voice of the community People with dystonia often experience stigma and isolation. Thays why we used our platform to increase understanding and visibility, ensuring the experiences of our community were heard and seen on a national stage. In 2024, our Director of Fundraising and Communications appeared live on BBCBreokfvst, bringing dystonia to millions of viewers. We were additionally featured in The Guordian during Brain Awareness Week, and our digital reach soared with our social media content viewed 302,359 times and 109,074 visitors to our website over the year. These moments helped more people than ever understand what dystonia is- and why support matters. "Well done Dystonia UKI Brilliant job on awareness of dystonia. - Lisa, Online member Enhancing information delivery Our Reach Out Reach All programme continued to modemise how we deliver support and advice, ensuring that our resources remain accessible, inclusive, and available in the format that works best for each person. In-per50n: We met people at Disability Aworeness Day in Warrington and The Brain Charitfs open day, Heod Matters, and continued our local support groups across the UK. These meetups whether strurtured or social create essential spaces for people to share experiences and connect. This year we ran 34 meet ups in 12 counties. In print: We remained committed to physical resources for those who may be digitally excluded. Our Dystonia Matter5 magazine, regular mailings, and the widely distributed What is Dystonia? booklet helped keep the community informed and supported. We additionally
The Dy5tonia Society Report of the Trustees for the year ended 31 March 2025 (Incorporating the Dlrertors, Report) Dyston7'a UK invested more resource into clinical outreach to ensure our materials are distributed to patients more regularly when attending clinics. Online: Our website remained the go-to source for information, with over 109,000 views. We were proud to launch Season 4 of our Dystonio Motters podcast. sharing the real and honest stories from Rebecca, Emma & Gareth and their daughter Hayley, Jason, Mark, Emma, and Lola. Direct support." We SpOnded to 561 support enquiries across phone, email, and post, offering per50nalised guidance to people when they needed it most. toni UK has beep7 a massive support throughout ffty life. If you have dystonia or know someone. I highly recon7mend egagIng with them and get on their newsletter. They offer friendly support to helpful information about the cop7dition." Joe. Forffter podcast guest Amplifying our message In September, we ran Dystonia Awareness Month 2024- a powerful reminder of what our community can achieve when we come together with lived experience, expertFse, and shared purpose. Before the campaign began, we launched a brand-new awareness guide packed with tools and templates to help individuals and supporters spread the word locally, ensuring greater impact from our collective awareness raising. We then launched the month with a reception at the House of Lords, where clinicians, researchers, and industry leaders gathered to explore new waysof raising awareness and improving outcomes. The conversations held there set the tone for a month of attion. Soon after, we joined our incredible #TeamDystoniaUK runners at the Great North Run. Despite the rain, spirits soared as volunteers and supporters cheered them on. Every step taken and every pound raised helped amplify our cause. Local meetups in the North East, Oxford, Kent, and Lancashire & Fylde showed the importance of peer support. These event5 offered safe, welcoming spaces for people to connect, share, and feel understood. We continued our advocacy momentum going- meetingwith Dr Niranjanan Nirmalananthan, National Clinical Director for Neurology at NHS England, and speaking at the British Neurotoxin Network meeting in Oxford to highlight issues of access and collaboration. The month ended on a high note with The Dystonia UK Awards 2024, celebrating the remarkable individuals who inspire and support our community. A standout moment was our Patron, Paralympic Gold Medallist Tully Kearney OBE, sharing her journey to double gold in Paris 20241 Throughout the month, and every day of the year, we are proud to Stand with and for every person Ilving with dystonia.
The Dystonia Society Report of the Trustees for the year ended 31 March 2025 (Incorporating the Directors, Report) Dyston7"a UK Ensuring our future We are building a resilient, sustainable org3nisation. That means investing in people, partnerships, and infrastructure, and working hand in hand with our community to maximise impact and accelerate progress. This year we: Invested in new roles and infrastrutture Worked with our community and partners to raise vitsl funds Advocated for greater awareness through national collaborations Increased recognition of our organisation across sectors Investing in our organisation We established new roles, including our Community Project Officer, which is helping us to develop and grow our support services, volunteer capacity and outreach work. We created a new Communications Officer role and recruited a new Fundraising Officer bringing additional capacity to the team. We develop staff skills through regular training and this year updated our Induction training to ensure new members of the team are supported in their success. Our d1CtorS took part in advanced Safeguarding training and attended the Charity Times Leadership conference. Ensuring that our team can best support our community. this yearthey attended training on Neurodiversity and to reduce the effects of stress in the workplace we introduced new quarterly Mental Wellbeing sessions. A remuneration review, benchmarked our current charity salaries against those in other similar sized charities across the sector, taking into account specific roles and responsibilities and making changes as relevant to ensure the charity is a competitor in the sector. Necessaryequipment upgrades included updated laptops for some staff providing the team with the tools they needed to carry out their work. We also deepened our investment in volunteering, beginning development of a volunteer strategy, reinstating coordinatorcatch-ups, creating new event roles, and recruiting an Office Admin Volunteer. Finally, we proudly welcomed our new Chair, Q Khan MBE, who brings deep experience and passion following his work as a Dystonia UK Ambassador. "I love atteding events where I can get the word out about dystonia. I recetlY helped a pharmaceutical company in Chester with Dystonia IAK to show the employees how their products affect the patients and to answer questions about my experiences with botulinum toxin injections.- Mdrgie. Events Volunteer io
The Dystonia Society Report of the Trustees for the year ended 31 March 2025 (Incorporating the Dirertors. Report) Dyston7'a UK Worklng together to fundraise Once again, our amazing community played a huge and highly valued role in raising funds to 5UStain our essential services. We raised a fantastic £35,451 through community fundraising and events. Our Team Dystonia UK runners, including our patron Tully Kearney, OBE, raised all important awareness at the TCS London Marathon. 10 runners also took to the streets of Newcastle. raising £5,579 through the Great North Run. Our 3 runners. the winner of the Dystonia Superstar Award (England). Manoli, alongside Ryan and Mark in memory of Ryan's son Bailey, also took on the Royal Parks Half Marathon raising £3019. Members of the community also took on some of their own incredible fundraising challenges including the K2B walk raising £2600. Our Fundraiserof the Year, Lola. ventured into the Peak district and having complete a rather impressive 16 miles of walking also raised £710.16 Encouragingly, we have seen strong growth across several other income streams Facebook fundraising has increased by 233%, donations by 59%, and money raised by groups by 43%. We continued to raise funds through sales of eye-catching merchandise and were pleased to achieve sales of £2041. Our Spring raffle raised over £1.140 and we were encouraged to see so much engagement from our community. We are grateful to our corporate partners for their sUPPOrt with prizes. We loved joinin8 The Research Club's final networking night of the year, raising awareness and all important funds for Dystonia UK. Huge thanks to Tara and Bob in particular for their supportl Our members continue to extend support to the wider community, raising £34,240 through their generous subscriptions and donations. We are especially grateful too to those who chose to remember us in their wills through legacy gifts. "Dystola UK helped me in so ways. from telling me that my family and l aren't alone, to supporting me with setting up ffty fundraising event. the 7th of August 2024, 1 left my house and my plan was to do a 15 mile walk 7 hours. but it ended up 16.41 miles in S hours 6 minutes.- Lola, Dystonia UK Fundraiser of the Year 2024 Collaborating for success We continued to build strong partnerships across national networks including The Neurological Alllance, The Neurological Alliance of Scotland, Wales Neurological Alliance. Northern Ireland Neurological Charities Alliance, National Voices, The Alliance Scotland, Medical Technology Group. 5pecialised Health Care Alliance and Disability Benefits Consortium to champion the needs of the dystonia community and influence decision makers. We deepened our relationships With Phamiaceutical and Medical Tech companies to further advance outcomes for the dystonia community. We were delighted to attend Medtronic's annual conference and welcomed the opportunity for our Director of Fundraising and Communications along with Dystonia UK member, Margie, to speak at Ipsen Phamiaceutical's annual conference on improving access to botulinum toxin services. We also worked with a number of leading specialist clinical groups including the Association of British Neurologists Movement Disorder specialist group, DBS Nurse Association and British Neurotoxin li
The Dystonia Society Report of the Trustees for the year ended 31 March 2025 (Incorporating the Directors. Report) Dyston7"a UK network - we are thankful to all of the professionals supporting our involvement in these groups for helping to further our cause. As well, we greatly appreciate the support of our medical advisorygroup and wider medical networks. We continued to work with our Patron and Ambassadors and are grateful for their ongoing commitment to use their platforms to improve awareness of dystonia. We were especially grateful to Tully Kearney OBE, who spoke at both The Neurological Alliance AGM and our Awards ceremony, sharing her story of double gold in Paris. Special thanks to Teresa for sharing her story during our BBC Breakfast appearance, and to all who used our Awareness Raising Guide to support our message: Dystonia Matters. Strengthening our visibility We expanded our presence at professional events and exhibitions, invested in clinical outreach, and deepened connections through the launch of our Hospital Roadshow initiative. Additionally we sent out monthly e-new51etters and used our social media platforms and website to share updates on our work. These activities strengthened our visibility and reinforced our role as a trusted advocate for the dystonia community. Dystonia UK has stood beside the community for over 40 years - and we're building the future to stand strong for decades to come. Impact Our Year in Numbers". We estimate 340 people attended one of our meet ups, accessing direct support local to them. We reached 141 people through the launch of our Hospital Roadshows initiative. 9 winners were celebrated at The Dystonia UK Awards 20241 We reached over 400 professionals and members of the public through exhibition stands at conferences and events raising vital awareness. 658 people living with dystonia took part in My Neuro Survey. We reached at least 29,449 people through our BBC Breakfast interviewl Our Dystonia Awareness Raising guide was viewed 426 times. Our Info Hub, a digital source of information resources received 1,685 visits. 30 volunteers supported our work! 12
The Dystonia Society Report of the Trustees for the year ended 31 March 2025 (Incorporating the Directors. Report) Dyston7'a UK Activlties mapped against Dystonla UK'S objectlves Enhance quality care and support Activity Connect our community Reach Out, Reach All Ensure our future Local 8UPPOrt group meet ups The Dystonia UKAwards 2024 Hospital Roadshow initiative Dystonia Matters magazlne Dystonla Matters podcast Dlgital & printed Info resources Dystonla UK Membership Dystonia Awareness Month Parliamentary afternoon tea Attending exhibitions & conferenc8S Promoting My Neuro survey 13
The Dystonia Society Report of the Trustees for the year ended 31 March 2025 (Incorporating the Directors. Report) Dyston7"a UK Activities mapped against Dystonia UK'S objectives Enhance quality care and support Activity Connect our community Rea¢h Out, Reach ' Ensure our future Partnerships with alliances Consultatlon responses & lobbyingwork Supporting research projects Press & medla work Responding to enquiries Awareness raislng guide Clinical outreach E-news and social media presence Investments In staff and Infrastructure Supporting fundraislng 14
The Dystonia Society Report of the Trustees for the year ended 31 March 2025 (Incorporating the Directors, Report) Dyston7a UK Activities mapped against Dystonia UK'S objectives Enhance quality care and support Activity Connect our community Reach Out. Reach All Ensure our future Collaborating with medical groups Partnershlps with pharma and med techs Engagement with Patrons & Ambassadors Our Future Plans Together with our community, we will continue to build on the progress we have already made. As the only national charity supporting people living with dystonia, we recognise the need to prioritise carefully how our limited resources are used. Our focus will remain on the services and activities that deliver the greatest impatt for the dystonia community. We will amplify our service delivery through targeted investrnent and new projects. By designing and delivering information resources across a variety of formats {including print, digital and in-person) we will ensure our materials are relevant, inclusive and accessible to the whole dystonia community. We will continue to grow our network of support groups, and by increasing volunteer recruitment and strengthening volunteer resources, we airn to expand our influence and impact in local communities. We will focus on core operations to ensure people living with dystonia, health professionals and the public receive timely, high-quality 5UPPOrt. This indudes investment in our infrastrurture and IT Systems to increase resilience and responsiveness. Through our Hospital Roadshow initiative we will extend our reach. deepen our understanding of the needs of the dystonia community across the UK. and ensure our information and 5UPPQrt services are delivered where they are most needed. At the same time, we will continue to build our medical network and enhance our clinical outreach via events and partnerships. In research, we will develop our strategy further and create more opportunities for people living with dystonia to become involved. Partnering with universities and through our new Research Network. we will sUPPOrt research that matters to our community. We will continue to 'Reach Out, Reach All, through targeted activities including those developed to better support people recently diagnosed with dystonia. We will continue to support our members 15
The Dystonia Society Report of the Trustees for the year ended 31 March 2025 (Incorporating the Directors, Report) Dyston7"a UK through Dystonio Motters magazine, listen to their feedback and ensure their insights shape our services. People's stories will remain atthe heartof our communications, and we will use our plafform to magnify their voice5. We will increase public awareness and understanding of dystonia through trusted information and national campaigns, including Dystonia Awareness Month. We will continue to work strategically with our lobbying work. Through collaboration with coalition organisations such as The Neurological Alliances. we will harness the strength of the wider neurological community to ensure dystonia is recognised and understood by policymakers. We will celebrate our community and supporters, enhancing how we thank. involve and engage them, while focusing on increased income generation to sustain and expand our work. Above all, we will continue to be there for everyone in the dystonia community. Financial Review Reserves The trustees feel it is prudent to maintain the Sociews general unrestricted reserves at a level sufficient to cover commitments such a5 property rental, creditors and other liabilities and to reflett the relative uncertainty of income and potential restrictions on its use. The level of resenies 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 2023/24 and 2024/25, the trustees reviewed The Dystonia Socievs reserves policy and designated £410,OIJ) from unrestrirted reserves in 2024. The Board have reviewed this designated reserve and judge that it is appropriate to maintain it in 2024125. The level of unrestritted and undesignated reserves at 31st March 2025 represented 45% of unrestritted expenditure in the year {2024 43%}. Certain grants and donations received by the Society are given with for specific projetts or initiatives. Restricted funds held in respect of these activities are carried forward if they are unspent or uncommitted. At 31st March 2025, funds of £144,216 were carried forward {2024: £157.315). Investment Policy Trustees reviewed the Charitys Investment policy in October 2023. Trustees agreed that their priorities for investing surplus funds are to earn a reasonable return at low risk while being able to access funds immediately if needed. Trustees approved using a combination of CCLA'S COIF Charitres Deposit Fund Ilow-risk money market investments via the UK'S leading specialist Charity Fund Manager) and bank deposit facilities to invest legacy income when received. 16
The Dystonia Society Report of the Trustees for the year ended 31 March 2025 (Incorporating the Directois. Report) Dyston7'a UK Structure. Governance and Management The Society is a company limited byguarantee and is registered with the Chartty Commission (Number 10625951 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 Dystonia Society is vested in the trustees. each of whom is a member of the Society. All decisions are made by the board of trustees, and at the present time no sub-committees are in operation. Existing trustees encourage potential trustees to standforelection to maintain an appropriate balance of skills and experience. Where specific skills are needed the recruitment of potential trustee5 may be expanded to look beyond the current membership. Where there are more candidates than vacancies, 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*lettion each year. If lessthan a third of thetrustees are due for re-election, then those nearest to the expiry of their term stand for re-election. Trustees serve for a maximum of three terms. A trustee may be appointed by the Board if a vacancy becomes available during the financial year and the trustee would then stand for re-election at the year end. The maximum number of trustees is twelve and the minimum is three. All trustees are given a programme of induction and training. Further training is available when required and relevant. Staff The board delegates operational planning and day-ttrday 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 Development. This authority is delegated within approved limit5. The Chair of the Board oversees the SLT'S performance through reports and briefings. The SLT presents report5 at board meetings and as part of the planning and budgeting process. The Chair of the Board carries out the appraisals forthe SLT annually, on behalf of the board. The chair can involve another trustee in this appraisal work should they wish. The SLT are supported by a small team of staff. They are a highly motivated team, dedicated to the needs of people with dystonia. We have found that hybrid working is a viable and efficient way of working as it allows staff to work flexibly and adapt appropriately to the needs of the organisation. Some trustees are more actively involved than their8overnance duties, supporting additional working groups, developing information and support and finance and administration. We are very grateful for this additional 5UPPOrt. Remuneration policy The trustees have responsibility for setting the pay and remuneration of the charitvs key personnel and this is done on an annual basis, including a formal cost of living review. Salaries are benchmarked with other similar organisations acr05S the settor. 17
The Dystonia Society Report of the Trustees for the year ended 31 March 2025 (Incorporating the Dirertors. Report) Dyston7'a UK Membership Membership of the organisation is governed by our Articles of Association. Subscribers to the Memorandum and individuals or organisations admitted by the Board of Trustees in accordance with the Articles are recognised as members of the Company and are recorded in the register of members. Full Membership Individuals and organisations may apply for full membership using the form prescribed by the Board of Trustees. The Board has full discretion to accept or decline membership applications and is not required to provide reasons for its decisions. The Board may also establish criteria for membership, though meeting such criteria does not automatically entitle an applicant to membership. Where a member represents an unincorporated association or body, the register will reflert this representation. The association or body may nominate a replacement representative at any time bv notifying the Company. without requiring a new application form or notice from the outgoing representative. Corporate members must appoint an individual to repsent them at meetings of the Company. They may change their representative at any time by notifying the Company. Associate Membership The Board of Trustees may also establish classes of associate membership. Associate members are not members of the Company for the purposes of the Articles or the Companies Acts. The Board determines the rights, obligations, and subscription requirements for each class of associate membership and has discretion to admit or remove associate members in line with agreed regulations. Membership Records We comply with the requirements of the Companies Acts and the Charities Art 1993 in maintaining a registerof members and keeping accurate membership records. In accordance with these obligation5, we also ensure proper maintenance of financial records. the audit or independent examination of our accounts, and the timely preparation and submission of annual reports, annual returns, and statements of account to both the Registrar of Companies and the Charity Commission. Risk The trustees identify and review the major risks to which the Society is exposed and have established appropriate systems to anticipate further risks that may arise. The trustees consider that implementation of agreed actions and procedures will significantly reduce the probability and impart of these risks. Principal risks & uncertainties The most recent review identified the key risks to be financial and external. Financial risks relate to our ability to achieve sufficient income to maintain financial sustainability and meet our commitments. External risks centre on our ability to meet seniice needs, particularly where these are influenced by factors beyond our control. It was recognised that our financial risks are largely mitigated by expected legacy income. The Society undertakes careful monitorine of projected cash flows and reserve levels to ensure it can meet its financial responsibilities. External risks are mitigated through detailed strategic planning and informed decision-making. We continue to review our staffing strurture to ensure we have the right organisation, capacity, and capabilities in place to deliver our ambitious plans. 18
The Dystonia Society Report of the Trustees for the year ended 31 March 2025 (Incorporating the Dlrertors. Report) Dyston7"a UK Public Benefft The trustees have referred to the Charity Commission's guidance on public benefit, and the Euidance "Meeting the Charity Test" published by the Office of the Scottish Charity Regulator, when reviewing their aims and objectives, and planning the Sociews future activity. 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 law and United Kingdom Accounting Standards (UK Generally Accepted Accounting PrattFce {UK GAAP)}. Company law requires the trustees to prepare financial statements for each financial year. Under that law the trustees have elected to prepare the financial statements in accordance 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: Select suitable accounting policies and then apply them consistently. Observe the methods and princtples in the Staternent of Recommended Practice"Accounting and Reporting by Charities-. Make judgements and estimates that are reasonable and prudent. State whether applicable UK Accounting Standards have been followed, subject to any material departures disclosed and explained in the financial statements. Prepare the financial statements on the going concern basis unless it 15 inappropriate to presume that the charitable company will continue in business. The trustees are responsible for keeping adequate accounting records which are sufficient to show and explain the charitable compan5 transaciions and which disclose with reasonable accuracy at any time the financial position of the charitable company and enable them to ensure that the financial statements comply with the Companies Act 2006. the Charities and Trustee Investment (Scotland) Act 2005, the Charities Accounts (Scotlandl Regulations 2006 and the charitys constitution. They are also responsible for safeguarding the assets of the charitable company and hen 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 information of which the charitable companvs independent examiner is unaware. The trustees have taken all steps that they ought to have taken to make themselves aware of any relevant information and to establish that the independent is aware of that infomiation. The trustees are responsible for the maintenance and integrity of the corporate and financial information included on the charitable companvs 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 accordance with the special provisions for small companies under Section IS of the Companies Act 2006. 19
The Dystonia Society Report of the Trustees for the year ended 31 March 2025 (Incorporating the Dirertors, Report) Dyston7'a UK Thanks While it's impossible to name every individual and organisation who has contributed to our work this year, we want to express our sincere appreciation to all who have supported us. We are so grateful for your commitment. In particular, we would like to recognise: Our Patron & Ambassadors We are incredibly fortunate to work alongside a group of dedicated individuals who help raise awareness of dystonia and inspire others to get involved. Special thanks to: Tully Kearney, OBE • Gemma Stevenson Ella Middleton Our Staff & Volunteers A sincere thank you to the Socievs staff team and volunteers. Their dedication, loyalty and commitment to our cause continues to drive our progress and impact. Our Medlcal Network We're especially grateful to our medical advisory group and the wider network of professionals who have generouslygiven theirtime and expertise throughout the year. Yoursupport remains a vital part of our work. Our Members & Donors Thank you to everyone whojoined or renewed their membership with Dystonia UK in 2024-25. Every member helps us amplify our voice and extend our reach. We're also truly thankful to all those who have made a donation - your generosity fuels our mission. Those who remernbed Dystonia UK in thelr Will Legacy gifts have once again made a transformative difference, accounting for more than half of our income. We are deeply grateful to everyone who chose to leave a gift in their Will, helping to ensure we can continue supporting those affected by dystonia for years to come. Our Fundraisers A huge thank you to the individuals and groups across the UK and beyond who have taken on fundraising challenges and activities. Your creativity and enthusiasm bring both vital funds and awareness to our cause. Charitable Trusts & Foundations We remain grateful for the continued support of the charitable trusts and foundations who fund our work. Your backing is invaluable. Companies and other organisations Our thanks also go to our corporate supporters and partner organisations. Your contributions and collaborative efforts play a crucial role in helping us deliver our goals. 20
The Dystonia Society Report of the Trustees for the year ended 31 March 2025 (Incorporatlng the Directors, Report) Dyston7'a UK Approval This report was approved by the Board of Trustees on 12 November 2025 and signed on its behalf by.. Qamar Khan, MBE Chair of Trustees 21
The Dy5tonia Society Independent Examinerfs Report to the trustees of The Dystonia Society ('the Compan) Dyston-'a I report to the charity trustees on my examination of the accounts of the Company for the year ended 31 March 2025. Responsibilities and basls of report As the charivs trustees of the Company land also its directors for the purposes of company law) you are responsible for the preparation of the accounts in accordance 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 16 of the 26 Act and are eligible for independentexamination, I report in respect of my examination of your charitys accounts as carried out underthe Charities Act 2011, s1451'the 2011 ACYI. In carrying out my examination I have followed the Direcbons given by the Charity Commission under s145151{b) of the 2011 Art. Independent examinerf$ statement Since the CoMpanS gross incorne exceeded £250.LXX) your examiner must be a member of a body listed in s145 of the 2011 Act. I confirm that l am qualified to undertake the examination because l am member of the Institute of Chartered Accountants in England and Wales, which is one of the listed bodies. I have cornpleted my examination. I confirm that no matters have come to my attention in connection with the examination giving me cause to believe that: 11) accounting records were not kept in respect of the Company as reqUId by section 386 of the 2tK)6 Act; or 12> the accounts do not accord with those records. or 131 the accounts do not comply with the accounting requirements of section 396 of the 2(Ki6 Act other than any requirement that the accounts give a 'true and fair view which is not a matter considered as part of an independent examination: or 141 the accounts have not been prepared 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 accordance with the Financial Repornng Standard applicable in the UK and Republic of Ireland IFRS 102). I have no concerns and have come across no other matters in connect?on with the examination to which attention should be drawn in thTs report in order to enable a proper understanding of the accounts to be reached. Michael A Williams ACA., Chartered Accountant 30 Rerford Drive, Sutton Coldfield. West Midlands, B76 IDG Date: 22
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The Dystonia Society Balance sheet at 31 March 2025 Dyston7'a UK Notes 31 Matth 2025 31 March 2024 Non-curr•nt ass•ts Tangible fixed assets Investment in subsidiary company Current •sxts Debtors Cash at bank and in hand 233,557 540,928 774,485 l(Kl,455 636,559 737,014 Cr•ditorJ: arnounts falhng du• wlthin on• y•ar io 152.421) (34,720) Net ¢urr•nt as•ets 722,064 702,294 N•t •M•ts 722.065 702,295 R•pr•Mnted by General funds Designated funds Total unrnstrictod funds Restricted funds 167,849 410,IM) 577,849 IH,216 134,980 410,C 14 157.315 Total fund• 12 722.065 702.295 The Trustees are satisfied that the Charitable Company is entitled to exemption from the provisions of the Companies Art 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 sectron 476 of the Act. The Trustees acknowledge their responsibilities for ensuring that the charitable company keeps adequate accounting records which comply with section 386 of the Art, and preparing financial statements which give a true and fair view of the state of affairs of the charitable company as at the end of the financial year and of its results forthe financial year in accordance with the requirements of settions 394 and 395. and which othenhiise 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 Companies under Part 15 of the Companies Art 2)6. 24
The Dystonia Society Balance sheet at 31 March 2025 Dyston7'a UK Qamar Khan, MBE Chair of Trustees Robert Semple Treasurer Company Registration Number: 03309777 The notes on pages 27- 36 form part of these financial statements. 25
The Dystonia Society Statement of cash flows for the year ended 31 March 2025 Dyston7'a UK 2024 N•t incom•/{•xp•nditur•) u p•rth• st•t•m•nt of finandal •thits•s Adjustments for Depreciation char8es Interest f rom investments Ilncrease)/decrease in debtors Increaselldecrease) in creditors N•t c•sh 8•n•r•t•d l(uMd) in op•rntinz acllvlt 19.770 371.071 {14,668) (133,1021 17,701 {110.299) 18,918) 153,976) 13,376 32L559 Ca¥h tlow¥ from InvestlnK •ctlviti•s Interest from investments Net eash provided by/lus•d in) Inv•llng acllvlll•# 14.668 8,918 8.918 N•t 1ncr•ae/{d•cre•j In ¢a8h and ¢•*h •qulvthnts Cash and cash equivalents at the be8inning of the year Calh •nd ¢•Jh •quival•nts at the •nd of th• year (95.631) 636559 540.928 330.4n 306,082 636,559 Ch•ck total 540.928 636,559 26
The Dystonia Society Notes to the financial statements for the year ended 31 March 2025 Dyston7'a UK l. Accounting policles a) Basis of preparation of financial statements The financial statements have been prepared in accordance with Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporttngstandard applicable in the UK and Republic of Ireland IFRS 102) (effective l January 20151, the Companies Act 2fX)6 and the Charities and Trustees Investment (Scotland) Act 2005. The Charity constitutes a public benefit entity as defined by FRS 102. The accounts include the balances and transactrons of 30 of the SocietVs support groups. The preparation of the financial accounts requires the Societvs management to make reasonable and prudent judgements, estimates and assumptions that affett 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) Intome Income is received by way of grants. donations and subscriptions. The income from fundraisin8 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 receNes donations of goods and serrfices in kind and where there is a measurable material value to the Society, which can be ascertained with reliability, they are included as both income and expenditure. Equipment given for use by the Society is included as a donation at estimated value when received. Legacy income 15 included in the period in which it is received. or, if earlier, the period in which the Society receives confirmation of entitlement and arnount. 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 grants are credited to incoming resources on the date they are received orwhen they are receivable, unless they relate to a specific period, in which case they are deferred. c) Expenditure Expenditure is recognised on an accruals basis and includes VAT whlch the charity cannot recover. Direct expenditure on charitable activities is allocated to the Socievs objectives in five streams of work. Support costs are allocated to each of the charitable activities (and to the associated restricted funds) based on staff salary costs. Costs of raising funds relate to expenditure incurred in approaching and facilitating people and organisations to contribute financially to the SOCIes work. Grants payable are accounted for when paid or when the Society has, by communicating a commitment, created a valid expectation that it will make future payments. Those costs shown as governance relate to the management of the Socievs assets, organisational administration and compliance with constitutional and statutory requirements. 27
The Dystonia Society Notes to the financial statements for the year ended 31 March 2025 d) Pension contributfons The Society makes contributions to defined contribution personal pension schemes held by employees. Contributions are a percentage of gross salary and are charged to the same restricted or unrestricted funds, and in same the accounting periods. as the related salary costs. Dyston7a UK e) Tanglble fixed assets Items of equipment are capitalised if their cost exceeds £l,tKKI and if they have an expected useful life of more than two years. Depreciation is then charged at a uniform rate over that life. fj Operating leases Rentals applicable to operating leases where substantially all the benefits and risks of ownership remain with the lessor are reflected in the Statement of Financial Attivities on a straight-line basis over the period of the lease. g) Fund accountlng Restricted funds are to be used for specific purposes as stated by the donor. Expenditure which meets these criteria is charged 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 restrirted to any specific activity. h) Flnancial instruments The charity On has financial assets and financial liabilities of a kind that qualify 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 account has not been prepared as the figures comprising net income for the year shown in the Statement of Financial Activities give the information required under the Companies Act 2(KJ6, together with details of other recognised gains and losses. 28
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The Dystonia Society Notes to the financial statements for the year ended 31 March 2025 Dyston7'a UK stsff costs 2025 2024 Salaries and wages Social security costs Pension contributions 205,430 15,941 8,743 230.114 131,880 8,662 6,808 147,350 Staff employed under service contracts Volunteers Other employment and training costs Total employment and training costs 1,838 16,793 248.745 16,198 163.548 The average number of employees during the year was 5.612024: 3.61 of whom 4.812024: 3.11 were full-time. No employee earned more than £60,000 during the year (2024: nil). The Society contributes to defined contribution personal pension schemes. The assets of these schemes are held separately from those of the Society in independently administered funds. At 31 March 2025. the Society owed £1,404 (2024". £891) to these pension schemes. Trustees, remuneration arKI expenses The trustee5 received no remuneration fortheir service$12024". nil). Three trustees (2023.. four} were reimbursed £826 for travel expenses and other costs (2024: £811). 31
The Dystonia Society Notes to the financial statements for the year ended 31 March 2025 Dyston7a UK Non-currnnt asMts Office equipment and fixtures Cost at l April 2024 Additions Cost at 31 March 2025 22,317 22.317 Depreciation at l April 2024 Chargefor the year Depreciation at 31 March 2025 22,317 22,317 Net book value at l April 2024 Net book valu• at 31 March 2025 Inv•stm•nt in subsidiary Investment in Dystonia UK Ltd 32
The Dystonia Society Notes to the financial statements for the year ended 31 March 2025 Dyston7'a UK Debtors 2025 . 2024 Prepayments Other debtors and accrued income 28,574 204,983 233.557 11,780 88,675 100.455 Cash at bank and in hand 2025 2024 Bank investment accounts Other bank and building society accounts Petty cash and groups 417,885 122,215 828 540.928 446,059 189,017 1,483 636.559 10 Crnditors: Amounts falling du• within on• y•ar 2025 2024 Taxation and social security costs Other creditors Accruals + Deferred Income 5,013 18,507 28.901 52,421 3,805 15,046 15,869 34,720 11 Commitments under operating l•aMs 2025 2024 Office Lease + Service Charge 14,289 12,436 33
Dyston7'a UK 13. Contingent liabilities No contingent liabilities exist as of 31st March 2025 and the date of this Annual Report & Accounts 14. Related party transactions There have been no related partytransactions in the year ending 31 st March 2025 (prior year nil) 35
Dyston7'a UK Dystonia UK is kids and adults with dystonia, carers and clinicians, fundraisers and families, medical professionals and our amazing members and supporters, all working side by side. Dystonia UK 89 Albert Embankment London SEI 7TP 020 7793 3651 www.d stonia.or Dystonia UK is the operating name of The Dystonia Society. The Dystonia Society is registered as a charity in England and Wales (1062595) and in Scotland (SC042127). 36