Company number: 04974832 Charity number: 1102391 (England and Wales) Charity number: SC040607 (Scotland) 2024 - 2025 Table Of Contents 1. OUR YEAR IN REVIEW 2024-25 Pg 3-4 2. REFERENCE AND ADMIN DETAILS 3. OBJECTIVES AND ACTIVITIES 12 4. STRATEGIC PLAN 13 5.SERVICES 14-19 6. HEALTHCARE 20-24 7. RESEARCH 25-31 8. FUNDRAISING AND COMMUNICATIONS 32-37 9. FINANCIAL REVIEW 38-43 10. STATEMENT OF TRUSTEES RESPONSIBILITIES 44-45 11. INDEPENDENT AUDITOR'S REPORT 46-49 12. STATEMENT OF FINANCIAL ACTIVITIES 50-53 13. NOTES TO THE FINANCIAL STATEMENTS 54-63 14.THANK YOU 64 OUR YEAR IN REVIEW 2024-25 During 2024-25 we made significant progress in developing our services to meet the needs of the ataxia community. We employed Ataxia UK'S first Specialist Ataxia Nurse, who is expanding our support service across the NHS South West region, helping people to navigate the NHS and access the best possible care. Demand for our Helpline and Advocacy Services continues to grow, and we are proud to have supported more people than ever before, across a wider range of issues. A particular highlight of the year was meeting supporters face to face at our three roadshows, held in the capitals of the devolved nations. The warm feedback we received at these events, both about the events themselves and the wider work of Ataxia UK. was hugely encouraging. Our other major focus during the year was to support the progress of the first drug, omaveloxolone, towards approval for the treatment of Friedreich's ataxia through the UK regulatory system. The welcome news that the drug was granted a licence for sale in England and Wales came in April 2025. However, we were disappointed to learn that the drug has been withdrawn from the NICE evaluation process. resulting in further delays to its availability. This decision sets our agenda for the year ahead. Working in the rare conditions field, we know we are not alone in pressing for NICE to amend its processes to better reflect the needs of rare diseases, particularly those with no approved treatments, and we continue to collaborate with others to achieve this aim. In a challenging economic environment Ataxia UK remained financially resilient thanks to the generosity of our supporters. Legacy income grew significantly, while our successful hosting of the International Congress for Ataxia Research generated sufficient in registrations and sponsorships to create a small surplus. We also strengthened our unrestricted funds and maintained healthy cash reserves, enabling us to continue investing in vital research and services for the ataxia community. Looking ahead, we will continue to strengthen our staff team so that we can deliver on our ambitions and respond to the ever-increasing demands for Ataxia UK'S support in accessing treatment and care, as well as in advancing drug development. We are working closely with neurologists at two hospitals in England with a view to opening Accredited Ataxia Centres in the next 12 months. In parallel, we are developing our new Strategic Plan for 2026 to 2029, in which the establishment of Accredited Ataxia Centres across the devolved nations will be a priority. Finally, we extend our heartfelt thanks to everyone who supports Ataxia UK through fundraising, donating or volunteering. We could achieve nothing without you. We are proud to be a charity governed by people directly affected by ataxia. Sincerely, William Litileboy Chair Sue Millman Chief Executive ..•."*p 4i• * REFERENCE AND ADMINISTRATION DETAILS Trustees & Advisors The charity's registered address is 12 Broadbent Close, London, N6 5JW. The Trustees that served during 2024 - 2025 were: Honorary Officers William Littleboy, Chair Kathy Jones, Honorary Treasurer Trustees Angela Hosie Carol Mccudden Gemma Fish (Retired on 25 Oct 2024) Rachel Harrison Harriet Brown Nathan Hall Olivia Wood David Martin (Joined on 25 October 2024) Prof Barry Hunt (Scientific Advisor to the Board) Susan Millman (Company Secretary and CEO) Ataxia UK uses the following professional advisors: Audltors Limited 75 ￿a￿gr.￿ Road West Hampstead London NW6 2EG Bankers Barclays Bank PLC PO Box 96 82-84 High Street Epsom KT19 8BH HR Consultants NEST Bentley House North Heath Lane Horsham West Sussex RH12 5QE Solicltors Bates Wells & Braithwaite London LLP 2-6 Cannon street, London EC4M 6YH Structure, Governance & Management Ataxia UK is a company limited by guarantee. incorporated in England and Wales on 25 November 2003, a registered charity in England and Wales (number 1102391) and a charity registered in Scotland (number SC040607). It is governed by its Memorandurn and Articles of Association, adopted on 25 November 2003. Ataxia UK is managed by a Board of Trustees, which sets strategies and policies. All the Trustees have a connection to ataxia either through having a diagnosis themselves or having friends or family with the condition. Under the articles of association of the charity, Trustees are nominated for election by the Friends of the charity. comprising beneficiaries affected by ataxia and others interested in the welfare of those affected by ataxia. Prospective Trustees have an interview with current Trustees before standing for election to be nominated by Friends. Trustees may remain in post for four years and then re-stand for a second term. New Trustees are invited to an induction session with the CEO and the Chair(s) of the Board of Trustees before their first Board Meeting. The Meeting covers the Ataxia UK constitution, including the objects of the charity; the legal duties of trustees," our Code of Conduct and Conflicts of Interest policies; Ataxia UK'S finances- the current strategic plan; aims and objectives, and the internal structure of the charity. New Trustees are provided with the Ataxia UK'S Trustee Handbook, which also includes links to the most significant documents on the Charity Commission website. Pay and remuneration for staff is considered annually by a Remuneration Committee, comprising the Chair. Treasurer and one other Trustee. It meets during the budget setting process to review salaries and grading levels, London weighting, incremental payments and inflation rises. The Remuneration Committee is provided with comparative benchmark information relating to similar posts in corresponding organisations to assist with their decision. Ataxia UK is a Living Wage Employer. Public Benefit In compliance with the Charities Act 2011. Ataxia UK has adopted a Statement of Public Benefit as follows- "Ataxia UK is an inclusive organisation which promotes the wellbeing of all people affected by ataxia. We provide information and support services to people affected by ataxia and specialist services for these medical conditions. many of which are not available from the NHS or other statutory or voluntary sources. We work to end isolation and promote engagement in social, educational and leisure aclivities for people affected by ataxia and their families. We educate the broad community and key subsections within it, such as the medical and social services professions, about the effects of ataxia. We also fund vital research projects into potential treatments, aiming to find treatments and cures for ataxias. There is currently no specific government funding for ataxia research. Statement of Equality, Diversity and Inclusion Ataxia UK has also adopted a Statement of Equality, Diversity and Inclusion= "Our vision at Ataxia UK is a world free of ataxia. Our mission is to find treatments and cures for the ataxias and to support everyone affected by ataxia. We will not achieve these aims alone; that's why we consider both those who work for Ataxia UK and Friends (members) we support who are affected, and partners with whom we collaborate, to be critical to our eventual success. Ataxia UK has always been committed to equality of opportunity to ensure all those who work for Ataxia UK, and those we represent. are treated equally, with dignity and respect. We ensure this by creating an environment in which individual differences, and the contributions of all, are recognised. valued. and enabled to enhance everything we do. We seek to ensure that every Ataxia UK campaign, programme and event promotes the principles of equality and diversity, and actively encourages our supporters and partners to share our standards and ambitions of fairness and inclusion. Our aim is to create an environment which is welcoming to all sections of society to enable our staff to be truly representative of our Friends and supporters. Additionally, for each employee to feel respected and able to give their best, regardless of their background and abilities. We encourage and expect the highest possible standards of work and conduct in everyone associated with Ataxia UK; and we recognise that this can only be achieved if the people that work at Ataxia UK feel valued and included. One of our core values is to ensure that everything we do has the needs of people affected by ataxia at its centre. We recognise that our Friends and supporters are people with differing needs, situations, goals and lifestyles. This is why equality and diversity are fundamental to our vision. Removing the barriers that limit access for everyone requires embedding equality and diversity into everything we do. That way, everyone can be confident that Ataxia UK is diverse and inclusive. We are led by people affected by ataxia and ensure that the majority of our Board of Trustees is drawn from the diverse community which is affected by the condition. The Trustees confirm that they comply with their duty to have regard to the guidance on public benefit published by the Charity Commission and the Office of the Scottish Charity Regulator OSCR in exercising their powers and duties. Ataxia UK operates throughout the United Kingdom of Great Britain and Northern Ireland through its network of Branches and Support Groups, which provide activities and support to Friends. 10 We have continued to work in partnership with other organisations with shared interests, principally Genetic Alliance UK, The Neurological Alliance. the Association of Medical Research Charities (AMRC) and Euro-ataxia. Our Chief Executive is the Secretary of Euro- ataxia, a federation of 20 patient organisations from 16 different European countries. The Scientific Advisory Committee (SAC) is a sub-committee of the Board of Trustees and provides independent scientific advice to the Board of Trustees on: Research priorities for Ataxia UK Whether to fund specific research proposals The significance of research developments in related fields for ataxia and the development of novel research approaches The direction and scope of activity of Ataxia UK'S Research staff The quality and progress of research projects funded by the charity The best practice to review grant proposals The most appropriate mechanisms for attracting high-quality research proposals Promoting research in the field of ataxia The SAC comprises the following independent scientific members: Dr Javier Alegre-Abarrategui, Dr Franziska Denk, Professor Helen Dawes, Dr Mark Pook, Professor Keith Morris, Dr Gita Ramdharmy, and Dr Sophie Rowlands. The committee also included the following lay members during the year- Yanita Oparlakova, Harriet Brown, and Nathan Hall. Professor Barry Hunt acted as the Ataxia UK'S Board Scientific Advisor. All members are unpaid volunteers. 11 Employees During 2024-25 the average number of full-time equivalent employees during the year was 19 (with all employees, time involved in providing either support to the governance of the Charity or our charitable activities). Volunteers In addition to the volunteers who function as trustees, many other volunteers play an important part in supporting Ataxia UK. During 2024-25 we have employed several paid interns and offered opportunities to volunteers throughout the charity. They have provided invaluable assistance in our day-to-day work. contributing towards our projects, such as the Ataxia Magazine. We have continued to recruit more committed volunteers. The current economic situation is hitting people with disabilities very hard. We are therefore especially grateful to those who have managed to raise funds for us, those who have donated to our appeals and regular givers, and the very generous support of people who have left bequests to Ataxia UK. We are also grateful to the volunteers who assist us by serving on the Finance Sub-committee, Research Ethics Committee, Scientific Advisory Committee, Medical Advisory Panel, Pharma Advisory Group, and Fundraising and Services Advisory Groups. During the year five trained volunteers supported the Helpline service by answering phone and email enquiries. The contribution of all our volunteers to the work of Ataxia UK is much valued and appreciated. Risk Management As in previous years, the Board actively managed the risks to the charity, focusing on the most serious. We maintain a register of risks and controls and activities to mitigate risk throughout the year,. a register of the most significant risks and their mitigation will be enclosed following further internal review. 12 Objectives & Activities Ataxia UK'S charitable objectives are to 'relieve those persons affected by ataxia,. Many kinds of ataxias have been identified, with varying causes and characteristics. Typically, they are slowly progressive conditions in which initial clumsiness and poor balance and co- ordination can lead to total physical disability. Other symptoms may include problems with speech, sight and hearing. There is currently no treatment for most ataxias, although good progress towards treatments is being made for some. One of our primary objectives is to find Ihe causes of. and suitable treatments and cures for the various forms of ataxia. We do this by promoting and facilitating research in the ataxias, as well as funding research projects. Research grants are made on the basis of proposals from qualified researchers which have been assessed by peer reviewers and evaluated by Ataxia UK'S Scientific Advisory Committee. All projects, where appropriate, have approval from the Ethical Approval Committee local to the lead researcher. People with ataxia want a quick diagnosis that's delivered in a supportive and sympathetic Manner, with the choices of care explained and assistance in accessing them available, if required. They want information about their condition and medical care to enable the management of symptoms. Ataxia UK seeks to improve treatments and care by researching the experiences and requirements of people with ataxia and by developing replicable model solutions to the problems they experience. Our most significant work in this area is the development of Ataxia UK'S accredited Specialist Ataxia Centres: specialist clinics within the NHS that aim to bring together in a 'one-stop shop, all the services needed by someone with ataxia, from diagnosis to the ongoing management of their condition. In the absence of treatments and cures, Ataxia UK recognises the need to provide as many care and support services for people affected by ataxia as our resources will allow. These services comprise all other services for beneficiaries, including information and website services, such as our quarterly Ataxia Magazine, monthly eNewsletter, Helpline services. conferences and workshops on topics of interest, our network of Branches and Support Groups, and our Incontrol project that aims to combat loneliness and isolation within the ataxia community. Raising awareness of ataxia is a fundamental desire of people with ataxia. Ataxia UK is focussing its efforts on improving underslanding of the condition in the NHS, where diagnosis and treatment are often delayed, and also in the social care sector, where an understanding of the condition could significantly improve the situation of people affected by ataxia. 13 Our Strategic Plan Ataxia UK'S Strategic Plan for 2022-25 contains these ambitions". Improve access to specialist, integrated care (including mental health care), treatments and drugs for the ataxias. Faster, accurate diagnosis. Consistently maximise the impact of research activity leading to treatments and cures. Enable greater access to services aimed at improving wellbeing and financial circumstances Our Strategic Plan 2022-25 takes into account the impact of the changes brought about in many areas of life by the Covid-19 pandemic which arrived towards the end of 2019-20, and the current economic climate which is affecting disabled people more than the general public and exacerbating the serious poverty of a small but significant number of people affected by ataxia. Some of the most significant actions we are taking to tneet these objectives are: Establish a peripatetic Specialist Ataxia Nursing Service to accompany patients to appointments and support them in managing all aspects of their care. Continue to develop the Helpline and Advocacy Service and improve the support information held on the website. Revise the Medical Guidelines for the Treatment of the Ataxias and publish the 4th Edition. Increase the patient representation work we undertake in research projects. Increase the number of Accredited Ataxia Centres in the NHS to at least six. Support the drugs approval process in the UK. Utilise the All About Ataxia seminal model to develop other online information seminars. SERVICES ry 15 Highlights Ataxia UK'S Services team helps ensure that no one faces ataxia alone. This year we continued to connect with and support people across the UK through our Helpline and Advocacy services, peer support groups, online events. and in-person community activities. We introduced a new one-day format for our information seminar All About Ataxia, expanded our All About AtaxiaPLUS programme, and held Roadshows in all the devolved nations. As a result, many people attended an Ataxia UK event for the first time. We also hosted a successful Wellbeing Week and delivered more than 30 virtual sessions across the year. Support Groups remained active, providing spaces online and across the UK for people affected by ataxia to connect, share experiences, and reduce isolation by meeting virtually or face to face. We welcomed 744 new Friends this year We worked with 83 volunteers who played a key role across our services, supporting the Helpline and clinics, running groups, and leading sessions online and in person. We also began to review how we evaluate our services to better understand our impact and improve delivery. While some areas. such as website updates and feedback collection, still need work, we made significant progress against our aims and will continue building on this in 2025-26. We continue to provide free, wallet-sized ID cards to help people explain their symptoms if challenged in public, with around 18 requests received each month. 16 Community Connections We continued to bring people together through support groups, events, and virtual sessions. A total of 182 support group meetings were held across the UK (102 in person and 80 online), with 1,554 attendees overall. Ataxia UK staff joined a number of sessions to share updates and advice. We delivered Roadshows in Cardiff, Belfast, and Edinburgh. These events were tailored to each location and included input from clinicians and peer speakers. Around 120 people attended, many for their first Ataxia UK event. The Roadshows helped reduce geographic and financial barriers and supported local connections. A further 139 people joined us online in October for our Annual Virtual Conference. The information seminar All About Ataxia ran three times in its new one-day format, reaching 79 people (up from 63 last year). Average attendance rose to 27, and feedback remains positive. We delivered five All About AtaxiaPLUS sessions on topics including gadgets and adaptations. mental health, and exercise. These sessions had 219 registrations and 125 attendees, with all participants receiving follow-up materials. Across the year we hosted more than 30 virtual activities. Wellbeing Week in February 2025 was a highlight, attracting 197 participants. ,IllV ,111,41 Ik 11 Irr Cardiff Roadshow-April 17 Helpline and Advocacy The Helpline responded to 1,596 contacts from 1.138 individuals, covering 2,164 issues. People contacted us for information, advice and emotional support on a range of topics including diagnosis, care, symptoms. access to services, benefits, grants, employment and more. We introduced a feedback survey in April 2024. Feedback was overwhelmingly positive: "Very helpful, informative and friendly, with practical advice and quick follow-up." 89% said the Helpline was "very helpful" 93% said the information met their needs 96% would recommend the Helpline to others in the ataxia community 'Jessica was helpful, professional and did what she said she would." The Advocacy Service supports people to understand their rights, have their voices heard, and access the services and support they are entitled to. This year we supported 109 individuals and helped secure £11,450 in grant funding and £66,266 in welfare benefits. In addition, we advised on a wide range of issues including NHS access, social care, education, housing, employment, cost of living. driving, holidays. pensions and insurance. Contacts to the Helpline by IssueType Health l Medcal inc. Mental H&iith AtaxiaUK Sermces BerEfits l Grarts l Finance5 228 Infornia￿On l &pFrt)rtl SI￿pOst1n1 221 Ataxla UK . Research IFLmdrai5ilYI Comms ￿ 1 Sttial Care Needsl kk)￿in¢lA￿1s & A(knkxati)ns ￿ 144 Intemational • 26 l)rivngi InwTh￿Ce • 19 Empltwment • 17 EcknCatl￿ 1 8 Parerts l ReN3tiMships 1 5 Lqal 100 200 400 500 600 18 The Gift of Speech We continued to deliver the Gift of Speech programme, which includes our online speech therapy course and access to voice banking via Speakunique for people with ataxia experiencing communication difficulties. Speech Therapy Our intensive online course includes four one-to-one sessions with a speech and language therapist, followed by four weeks of daily group practice in a small group of six participants. Five online speech therapy groups were delivered during the year, supporting 31 people. Two participants did not complete the full programme. Demand for the service remains high, and a waiting list of 19 people is in place. Voice Banking Voice banking involves recording your own voice so that if a person needs to use a communication device in the future. their synthetic voice will sound like them. Ataxia UK funded 49 synthetic voices during the year. A total of 233 people with ataxia have now registered with Speakunique, and 156 have banked their voices so that their synthetic voice is ready to download when they need it. Applications now require diagnosis confirmation and clinical sign-off, with the Helpline managing this process and following up where needed. "It has been a life-changing experience not being able to speak as I developed what is thought to be SCA 27B- rare, like mel I'll be able to talk again, and argue with David-which I'd given up on because it was just too much effort." 19 Looking Ahead We will prioritise improving the information available on our website, making it easier to access and more useful for the ataxia community. We want to secure funding to continue our Gift of Speech project so more people can benefit in the future. "Thank you, thank you, I cannot thank you enough. Not only have you helped me with my speech but the experience as a whole has made such a difference. We developed our own little support group and shared things that no one else would understand, and that meant such a lot to us all, I think. Thanks again for all your help. As I said before, without Ataxia UK I do not know what I would have done." Jenny T We plan to expand access to our Helpline and Advocacy Service by increasing capacity, extending hours and supporting more people with a wider range of issues. We aim to continue delivering high-quality online and in-person events, and to increase the reach and accessibility of these sessions. We will continue developing an evaluation approach to help us measure the impact of our work. We will review our conferences and in-person events and develop a strategy to deliver future events in the most effective and accessible ways for the ataxia community. HEALTHCARE had a kx¥yJ ￿ •KI 8upwL So I >tobo So18abela wa8 11 21 Highlights Specialist Nurse Thanks to partial funding from the National Lottery Community Fund, Ataxia UK is delighted to have appointed a Specialist Ataxia Nurse to work in the South West region of England, an area where patients do not have easy access to established Ataxia Centres. This new role will support people with ataxia, their families and carers to access timely, appropriate specialist care and treatment. A Steering Group supported the development of the service from July 2024. Recruitment was completed in autumn, and Camilla Notley joined the team in January 2025. Her induction was delivered in collaboration with all three Ataxia Centres. The service officially launched in Exeter in May 2025 and is now accepting referrals via the Helpline. Camilla Noiley, our Specialist Aiaxia Nurse has been working closely with the Ataxia Centres in London, Oxford and Sheffield, and has already begun building relationships with local neurologists and healthcare services in the region to support her work. 22 Ataxia Centres Ataxia UK-accredited Specialist Ataxia Centres are centres of excellence, where people with ataxia receive the best quality of care from experts and a coordinated service combining diagnosis, treatment, support and research. There are currently accredited centres for adults and children with ataxia in London, Sheffield and Oxford. Ataxia UK has been part of a research project led by Prof Giunti of the London Ataxia Centre evaluating Specialist Ataxia Centres, as part of a larger European Brain Council project. It involved surveying people with ataxia in the UK, Germany and Italy, and the results highlight the value of specialist centres in addressing the challenges for people living with ataxia. Patients attending Specialist Ataxia Centres felt the care they received was better than those in non-specialist settings, with no significant difference in cost. During the year two papers were published in peer-reviewed medical journals, increasing the reach of our results and policy recommendations. Supporting healthcare professionals We continued our support of healthcare professionals involved in treating people with ataxia. We are working on updating our Medical Guidelines, written by healthcare professionals for healthcare professionals, which were last published in 2016. This update is being carried out by a range of contributors, with support and review from our Guidelines Development Group, which includes ataxia specialists and people affected by ataxia. We kept the healthcare professionals on our registry updated on evenls, news, funding and training opportunities with our quarterly newsletter. We also used the newsletter to update healthcare professionals on the status of ataxia treatments in development, which is becoming increasingly important as more ataxia drugs enter late-stage clinical trials. •*• Ataxia Centre of Excellence- Sheffield Children's NHS Foundation Trust 23 In collaboration with our Medical Advisory Panel (MAP), we continued the Ataxia Grand Round programme. These closed sessions involve a case presentation from a neurologist, which is then discussed with ataxia specialists. This enables neurologists from outside of the MAP to obtain invaluable expert advice from ataxia specialists on diagnosis and symptom management. Feedback from those involved has been very positive. Positive changes in healthcare policy Despite our limited resources. Ataxia UK'S CEO Sue Millman has always endeavoured to ensure that we play an active role in the umbrella organisations which marshal the resources of the charity sector to advocate for changes to policies in health and care that would benefit people affected by ataxia. Sue is currently Vice-chair of Genetic Alliance UK, an alliance of over 200 charities and support groups working together to improve the lives of people in the UK with genetic, rare and undiagnosed conditions, and plays an active part in its activities and campaigns. In addition, Sue is a patient advocacy group member of the Department of Health/NHS Rare Diseases Framework Stakeholder Group, which is invited to comment on various elements of the Rare Disease Frafflework and Plan. Is /G Ll li. 24 Looking Ahead Specialisl Nurse Our Specialist Ataxia Nurse will begin seeing patients (Already started from May 2025) The role supports people with ataxia, their families and carers to access specialist care. We aim to build NHS links in the Soulh West and grow an ataxia clinic from the neurology hub in Bristol. Longer term, we hope to expand the model to other regions to improve access across the UK. Access to Ireatments Ataxia UK will continue in our efforts to influence the UK regulatory and reimbursement systems to improve early access to medications and more appropriate reimbursement processes for rare conditions and suitable prescribing. We will continue to engage with relevant stakeholders, while keeping the ataxia community informed and involved, to push for access to omaveloxolone for people with Friedreich's ataxia in the UK. There are two more drugs in the pipeline for FA and SCAS that are being assessed by regulators in the US and EU, and we will advocate strongly for access in the UK for these and others as they become available. Ataxia Centres To expand upon our work with the Ataxia UK-accredited Ataxia Centres, we plan to accredit at least one more centre in 2025126, giving easier access to a specialist ataxia centre in the East of England. As the number of centres grows, the need for monitoring becomes greater and we plan to establish annual monitoring of the Ataxia UK-accredited centres. Our work with the Accredited Centres is likely to become more important as more ataxia drugs reach late-stage trials and enter the regulatory process. In order to seek specialist input on access and distribution of medications in the future, we plan to establish an Ataxia Centres Panel, providing a forum for discussion with neurologists running the ataxia centres. RESEARCH .p 26 Highlights November 2024 saw the International Congress for Ataxia Research (ICAR) come to London. ICAR was organised by Ataxia UK, along with the National Ataxia Foundation (NAF), the Friedreich's Ataxia Research Alliance (FARA) and the Ataxia Global Initiative (AGI). This was the biggest ICAR yet, with 600 in-person attendees and 50 online participants from 32 countries, including researchers, clinicians, representatives from the pharmaceutical industry and patient organisations. The congress brought together researchers from the ataxia field to share knowledge through talks, workshops, debates and poster presentations. 91 % of attendees made new contacts at ICAR In 2024-25 Ataxia UK awarded six grants to a range of projects, from supporting carers to developing antisense oligonucleotides for SCA3. Our 2025 impact report showed that over the last 10 years, for every £1 invested in research, £5 in further funding was secured by researchers for ataxia research. We continue to engage people with ataxia in research. We provided feedback on surveys designed to gather inforfflation from people with ataxia, including an FA Burden of Illness study and a survey on attitudes to gene therapy for ataxia. We publicised opportunities for people with ataxia to be involved in studies, and met with pharmaceutical companies and researchers to provide a patient perspective on their research programmes. 10 years of Ataxia UK funded research produced 58 journal articles 27 Engagement in research Having a database of people with ataxia puts Ataxia UK in a unique position to support projects via the recruitment of participants. During the year, we publicised a number of studies for people with ataxia to be involved in research. This includes clinical studies, such as the SCA3 ESMI natural history study, as well as opportunities to complete surveys or take part in interview studies, such as the FA Burden of Illness survey. These studies provide critical information to advance clinical trials for the ataxias and to help in the stages following successful trials where medications are assessed by regulators and those making decisions on access to medicines within the NHS. Ataxia UK has an internal Ethics Review Committee. who provide feedback on surveys and patient facing information. They also make decisions on whether studies should be prioritised for the community. This Committee is made up of people that have ataxia or their family members. During this year, they reviewed six studies. This included patient information for a planned clinical trial, and surveys designed to gather information from people with ataxia. Illil 28 Funded research In 2024125 Ataxia UK awarded six project grants and two travel awards. Including these projects, there are currently 25 projects being managed (including seven from the DRPLA programme). Applications for our grants programme are reviewed by the Scientific Advisory Committee. which provides independent advice to the Board of Trustees. Tltle Grant amount {£) 5,000 Towards a pharmacological model of Autosomal Recessive spastic Ataxia of Charlevoix-saguenay (ARSACS) Restoring NINotes
Donations and legacies
3
Other trading activities
4
Charitable activities
5
Investments
6
**Total income**
**Expenditure on:**
Raising funds
7
Charitable activities
8
**Total expenditure**
Net losses on investments
Net income/(expenditure)
Transfer from Unrestricted to Restricted
Net movement in funds
Total funds brought forward
**Total funds carried forward**|**Unrestricted**
**funds**
**Restricted**
**funds**
**Total**
**funds**
**_2025_**
**£**
**£**
**£**
_556,687_
_38,174_
**594,861**
_226,554_
_9,138_
**235,692**
_38,602_
_912,656_
**951,258**
_1,882_
_-_
**1,882**
_823,725_
_959,968_
**_1,783,693_**
_(217,421)_
_-_
**_(217,421)_**
_(524,138)_
_(1,055,295)_
**_(1,579,433)_**
_(741,559)_
_(1,055,295)_
**_(1,796,854)_**
-
-
**-**
_82,166_
_(95,327)_
**_(13,161)_**
_(2,286)_
2,286
**-**
_79,880_
_(93,041)_
**_(13,161)_**
_543,290_
_(15,674)_
**_527,616_**
**_623,170_**
**_(108,715)_**
**_514,455_**|**Total**
**funds**
**_2024_**
**_£_**
_859,346_
_285,854_
_668,577_
_-_| |---|---|---| |||_1,813,777_| |||_(271,119)_
_(1,054,353)_| |||_(1,325,472)_| |||-| |||_488,305_
-| |||_488,305_
_39,311_| |||_527,616_| The SOFA has been prepared on the basis that all operations are continuing. All recognised gains and losses are included in the SOFA. The accompanying pages form part of these financial statements. 51 ## **ATAXIA UK** ## **DETAILED COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES** (incorporating the income and expenditure account) (incorporating the results of the Charity's branches) ## **for the year ended 31st March 2024** |**Income**
Notes
Donations and legacies
3
Other trading activities
4
Charitable activities
5
Investments
6
**Total income**
**Expenditure on:**
Raising funds
7
Charitable activities
8
**Total expenditure**
Net losses on investments
Net income/(expenditure)
Transfer from Unrestricted to Restricted
Net movement in funds
Total funds brought forward
**Total funds carried forward**|**Prior year**
**Unrestricted**
**funds**
**Restricted**
**funds**
**Total**
**funds**
**_2024_**
£
£
£
_308,728_
_550,618_
_859,346_
_275,182_
_10,672_
_285,854_
_14,545_
_654,032_
_668,577_
-
-
-| |---|---| ||_598,455_
_1,215,322_
_1,813,777_| ||_(271,119)_
-
_(271,119)_
_(509,372)_
_(544,981)_
_(1,054,353)_| ||_(780,491)_
_(544,981)_
_(1,325,472)_| ||-
-
-| ||_(182,036)_
_670,341_
_488,305_
(871)
871
-| ||_(182,907)_
_671,212_
_488,305_
_726,197_
_(686,886)_
_39,311_| ||_543,290_
_(15,674)_
_527,616_| The SOFA has been prepared on the basis that all operations are continuing. All recognised gains and losses are included in the SOFA. The accompanying pages form part of these financial statements. 52 ## **ATAXIA UK BALANCE SHEET** ## **As at 31st March 2025** ||||**_2025_**|||_2024_|| |---|---|---|---|---|---|---|---| ||Notes|**£**||**£**|**£**||**£**| |**Fixed assets**|||||||| |Tangible assets|14|**12,182**|||13,723||| |||||**12,182**|||13,723| |**Current assets**|||||||| |Debtors|15|**435,141**|||358,520||| |Cash at bank and in hand|16|**1,686,350**|||1,875,365||| |||**2,121,491**|||2,233,885||| |Creditors: amounts falling due within one year|17|**(1,131,513)**|||(1,123,662)||| |**Net current assets**||||**989,978**|||1,110,223| |**Total net assets less current liabilities**||||**1,002,160**|||1,123,946| |Creditors: amounts falling due after more than|18|||**(487,705)**|||(596,330)| |one year|||||||| |**Total net assets/(liabilities)**|19|||**514,455**|||527,616| |**Accumulated funds**|||||||| |Unrestricted funds|||||||| |General funds|20|||**334,653**|||464,563| |Designated funds|21|||**288,517**|||78,727| |||||**623,170**|||543,290| |Restricted funds|22|||**(108,715)**|||(15,674)| |**Total funds**||||**514,455**|||527,616| These accounts are prepared in accordance with special provisions of part 15 of The Companies Act relating to small companies and constitute the annual accounts required by The Companies Act 2006. The financial statements were approved by the Trustees on 21[st] November 2025 and signed on their behalf by: William Littleboy, Chair Kathy Jones - Treasurer The accompanying pages form part of these financial statements. Charity Number: 1102391 Company Number : 04974832 53 ## **ATAXIA UK** ## **Statement of Cash Flows For the year ended 31 March 2025** |**Cash generated from operating activities:**
**Net cash provided by operating activities**
**Cash flows from investing activities:**
Dividends and interest from investments
Purchase of property, plant and equipment net of sales
**Net cash provided/(used in) by investing activities**
**Net increase in cash:**
Cash at bank and in hand less overdrafts at the beginning of the year
Change in cash and cash equivalents
Cash at bank and in hand less overdrafts at the end of the year
**Reconciliation of net income to net cash flow from operating activities**
Net (expenditure)/income
Adjustments for:
Depreciation charges
Dividends and interest from investments
(Increase)/Decrease in debtors
Increase/(Decrease) in creditors
**Net cash provided by operating activities**
**Analysis of cash at bank and in hand less overdrafts**
Cash at bank and in hand|**2025**
**£**
**(183,576)**
**1,882**
**(7,321)**
**(5,439)**
**(189,015)**
**1,875,365**
**(189,015)**
**1,686,350**
**2025**
**£**
**(13,161)**
**8,862**
**(1,882)**
**(76,621)**
**(100,774)**
**(183,576)**
**2025**
**£**
**1,686,350**
**1,686,350**|2024
£| |---|---|---| |||294,384| |||-
(8,251)| |||(8,251)| |||| |||286,133| |||1,589,232
286,133| |||1,875,365| |||2024
£
488,305
10,890
-
6,521
(211,332)| |||294,384| |||2024
£
1,875,365| |||1,875,365| 54 **ATAXIA UK NOTES TO THE FINANCIAL STATEMENTS 31 MARCH 2025** ## **Charity Information** The Charity is a company limited by guarantee and has no share capital. In the event of the charity being wound up, the liability in respect of the guarantee is limited to £1 per member of the charity. The company is registered in England and Wales (company registration number 4974832) with a registered office at 12 Broadbent Close, London, N6 5JW. It is also a registered charity in England and Wales (Registration number 1102391) and Scotland (Registration number Charity SCO40067). The charity meets the definition of a public benefit entity under FRS 102. ## **Principal Accounting Policies** Basis of Preparation: The financial statements have been prepared in accordance with the Statement of Recommended Practice (SORP) applicable to charities preparing their accounts in accordance with the Financial Reporting Standard (FRS) applicable in the UK and Republic of Ireland (FRS 102), the Charities SORP (FRS 102) the Financial Reporting Standard applicable in the UK and Republic of Ireland and the Companies Act 2006. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy note(s). Going Concern: During the 2024/25 financial year, we had a net deficit in total funds. The balance sheet shows a net asset position. The DRPLA and NKX6-2 grants were agreed in 2020/21 with the funding received over 3 years. Covid delayed the start of the projects and means the research should be completed and all funds received by 2026. See note 22 (note I DRPLA and note ii NKX6-2) below for further details. The cost of living crisis has had an impact on donations and could continue to have an impact on the 2025/26 financial year. We continue to take steps to ensure the continued viability of the charity. The cashflow is reviewed regularly to ensure that unrestricted cash is going to be adequate at all times, but in the current year, legacy giving is surpassing expectations. The Finance Committee meet regularly to monitor the situation and the fundraising department are continuing to pursue other ways to raise funds to safeguard income. To aid robust forecasting, a budget and associated cash flow have been drawn up for 2025-2027. The Trustees feel there are adequate resources to continue operating for the foreseeable future. The Trustees feel that there are no material uncertainties about the charitable company's ability to continue as a going concern. Accordingly, we continue to adopt the going concern basis in preparing this annual report and financial statements. Childlife: The Charity is a member of a consortium, with three other charities, called Childlife, through which the member charities are able to collectively raise funds for their respective causes through the operation of a combined payroll deduction scheme and donor development. In accordance with FRS 102 Childlife is not consolidated in the financial statements of Ataxia UK as Ataxia is not part of a group that is required to prepare consolidated financial statements. As a grant funder of Ataxia UK, Childlife is treated on the same basis as any other funder and trading transactions between Ataxia UK and Childlife are reflected as such in these financial statements. Tangible Fixed Assets: Tangible fixed assets costing more than £1,000 are capitalised and depreciated over their anticipated useful life. Office equipment is depreciated over 3 years on a straight-line basis. Intangible Fixed Assets: Intangible fixed assets costing more than £500 are capitalised and amortised at the rate of 25% per annum on a straight-line basis. Income Recognition: Income is recognised on an accrual basis, with the exception of donations and some fundraising receipts, which are on a cash basis. Deferred income represents fundraising income received for future events and is released to income in the period in which the event takes place. All income previously deferred has been released during the current year. 55 **ATAXIA UK NOTES TO THE FINANCIAL STATEMENTS 31 MARCH 2025** ## **Principal Accounting Policies (continued)** Legacy Recognition: In accordance with SORP (FRS 102), legacies are recognised when they are probable and measurable. Income tax recoverable: Income tax recoverable has been added to the relevant income source to which it applied. Apportionment of Staff Costs and Overheads: Staff costs and related office overheads have been apportioned between direct charitable expenditure, fundraising, raising awareness and governance according to the time spent by staff on each of these activities. The costs of raising awareness of the issues surrounding ataxia have been separately identified to reflect the increasing importance of this activity. Unrestricted funds: Unrestricted funds are funds that can be used in accordance with the charitable objects at the discretion of the Trustees. Designated funds: Designated funds represent amounts held by Ataxia branches and some unrestricted funds which have been set aside by trustees for an essential spend or future purpose. See note 21 for further details. Restricted funds: Restricted funds represent funds donated and raised by supporters of the Charity, which have been given for particular research or care services projects, together with grants received in respect of specific projects. The movements on the restricted reserves during the year are shown in note 22. Branches: The accounts of the Charity's branches have been consolidated into these accounts. Operating Lease Rentals: Rentals applicable to operating leases are charged to the Statement of Financial Activities as they become due. Contractual Commitments: Formal and unconditional commitments to research expenditure and other grants at the balance sheet date are included within creditors, in accordance with SORP (FRS 102). Commitments to such projects that have been agreed by the Trustees but have not yet been confirmed to the recipient, and therefore do not yet represent contractual commitments, are shown as designated funds, except a) to the extent that equivalent reserves are maintained in restricted funds and b) to the extent that they are funded by commitments from other bodies. The movements on general funds and designated funds are shown in notes 20 and 21. Pensions: The Charity contributes to certain employees' individual personal pension schemes, the assets of which are held separately from those of the Charity in a separately administered fund. Contributions to the scheme are charged to the Statement of Financial Activities as they fall due. Taxation: As a registered charity, the Charity is exempt from taxation under CTA 2010 section 478.479. Governance Costs: Governance costs include audit, legal and professional fees and the apportionment of staff costs, and office overheads costs according to the amount of staff time spent on this activity. Goods and Services in Kind: Donated Services and equipment are included as income and related expenditure where the value to the charity can be reasonably quantified. The value of services provided by volunteers has not been included. ## **ATAXIA UK** ## **NOTES TO THE FINANCIAL STATEMENTS 31 MARCH 2025 CONTINUED** ## **Note** 3 **Donations and Legacies Income** |Donations
Legacies
**Note**
4 **Other Trading Activities**
Fundraising activities
**Note**
5**Charitable Activities Income**
Childlife
Annual conference
Grants receivable
Registrations and sponsorship
**Note**
6 **Investment Income**
Interest
**Note**
7 **Raising Funds Expenditure**
Costs of generating funds|**2025**
**£**
**364,721**
**230,140**
**594,861**
**2025**
**£**
**235,692**
**235,692**
**2025**
**£**
**115,000**
**16,444**
**298,698**
**521,116**
**951,258**
**2025**
**£**
**1,882**
**1,882**
**2025**
**£**
**217,421**
**217,421**|**2024**
**£**
827,551
31,795| |---|---|---| |||859,346| |||**2024**
**£**
285,854| |||285,854| |||**2024**
**£**
100,000
14,156
554,421
-| |||668,577| |||**2024**
**£**
-| |||-| |||**2024**
**£**
271,119| |||271,119| **Note** 8 **Charitable Activities Expenditure** ||Direct|Grants|Support|**2025**|**2024**| |---|---|---|---|---|---| ||Costs||Costs|Total|Total| ||**£**|**£**|**£**|**£**|**£**| |Research activities|737,524|67,923|107,288|**912,735**|472,326| |Adjustment of committed costs**|-|-|-|**-**|(90,414)| |Care services|213,885|9,845|53,230|**276,960**|243,334| |Total|951,409|77,768|160,518|**1,189,695**|625,246| |Generating funds|-|-|163,107|**163,107**|150,021| |Raising awareness|95,472|-|36,398|**131,870**|193,148| |Governance|-|-|94,761|**94,761**|85,938| |Total charitable activities|**1,046,881**|**77,768**|**454,784**|**1,579,433**|1,054,353| ** The reduction in grant was notified in January 2023. As a result, the related committed funds were reduced in FY 23/24 since the full grant amount had already been included in committed funds in the previous year when it was initially approved. ## **ATAXIA UK NOTES TO THE FINANCIAL STATEMENTS 31 MARCH 2025 CONTINUED** **----- Start of picture text -----**
||||||||||||||| |---|---|---|---|---|---|---|---|---|---|---|---|---|---| |Z-Institut|du|Cerveau|et|de|laMoelle|épinière-ICM| |Novel biomarkers of oxidative stress in|Friedreich’s|ataxia| |Identification|of|disease-associated|single|nucleotide|polymorphisms|in|ataxin-3| |Evaluating ribosome collisions on CAG expansions proteostasis and translational| |stress|responses|in|Spinocerebellar|Ataxia|type|3| |Consultancy|support|with|respect|to|preparing|for|Health|Technology|Assessment| |Effect of targeting sphingolipid- metabolising enzymes in iPSC-derived sensory neurons| |obtained|from|FRDA|patients| |Exploring|novel|iro|n-|mediated|mechanisms|to|prevent|cellular death|in|Friedreich's| |Ataxia| |Z|-U|niversity|of Tubingen|(Germany)|-|)|-|Refinement|of allel|e-|specific|antisense| |oligonucleotides|for|spinocerebellar|ataxia|type|3|(SCA3)| |Z|-|University|Miami|-|Supporting|a|genome|-w|ide|association|study|of genetic|modifiers| |of age|at|onset|in|spinocerebellar|ataxia| |Z|Institut D’assistacencia|Sanataria|Salt (Girona)|-|DRPLA research| |Z|-|Algarve|Biomedical|Center|Research|Institute|-|grant to|attend|and|present|a|poster| |at the|Cell|Death|Gordon|Research|Conference|2024| |Z|-|Universidade|de|Lisboa|-|Grant|application|entitled|‘Towards|a|pharmacological| |model|of|Autosomal Recessive|Spastic|Ataxia|of|Charlevoix-Saguenay (ARSACS)'| |Z-Universidade|de|Lisboa|-|Restoring|NKX6-2|function|by|protein|complementation:|a| |proof-of-concept| |Z|-|Newcastle|University,|Dr Ng|-|A|feasibility|study|of Remote|Patien|t-|Reported| |Outcome|measures|in|Mitochondrial|disease|and|Spinocerebellar|ataxias|(R-PROMS)| **----- End of picture text -----**
58 ## **ATAXIA UK** |Social security contributions| |---| |Pensions| |Redundancy and termination costs| 59 ## **ATAXIA UK** ## **Note** 14 **: Tangible Fixed Assets** |**COST**
As at 1st April 2024
Additions
Disposals
As at 31 March 2025
**DEPRECIATION**
As at 1st April 2024
Charge for year
Disposals
As at 31 March 2025
**NET BOOK VALUE**
As at 31 March 2025
As at 1st April 2024|**Building**
**Works**
**£**
5,333
-
-
5,333
5,191
142
-
5,333
**-**
142|**Other Assets**
**£**
52,535
7,321
-
59,856
38,954
8,720
-
47,674
**12,182**
13,581|**Total**
**£**
**57,868**
**7,321**
**-**
**65,189**| |---|---|---|---| ||||**44,145**
**8,862**
**-**
**53,007**| ||||**12,182**| ||||13,723| Included within the net book value of the 'Other Assets' is an amount of £Nil (£1,000 in 2024) relating to items acquired on Finance Lease/Hire purchase. ## **Note** 15 **: Debtors Under 1 Year** |**: Debtors Under 1 Year**||| |---|---|---| ||**2025**|**2024**| ||**£**|**£**| |Income tax recoverable|**51,465**|51,464| |Other debtors|**351,310**|268,633| |Prepayments|**32,366**|38,423| ||**435,141**|358,520| ## **Note** 16 **: Cash at bank and in hand** The Trustees maintain a policy that all cash balances are held with reputable financial institutions. Interest receivable is disclosed in note 6. ## **Note** 17 **: Creditors: amounts falling due within one year** |**: Creditors: amounts falling due within one year**||| |---|---|---| ||**2025**|**2024**| ||£|£| |Other creditors|**27,874**|11,361| |PAYE/NI|**50,714**|60,775| |Deferred income|**214,962**|85,886| |Accruals|**27,066**|30,043| |Research grants|**810,897**|935,597| ||**1,131,513**|1,123,662| ## **ATAXIA UK** Restricted Designated General Parental Service development Research conference fund 61 ## **ATAXIA UK** ## **NOTES TO THE FINANCIAL STATEMENTS 31 MARCH 2025 CONTINUED** **Note** 22 **: Restricted Funds** |General Research
Friedreich's ataxia research
Cerebellar ataxia research
Gene therapy survey project
Young Person's projects
Jerry Farr travel fund
Welfare - The Gift of Speech
Nicotinomide
Scottish Project
Helpline
Misc Grants
Childlife
Awareness
Kennedy Award
Research Stem Cell FA
Mark Dower Trust
Spinocerebellar Ataxia Research Project
DRPLA Research
The National Lottery Community Fund
RC England Wide
DRPLA Department
Scotland
NKX6-2
AOA2
Prospax Project
Research Service Contracts
Research SCA6
Research SCA3
Research ICAR Conference
Misc AAA++|**At 1 April**
**2024**
**Income**
**Expenditure**
**Transfers**
**At 31 March**
**2025**
**£**
**£**
**£**
**£**
**£**
303,515
25,074
(105,460)
15,000
**238,129**
11,841
7,988
(24,903)
32,973
**27,899**
1,091
7,719
(11,057)
9,421
**7,174**
-
7,000
(1,400)
-
**5,600**
7,959
-
-
-
**7,959**
671
-
-
-
**671**
8,677
97
(10,536)
1,762
**-**
24
-
-
-
**24**
-
10,000
(6,500)
**3,500**
4,152
-
-
-
**4,152**
450
8,624
(8,239)
-
**835**
-
115,000
(57,606)
(57,394)
**-**
4,171
-
-
-
**4,171**
9,198
-
-
-
**9,198**
78
-
-
(78)
**-**
224
2,000
(2,826)
602
**-**
4,912
-
-
-
**4,912**
(478,581)
7,878
(7,781)
-
**(478,484)**
71,912
81,367
(142,412)
-
**10,867**
15,876
179,202
(172,842)
-
**22,236**
800
-
-
-
**800**
(23,391)
-
(1,639)
-
**(25,030)**
7,009
858
(123)
-
**7,744**
(440)
4,611
(5,456)
-
**(1,285)**
-
3,902
(14,707)
-
**(10,805)**
573
-
-
-
**573**
62
-
-
-
**62**
27,565
498,016
(481,808)
-
**43,773**
5,978
632
-
-
**6,610**
**(15,674)**
**959,968**
**(1,055,295)**
**2,286**
**(108,715)**| |---|---| ## **Purpose of restricted funds** **a) General Research:** Funds provided for general research into ataxia. **b) Friedreich's ataxia research:** Funds provided by donors specifically for research on Friedreich's ataxia. **c) Cerebellar ataxia research:** Funds provided by donors specifically for research on cerebellar ataxia. **d) Young Person's projects:** Funds provided by donors to develop materials to help young people after diagnosis. **e) Jerry Farr travel fund:** Funds given by friends of Jerry Farr to help young people after diagnosis. **f) Welfare:** Funds provided for welfare grants. **g) Welfare - The Gift of Speech:** Funds provided for speech therapy grants and voicebanking **.** **h) Nicotinomide ataxia research:** Funds provided by donors specifically for research on Nicotinomide. **i) Goods and Services Received:** Goods and Services received free of charge in respect of Google ads. **j) Helpline:** Funds to support the helpline. **k) Miscellaneous Grants:** Funds provided for general grants. **l) Childlife:** Funds given by Childlife to promote the relief of children who are in need. The auditors have agreed that the income received from Childlife has been spent in accordance with the terms of and conditions of the grant. 62 **ATAXIA UK NOTES TO THE FINANCIAL STATEMENTS 31 MARCH 2025 CONTINUED** ## **Purpose of restricted funds (continued)** ## **m) Exeter:** Funds to be expended in the Exeter area. **n) Awareness:** Funds provided to raise awareness of Ataxia. **o) Kennedy Award:** A fund set up to assist researchers studying Friedreich's ataxia with attending scientific conferences and other small research studies. **p) Mark Dower Trust:** A fund set up to support young people in their quest for independent living through enabling them to develop skills, hobbies or interests. **q) Spinocerebellar Ataxia Research Project:** Funds for spinocerebellar ataxia research project. **r) DRPLA Research:** Funds provided by donors specifically for research on Dentatorubral-pallidoluysian atrophy **.** See note 1 below. **s) In Control Project:** Funds provided by the Lottery to promote volunteers and provide support to the ataxian **t) The National Lottery Community Fund RC England Wide :** Grant to develop services for people affected by ataxia **u) DRPLA Department:** Funds provided by donors specifically for staff to support DRPLA research. **v) Scotland:** Funds to be expended in Scotland. **w) NKX6-2:** Funds provided by donors specifically for research into NKX6-2 **.** See note 2 below. **x) AOA2:** Funds provided by donors specifically for research into ataxia with oculomotor apraxia type 2. **y) Prospax Project:** Funds provided by donors specifically for research into spastic ataxias. **z) Research Service Contracts:** Funds provided for projects undertaken by the research department. **aa) SCA6:** Funds provided by donors specifically for research into Spinocerebellar ataxia type 6 . **ab) SCA3:** Funds provided by donors specifically for research into Spinocerebellar ataxia type 3. **ac) ICAR Conference:** Funds provided towards costs of International Congress for Ataxia Research 2024 being held in London, UK. **ad) Misc AAA++:** Funds provided by donors specifically for expansion of the All About Ataxia offerings. Note i: DRPLA research grants of £1.8m were agreed during the 2020/21 financial year with income being received of £0.8m. Two of the research grants are being funded over three years leaving a deficit of £1m which equates to the year 2 & year 3 payments. Both projects have had a delayed start which has resulted in year 2 & year 3 payments being delayed. Ataxia has signed agreements in place outlining the payment structure ensuring these future commitments will be met. During the 2023-4 financial year income of £513k was received and the grants awarded reduced by net £53k because of a reduction in the scope of work. During the 2024 5 financial year income was £7878. It is anticipated that the project will be completed by March 2027. Note ii: Two NKX6-2 research grants of £105k were agreed during the 2020/21 financial year with income being received of £58k. One grant was fully funded, and the second grant will be funded over three years. The £58k deficit equates to year 2 and year 3 funding which is being held in an escrow account. The project has had a delayed start which has resulted in year 2 & year 3 payments being delayed. Ataxia has signed agreements in place with both the funder and the recipients of the research grants outlining the payment structure ensuring these future commitments will be met. During the 2023-4 year income was received of £23k and £8k of grants awarded by the charity. Nil income was received during the 2024-5 financial year. It is anticipated that this project will complete during the 2024-5 year. 63 **ATAXIA UK NOTES TO THE FINANCIAL STATEMENTS 31 MARCH 2025 CONTINUED** ## **Note** 23 **: Capital Commitments** There are no capital commitments at 31 March 2025 (2024: Nil) ## **Note** 24 **: Lease Commitments** ## **At 31 March 2025 the charity had future minimum lease payments under non-cancellable operating leases as follows:** |**operating leases as follows:**||||| |---|---|---|---|---| ||**2025**||**2024**|| ||**Land &**||**Land &**|| ||**buildings**|**Other**|**buildings**|**Other**| ||**£**|**£**|**£**|**£**| |Payments due:||||| |Within one year|-|1,861|-|1,608| |Within two to five years|-|5,195|-|-| ||**-**|**7,056**|-|1,608| ## **Note** 25 **: Associated Organisations** The charity is a member of a consortium, with three other charities, called Childlife, through which the member charities are able to collectively raise funds for their respective causes through the operation of combined payroll deduction scheme and donor development. Childlife is a company limited by guarantee and registered in England and Wales - number 3696656 - and a registered charity - number 1080536. Each of the members of Childlife provide a guarantee limited to £1. 64 Thankyou to Our Supporters Ataxia UK extends heartfelt thanks to all the individuals. communily groups. schools, companies, and organisations who have supported us during 2024-25. Our Supporters 2024-25 Porthmadog Golf Club, AJ Case Management, XN Leisure Systems Ltd. MD Law (Yorkshire) LLP, Will Street, Porthmadog - Sandra Creamer, MidexPro - Avebury Computing, Shaw Heath Bees FC, RBC GAM UK, State Street Bank, Crosshill Social Club. Gala Bowling Club, St Edward's Church, Stanstead Abbotts Village Club, All Hallows Church, Centura Golf Society, Rhiwbina Trefoil Guild. St Mary's Methodist Church Bright Hour, Waverley School, Woodhouse Community Music Groups, The Lodge of Harmony and Progress, SQS Ltd via Martin Jones, Harris Academy, North Cornwall Whist Holiday Group, Harrogate Spa Town Ukes, Brandhall Community Choir, Dalton District Girlguiding, Richmond Amateur Dramatic Society, Poeton Industries, St Mary s Methodist Church. Reddam House School. CollaborationslPartners Parkhead CAB in Glasgow. Cure DRPLA ICAR 2024 Sponsors Ataxia UK also warmly thanks all sponsors of the International Congress for Ataxia Research (ICAR 2024) for their invaluable support and partnership in driving progress for the ataxia community worldwide. Biogen, Biohaven, Larimar Therapeutics, PTC Therapeutics. Lexeo Therapeutics, Amgen, Quince Therapeutics, Stealth BioTherapeutics, Solaxa, Fannin, Alexion, Design Therapeutics, Astellas, Insmed, Friedreich's Ataxia Research Alliance Ireland (FARA), Association FranGaise de I'Ataxie de Friedreich (AFAF). We'd like to thank the following Individuals and Trusts and Foundations National Lottery Community Fund, Ernest Hecht Charitable Foundation, Foundation Rumsey- Cartier, Keith Miller, The Hospital Saturday Fund, James Rapson and the Bishops Cannings Cricket Club, The Big Give Trust. Citizens Advice Scotland Development Fund. Our Ataxia Angel in this financial year is Neil Dennehy Our 2024 Big Give Pledgers Peter Reeves, Andrew Downie, Harriet Brown, Colin Wise, Nicholas Luff, John Chapman +44 020 7582 1444 www www.ataxia.org.uk communications@ataxia.org.uk Ataxia UK, 12 Broadbent Close, London, N6 5JW Ataxia UK is a Charity registered in Scotland (SC040607) & England & Wales (1102391); & Limited Company (4974832)