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2023-03-31-accounts

2022 - 2023 Annual Report & Financial Statement For the Year: 1st April 2022- 31st March 2023 Ataxia UK, 12 Broadbent Close London, N6 5JW

Ataxia UK | Annual Report 2022 - 2023

Contents

Statement from Chair 3 Reference & Administration Details of the Charity 4 Structure, Governance & Management 5 Objectives & Activities 10 Achievements & Performance, Aims for 2023 2024 12 Financial Review 40 Statement of Trustees Responsibilities 43 Independent Auditor s Report 45 Statement of Financial Activities (SOFA) 49 Balance Sheet 51 Cash Flow Statement 52 Notes to the Financial Statements 53

Ataxia UK works across the whole of the UK and is a charity registered in Scotland (No. SC040607) and in England and Wales (No. 1102391) and a company limited by guarantee (No. 04974832)

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Statement from Chair

The year concluded with the approval by the FDA (in the USA) of Skyclarys, ataxia. It was the very best news for the ataxia community and Ataxia UK. However, the application for approval in the UK. Hopefully this is only a matter of time. Moreover, the pace of ataxia research is speeding up with a number of trials underway or pending, in various ataxias so we hope there may be other good feels treatments are around the corner, but we hope that patience will be rewarded before too long. In the meanwhile Ataxia UK will do everything it can to support the approval of Skyclarys and any other prospective treatments for the ataxias.

In November, we were delighted to see the strides being made in research which were showcased at the International Congress for Ataxia Research in Dallas on which we were delighted to collaborate with the US National Ataxia Foundation and FARA. The conference had the greatest attendance ever, of any scientific conference exclusively devoted to the study of the ataxias which shows the increasing interest in this research area.

Helpline and Advocacy benefitted from increased focus and the welcome imperative that we do all we can to support the community to deal with the financial and practical challenges which arise from an ataxia diagnosis. We are optimistic that we will see our work complimented by an Ataxia UK Specialist Ataxia Nurse during the coming year.

We regretfully cancelled our in-person conference in October 2022, but are excited to be holding our first face-to-face conference since 2019 on 20th/21st October at the Radisson Blu East Midlands. We appreciate that whilst many are looking forward to meeting others, some people are unable to travel and value the virtual encounters we are able to provide. As such, we are committed to maintaining our online services and will be providing a virtual version of conference for those who are unable to attend.

Our work is only possible with the generous support of the ataxia community which provides us with committed volunteers who help in the running of the charity fulfilling roles as Board members and supporting our service delivery. The consistent financial support provided through the fundraising of our supporters, even at this difficult time, is always impressive. Many thanks to everyone who contributed to our work over the last year.

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Ataxia UK | Annual Report 2022 - 2023

Reference & Administration Details of the Charity, its Trustees & Advisors

The Trustees that served during 2021-2022 were:

Honorary Officers

William Littleboy, Chair (Elected as Chair 6 October 2019) Kathy Jones Honorary Treasurer

Trustees

Ataxia UK uses the following professional advisors:

Angela Hosie

Auditors

Carol McCudden

Gemma Fish

Philip Griffiths (Retired Oct 2022)

Rachel Harrison

Goldwins Limited 75 Maygrove Road West Hampstead London NW6 2EG

Bankers

Barclays Bank PLC PO Box 96 82-84 High Street Epsom KT19 8BH

Robert Perkins

HR Consultants

Harriet Brown (Joined Oct 22)

HR Services Partnership Bentley House North Heath Lane Horsham West Sussex RH12 5QE

Solicitors

Bates Wells & Braithwaite London LLP 2-6 Cannon Street, London EC4M 6YH

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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 Memorandum and Articles of Association, adopted on 25 November 2003.

Ataxia UK is managed by a Board of Trustees, which sets strategies and policies. An Executive Committee, compromising the Honorary Officers, the Trustee Scientific Advisor and one other trustee (one of whom must have ataxia), conducts business as required between meetings of the full Board of Trustees. The trustees include people with ataxia, friends/family of people with ataxia and others with relevant experience and expertise.

The Annual General Meeting of the charity took place on Friday 23[rd] September 2022.

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 t strategic plan; aims and objectives, and the internal structure of the charity. New Trustees are to the most significant documents on the Charity Commission website.

Pay and remuneration Ataxia UK is considered annually by a Remuneration Committee, comprising the Chair, Treasurer and one other committee member, and meets during the budget setting process to review salary grading levels, London weighting, increment 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.

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Ataxia UK | Annual Report 2022 - 2023

Public Benefit

In compliance with the Charities Act 2011, Ataxia UK has adopted a Statement of Public Benefit as follows:

people affected by ataxia.

We provide information and support services to people affected by ataxia and specialist services for this medical condition. Many of these 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 activities 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 and promote research activities , aiming to find a cure for ataxia. There is currently no specific government

Statement of Equality, Diversity and Inclusion

Ataxia UK has also adopted a Statement of Equality, Diversity and Inclusion :

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

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

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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 v

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

guidance on public benefit published by the Charity Commission and the Office of the Scottish Charity Regulator OSCR in exercising their powers

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. The 2022 Annual National Conference was held virtually.

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 Euroataxia. 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

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Ataxia UK | Annual Report 2022 - 2023

The SAC comprises the following independent scientific members:

Dr Javier Alegre-Abarretegui, Dr Franziska Denk, Professor Helen Dawes, Dr Mark Pook, Professor Keith Morris, Dr Gita Ramdharry and Dr Sophie Rowlands. The committee also included the following lay members during the year: Yanita Oparlakova, Harriet Bonney and Nathan Hall.

During this year Dr Claire Kelly, Dr Marija Sajic and lay member Alick Varma stood down from the committee and we are extremely grateful for their Board Scientific Advisor.

Employees

During 2022-23 the average number of full-time equivalent employees during the year was 18 to the governance of the Charity or our charitable activities). IT support and HR advice functions are outsourced.

Volunteers

In addition to the volunteers who function as trustees, many other volunteers play an important part in supporting Ataxia UK. During 2022-23 we have employed a number of interns and offered opportunities to volunteers throughout the charity. They have provided invaluable assistance in our dayto-day work, contributi Ataxia Magazine . Our InControl Project has continued to recruit more 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, Scientific Advisory Committee, Medical Advisory Panel, Pharma Advisory Group, Fundraising and InControl Steering Group.

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During the year five trained volunteers supported the Helpline staff by answering phone and email enquiries.

The contribution of all of 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; in 2022-23 the register remained significantly influenced by the impact of the Covid-19 pandemic and was also affected by the prospect of an economic recession.

At the end of the year the most significant risks and their mitigation were:

----- Start of picture text -----
Risk Mitigation/result
Failure to recruit/retain competent Ensure terms & conditions and
staff financial remuneration are the best
that we can afford.
Where possible employ a paid Intern
and give commitment to making post
permanent if necessary standard
reached
Long term risk of running reserves Implement High Net Worth and
lower than Reserve Policy Pharmaceuticals elements of the
Fundraising Strategy
Absence of sufficient funds to Implement High Net Worth and
implement research strategy in full. Pharmaceuticals elements of the
Fundraising Strategy
Failure to win National Lottery This was obtained in June 2023.
Community Fund bid
Procedural and systems Review policies and procedures.
documentation gaps/failure
----- End of picture text -----

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Ataxia UK | Annual Report 2022 - 2023

Objectives & Activities

Many different kinds of ataxia 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.

The trustees are clear that ataxia does not just affect the person with the disorder, but also his/her carer, and other members of the family. Ataxia UK regards all three groups as affected by ataxia and aims to help them all. Whilst the long-term vision is to find a cure for ataxia, trustees recognise that those affected by ataxia need a variety of support right now, and this informs our activities.

One of our primary objectives is to find the 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 that have been assessed by peer reviewers and appropriate, have approval from the Ethical Approval Committee local to the lead researcher.

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 pecialist Ataxia Centres: -stop 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

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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 to. An understanding of the condition in the NHS, where diagnosis and treatment are often delayed, but also in the social care sector, where an understanding of the condition could significantly improve the situation for people affected by ataxia.

Our Strategic Plan

Strategic Plan for 2022-25 contains these ambitions:

Faster, accurate diagnosis

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 meet these objectives are:

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Ataxia UK | Annual Report 2022 - 2023

Research

Research aims for 2022-2023

Host the International Congress of Ataxia research in Dallas, USA

Host the International Congress of Ataxia Research (ICAR) in Dallas, USA

ICAR 2022 took place in November 2022 and was jointly organised by three ataxia Research Alliance. It was a very successful event with 420 delegates, an increase from the last research conference we held in 2019. Feedback was very positive with overall conference rating of 4.5 out of 5 stars. In addition, 92% of respondents to the feedback survey thought the conference was extremely useful of very useful for advancing their work and the Panel discussion with people with ataxia was very well rated, highlighting the recognition of the involvement of people with ataxia in all aspects of our work.

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There was a strong focus on engagement of early career researchers, with bursaries provided and a programme of activities including mentoring and career discussions. To encourage participation from the UK Ataxia UK also provided nine travel bursaries from different research groups in the UK.

A very high representation from pharma companies and high levels of sponsorships also demonstrated the importance of such events to these stakeholders.

There was an extensive programme of research talks and poster sessions to maximise the exposure of many aspects of ataxia research. We also had an Ataxia UK stall with leaflets about us aimed at researchers and industry, plus forms or QR codes to encourage signing up to our registries. Dr Silvia Prades (Research Manager at Ataxia UK) presented a poster on the DRPLA patient registry and Ataxia UK staff were also named on five other posters of talks, included one Ataxia UK produced on the results of the Covid survey. Ataxia UK representatives were proactive in networking with delegates and various follow-up actions arose from this event to take research forwards.

After ICAR at the same venue the annual conference of Ataxia Global Initiative took place. This maximised the opportunities for researchers to attend both events. This event was an opportunity to focus on clinical trial

Promote further involvement of people affected by ataxia in research

Ataxia UK has been working on producing a new Research Strategy (last update was in 2018) which will be published shortly. Input from people with ataxia has been an integral part of the review process, together with the engagement in research continues to play an ever-increasing role in all

during the year to specifically support Ataxia UK in working towards getting access in the UK to the first drug that gained approval in FA adults in the US in February 2023. This group includes people with direct experience of FA (having the condition or being parents of people with FA). See further information below.

Ataxia UK has supported a number of pharma companies gain experience and understanding of the impact of ataxia from families via interviews, surveys and patient panels. Incorporating experience of people with ataxia is an integral part of the drug development and approval process and as

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Ataxia UK | Annual Report 2022 - 2023

more companies are reaching later stages of development there is a greater share this information and we are pleased some of this data was presented at the International Congress for Ataxia Research in 2022 and other studies are being prepared for publication.

Continue building the DRPLA research programme and disseminate the CureDRPLA Global Patient Registry

Ataxia UK has been collaborating with CureDRPLA, a US foundation, since 2020 to advance research in Dentatorubral-pallidoluysian atrophy (DRPLA), a rare form of inherited ataxia. CureDRPLA provides funds to employ a Research Manager within Ataxia UK to support the Head of Research in leading the DRPLA Research Programme. The expertise we are gaining will help us advance research in other ataxias.

The CureDRPLA Global Patient Registry is an online questionnaire to collect health information from individuals with DRPLA that was launched in 2021. Following promotion activities this Registry now has 38 participants from eight different countries. Initial key findings from the patient registry were presented by the DRPLA Manager at the International Congress of Ataxia Research (ICAR) in November 2022. During the year we have been engaging pharmaceutical companies to pursue DRPLA research and this conference was a great opportunity to meet with some of those companies and foster new collaborations.

We continue with outreach activities via social media channels to keep the DRPLA community engaged and we organised a meet up for families affected by DRPLA who are based in Wales. Even though all of the families live nearby, they had not met before this was probably the largest in-person gathering of DRPLA families to date.

In May CureDRPLA hosted the first-ever conference on DRPLA research in Boston (USA). We had over 30 attendees, including scientists, medical professionals and representatives from pharmaceutical companies. This conference created a strong sense of community and it was very helpful to share knowledge across different projects and explore therapeutic options for DRPLA. We are currently planning to host another conference in the autumn of 2023.

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Oversee recruitment and protocol compliance of the DRPLA Natural History and Biomarkers Study

Ataxia UK and CureDRPLA are coordinating the DRPLA Natural History and Biomarkers Study. This is a global study with sites in the UK and the USA, which are currently recruiting participants.

Due to the high prevalence of DRPLA in Japan there are plans to open study sites in Japan and we have partnered with a Japanese academic organisation (TRI) to facilitate study start-up in Japan. We have supported all the sites in getting ethical approval to conduct this study, have disseminated the information broadly to facilitate the recruitment of participants and hold bimonthly meetings to ensure the project runs smoothly.

During the year Ataxia UK awarded seven grants, five via our standard these projects there are currently 23 projects being managed. In addition, we gave travel awards and a conference sponsorship.

Ataxia UK Grants

1. Dr Andreia Teixeira-Castro (University of Minho, Portugal) multimodal anti-depressant vortioxetine as a therapeutic strategy to £30,000 .

2. Dr Karen Anthony (University of Northampton, UK) trans- £30,901 .

3. Dr Francesca Salvatori (University of Ferrara, Italy) editing approach for the treatment of Spinocerebellar Ataxia Type 1 (SCA £5,000 .

4. Prof Marios Hadjivassiliou (Sheffield Teaching Hospitals NHS Trust, -

UK) £157,158 (co-funded with Coeliac UK, the Sheffield Hospital Charity and £38,000 .

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Ataxia UK | Annual Report 2022 - 2023

5. Dr Roderick Maas (Radboud University Medical Center, The Netherlands)

nerve and muscle ultrasound as potential imaging markers to quantify £29,980.54 .

DRPLA Grants (in partnership with CureDRPLA)

1. Prof Paola Giunti (University College London, UK) mitochondrial metabolism in DRPLA: a possible novel therapeutic £25,000 .

2. Prof Paola Giunti ( University College London, UK) therapeutic effect of VO659, a CAG repeat-targeting antisense £26,934.55.

Travel awards and sponsorships

1. Ataxia UK provided a travel award of £1,500 to Dr Pellerin (UCL) to attend the American Academy of Neurology Annual meeting in March and give an oral presentation on ataxia research.

2. Ataxia UK provided a sponsorship of £433 towards the CAG triplet disease disorders meeting at the Gordon Research Conference.

3. As part of the International Congress for Ataxia Research Ataxia UK also provided nine bursaries of £750 each to UK researchers to help them attend the event and encourage participation from the UK.

Analysis of research outcomes of Ataxia UK funded research

The impact of the research we fund is evaluated every year using the

UK, raises an extra £5.19

every £1 invested in research by Ataxia used specifically for ataxia

Over the 10 years our funded research has 83 papers published in scientific/medical journals and the development of 43 new research tools .

Medical Research Charities Covid Support Fund

For the second year running Ataxia UK secured a grant from the UK Government Covid Medical Research Charities Support Fund to support

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research we had funded during the year involving early career researchers in the UK. The grant of £178,794 is extremely welcome and will allow further funding of ataxia research. Being a member of the Association of Medical Research Charities (AMRC), and thus following good practice in the grant programme, meant Ataxia UK was an eligible organisation for this scheme.

towards treatments for the ataxias

Ataxia UK continues to work with pharma companies who have ataxia programmes, supporting them in advancing their research.

A number of companies are getting closer to the drug approval stage and are thus needing to collect health-related quality of life data to support them in seeking approval. Ataxia UK has worked with these companies to facilitate this process. We have also provided introductions to ataxia experts in a range of areas, promoted trials in the UK, and provided information on the research landscape, and explained the opportunities available in developing treatments for the ataxias to companies considering drug development programmes in the ataxia field.

On 28th February 2023, the company Reata pharmaceuticals announced the exciting news that Omaveloxolone (now known as SKYCLARYS) was United States. As the first drug approved to treat FA, this is a huge step for the entire community. However, it is now a priority for Ataxia UK that people with FA in the UK get access to the drug. We are doing everything we can to support and encourage Reata Pharmaceuticals to seek approval for SKYCLARYS in the UK. To drive forward the approval process in the UK, we have set up an FA Special Interest Group, which includes clinical experts, Ataxia UK staff, and parents of children with FA. The group is meeting regularly and developing an action plan. This work will continue in 2023-24. Ataxia UK also continues to work with other companies with FA programmes, as it is important to note that the currently approved drug is not a cure, and it is likely that a combination of different treatments will be needed in FA.

provided useful advice to Ataxia UK on collaboration with pharmaceutical and biotech companies, maximising our impact, and ways we can support drug development process. sed us on showcasing our work on patient engagement.

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Ataxia UK | Annual Report 2022 - 2023

-authored a paper with other medical research charities, all members of the Pistoia Alliance, that was published in the journal opportunity to highlight Ataxia UK and the work we do with pharmaceutical companies, emphasising the important role research-active patient groups play.

Multi-

Ataxia UK research staff are often invited to be partners in European and international research projects, to provide patient organisation involvement and expertise and to assist in providing the perspective of people with ataxia. Often this involves grant applications to EU or other funding schemes for research projects, and the invitations are either directly to Ataxia UK or to be representatives of Euro-ataxia (the federation of ataxia charities in Europe).

The involvement of patient groups in projects is becoming increasingly important to the success of projects. Not all applications have been successful but during the year one new project did get funding and Ataxia -ataxia representatives.

Newly funded project

Accelerating and expanding the drug repurposing pipeline for rare neurological, neurometabolic and neuromuscular disorders by exploiting SIMilarities in clinical and molecular PATHology (SIMPATHIC)

Euro-ataxia is a partner in this project that focuses on nine different rare conditions, including Spinocerebellar ataxia type 3. It aims to find and test the effect of drugs that are already available to patients for other conditions (repurposed drugs). It received funding form the European Commission -ataxia representative on this project.

The ESMI consortium has successfully established the largest cohort of systematically characterised patients with SCA3 worldwide.

The consortium is also playing an important role in the development of biomarkers. This is an extremely useful resource for running trials in Europe. A number of important publications have arisen from this project. This project Research, Dr Julie Greenfield, has continued to participate in the Steering

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Committee as a Euro-ataxia representative. Since the EU JPND funding ended the Consortium has secured funding from pharma companies to continue the project.

The PROSPAX project, launched in June 2020, is a collaborative effort between neurologists across Europe, plus Canada.

The project aims to study the progression of spastic ataxias over time, from the clinical to the molecular level, including brain imaging, markers of progression and animal models. The project focuses mostly on ARSACS and SPG7, but will establish a more general research framework applicable to other spastic ataxias over time. Euro-ataxia is involved in the project as an active partner representing European ataxia patients, and is being supported by two members of the Ataxia UK research team Dr Julie Greenfield and Dr Ruby Wallis representing Euro-ataxia. Ruby also participated and presented at the annual meeting of this project, held in Berlin. An active Patient Organisation Group is leading a Work package to create Patient Reported Outcome Measures, by creating surveys and distributing among the patient

TREAT-ARCA project

This project, started in June 2020, focuses on recessive ataxias and in particular ARSACS and ARCA2 (also called COQ8A). It aims to design a toolbox of treatments for these ataxias; including gene therapy in animal a UK Research Manager, Dr Emily Cutting, is a Eurobeen a number of research dissemination activities and plans to organise a understanding and expectations from gene therapies for the ataxias.

(EFACTS)

This is a study originally funded by the European Commission and that is The purpose is to generate a large FA patient database, alongside an integrated clinical and natural history database; this is be linked to a biological samples repository. It also aims to define a panel of clinical assessment tools for use in future trials.

Data from this study has resulted in useful publications and is also being used to plan clinical trials. Ataxia UK have supported the project over the

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Ataxia UK | Annual Report 2022 - 2023

years. There are two Euro-ataxia representatives on the Steering Committee for this project, one being from Ataxia UK (Prof Barry Hunt).

FA Global Clinical Consortium

During the year efforts have progressed in combining the efforts of EFACTS with the other well established natural history study in Friedreich ataxia, FACOMS (includes people from US, Canada, Australia, New Zealand and India). These studies have been conducted in parallel with many similarities in protocol design, objectives and study conduct. The investigators of both FACOMS and EFACTS see the need to combine efforts into a single global consortium with a unified natural history and clinical research infrastructure. The new FA Global Clinical Consortium and a harmonized global study protocol has now been established. Ataxia UK has a patient group representative (Prof Barry Hunt) on this Consortium.

-Curie

Innovative Training Network) that investigates the brain circuits that underlie emotional behaviour. The training network is focusing on the role of the cerebellum, a previously overlooked part of the brain, and its involvement in the control of emotions. The knowledge gained will inform the development of new therapeutic strategies for individuals suffering from emotional - ataxia representative.

Phase Transitions in Aging and Age-related

lead by a researcher in Portugal. It includes research projects on the when oil and water separate) in neurodegenerative conditions and in

s on the Scientific Steering Committee and has been involved in the evaluation of the progress of this training project, as well as taking part in a session on career development. A face-to-face meeting is planned during the year to support patient organisations in building capacity and Ataxia UK will be actively involved in this activity.

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The Ataxia Global Initiative is a worldwide research network with the goal of facilitating the clinical development of therapies for ataxias. Dr Julie ead of Research) continues to be a Steering Committee Member and coWorking Group, tasked with setting all the policies for the initiative. A paper has been published in the medical journal Cerebellum explaining about AGI, and other consensus papers will follow with guidance and recommendations on data collection in the ataxias in a range of topics covered by the working groups (clinical assessments, brain scanning, biofluid sample collection, digital biomarkers).

A successful annual conference took place in November 2022, alongside the International Congress for Ataxia research (ICAR 2022). A number of other important initiatives have taken place. For example, the AGI program aims to develop a generally accepted ataxia rating scale that can be used in upcoming clinical trials and to this end a first AGI Consensus Conference took place in Bonn in January; Julie Greenfield attended as a patient representative.

AGI membership (academics and representatives from patient groups and pharma) has reached over 250 and there are 20 partner organisations. AGI works closely with Consortium hosted by the US not-for-profit organization Critical Path Institute. This Global Consortium aims to bring together experts from across different fields of ataxia research, patient groups and pharma companies to he development of approved medicines for the ataxias. A crucial aspect of the Consortium is that it includes experts from regulatory bodies such as the US Food and Drugs Administration (FDA) in its discussions. Ataxia UK is a partner of this initiative and attends regular meetings.

One mutation one medicine (1M1M) project

1M1M is a project set up by researchers in Germany and the Netherlands to develop antisense oligonucleotides as treatments for very rare genetic neurological conditions, where there may be only one or very few individuals worldwide with a particular gene mutation.

At the moment, the only ataxias being considered are Ataxia telangiectasia the Treatment Advisory Board, as part of the collaborative work with the AT Society.

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Ataxia UK | Annual Report 2022 - 2023

AT Society Collaboration

Ataxia UK has continued to provide a research support service to the Ataxia During the year we supported them in their research grant programme, and other research activ Board following advice from the AMRC in the charity audit exercise. In addition, a new Biomarkers in AT Working Group was established to progress this area of research.

Recruitment of Participants to Research Studies

Having a database of people with ataxia puts Ataxia UK in a unique position to support research via the recruitment of participating volunteers. During the year we have supported the 7 research projects and an additional 9 surveys/interview-based studies.

Ataxia UK research staff have attended meetings and conferences throughout the year. This has been very useful in raising the profile of ataxia and Ataxia UK, creating opportunities to establish new partnerships and encouraging further research in ataxia.

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Research Aims for 2023 - 2024

Care and Support Services for People Affected by Ataxia

Care and support aims for 2022-23

In May 2022, Ataxia UK welcomed a new specialist Helpline & Advocacy Officer to support both the Helpline Team and the wider ataxia community. As a result, we have observed a rise in contacts across all support topics, indicating the valuable contribution of this role. To ensure the sustainability of our services provision, we have submitted applications for grant funding, including to the National Lottery Community Fund. These efforts are aimed at securing the necessary resources to continue offering essential support to those affected by ataxia in the future.

Work is under way on developing the All About Ataxia+ series and we continue to work with the ataxia community on developing, delivering and monitoring services.

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Ataxia UK | Annual Report 2022 - 2023

The Services Team

The InControl project, funded by the National Lottery Community Fund, which commenced in October 2019, reached its conclusion in October 2022. As a result of this project, the staff working on InControl have now been integrated with the Helpline and Advocacy Service to form the Ataxia UK Services Team. The team and our dedicated volunteers provide information,

The Services Subgroup

The Services Subgroup to the board meets 4-5 times per year and provides strategic and critical oversight of services activity. The group is chaired by a person with ataxia and comprises Ataxia UK staff, the Chief Executive, Head of Services and Advocacy & Community Services Officer and 4 other representatives from the ataxia community.

Virtual Activities (not including Conference)

We hosted a diverse range of 54 virtual activities, which have been attended by more than 540 participants. Activities include monthly wellbeing sessions, Occupational Therapy activities, Wellbeing Week, Volunteers Week, and various information sessions. We have continued to develop activities in a virtual format, ensuring that individuals affected by ataxia can continue to access important services and support. These activities have proven to be an effective means of enhancing the wellbeing of participants and fostering a sense of community for people affected by ataxia.

All About Ataxia

All About Ataxia seminars aim to give people who have a relatively recent diagnosis information about ataxia, although we know that people who have been diagnosed much longer have also found them useful. Hosted quarterly we have delivered All About Ataxia to 70 people.

All About Ataxia+

We are working on the development of our latest initiative, All About Ataxia+. Our objective is to deliver a series of seminars that focus on addressing specific issues faced by individuals in the ataxia community. The seminars will be structured in a similar format to our highly successful All About Ataxia series, which features informative videos and facilitated discussion groups.

We are excited to be taking this new initiative forward and anticipate that it will provide valuable insights and support to those impacted by ataxia. This program will be an essential resource for individuals seeking to deepen their

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understanding of the challenges associated with ataxia and to gain practical strategies for enhancing their quality of life.

Branch and Support Groups

We have a network of 44 branches and support groups across the UK, which are established and operated by our dedicated volunteers. These groups provide essential support and information for people affected by ataxia, and serve as a place for members to connect, have fun, and share experiences.

We have been delighted to welcome new groups to our network, including our Virtual Support Group, which has proven to be a valuable addition. Our groups have held more than 118 meetings, which have been attended by at least 792 individuals. Our network of branches and support groups plays a critical role in supporting and empowering the ataxia community.

Volunteering

We welcomed 8 new volunteers to the team In recognition of their invaluable contributions, we celebrated our volunteers during Volunteers Week in June. As part of the celebrations, we organized various activities and sent handwritten thank-you cards to our volunteers to express our gratitude for their dedication and hard work.

During the summer months, Genetic Alliance hosted two volunteer focus groups, aimed at learning from our volunteers about their experiences of volunteering with Ataxia UK. The insights gained from these focus groups, combined with feedback from our 2022 wellbeing survey, will be used to develop strategies to better engage volunteers from the ataxia community going forward.

We recognize the tremendous impact that our volunteers have on the ataxia community. We are grateful for their time, expertise, and unwavering commitment to supporting those affected by ataxia.

Wellbeing Survey

We launched our 2022 Wellbeing Survey, aimed at assessing the impact of COVID-19, volunteering, and Ataxia UK services on the ataxia community. We are pleased to report that we received an impressive response, with more than 300 individuals participating in the survey. This feedback will be instrumental in shaping our future strategies and ensuring that we continue to provide relevant and effective support to those affected by ataxia.

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Ataxia UK | Annual Report 2022 - 2023

Ataxia Connect

We rebranded and relaunched Ataxia Connect, our befriending service aimed at reducing feelings of loneliness and isolation among individuals in the ataxia community. Ataxia Connect matches people with lived experience of ataxia with others who are seeking a listening ear and understanding of the condition. We are proud to report that the service has worked with 17 dedicated volunteers and 20 service users throughout the year. The impact of the service has been profound, helping to foster meaningful connections and enhance the wellbeing of those affected by ataxia.

Diverse Placements

Ataxia UK hosted two diverse placements for four MSc Occupational Therapy students from the University of Brighton. Throughout their placement, the students had the opportunity to gain valuable insights into ataxia and the ataxia community, which will undoubtedly prove beneficial as they prepare to graduate in 2023. They received support from a consultant Occupational Therapist, who is a member of the Ataxia UK board of trustees and has ataxia themselves.

During their placement, the students participated in a wide range of activities. They provided information to the ataxia community about Occupational Therapy and its potential to assist individuals with ataxia in carrying out the activities they want and need to do. They also organised therapeutic sessions focused on art therapy, mindfulness, and movement, as well as 1- 2-1 Occupational Therapy, all delivered remotely. Through these placements, we are committed to promoting the importance of Occupational Therapy in the management of ataxia, as well as supporting the development of future professionals in this field.

Scottish Advice Service

We are pleased to announce that Ataxia UK has collaborated with Parkhead CAB in Glasgow on a two-year project aimed at offering specialised advice to the ataxia community in Scotland. This initiative has been made possible through funding from CAB in Scotland and Hugh Fraser. In February of this year, Parkhead recruited a Rare Conditions Adviser who will be responsible for spearheading this project. The adviser will work closely with the Ataxia UK Services Team and the ataxia community itself. The project is set to commence in April 2023, and we look forward to seeing the positive impact it will have on the ataxia community in Scotland.

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Helpline & Advocacy Service Helpline

Our Helpline received a total of 1,258 contacts from individuals seeking support and guidance. These contacts pertained to a diverse range of issues, with at least 950 individuals benefitting from the assistance provided.

In total, 1,557 issues were addressed , including but not limited to, welfare benefits, social care, housing, and aids and adaptations. Through the Helpline, we remain committed to offering vital support to those affected by ataxia, as well as their families and carers.

Issue type Number of people
supported
Health inc. referral,
diagnosis & access to
services		 431
Access to Ataxia UK
services		 404
Support & information 237
Welfare benefits, grants &
finances		 175
Social care inc. housing,
aids & adaptations		 110
Research & fundraising 63
Education & employment 27
Insurance & travel 23
Not recorded 70

Advocacy Service

Our Advocacy Officer provided 1-2-1 advocacy support to 51 people on a range of topics including those mentioned above and we have supported the ataxia community to secure £31,307 in grants and unclaimed benefits.

Membership

We welcomed 575 new Friends of Ataxia UK in 2022 - 2023.

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Ataxia UK | Annual Report 2022 - 2023

Care & Support Aims for 2023 2024

Expand the Helpline and Advocacy Service further.

Improvements in Treatments & Care

Treatment & Care aims for 2022 2023

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Publish Ataxia Medical Guidelines

Progress is being made in updating the Ataxia Medical Guidelines to help health professionals diagnose and manage people with ataxia. Specialist contributors for all sections have been identified and many sections have been updated. The Guideline Development Group has been reviewing the sections throughout the year. As this is a very long document, we anticipate that the publication of the new Guidelines will take place before the end of the coming year.

Launch a Paediatric Ataxia Centre in London

An Ataxia UK accredited paediatric ataxia clinic has been launched at the London Ataxia Centre. The Paediatric Ataxia Clinic brings a new service to the London Ataxia Centre, at the National Hospital for Neurology and Neurosurgery (NHNN), enabling children with ataxia to receive care at this centre of excellence. The clinic team at the Paediatric Ataxia Clinic includes Professor Paola Giunti (who also leads the Adult Ataxia Centre), Dr Shpresa Pula (consultant in Paediatric Neurology), and Katarina Manso (ataxia nurse).

The Paediatric Ataxia Clinic leads a large translational research programme, which aims to put research findings into practice. It's primarily focused on the for children aged 8-18. Ataxia UK has provided part-funding for the Ataxia Specialist nurse to support the Clinic.

Accredit further Ataxia Centres

During the year Ataxia UK accredited a Specialist Ataxia Centre in Oxford, at the John Radcliffe Hospital. All Ataxia UK-accredited Specialist Ataxia Centres are centres of excellence, where people with ataxia receive the best quality of care from ataxia experts. The Oxford Ataxia Centre offers a specialised service for adults and children with ataxia and has two adult neurologists (Dr Tofaris and Dr Rinaldi), a clinical geneticist (Prof Nemeth) and a paediatric neurologist (Dr Smith).

There are now three Ataxia UK accredited Ataxia Centres in the UK supporting adults and children with ataxia. These are based in London, Sheffield and Oxford.

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Ataxia UK | Annual Report 2022 - 2023

online speech therapy courses and Voicebanking

The Gift of Speech project seeks to address the speech difficulties faced by people with ataxia. We offer an online speech therapy course aimed at slowing the progression of ataxia speech symptoms. Additionally, we fund voice banking services that facilitate the development of a customised synthetic voice to be used with a communication aid in the event that speech becomes incomprehensible due to ataxia symptoms.

Speech Therapy - Our Speech Therapy program consists of a 6-week course that begins with four individual sessions with our Speech and Language Therapist. During these initial sessions, participants receive personalised guidance to identify and work on areas for speech improvement. Following this, participants join a small group of 5-6 individuals for daily sessions over the next 4 weeks. There are five group sessions each week, one of which is led by the Speech and Language Therapist.

35 Friends of Ataxia UK have undertaken the course and there are a further 41 people on the waiting list.

We are proud to report that 62% of participants experienced improved communication as a result of the course, with over half (54%) doing more talking and feeling more confident speaking to people outside of their immediate social circle. Additionally, speech therapy course alumni have formed a group which meets monthly.

Voice Banking we now offer funding for people with ataxia to bank their voice with SpeakUnique. Voice Banking involves recording an individual's natural voice, to be used to create a personalised synthetic voice. This means people can retain their identity and communicate in a voice that sounds like their own, even when natural speech is not possible.

Voice Banking is designed to be inclusive, ensuring that everyone has access to a personalised synthetic voice, even if their natural voice is already unintelligible. Voice Design uses various voice characteristics, such as age, gender, and regional accent, to create a unique and tailored voice. Additionally, individuals have the option to use old recordings or donor voices to create their synthetic voice.

Since we launched in June 2022 we have funded 10 people with ataxia to download their personalised voice. In addition to this, 81 people with Ataxia have registered with SpeakUnique and of those 37 people have completed the voice banking process and created a voice.

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Develop an Ataxia Specialist Nurse Project

Regrettably, our funding application to the Scottish National Lottery for the launch of our Specialist Nurse pilot in Scotland was unsuccessful. However, we have submitted an application to the English National Lottery Community Fund for a project that includes the introduction of a peripatetic specialist nurse service in the Southwest region.

This region lacks access to ataxia specialist services, as the specialist centres in London, Oxford, and Sheffield are quite far away. The introduction of a specialist nurse will significantly improve access to appropriate, coordinated, and specialist care for people with ataxia in the Southwest.

Other A S Improvements in Treatments & C

Clinical Care Pathways in England published

The optimal clinical pathway sets out what good treatment, care and support looks like for people with neurological conditions, from those experiencing the first symptoms, to those that have lived with such conditions for a long time. When Ataxia UK was notified that a pathway was going to be created for people with movement disorders in England, we successfully lobbied for a pathway specifically for people with ataxia to be included.

The Ataxia Health Care Pathway, developed by ataxia specialists and Ataxia UK, shows the ideal route to care within the NHS for people with ataxia, and emphasises the important role of the specialist ataxia centres. This is part of a suite of optimal neuroscience clinical pathways that have been developed by the neurological community, with the support of NHS England and the National Neurosciences Advisory Group (NNAG).

and January 2023) and provided advice to Ataxia UK on a number of important topics. The meetings are also an opportunity for Ataxia UK to provide an update on the latest activities and for the group to be kept updated on research developments they are each involved in.

In January a discussion was held about the potential approval of the first Committee would meet again after the decision from the FDA and this meeting is scheduled. Ataxia UK has in the meantime been consulting with Ataxia UK Medical Advisors who joined the FA Special Interest Group (see above).

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Ataxia UK | Annual Report 2022 - 2023

The creation of a new service provided by Ataxia UK was discussed called cases for advice from a group of ataxia experts. Advice could be sought on both diagnosis and management issues. This service was suggested by a member of the Committee, and it was agreed this could be a valuable new service to improve the care of people with ataxia in the UK. Planning is underway and we are aiming to pilot this in the coming year. Another topic of discussion was a concern around payments of the costs involved in brain donations. Ataxia UK will investigate this further.

Ataxia UK is a partner in this European Brain Council project, that focuses on evaluating coordinated care in three rare neurological diseases. The ataxia study is run by the Prof Giunti at the London Ataxia Centre and it has involved surveying people with ataxia in the UK, Germany and Italy assessing the value of Ataxia Centres. The results of this project highlight the value of coordinated care and specialist centres to address the challenges for people living with ataxia.

Based on these results, the ataxia case study working group together with the European Brain Council made a number of recommendations designed to increase access to, and raise awareness of, Specialist Ataxia Centres, as well as improving education on management of the ataxias amongst primary care settings. Three papers have been written with the results of this project and these have submitted to medical journals.

The first paper focuses on the differences to the care that people with ataxia may receive in the different settings, the second focuses on the differences in costs and the third is a paper focusing on recommended patient pathways for Europe. In addition, results were presented at the International Congree for Ataxia Research in 2022.

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Ataxia UK Ethics Review Committee

Research studies, such as surveys, that are distributed to Friends of Ataxia UK or shared on our social media channels must first be reviewed by the Ethics Review Committee. This Committee comprises five members, who either have ataxia or are family members of people affected by ataxia. The Ethics Review Committee met seven times throughout the year.

The Committee reviewed seven surveys and interview-based trial and a research workshop.

Raising awareness and understanding of ataxia amongst healthcare -

ataxia via our e-newsletters sent to around 300 people on the Registry four times a year. In addition, this group was also sent communications about the International Congress for Ataxia Research.

Sheffield Adult Ataxia Centre Royal Hallamshire

The team at the Accredited Ataxia Centre consists of two neurologists a large concentration of expertise. In addition, they have close links with the s Ataxia Centre below, which facilitates the transition between A grant was awarded during the year by Ataxia UK, Coeliac UK and other funders (see above) to improve diagnosis and management of gluten ataxia, an area of expertise of this Centre.

specialist paediatric During the year there has been a change in the nurse at the Sheffield Paediatric Centre.

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Ataxia UK | Annual Report 2022 - 2023

London Adult Ataxia Centre UCL/UCLH National Hospital for

The London Ataxia centre, led by Prof Giunti, now runs four ataxia clinics a week, with the support of a full-time Ataxia Nurse. There is also a multidisciplinary clinic, where patients see the neurologist along with other healthcare professionals, such as speech and language therapists and physiotherapists. In addition, there is a vestibular clinic and neuroophthalmology and neuro-urology clinics, providing even more integrated care.

trials. Her research laboratory studies a wide range of ataxias and is the only UK site for European natural history projects on the SCAs and this Centre has been involved in the Reata Pharmaceuticals drug trial that has lead to the first drug to be approved in FA (currently only in the US).

The Centre is also supported by Ataxia UK clinic volunteers. Since the pandemic the support has changed from face-to-face to phone and online support.

New Ataxia Centres

As detailed above during the year a paediatric Ataxia Centre has been accredited in London and an Adult and paediatric Centre was accredited in Oxford.

Euro-

Euro-ataxia is the federation of ataxia charities across Europe, with 20

A Euro-ataxia AGM and annual meeting was held virtually in June 2022. This was attended by 16 of the 20 Member groups. A new Trustee was appointed from the Greek FA Association and all other Trustees stayed on the Board. Euro-ataxia is a partner in.

in organising a face-to-face Euro-ataxia annual meeting and conference in May 2023. This will be the first in-person event since 2019, and is proving to be a popular event.

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ing from the EU and other funders. Eurosucceeded in getting funding and Euro-ataxia is a partner (see above).

Supporting charities in lobbying for improvements in care and

organisations, including Genetic Alliance UK/Rare Disease UK, the Association of Medical Research Charities (AMRC) and the Neurological Board of Trustees of the Wales Neurological Alliance. All of these organisations seek to influence and improve investment, policy and practice in activities and services which influence the lives of people affected by ataxia, and we actively engage in their training, policy development, surveys and lobbying activities.

The Government launched the follow up initiative to the Rare Disease Strategy: The UK Rare Diseases Framework in early 2021. Sue Millman represents the Neurological Alliance (England) on the UK Rare Diseases Forum. The Forum enables engagement and collaboration between patient advocates, the UK Rare Disease Framework Board, the Delivery Group/ implementation boards for England and the devolved nations. ~~T~~ he CEO has attended numerous meetings during the year regarding the Rare Disease Framework.

Treatments & Care Aims for 2023 2024

35

Ataxia UK | Annual Report 2022 - 2023

Fundraising

Our strategic fundraising priorities for the financial year 2022 2023 were:

Recruit New Regular Givers

Due to a decline in overall income and the challenging economic environment, we decide to implement cost-saving measures. As a result, we temporarily paused our investment in recruiting regular givers, which led to a net saving of £25k for the year.

Maintaining Income

Overall fundraising income is 10% lower than the previous financial year. The primary contributors to this is a 48% decline in donation from major donors and a 15.5% decline on legacy donations. Both of these income streams are positive or negative, tend to be significant. Income in Individual Giving is down 1% which considering the wider economic environment is acceptable. Income from Events and Community Fundraising grew by 3% on the previous financial years performance and is an encouraging step forward in getting back to pre-pandemic levels.

Throughout the financial year, the fundraising environment continued to challenge as we moved out of the worse of the Covid-19 pandemic and into a cost-of-living crisis.

This has been reflected in our income figures and whilst there are some areas of improvement, overall fundraising income is down 10% on the previous year.

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Plugging Skills Gaps

Through the appointment of some key personnel, we have managed to plug our primary skill gaps in Digital Media, Facebook Advertising and Website management and are now working on a programme of continual improvements.

Supporter Journey

We have started to work on the user experience with a particular focus on the digital journey and supporter stewardship.

Content

We have made a number of improvements to our fundraising and marketing communications including the introduction and implementation of a new case for support and beginning the recording of content for a new documentary.

Consent

Being able to communicate with supporters in the ways they want to hear from hear from us is essential. We have explored new ways to keep our supporters updated including specialist topic newsletters and improving the ease of sign up.

Our Approach to Fundraising

Ataxia UK has an in-house fundraising team undertaking a range of activities including:

Direct marketing

This financial year we worked with an agency - who helped us prepare Trust and Foundation bids throughout the year. All their work is monitored and reviewed by Ataxia UK before submission. We did not work with commercial participators this financial year.

Supporters fundraise on our behalf and are given support throughout their

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Ataxia UK | Annual Report 2022 - 2023

Ataxia UK is registered with the Fundraising Regulator, and we are Promise which set the standards for fundraising behaviours in our interactions with the public and our supporters. We have a Vulnerable Persons Fundraising Policy which sets out how we identify such potential vulnerability and how we aim to respond in such circumstances. In this

Our Supporters

The vision of a world without ataxia will only be realised through the support and generosity of the ataxia community. They help make everything in this report possible and we are incredibly grateful for their passion, commitment and support.

Highlights

Garfield Weston supported us with an unrestricted gift

Our strategic Fundraising priorities for the financial year 2023 2024 are:

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Communications

Our strategic Communications priorities for financial year 2022 2023 were:

The Communications Team continued to support the ataxia community in 2022 2023 by providing key information at vital points throughout and the number of subscribers grew by 13%.

We also implemented a new visual identity, which helped double our click rates.

We made significant improvements to the website, including improving the loading speed, implementing a new visual identity, and introducing a new, more user-friendly page design. We also made a number of other improvements to the user experience.

As reported in the fundraising section, we increased our focus on the production of content, including making a start on our first documentary! This will focus on the ataxic journey of one of our supporters Ben and document his life with ataxia as well as his awareness-raising effort to highlight accessibility on the London Underground network by travelling to every single one of the 272 tube stations. His effort has also been picked up by a number of media outlets including the ITV News, BBC London and Euronews, which brought a lot of attention for the charity and the condition.

Our strategic communications priorities for financial year 2023 2024 are:

39

Ataxia UK | Annual Report 2022 - 2023

Financial Review For the year ending 31 March 2023

Overview

In what has continued to be a challenging environment due to the ongoing impact of the current economic climate, we are filled with gratitude for the continued support and generosity of our supporters. The charity has successfully navigated the year and will continue to ensure that our income is used in the most effective way to meet our strategic goals.

The Balance Sheet and Statement of Financial Activities shows a significant improvement in Ataxia UK s funds, as a result of a £167K surplus in the year (2021/22: £234K). The charity has moved from a net liability position of (£128K) in the 2021/22 financial year to a net asset position of £39K in the current year. A net liabilities position still exists for the restricted funds on the balance sheet due to the 3 years expenditure commitment being made for the DRPLA and NKX6-2 projects in 2020/21, whilst the funding will be received gradually over the 3 year period of the projects. The projects had a delayed start so the funding has been pushed out by a further year but the situation will be resolved over the next 2 years as year 1 funding has already been received.

The deficit in restricted funds, of which DRPLA and NKX6-2 funds are part, have also decreased over the year to (£687K) (2022: (£851K)). Once the outstanding restricted funds are removed the net total is £424K (2022: £243K). General unrestricted funds have increased to £726K (2022: £724K). Further details of reserves are given later in this review. We continue to maintain a healthy cash flow and have cash at bank and in hand of £1.6 million.

Review of income

Total income for 2022/23 was £1,450K (2021/22: £1,575K) a decrease of 7.9%. Donation income was lower than the previous year, £743K (2021/22: £858K) a decrease of 13.4%. Legacy income has decreased to £218K for the year (2021/22:

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£258K), a decrease of 15.5%. We remain very grateful to the Friends and supporters who remember us in this way. Income from fundraising activities increased to £242K (2021/22: £240K) an increase of 1%. The decrease in donations is a reflection of the current economic situation where supporters the past. Childlife income increased to £100k (2022: £80K) an increase of 25%. The lottery grant for the In Control project came to an end in September and as result the funding decreased from £89k in 2021/22 to £48k in the current year. Other income is made up of conference income of £20K, the ICAR 24 conference income of £49k, research contract income £18k, welfare grants of £4K, goods & services provided for free 6.3K and interest income £1.5K.

Review of expenditure

Total expenditure for 2022/23 was £1,283K (2021/22: £1,341K) a decrease of 4.3%. Spending on research activities increased slightly to £512K (2021/22: £501K), an increase of 2.2%. There was a reduction in research grants being made in the year, £188K versus £249K in 2021/22, a decrease of 24.5% on prior year. DRPLA grants amounted to £52K which was 27.6% of the research grants made during the year. The detailed breakdown of the research grants made can be found in note 9. There was a 7.3% decrease in spend on care services to £307K (2021/22: £331K). Cost of raising awareness decreased slightly (4.8%) from the previous year to £100K (2021/22: £105K). Expenditure on raising funds decreased slightly to £296K (2021/22: £340K). Governance costs increased by 6.3% to £68K (2021/22 £64K) due to inflation.

Reserves levels at year end

----- Start of picture text -----
2023(£K) 2022(£K)
----- End of picture text -----

General funds 383 570
Designated funds 343 154
Total unrestricted funds 727 724
Restricted research funds (844) (951)
Restricted services funds 157 99
Total restricted funds (687) (852)
Total funds held 40 (128)

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Ataxia UK | Annual Report 2022 - 2023

The charity saw an increase in reserve levels ending the year on £39K (31 March 2022: (£128K)), due to the total net income of £167k generated in the year.

Restricted funds were (£687K) (2021/22: (£852K)), (detailed in Note 22) with their still being deficit positions for DRPLA and NKX6-2. These deficit positions have not decreased in the year due to a delay in the start of the research projects so year 2 and year 3 payments have been pushed out by a year. Ataxia UK has signed agreements in place outlining the payment structure ensuring these future commitments will be met.

Designated Funds totalled £343K (2021/22: £154K) representing funds held at branches (£8K) and other designated funds (£335k) as detailed under Note 21. The trustees have released 3 designated funds during the year. These were unrestricted funds which were set aside by trustees for a future purpose. The designated funds released in the year were:

And also included in other designated funds are premises fund, £50K: Funds are being set aside to build a reserve to cover costs of moving and setting up new premises in case we need to move at the end of our 3-year term.

General reserves of the charity as at 31 March 2023 were £384K (31 March 2022: £570K) a 33% decrease. The trustees consider that it is both prudent and appropriate as part of their risk management policy to maintain a minimum level of contingency within free reserves to provide against any unforeseen changes in income and/or expenditure. The reserves policy continues to be that holding unrestricted free reserves equal to 3 to 6 months operating costs (presently £72K per month, 2021/22: £70K per month) and given the current challenging economic environment Ataxia is leaning towards 5 months to ensure the ongoing stability of the charity. This reflects a balance between being prudent and allowing the charity to direct as much resource calculated as general funds less the net book value of tangible fixed assets, £16K (2021/22: £22K). As at 31 March 2023, free reserves totalled £367K (2021/22: £548K) equating to 5 months operating costs (2021/22: 7.83 months) and is therefore within the reserves policy.

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Going Concern

With the impact of the current economic climate on charity giving, the importance of having adequate reserves, as detailed above, continued to be a priority. We are blessed by the generous support of the ataxia community. Due to the current challenging economic conditions as a result of world events, we will maintain the close scrutiny of the management accounts and cashflow and take whatever steps necessary to ensure the continued viability of the charity.

Statements of

The Trustees, who are also the directors of Ataxia UK for the purpose of company law, are respo with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

Company Law requires the Trustees to prepare accounts for each financial year which give a true and fair view of the state of affairs of the charitable company and the incoming resources and application of resources, including the income and expenditure, of the charitable company for that year.

In preparing the accounts, the Trustees are required to:

The Trustees are responsible for keeping adequate accounting records that disclose with reasonable accuracy at any time the financial position of the charitable company and enable them to ensure that the accounts will comply with the Companies Act 2006, Charities and Trustee Investment (Scotland) Act 2005 and the Charities Accounts (Scotland) Regulations 2006. They are also responsible for safeguarding the assets of the charitable company and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

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Ataxia UK | Annual Report 2022 - 2023

Statement as to disclosure to our auditors

Insofar as the trustees are aware:

auditors are unaware; and

The trustees have taken all steps that they ought to make themselves aware of any relevant audit information and to establish that the auditors are aware of that information.

In preparing this report, the trustees have taken advantage of the small companies exemptions provided by section 415A of the Companies Act 2006.

Approved by the trustees on 26/07/2023 and

signed on their behalf by;

William Littleboy, Chair

Kathy Jones - Treasurer

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Opinion

We have audited the financial statements of Ataxia UK for the year ended 31 March 2023 which comprise the Statement of Financial Activities, the Balance Sheet, the Statement of Cash Flows and notes to the financial statements including a summary of significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including Financial Reporting Standard 102: The Financial Reporting Standard applicable in the UK and Republic of Ireland (United Kingdom Generally Accepted Accounting Practice).

In our opinion, the financial statements:

Basis for opinion

We conducted our audit in accordance with International Standards on Auditing (UK) (ISAs (UK)) and applicable law. Our responsibilities under those standards are further lities for the audit of the financial statements section of our report. We are independent of the Charity in accordance with the ethical requirements that are relevant to our audit of the financial statements in the UK, and we have fulfilled our other ethical responsibilities in accordance with these requirements. We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our opinion.

Conclusions relating to going concern

In auditing the financial statements, we have concluded that the trustees' use of the going concern basis of accounting in the preparation of the financial statements is appropriate.

Based on the work we have performed, we have not identified any material uncertainties relating to events or conditions that, individually or collectively, may cast for a period of at least twelve months from when the financial statements are authorised for issue.

Our responsibilities and the responsibilities of the trustees with respect to going concern are described in the relevant sections of this report.

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Ataxia UK | Annual Report 2022 - 2023

Other information

The trustees are responsible for the other information. The other information comprises the information included in the annual report other than the financial does not cover the other information and, except to the extent otherwise explicitly stated in our report, we do not express any form of assurance conclusion thereon.

In connection with our audit of the financial statements, our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements or our knowledge obtained in the audit or otherwise appears to be materially misstated. If we identify such material inconsistencies or apparent material misstatements, we are required to determine whether there is a material misstatement in the financial statements or a material misstatement of the other information. If, based on the work we have performed, we conclude that there is a material misstatement of this other information, we are required to report that fact.

We have nothing to report in this regard.

Opinion on other matters prescribed by the Companies Act 2006

In our opinion, based on the work undertaken in the course of the audit:

Matters on which we are required to report by exception

In the light of the knowledge and understanding of the Charity and environment obtained in the course of the audit, we have not identified material misstatements in

We have nothing to report in respect of the following matters in relation to which the Companies Act 2006 or the Charity Accounts (Scotland) Regulations 2006 (as amended) requires us to report to you if, in our opinion:

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Responsibilities of the trustees

responsible for the preparation of the financial statements and for being satisfied that they give a true and fair view, and for such internal control as they determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error.

In preparing the financial statements, the trustees are responsible for assessing the C related to going concern and using the going concern basis of accounting unless the trustees either intend to liquidate the Charity or to cease operations, or have no realistic alternative but to do so.

Our responsibilities for the audit of the financial statements

Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or is a high level of assurance but is not a guarantee that an audit conducted in accordance with ISAs (UK) will always detect a material misstatement when it exists. Misstatements can arise from fraud or error and are considered material if, individually or in the aggregate, they could reasonably be expected to influence the economic decisions of users taken on the basis of these financial statements.

Irregularities, including fraud, are instances of non-compliance with laws and regulations. We design procedures in line with our responsibilities, outlined above, to detect material misstatements in respect of irregularities, including fraud. The extent to which our procedures are capable of detecting irregularities, including fraud are set out below.

Capability of the audit in detecting irregularities

In identifying and assessing risks of material misstatement in respect of irregularities, including fraud and non-compliance with laws and regulations, our procedures included the following:

We enquired of management, which included obtaining and reviewing supporting

We inspected the minutes of meetings of those charged with governance.

47

Ataxia UK | Annual Report 2022 - 2023

We obtained an understanding of the legal and regulatory framework that the charity operates in, focusing on those laws and regulations that had a material effect on the financial statements or that had a fundamental effect on the operations of the charity from our professional and sector experience.

We reviewed the financial statement disclosures and tested these to supporting documentation to assess compliance with applicable laws and regulations.

We performed analytical procedures to identify any unusual or unexpected relationships that may indicate risks of material misstatement due to fraud.

In addressing the risk of fraud through management override of controls, we tested the appropriateness of journal entries and other adjustments, assessed whether the judgements made in making accounting estimates are indicative of a potential bias and tested significant transactions that are unusual or those outside the normal course of business.

Because of the inherent limitations of an audit, there is a risk that we will not detect all irregularities, including those leading to a material misstatement in the financial statements or non-compliance with regulation. This risk increases the more that compliance with a law or regulation is removed from the events and transactions reflected in the financial statements, as we will be less likely to become aware of instances of non-compliance. The risk is also greater regarding irregularities occurring due to fraud rather than error, as fraud involves intentional concealment, forgery, collusion, omission or misrepresentation.

A further description of our responsibilities is available on the Financial Reporting

Use of our report

body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006 and under Section 44(1) (c) of the Charities and Trustee Investment (Scotland) Act 2005. Our audit work has been ers we are extent permitted by law, we do not accept or assume responsibility to anyone other rt, or for the opinions we have formed.

Anthony Epton (Senior Statutory Auditor) for and on behalf of Goldwins Limited Statutory Auditor Chartered Accountants 75 Maygrove Road West Hampstead London NW6 2EG

48

rAXIA ATAXIA UK STATEMENT OF FINANCIAL ACTIVITIES {incorporaling the iwme and expendf(ure account) {incorporaling the results of the Charity's branches) for the year ended 31st March 2023 Unrestricted Restricted Total Total funds funds funds funds 2023 2022 Notes Income Donations and legacies Other trading activities Charitable activities 464. 607 496,619 19,956 223,804 961,220 242.021 245,447 1.464 740,379 1,450, 152 I, f 16,428 239, 962 218,117 222,065 21,643 1,464 709, 773 Investments Total incorne 1, 574,508 Expenditure on: Raising funds Charitable activities Total expenditure (196, 757) (6, 342) (203,099) (482, 793) (598, 026) (1.080,219) (678, 950) (604, 368) (1,283.318) (235, 028) (1, 105, 659) (1,340, 687) Net losses on investments Net incomellexpenditurel 30, 823 136,Of I 166,834 233,82t Transfer from Unrestricted to Restricted (28,539) 28,539 Net movement in fu￿lS 2,284 164,550 166,834 233,82t Total funds brought forward Total funds carried forward 723, 913 (851, 436) (f 27.523) 726, 197 (686, 886) 39,311 (367,344) (127, 523) The SOFA has been prepared on the basis that all operations are continuing. All recognised gains and losses are i￿luded in the SOFA. The accompanyirKJ pages form part of these fina￿la1 statements. 49

Ataxia UK | Annual Report 2022 - 2023

ATAXIA UK

STATEMENT OF FINANCIAL ACTIVITIES

(incorporating the income and expenditure account) (incorporating the results of the Charity's branches) for the year ended 31st March 2022

Notes
Income
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
Restricted
Total
funds
funds
funds
2022
£
£
£
590,170
526,258
1,116,428
221,390
18,572
239,962
8,510
209,607
218,117
1
-
1
820,071
754,437
1,574,508
(228,420)
(6,608)
(235,028)
(466,381)
(639,278)
(1,105,659)
(694,801)
(645,886)
(1,340,687)
-
-
-
125,270
108,551
233,821
-
-
-
125,270
108,551
233,821
598,643
(959,987)
(361,344)
723,913
(851,436)
(127,523)

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.

50

ATAXIA UK

BALANCE SHEET As at 31st March 2023

Notes
Fixed assets
Tangible assets
14
Current assets
Debtors
15
Cash at bank and in hand
16
Creditors: amounts falling due within one year
17
Net current assets
Total net assets less current liabilities
Creditors: amounts falling due after more than
18
one year
Total net assets/(liabilities)
19
Accumulated funds
Unrestricted funds
General funds
20
Designated funds
21
Restricted funds
22
Total funds		 £
£
£
£
16,362
21,624
16,362
21,624
365,041
272,777
1,589,232
1,760,675
1,954,273
2,033,452
(966,568)
(836,495)
987,705
1,196,957
1,004,067
1,218,581
(964,756)
(1,346,104)
39,311
(127,523)
383,508
569,800
342,689
154,113
726,197
723,913
(686,886)
(851,436)
39,311
(127,523)
2023
2022

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.

William Littleboy, Chair

Kathy Jones - Treasurer

The accompanying pages form part of these financial statements. Charity Number: 1102391 Company Number : 04974832

51

Ataxia UK | Annual Report 2022 - 2023

ATAXIA UK Statement of Cash Flows For the year ended 31 March 2023

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
Proceeds from sale of investments
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
Net losses on investments
Dividends and interest from investments
(Increase)/Decrease in stocks
Decrease in debtors
Increase in creditors
Net cash provided by operating activities
Analysis of cash at bank and in hand less overdrafts
Cash at bank and in hand		 2023
2022
£
£
(168,296)
144,012
1,464
1
(4,611)
(810)
-
-
(3,147)
(809)
(171,443)
143,203
1,760,675
1,617,472
(171,443)
143,203
1,589,232
1,760,675
2023
2022
£
£
166,834
233,821
9,873
9,132
-
-
(1,464)
(1)
-
6,218
(92,264)
(60,683)
(251,275)
(44,475)
(168,296)
144,012
2023
2022
£
£
1,589,232
1,760,675
1,589,232
1,760,675

52

Ataxia UK Notes to the financial statements for the year ending 31 March 2023

1. 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.

2. Principal Accounting Policies

53

Ataxia UK | Annual Report 2022 - 2023

Principal Accounting Policies (continued)

54

Principal Accounting Policies (continued)

55

Ataxia UK | Annual Report 2022 - 2023

ATAXIA UK

NOTES TO THE FINANCIAL STATEMENTS 31 MARCH 2023 CONTINUED

Note 3 Donations and Legacies Income

Note
3Donations and Legacies Income
Donations
Legacies
Note
4Other Trading Activities
Fundraising activities
Note
5Charitable Activities Income
Childlife
Annual conference
Grants receivable
Note
6Investment Income
Interest
Note
7Raising Funds Expenditure
Costs of generating funds
Note
8Charitable Activities Expenditure
Research activities
Care services
Total
Generating funds
Raising awareness
Governance
Total charitable activities		 2023
2022
£
£
743,120
858,024
218,100
258,403
961,220
1,116,427
2023
2022
£
£
242,021
239,962
242,021
239,962
2023
2022
£
£
100,000
80,000
69,391
2,327
76,056
135,790
245,447
218,117
2023
2022
£
£
1,464
1
1,464
1
2023
2022
£
£
203,099
235,028
203,099
235,028
Direct
Grants
Support
2023
2022
Costs
Costs
Total
Total
£
£
£
£
£
210,499
187,749
113,637
511,885
501,062
156,024
2,643
149,173
307,840
330,484
366,523
190,392
262,810
819,725
831,546
-
-
92,602
92,602
104,785
31,930
-
68,088
100,018
105,203
-
-
67,874
67,874
64,125
398,453
190,392
491,374
1,080,219
1,105,659

56

ATAXIA UK

NOTES TO THE FINANCIAL STATEMENTS 31 MARCH 2023 CONTINUED

Total support costs
Staff costs
Office costs
Depreciation		 2023
2022
£
£
339,985
305,096
141,516
158,787
9,873
9,132
491,374
473,015

Note 9 : Research Grants

----- Start of picture text -----
2023 2022
£ £
Research grants made in year comprise
Assessment of ataxia severity under real-life conditions with SARAhome: A multicenter 20,000
study in spinocerebellar ataxia type 3 (Sca3)
43,264
amelioration therapy for Dentatorubro-Pallidoluysian Atrophy
DRPLA Natural History and Biomarkers Study (DRPLA NHBS) 131,449
Motor and cognitive outcomes of non-invasive transcranial alternate current stimulation 5,000
by entrainment of cerebellar oscillations.
Sheffield Ataxia Study Day 700
5,000
----- End of picture text -----

reveal the molecular mechanism of heart failure in patients 4,750
5,000
4,928
2,862
25,800
25,000
30,000
30,901
5,000
433
26,935
38,000
1,500
29,980
Analysis of the mitochondrial dysfunction in FXN deficient neurones to generate a drug
screening test
Brain pathology in an AIFM1 mutation causing Cowchock syndrome

Balance and gait abnormalities in adult patients with mitochondrial disease and
spinocerebellar ataxia type 6
A feasibility study of LSVT Artic to improve speech performance in people with
progressive ataxia

NanoSCA: Development of brain-targeted nanoboides for application in spinocerebellar
ataxia type 3 therapy
Determine mitochondrial metabolism in DRPLA: a possible novel therapeutic approach
Testing the multimodal anti-depressant vortioxetine as a therapeutic strategy to mitigate
SCA3
Evaluation of RNA trans-splicing as a therapeutic strategy for spinocerebellar ataxia
type 1

Personalized gene editing approach for the treatment of Spinocerebellar Ataxia type 1
(SCA1)
$500 Sponsorship of CAG Triplet Repeat Disorders Gordon Research Conf and
Seminar
Validating the therapeutic effect, a CAG repeat-targeting antisense oligonucleotide, on
mitochondrial physiology in cellular models of DRPLA
Improving the diagnosis and management of gluten ataxia

Dr David Pellerin travel grant award of £1500 to attend and present an oral presentation
at the American Academy of Neurology 2023 Annual Meeting.
Looking beyond the central nervous system in SCA3: nerve and muscle ultrasound as
potential imaging markers to quantify and monitor peripheral nervous system
degeneration.
: Staff Costs
Staff costs comprised:
Salaries
Social security contributions
Pensions
Redundancy and termination costs
187,749
248,753
2023
2022
£
£
703,788
664,733
67,548
70,028
35,616
34,104
-
29,125
806,952
797,990

Note 10 : Staff Costs

The average number of employees during the year was 18 (2022: 19) with all employee time involved in providing either support to the governance of the charity or support services to charitable activities.

57

Ataxia UK | Annual Report 2022 - 2023

ATAXIA UK

NOTES TO THE FINANCIAL STATEMENTS 31 MARCH 2023 CONTINUED

The senior management team consist of the Chief Executive and the heads of Finance, Fundraising, Research and Services. The total employee benefits of the senior management team were £339,870 (2022: £335,048).

The following number of staff members received 2023 2022
emoluments in the year:
£80,000 - £89,999 1
£90,000 - £99,999 1
The pension contributions in respect of the above named individual in the
year totalled £4,334 (2022: £4,190).

Ataxia UK operates a defined contribution pension scheme and the amounts above represent the charity's total liability for the year.

Note 11 : Pension Schemes

All permanent members of staff were eligible to receive payment of 5% of their salary paid into a stakeholder personal plan. The pension premiums payable during the year were £35,637 (2022: £34,104). There was no outstanding balance (2022: £0) at the year end.

Note 12 : Trustees

Certain trustees carry out duties that would otherwise be undertaken by paid staff. They receive no remuneration but, along with the other trustees, may claim reimbursement of out of pocket expenses. During the year, all board meetings were held remotely and as a result no trustee expenses were incurred. 0 trustees (2022: 0) claimed expenses totalling £0 (2022: £0 ).

Note 13 : Net (expenditure)/income is stated after charging:

2023 2022
£ £
Auditor's remuneration 6,660 9,980
Depreciation 9,873 9,132
Operating lease costs 1,000 1,000

Note 14 : Tangible Fixed Assets

COST
As at 1st April 2022
Additions
Disposals
As at 31 March 2023
DEPRECIATION
As at 1st April 2022
Charge for year
Disposals
As at 31 March 2023
NET BOOK VALUE
As at 31 March 2023
As at 1st April 2022		 Building
Works
Other
Assets
Total
£
£
£
5,333
40,250
45,583
-
5,098
5,098
-
(1,064)
(1,064)
5,333
44,284
49,617
4,225
19,734
23,959
723
9,150
9,873
-
(577)
(577)
4,948
28,307
33,255
385
15,977
16,362
1,108
20,516
21,624

Included within the net book value of the 'Other Assets' is an amount of £2,000 (£3,000 in 2022) relating to items acquired on Finance Lease/Hire purchase.

58

rAXIA ATAXIA UK NOTES TO THE FINANCIAL STATEMENTS 31 MARCH 2023 CONTINUED Notg 15 .' Debtors Under 1 Ygar 2023 2022 Income lax recoverable OtIEr debtors Prepayments 127,305 209,858 27,878 365,041 108,860 131,482 32,435 272.777 Note 16 .' Cash at bank and in hand The Trustees maintain a policy that all cash balances are held with reputable financial institutions. Interest receThlab￿ is disclosed in note 6. Noto 17 .' Cr8ditors: amounts falling dua within one year 2023 2022 Othèr creditors PAYEINI Deferred income Accruals Research grants 8,939 25,764 19.639 13,086 31,157 746.849 836.495 28,732 25,188 903.709 966,568 59

Ataxia UK | Annual Report 2022 - 2023

ATAXIA UK

NOTES TO THE FINANCIAL STATEMENTS 31 MARCH 2023 CONTINUED

Note 18 : Creditors: Amounts falling due after one year

Research grants
Misc creditors
Note
19: Analysis of net assets between funds
Fixed assets
Debtors
Cash at bank and in hand
Creditors
Note
20: Unrestricted Funds
Balance as at 1 April 2022
Net increase/(decrease) in funds during the year
Transfers
Balance as at 31 March 2023
Note
21: Designated Funds
Funds held in branches
Coeliac Research Project
In Control Project
Premises Fund
Parental
Restructuring
Service development
Conference subsidy
Staff training
ICA conferences 2023-24
Research Conference Fund		 2023
2022
£
£
963,756
1,346,104
1,000
-
964,756
1,346,104
Total
Total
2023
2022
£
£
£
£
£
2,222
-
14,140
16,362
21,624
-
-
365,041
365,041
272,777
1,178,356
342,689
68,187
1,589,232
1,760,675
(1,867,464)
-
(63,860)
(1,931,324)
(2,182,599)
Restricted Funds
Designated
Funds
General
Funds
(686,886)
342,689
383,508
39,311
(127,523)
General Funds
Designated
Funds
Total
569,800
154,113
723,913
(297,292)
299,576
2,284
111,000
(111,000)
-
383,508
342,689
726,197
Opening Balance
Net
Movement
Transfers
Closing Balance
8,113
(424)
-
7,689
30,000
-
(30,000)
-
71,000
-
(71,000)
-
35,000
15,000
-
50,000
-
50,000
-
50,000
-
30,000
-
30,000
-
150,000
-
150,000
-
5,000
-
5,000
-
20,000
-
20,000
-
30,000
-
30,000
10,000
-
(10,000)
-
154,113
299,576
(111,000)
342,689

a) Funds held in branches: Funds held by the branches and not available for normal activities of central office.

b) Coeliac Research Project: Funds designated to fund a gluten ataxia research project in partnership with Coeliac UK which was funded during the year ending 31 March 2023.

c) In Control Project: Funds designated to cover the In Control project were used during the year ending 31 March 2023.

e) Research Conference Fund: Funds being held to cover costs of ICAR 2022 conference which were released to unrestricted funds as they were not required.

60

rAXIA ATAXLA UK NOTES TO THE FINANCIAL STATEMENTS 31 MARCH 2023 CONTINUED Note 22 .. Restricted Fund5 Income Expenditure Transfer8 At 31 March 2023 2022 Gereral Research Friedreich's ataxia research Cerebellar ata￿a research Your¥J Person'8 projects Jerry F8rr travel furd Welfare Welfare- The Gift of Speech Nicotin0tn￿e Goods ar￿ servI￿s Rel￿1Ved Helpline Misc Grants chi￿1rfe Exeter AwaierE55 Kell￿dY Award Research Stem Cell FA Mark Dower Trust sp1w￿rebel1ar Ataxia Research Project DRPLA Research In Control Project At8￿a Cenlres DRPLA Department Scotland NXK6-2 AOA2 Piospax Project Research Ser%ryr* Contracts Research SCA6 Research SCA3 Research ICAR 2024 Conferen Misc AAA++ 95,941 13,158 2,189 7,959 671 634 21,624 179,361 11,415 11,862 136,083 34,090 23,472 139.219 23.457 32,973 9,421 7,959 671 1,069 18,372 24 525 3,779 527 30 6,342 93,887 6,342 31,026 62,862 450 450 100,000 57,606 142,3941 582 4,171 12,198 78 1,768 1,661 11,047,450) 9,470 51,039 15,774 800 146,7821 2,629 582 4,171 9,198 78 1,723 4.912 11,047,450) 3,000 2,073 4,064 51,935 47,861 2,118 813 51,935 85,870 28,539 51,039 12,128 800 138.7461 3,811 14401 142,631 146,277 8,036 1,478 4,611 12,902 625 1,187 49,220 9,372 740.379 296 5,051 12,902 125 1,187 500 49,220 7.505 686.886 1,867 604.368 851,436 28.539 61

Ataxia UK | Annual Report 2022 - 2023

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: 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.

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) Research Stem Cell FA: Spinocerebellar Ataxia Research Project: Funds for spinocerebellar ataxia research q) 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.

r) Spinocerebellar Ataxia Research Project: Funds for spinocerebellar ataxia research project

s) DRPLA Research: Funds provided by donors specifically for research on Dentatorubral-pallidoluysian atrophy . See note 1 below.

t) In Control Project: Funds provided by the Lottery to promote volunteers and provide support to the ataxian

u) Ataxia Centres: Funds to assist with the set-up of additional ataxia centres/virtual centre.

v) DRPLA Department: Funds provided by donors specifically for staff to support DRPLA research.

w) Scotland: Funds to be expended in Scotland.

x) NKX6-2: Funds provided by donors specifically for research into NKX6-2 . See note 2 below.

y) AOA2: Funds provided by donors specifically for research into ataxia with oculomotor apraxia type 2.

z) Prospax Project: Funds provided by donors specifically for research into spastic ataxias.

aa) Research Service Contracts: Funds provided for projects undertaken by the research department. ab) SCA6: Funds provided by donors specifically for research into Spinocerebellar ataxia type 6 .

ac) SCA3: Funds provided by donors specifically for research into Spinocerebellar ataxia type 3. ad) ICAR 2024 Conference: Funds provided towards costs of International Congress for Ataxia Research 2024 being held in London, UK.

ae) Misc AAA++: Funds provided by donors specifically for expansion of the All About Ataxia offerings.

Note i: DRPLA research grants of £1.8m were issued 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 it t ill b t Note ii: Two NKX6-2 research grants of £105k were issued 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 a signed agreement in place outlining the payment structure ensuring these future commitments will be met.

62

rAXIA ATAXiA UK NOTES TO THE FINANGIAL STATEMENTS 31 MARGH 2023 GONTINUED Note 23 . Capital Conwnitmerrts T￿re are ￿ capital commilrnenls at 31 March 202312022". Nil) Note 24 . Lèase Commltments At 31 March 2023 the charty had future mininwm lea8e payments under non-cancellable operating leases as follow8.' 2023 2022 Land & buildings Land & buildings Other Other Paym&nls due.. Within one year Within two to five years 37,168 47,501 84,869 1,608 1,608 3,216 50.604 61,802 112,406 1,608 3,217 4,825 Nots 25 - Nssociatsd Organisations charity is a member of a Consortium, with three other charities. called chi￿lIfe. through which IkE member ¢haritES are able to collectwely raise furKls for their reSPeCtr￿ causes throwh ttrE operation of cotnbirEd payroll deduction 5ctrEme arKI donor developrnetrt. Chi￿lIfe is a company limited by guarantee and registered in England Wales- number 3696656- and a registered charity- number 1080536. Each of tr* members of Chi￿lIfe prO￿e a guarantee limited to £1. 63