REGISTERED COMPANY NUMBER: 02613993 (England and Wales)

REGISTERED CHARITY NUMBER: 1003317

TOURETTE SYNDROME (UK) ASSOCIATION

TRADING AS TOURETTES ACTION

UNAUDITED FINANCIAL STATEMENTS

FOR THE YEAR ENDED 31 MARCH 2025

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Report of the Trustees

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Independent Examiner's Report

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Statement of Financial Activities

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Balance Sheet

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Cash Flow Statement

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Notes to the Cash Flow Statement

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Notes to the Financial Statements

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The trustees who are also directors of the charity for the purposes of the Companies Act 2006, present their report with the financial statements of the charity for the year ended 31 March 2025. The trustees have adopted the provisions of Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019).

Tourette Syndrome (UK) Association trading as Tourettes Action is a charity formed in 1981 to provide support to people living with the neurological disorder known as Gilles de la Tourette Syndrome and their families and operates as Tourettes Action.

The Charity was incorporated in 1991. The head office of the charity is in Farnborough, with staff located throughout the UK, providing support to people throughout England, Wales and Northern Ireland. Tourettes Action (TA) also has links with other Tourette Syndrome Societies throughout the UK, Europe, the United States and Canada.

OBJECTIVES AND ACTIVITIES

Our Vision

We envision a world where people with Gilles de la Tourette syndrome are accepted, supported, and embraced and a world that removes barriers and empowers individuals with the condition to reach their full potential.

Understanding Gilles de la Tourette syndrome

Gilles de la Tourette syndrome, known more commonly as Tourette syndrome (TS or Tourette's) is a complex, lifelong neurological condition that typically begins between the ages of 4 and 7, often peaking in early adolescence. It is genetically determined and characterised primarily by tics, which are involuntary movements or sounds.

Many individuals with TS also experience co-occurring conditions such as ADHD, OCD, autism spectrum disorder, anxiety, depression, sensory processing differences, and challenges with executive functioning (e.g., planning, organisation, decision-making).

While symptoms may lessen for around half of adults after adolescence, Tourette syndrome is a life-long condition and tics will wax and wane (come and go) throughout their lifetime.

Despite affecting approximately 1% of school-aged children, with over 300,000 children and adults in the UK needing support for the condition, Tourette syndrome still remains widely misunderstood. Misconceptions, especially around involuntary swearing (coprolalia), contribute to stigma, trivialisation and unwanted humour. These symptoms affect only 10-30% of people with TS and are not part of the diagnostic criteria. It is important to recognise that those who experience these symptoms, often find them deeply distressing and difficult to manage.

Individuals with Tourette syndrome can also experience tics that present challenges, including embarrassment, pain, injury and physical limitations, depending on their severity. This is compounded by limited public understanding and inadequate NHS support services, often leading to barriers in education, employment, and social exclusion. Some individuals also face bullying, isolation and mental health challenges because of their tics. Sadly, research indicates that individuals with TS are four times more likely to die by suicide in adulthood compared to the general population.

There is no cure for TS. Treatments range from psychological therapies to medication and Botox and, in rare cases, neurosurgery in the form of Deep Brain Stimulation. Comprehensive Behavioural Intervention for Tics (CBiT) is a promising psychological treatment, but, sadly, it is not widely available across the UK. Many individuals have no access to local treatment options, something the charity is actively campaigning to change. NICE recently completed an early value assessment looking at digital therapy for chronic tic disorders and Tourette syndrome that looked into recommending two digital therapies: ORBIT and Neupulse. This work may potentially improve access to services.

Despite our efforts to raise awareness, Tourette syndrome is still frequently perceived as humorous or insignificant. In reality, it can have a profound impact on the quality of life of the person living with Tourette syndrome and their family. The combination of neurological complexity, stigma, and lack of services highlights the urgent need for greater understanding, compassion, and support.

About Tourettes Action

Tourettes Action is the UK's only national charity dedicated to supporting individuals with Tourette syndrome and their families. All our staff, volunteers and supporters are engaged and energised in driving forward our mission. Everything we do is grounded in our community's needs and informed by both the voices of our community and scientific and research-based evidence.

Our Mission

• We will support and empower people living with Tourette syndrome, and their loved ones, through comprehensive advice and support.

• We will campaign to improve services, raise awareness and understanding of Tourette syndrome, whilst stamping out the stigma associated with it.

• We will assist and promote essential research into Tourette syndrome.

Strategic Goals

Our five strategic goals were shaped by surveys within the Tourette's community, which identified a lack of awareness across all parts of society as the most significant barrier to progress.

1. To raise awareness of Tourette syndrome and reduce the stigma associated with it:

Objective: Increase public awareness and understanding about the reality of Tourette's, and what it means to live with it.

Activities:

• Delivering nationwide awareness campaigns reflecting our community voice.

• Sharing accurate information that is not only based on lived experience but also on recent scientific and research-based evidence about Tourette syndrome, through various media.

• Conducting educational training and workshops for parents, schools, workplaces, and healthcare professionals.

2. To reduce health inequalities for people living with Tourette syndrome:

Objective: Campaign so that everyone with Tourette syndrome can have access to an appropriate NHS healthcare provision, regardless of their location, ethical or cultural background or social status.

Activities:

• Supporting community-led lobbying and parliamentary engagement.

• Participating in coalitions and steering groups to advocate for improved services.

• Ensuring representation of community voices in health policy discussions.

3. To ensure that no-one with Tourette syndrome feels alone:

Objective: Build a network of support for people with Tourette syndrome and their families, ensuring that no one living with, or affected by the condition, feels alone.

Activities

• Facilitating online and in-person support groups.

• Organising residential events for families, teenagers, and adults with TS.

• Providing personalised assistance through our helpdesk.

4. To enable people with Tourette syndrome to thrive:

Objective: Provide accessible support, advice and training, to individuals and their families, and professionals, helping people living with the condition to flourish at home, in education and in employment

Activities:

• Developing and distributing resource guides and factsheets online.

• Advocating for those with Tourette syndrome in educational and workplace settings.

• Hosting online and in-person seminars featuring expert advice.

5. To support research into Tourette syndrome:

Objective: Promote and assist research into the causes, treatments, and impact of Tourette syndrome, with a view to improving the lives of people with the condition.

Activities:

• Collaborating with researchers and shared community insights.

• Developing community-defined research priorities.

• Disseminating research findings in accessible formats

ACHIEVEMENT AND PERFORMANCE

Charitable activities

Since 1981 Tourettes Action's main aim has been to support people living with or waiting for a diagnosis for Tourette syndrome. Despite working to reduce the stigma surrounding TS, those living with the condition are aware that it is still one of the most stigmatised and misunderstood of all the neurological conditions, bringing distress to those with the condition as well as their family and friends. In all that we do, we aim to increase awareness and bring about acceptance for those living with TS, hoping to one day eradicate this stigma and bring true acceptance to those living with it.

Over the past 12 months, we have seen continued growth in engagement and visibility. We are proud of our achievements, which range from providing direct support to individuals and families, to campaigning for improved services and greater public awareness of TS.

Our reach has expanded significantly, with our message resonating across a broader audience, including educators, healthcare professionals, employers, public services, and customer-facing industries. This increased visibility ensures that the voices of those with TS are being heard and their needs better understood.

All of our activities are carried out in accordance with the Charity Commission's guidance on public benefit, and are designed to ensure that we continue to operate for the benefit of the public.

Goal 1: To raise awareness of Tourette syndrome and reduce the stigma associated with it:

Nationwide Awareness Campaign

For the third year running, we embarked on a major campaign during Tourette's Awareness Month, which ran from 15th May to 15th June. We used an external agency to manage the campaign creation, marketing and advertising. The campaign was called #TourettesHurts and its aim was to highlight the impact Tourette's can have on those with the condition and those around them. The campaign wasn't just about raising awareness of Tourette's it was about challenging misconceptions.

The campaign was informed by the views of members of the community who wanted a campaign which would help people understand the truth of the condition - and just how painful it can be both from a physical and emotional aspect. They wanted to showcase the realities of the condition but to also show that with the right support, and the understanding of the general public, the condition would be that little bit easier to live with.

This project involved designing 5 poster themes and recruiting 5 members of the TS community to appear in the posters. Each of the posters shared a different message about why #TourettesHurts: Exhaustion, Physical Pain, Lack of Medical Provision, Suppression, Social Exclusion.

The powerful poster campaign captured the imagination of the UK public. It was built from compelling headlines and visuals, whilst shining a light on real members of the Tourette's community.

The idea was to dramatize the pain of daily tics by quantifying it with bold language that everyone could understand.

We landed on headlines such as:

• "My skin catches fire every day"

• "I'm in a car crash every day"

• "I get beaten to a pulp every day"

We photographed the members and put the headlines at an angle, as if colliding with the person, amplifying the sense of discomfort.

The campaign content could not be ignored. The dark backgrounds and angled lighting added drama that threw the real expressions of pain very much into the spotlight. It challenged misconceptions and led to greater understanding of the condition that is, sadly, very much mocked and misunderstood. It gave a voice to people for whom medical provisions and research is lacking, who are ignored, mocked and often isolated. It's changed preconceptions, and in doing so, it brought about empathy and understanding to those with the condition.

The campaign reached over 2 million views through paid ads in 82 London train stations during Tourette's Awareness Month. During this time, we also successfully secured significant free advertising space across 89 high-traffic locations, including: Piccadilly Circus, Westfield London, Nelson Street Glasgow, Bond Street Leeds, Snowhill Birmingham, Westminster Towers, Chiswick Towers, Liverpool Towers, Manchester Trinity Way and 76 cinemas throughout the UK.

We further amplified our message with a video featuring community members and 8 celebrities (Eddie Marsan, Aidy Smith, Daniel Mays, Omid Djalili, Matt Lucas, Sally Hawkins, David Morrissey, Izzy Judd) who each read lines from the poster messaging. The video was viewed over 221,000 times during the campaign.

The campaign was picked up by 12 media outlets, including BBC National News and BBC Breakfast.

During the awareness month we saw a huge amount of engagement from the community, with lots of people supporting us in getting the message out there:

During awareness month our website saw nearly 13,000 visitors, and social engagement peaked at 1.1 million - far surpassing typical months.

Media

As the voice of the charity has got louder over the years, we have found that we have been able to reach new people and also gain the interest of celebrities. This year saw us recruit our first celebrity patron to the charity, Eddie Marsan. Eddie has a son with Tourette syndrome, which made his connection even more fitting.

Eddie's recruitment as a patron coincided with this year's awareness campaign, which then led to multiple TV broadcasts, further enhancing our message.

Website

Our website continues to be a major source of information for people and we continue to update the site and improve the content on a regular basis. Almost 64,000 people visited our website during this period. It is continually cited as the main source of reliable information about TS and its associated conditions. We strive constantly to ensure that information is up to date and, although we don't give medical advice, we ensure that the options which might be offered at a clinic visit are fully explained. All of the information is freely downloadable and we continue to believe that this access to information is vital. The website also provides an important platform for the TS community by way of a Blog page, where people can share their personal stories, giving inspiration to those on a similar journey. We regularly receive feedback that our website has been "a one stop shop" and has provided individuals with valuable information about the condition and has very often been the only form of information they have received. Our factsheets provide research-based facts on all areas of the condition, very often giving the community the answers they need.

eLearning

Our free CPD eLearning module, called Understanding Tourette syndrome, continues to be widely used and this financial year it was completed by over 2,000 individuals, many of those being in the education and health sectors. Our eLearning module is also the only Tourette syndrome module on the NHS Learning Hub and we are pleased to be featured on many Local Authority learning management systems in both English and Welsh, enabling us to further spread the message.

Socials

We continue to promote our website content, along with research news, fundraising campaigns, events, webinars and training through our social media platforms and our monthly newsletter. As of March 2025, we had almost 11,000 newsletter subscribers, a 20% increase over the prior year. During this period, we maintained our focus on our social media channels, which led to an increase in followers and engagement across all platforms. We saw an increase of just over 2,500 followers across our social platforms, with the biggest increase on Instagram and LinkedIn.

Training

This financial year, we hosted 2 workshop events: a day-long workshop in Haywards Heath for parents and carers of children with TS and a multi-day workshop in Birmingham for both health, social care and education staff, as well as parents and carers. The workshops aimed to equip the attendees with the knowledge to better support those with TS at home and in the educational and healthcare settings, giving them a thorough understanding on how TS affects those with the condition and the hidden barriers they face daily. In total, 65 individuals attended the events with 100% of attendees saying they would implement new strategies learnt from the workshop.

We have continued to provide individualised training sessions via Zoom during this financial year as the need for this has remained high. This year we delivered 97 sessions with over 7,500 attendees being present over the sessions. Training sessions were delivered to 9 community groups, 15 corporate organisations, 13 Health and Social Care teams and 60 educational establishments.

Goal 2: To reduce health inequalities for people living with Tourette syndrome

The challenges in accessing a timely diagnosis and subsequent care and treatment continue to persist. As a result, advocating for improvements in healthcare has been one of the charity's primary focuses this financial year.

NICE

We've made significant strides in our campaign for health service improvements, with one of the most notable advancements being our involvement with the NICE Committee, which began in 2023.

Our work with the NICE committee continued this year as we worked with them on the NICE Early Value Assessment: Digital therapy for chronic tic disorders and Tourette syndrome. Our CEO, along with two Tourettes Action board members, served on the specialist committee, ensuring that the lived experiences and voices of the TS community were central to the process.

As part of this work, our CEO worked with NICE to design and distribute a community-wide survey to better understand the challenges faced in accessing healthcare. The results were both revealing and concerning:

- 1508 people completed the survey

- 63% waited over 1 year for a diagnostic assessment

- 23% waited more than 3 years

- A staggering 13% waited over 5 years

- Over 60% had never been offered any treatment

- Only 17% were offered face-to-face behavioural therapy, despite it being the recommended first-line intervention

- 77% reported pain as a major issue, yet only 3% were offered pain management

- Of those offered CBiT, 31% are still waiting over 1 year for their initial appointment

- Nearly 32% were never assessed for co-occurring conditions, despite research showing these are common in TS

These findings underscore the urgent need for systemic change. Many respondents reported stark regional disparities in access to medical support, highlighting inconsistencies across the country.

To further amplify these concerns, we submitted a comprehensive response to the NHS 10-Year Change Plan and formally proposed a new topic to NICE: the development of clinical guidelines for the diagnosis and management of Tourette syndrome.

Clinical Understanding and Interest

We frequently hear from our service users that medical professionals often lack understanding, with outdated views, like the belief that "You can't have Tourette's if you don't swear," still being common. We're committed to challenging these misconceptions and, in doing so, hopefully sparking greater awareness and interest in the condition.

This year we expanded our eLearning offering, creating a new module specifically for GPs. It was created in the hope that we could educate GPs on the condition, removing many of the outdated views, which can often hinder referral and diagnosis, causing delays for many years. We are grateful to Dr Kate Szymankiewicz for giving her time to help create this.

In November, our CEO was invited to present at the National Psychiatry and Intellectual Disability Conference, where she discussed the lack of nationwide provisions for individuals with Tourette syndrome. Clinicians in attendance were keen to learn more about the condition and explore ways to improve access to support across the UK.

Advocacy

This year, we have continued to support the community in advocating for change by encouraging them to reach out to their Members of Parliament. As a result, 95 individuals used our templates to contact their MPs, leading to the submission of 7 questions in Parliament aimed at addressing these issues.

As the voice of the community grows stronger and more MPs become involved, commissioners are increasingly compelled to take action, leading many to consider implementing Tourette's services and pathways at the local level. We have collaborated with several Integrated Care Boards (ICBs) as they explore the establishment of pathways, advising on current best practice.

This year we have continued to be an active participant in a number of pressure and advocacy groups to broaden our impact and influence including the Nottingham Tourette's Steering Group, Neurodevelopmental Conditions Ministerial Advisory Group in Wales and the Neurological Alliance.

The Nottingham Tourette's steering group is a group of academics, healthcare and educational professionals, charity representatives, and lived experience advocates, who are committed to improving access to services and support for children, young people and adults with Tourette syndrome.

The NDMAG (Neurodevelopmental Conditions Ministerial Advisory Group) is a group in Wales whose aim is to assist Welsh Ministers with the direction, implementation and future evaluation of their neurodevelopmental service improvement programme. The group will assess emerging policies, strategies and legislation for their impact on neurodivergent people, their families and carers.

Being an active member of these groups ensures that the voices of the TS community are counted and recognised.

The Nottingham Steering Group started their NIHR (National Institute for Health and Care Research) funded project, in November 2023, and this project continued throughout this financial year. The aim of the project is to develop a recommended service model for children and young people with tics. Oue CEO managed the Patient and Public Involvement arm of this research project, ensuring that the patient voice is front and foremost and instrumental in the final model.

In April 2024 our CEO was invited to parliament, along with other charity representatives and advocates to hear the reading of Matt Hancock's "Neurodivergent Conditions Screening Bill". She highlighted that early diagnosis is good, but it is imperative that treatment pathways are in place to support these children once a diagnosis is made.

In previous years, Tourette syndrome was very much the 'forgotten' neuro condition but we are increasingly being offered a seat at the table, which we believe is due to campaigning from both the charity and our service users.

Goal 3: To ensure that no-one with Tourette syndrome feels alone:

Helpdesk

Our helpdesk remains our main method of personal one to one support, offering guidance and signposting to people with TS and those supporting them. This financial year we saw a notable increase in the complexity of queries received. Many people told us they felt we were their only source of hope - having spent years seeking a diagnosis or having been discharged from medical services without ongoing support.

Demand for our Helpdesk services continues to grow year on year. During this financial period, we responded to over 4,600 individual queries via email, social media platforms, phone, and LiveChat.

The Helpdesk is run by 2 members of Tourettes Action staff and supported by a dedicated group of volunteers. We are deeply grateful to our volunteers for their time, compassion, and invaluable contributions.

Residential Events

In 2024 we delivered 8 'Fest' events, to support people with TS and their families.

Of all the events we run, these provide the greatest positive impact on participant's lives. They create an environment where participants feel safe, accepted, and empowered to have fun, form meaningful friendships, and take on exciting physical challenges alongside more tranquil activities and impactful psychosocial education. While the concept is simple, the impact is profound. For many, it's one of the rare opportunities to truly belong, to feel like part of the group, not an outsider. Participants are encouraged to be themselves, connect with others in similar situations, and experience a sense of freedom and belonging.

We delivered our usual TICfest, TEENfest and AdultFest weekends and for the second year running we delivered a 1-day TicFete event to allow families who hadn't been able to access a weekend fest event the chance to meet up. The following events ran last year:

- 5 TICfests

o Residential weekends for children with Tourette syndrome and family members. These were held in Somerset, Derbyshire, Newcastle, South Wales and Norfolk and were attended by 421 people.

- 1 TEENfest

o Residential weekend for teens with Tourette syndrome. This was held in Dorset and we accommodated 20 teens.

- 1 Adult Weekend

o Hosted in the Midlands, which was attended by 69 adults with Tourette syndrome.

- 1 One-day TIC-fete

o Delivered in November in Watford, enabling anyone from the Tourette's community to come together for a day to learn and share, feel accepted and part of a wider community. This proved very popular with over 200 attendees.

The feedback we receive shows how essential these events are for our community.

"I was blown away with what an experience TICfest was for our whole family. We came with my daughter and her 2 younger brothers and even for them it was a fantastic weekend. My daughter has never had an opportunity before this event to meet other children with Tourette's and similar struggles to her. This weekend made us feel like we had our daughter back, we haven't seen or heard her laugh and smile like she did at this weekend for a long time. The staff are all amazing and we were made to feel welcome from the moment we arrived. Her confidence was sky high after the event, she made new friends who she has kept in contact with. From this event we will have lifelong memories of us being able to enjoy family time and having fun without any worries. This is not something we regularly get to do now." TICfest parent.

87% of children attending the TICfest events state they felt happier and less anxious as they experienced what it is like to be accepted and that they are not the only ones to have Tourette's. 84% stated that their confidence has increased since attending and they now felt more able to talk and explain to people about their condition and will have a better understanding of it themselves. 89% said they were able to make friends with people who understand them, helping them to feel less isolated and alone.

Support Groups

The need for our online groups has remained high this financial year and as such we continued to support our service users providing a regular online support offering.

A wide range of online groups were held during this period. We had groups for teens with TS, adults with TS, parents of children with TS, and groups specifically for dads and male role models of those with TS, along with family groups. We facilitated 147 online groups with 671 attendees during this period, with many people reattending weekly for support and fellowship.

91% of people who attended the online groups said that since attending the group they felt more supported and less on their own, 88% said they felt part of a community and 84.5% said the group had given them and their family a network of support that they can now call on for support to help them cope in challenging times.

This year we have put substantial effort into growing our national network of face-to-face support groups that are facilitated by a wonderful group of dedicated volunteers. These groups make a significant positive impact on the Tourette syndrome community. Having these support groups creates a platform for individuals with TS, their families, and caregivers to connect, share experiences, offer mutual support, and foster a sense of belonging and understanding. There are 8 established face-to-face support groups around the country, each meeting on a monthly basis to support the TS community.

89% of people attending the face-to-face groups said that since attending the group they felt more supported and less alone, 78% said they felt more confident about their future than before they joined the group and 89% said they felt the group had given them and their family a network of support that they can now call on for support to help them cope in challenging times.

During this period, we facilitated seven music workshops at our face-to-face support groups, funded 5 Christmas parties and 4 activity sessions in the Spring. These sessions ranged from beatboxing, animal therapy, laser tag and wild science. Feedback from the group members was positive feeling these activities give them the chance to bond as a team.

Goal 4: To enable people with Tourette syndrome to thrive:

Educational and Workplace Support and Advocacy

The need for information and support for students in school is as high as ever. Our Education Manager has spent many hours helping teachers and parents to support children struggling within education. During this period, we responded to over 900 enquiries from schools and 829 parents' enquiries regarding support around education and how best to support those with TS in the education environment.

This period we continued to receive requests for support around TS and reasonable adjustments from children's homes, community centres, wellbeing centres, social services, sports clubs and behaviour support units.

We have had more requests this year to support our Adults with TS in the workplace. During this period, we had 119 enquiries from employers wanting to understand how they can better support their workforce. We also held 50 advocacy sessions with adults with TS discussing access to work, support in the workplace, and disability and access rights, ultimately providing them with the tools to advocate for themselves in the working world. This was a 66% increase from the previous financial year

Supporting Documents

Our Tourette's ID cards are still very popular; we issued 94 this financial year. Users often tell us that the cards give them confidence to go out and travel alone - the card can explain their condition, when they are not able to.

We have had our TS passports for a number of years now, enabling people with TS to list their support needs. They are a great asset for those in education and the workplace. These were really popular this year with just over 1300 passports issued or downloaded.

Educational Seminars

We held 14 informative and educational webinars during this financial year, covering topics such as: Managing transition and change, The Neupulse Device, Autism in Girls, Educational Support, Employment and TS, Sleep, Managing Anxiety, Evidence Based Treatments, TS and FND, Anxiety and TS. These webinars were very popular and were attended by 413 people. 73% of people said they would implement new strategies learned from the webinar and 78% said they felt more informed about TS, its impact and tic management following the webinar. 71% felt more empowered and confident to seek support or make choices about their health or their family member's health following the webinar.

Factsheets

This period we also began work on expanding and updating our factsheet resources that are freely available on our website.

Small Support Grants

Due to the ongoing support of a very generous benefactor, we continue to be able to offer small grants for items, which help people to manage their TS. During this period we issued 6 grants for things such as a supporting bed and mattress, Rubik's Cubes, a tablet, a sofa bed, a shower rail and shower equipment, and a Polyphonic Analogue Synthesizer, all of which helped the individuals manage their symptoms of TS.

Goal 5: Supporting research into Tourette syndrome:

Our funded research support programme remains suspended for new applications due to lack of funding, but we continue to support and monitor progress on research projects previously committed. We do however support researchers with their studies, helping to promote and disseminate findings.

This financial year we noted a large increase of researchers studying Tourette syndrome and we supported 20 researchers in their studies, promoting their studies on our website and social media to engage participants, helping to provide insights into the lived experience of Tourette's. The promoted studies included:

- From Trauma to Tics: A Qualitative Exploration of Later-Onset Tourette's Syndrome in Adults

- Investigating the Experiences of Phonic Tics and Involuntary Vocalisation Behaviour in Adults with Tic Disorders

- How do animals benefit individuals with Tourette Syndrome?

- Developmental characterization of explosive outbursts in youths with Tourette syndrome

- Are there benefits to using physiotherapeutic methods to decrease tic severity and pain levels for individuals with Tourette syndrome?

- The relationship between parental stress, stigma, resilience, and social support

- Optimising Therapy for Neurodivergent Adults: Reasonable Adjustments and Special interests and their interplay in therapy and quality of life

- Coping Strategies, Stress, and Sleep: Evaluating Their Relationships and Influence on Tic Severity in Children with Tourette Syndrome (TS)

- Exploring the EXPeriences of Accessing services and understanding Neurodevelopmental Disorders for ethnic minorities in England (EXPAND)

- Research for the Development of a Script dealing with Tourette Syndrome

- Functional Tic-Like Behaviours: Towards an Understanding of Young People's Experiences

- Self-stigma in Parents of Young People with Functional Neurological Disorders or Asthma.

- Professional's experiences of working with functional tic disorder

- Help improve access to healthcare for young people with neurodevelopmental disorders

- Designing an online intervention to improve GPs knowledge of tic disorders

- Lived Experience of TS - Exploring the success of pharmacological vs art-based intervention

- Sleep Traits in Tourette Syndrome

- Exploring the urge to tic in TS

There are several long-term projects we've supported that are now delivering exciting results:

- The wrist-worn device developed under the leadership of Professor Stephen Jackson, which provides an electrical stimulation that can have the effect of significantly reducing tics in the wearer, is now progressing toward market launch.

- ORBIT (Online Remote Behavioural Treatment for Tics), led by Professor Chris Hollis, is being developed into a scalable, patient-ready digital tool for delivery across the NHS.

Fundraising

This year, we were delighted to welcome two new charity partners, LSP and GS1UK. Their support has significantly strengthened our efforts to raise awareness of both the condition and the charity's mission.

Our incredible fundraisers once again showed unwavering commitment and energy. Highlights from this year's fundraising activities included participation in the London, Manchester, and Hamburg Marathons, the Bristol Half Marathon, Tough Mudder, the London Landmarks Half Marathon (LLHM), Move for Tourettes, Facebook birthday fundraisers, and our Tea for Tourette's events.

Despite a 10% drop in donations, amounting to nearly £20,000, likely due to the ongoing cost of living crisis, our fundraising efforts rose to the challenge. We saw an increase of £24,460 compared to previous years, helping to offset the shortfall. We believe this uplift in fundraising engagement is a direct result of our expanded awareness initiatives and the growing recognition of our cause.

During the year, we received grants and donations for just over £182,000 from a variety of trusts and funders including BBC Children in Need, The National Lottery Community Fund - RC England Wide, The National Lottery Community Fund - Awards for All England, the Angus Lawson Memorial Trust, D'Oyly Carte Charitable Trust, Marsh Charitable Trust, Forvis Mazars Foundation UK, De Brye Charitable Trust, Hospital Saturday Fund, RSA Match funding, Miller Homes, Florence Turner Trust and CHK Foundation.

This year for the first year we took part in The BIG Give Christmas Challenge, which enabled us to double our donations during 1 week in December. We raised just over £30,000 during this campaign, with funds raised going to the running of our Helpdesk.

Looking Back

As we reflect the last 12 months, we know we have achieved a great deal from just "being there" to campaigning for improved services for people with Tourette syndrome and better understanding of the condition. We can see that we are making progress at reaching a wider audience, such as teachers, health professionals, employers, public services and customer-facing industries, and getting our voice heard.

We are very grateful to all of our regular donors and fundraisers who continue to support us with financial contributions, even during these times of economic pressures.

There is however still so much to do to achieve transformative clinical support providing help when needed, and without social stigma so that our community are truly able to live their lives to the full.

Looking Forward

Our 5 strategic goals - to enable people with Tourette syndrome to thrive, to raise awareness of Tourette syndrome and reduce the stigma associated with it, to reduce health inequalities for those living with Tourette syndrome, to ensure that no one with Tourette syndrome feels alone, to support research into Tourette syndrome - remain and will remain at the forefront of all that we do this coming financial year.

Awareness will be key, as will pushing for health service improvements.

We are hoping it will be a big year for the Tourette's community as it will see:

- The release of the I Swear film, which is based on the true life story of campaigner John Davidson MBE.

- Digital therapies such as ORBIT and the wearable device from Neupulse getting closer to delivery and release

FINANCIAL REVIEW

Reserves policy

During the year Unrestricted funds increased by £7,363 to £502,415. There was a decrease of £109,075 to £107,474 in Restricted funds.

We still continue to hold a minimum of at least six months expenditure in reserves as we continue to have a high reliance on the generous support of a small number of donors.

To ensure that we can provide continuity in meeting our strategic priorities, for at least the next 12 months, the Trustees have designated specific funding totally £160,000 to cover the following areas of expenditure in the short to medium term:

• Provision of helpdesk and support services for a 12-month period

• Support in education for children and young people with TS in schools, and supporting adults with TS in the workplace for a 12-month period

• Improvement to the website to facilitate better access to resources and information by service users, including a website upgrade, with associated IT infrastructure updates and improvements, which has been deferred from the 2023/24 financial year for operational reasons.

• A provision for follow on expenditure on any research projects already supported and funded by the charity.

Preparation of the accounts on a Going concern basis

The Trustees are confident that Tourettes Action has sufficient funding to enable it to undertake all of its activities over the next year and on that basis the charity is a going concern.

Preparation of the accounts on a Going concern basis

The Trustees are confident that Tourettes Action has sufficient funding to enable it to undertake all of its activities over the next year and on that basis the charity is a going concern.

STRUCTURE, GOVERNANCE AND MANAGEMENT

Governing document

Tourettes Syndrome (UK) Association trading as Tourettes Action, ('the charity' or 'TA'), is a company limited by guarantee and as such is governed by its Memorandum and Articles. It was incorporated on 23 May 1991.

Trustee Board

The charity is governed by the Trustee Board, which sets the strategy of the charity, ensures compliance with its charitable objectives, approves the business plan and budget annually and monitors the ongoing operational and financial performance of the charity.

Trustees are appointed after a formal recruitment process, as vacancies arise, by vote of the full Trustee Board at the AGM. Trustees are appointed for a three-year term that may be renewed twice by approval of the Board.

Recruitment of trustees is carried out with an explicit view to optimising the balance of skills and experience available to the Board. In particular, the Board seeks to ensure it has representation from people living with TS and/or their families; people with a clinical or scientific interest and expertise in TS, as well as people with business, strategic, financial and other functional skills.

The Trustee Board meets at least four times annually.

Board Committees

The board maintains three sub-committees as described below.

Finance and General Purposes Committee (F&GP)

The F&GP is chaired by the Hon.Treasurer and meets ahead of Board meetings, and at other times, and operates a delegated mandate to assist the Chief Executive in preparing budgets; to monitor financial performance by detailed review of monthly management accounts; to assist the Chief Executive in arranging and facilitating the annual independent examination and preparation and publication of statutory accounts.

The F&GP also supports the work of the Chief Executive in a wide range of operational areas including, but not limited to, HR and staffing issues, premises, administration issues and oversight of the TA's operational risks.

Research Sub-Committee (RSC)

TA's annual research funding programme remained suspended this financial year due to an unforeseen downturn in funding and as yet has not been restarted. Proposals for funding of clinical, academic scientific or social scientific work towards the understanding, management and potential cure of TS are solicited annually. To assist the Trustee Board in determining which proposals should be funded by TA, the RSC, chaired by a trustee, operates a delegated mandate to make recommendations to the Trustee Board after evaluating proposals by peer review and by reference to an expert external committee of scientific advisors, the Science Advisory Board (SAB). The RSC meets at key stages of the funding round to ensure that research proposals are fully evaluated in time for the Board to allocate grants.

The RSC continues to monitor the ongoing performance and outcomes of the projects in which it has invested.

Safeguarding and Services Sub-Committee (S&S)

The S&S Committee is chaired by a trustee and oversees and monitor's TA's core service user facing provision. Trustee members include the Trustee Safeguarding Lead as well as other trustees with experience relevant to the committee's oversight responsibilities. The subcommittee is tasked with overseeing the quality and effectiveness of TA's services, ensuring that the scope of each activity remains appropriate and meets the needs of service users on an ongoing basis and that any new initiatives are established with appropriate checks and safeguards. The subcommittee is also responsible for overseeing approval, review, and compliance with all Safeguarding and related policies and monitoring Safeguarding issues on an ongoing basis. The subcommittee meets prior to quarterly Board meetings and on an ad-hoc basis if required.

Risk management

Risk management is a central responsibility of the Trustee Board.

TA adopts a structured formal approach to the identification and management of risk. A Risk Register is prepared by the CEO and reviewed, updated as necessary, and approved by the Trustee Board annually. It identifies TA's key areas of risk including: Governance, Operations, Finance, Funding, Management, Legal, and Reputation.

Each risk is assessed for Probability and Impact to produce a Gross Risk Score. Each risk is subject to mitigation and controls. The effect of mitigation and control is formally assessed and applied to the Gross Risk Score producing the Net Risk Position for each identified risk.

Advisers

In addition to the SAB (above), TA has established an external advisory panel, the TA Advisory Panel. This group (currently comprising six adults with TS) support the aims of TA and work in collaboration with the charity staff, trustees and subject experts to help TA evolve and meet the needs of our service users. Appointments to this advisory group will be made from time to time by the Chief Executive in consultation with the Board of Trustees.

REFERENCE AND ADMINISTRATIVE DETAILS

Registered Company number

02613993 (England and Wales)

Registered Charity number

1003317

Registered office

The Meads Business Centre

19 Kingsmead

FARNBOROUGH

GU14 7SR

Trustees

A Bhandari (resigned 21.12.24)

Professor E Joyce

Dr E R Palmer

Dr J Stern (Honorary Medical Director)

I R Ayres (Treasurer)

G Barnett

A Pape

M Lewis (Chairman)

S Dhuashia

S White

F Peckitt

T Murphy

Company Secretary

E McNally

Independent Examiner

Shaw Gibbs Limited

Wey Court West

Union Road

Farnham

Surrey

GU9 7PT

Solicitors

Bates Welles & Braithwaite London LLP

2-6 Cannon Street

London

EC4M 6Y

Bankers

Barclays Bank plc

7-8 High Street

Ryde

Isle of Wight

PO33 2PN

Lloyds Bank PLC

120 Lewisham Street

London

SE13 6JG

Approved by order of the board of trustees on 6 December 2025 and signed on its behalf by:

I R Ayres - Trustee

Independent examiner's report to the trustees of Tourette Syndrome (UK) Association Trading as Tourettes Action ('the Company')

I report to the charity trustees on my examination of the accounts of the Company for the year ended 31 March 2025.

Responsibilities and basis of report

As the charity's trustees of the Company (and also its directors for the purposes of company law) you are responsible for the preparation of the accounts in accordance with the requirements of the Companies Act 2006 ('the 2006 Act').

Having satisfied myself that the accounts of the Company are not required to be audited under Part 16 of the 2006 Act and are eligible for independent examination, I report in respect of my examination of your charity's accounts as carried out under Section 145 of the Charities Act 2011 ('the 2011 Act'). In carrying out my examination I have followed the Directions given by the Charity Commission under Section 145(5) (b) of the 2011 Act.

Independent examiner's statement

Since your charity's gross income exceeded £250,000 your examiner must be a member of a listed body. I can confirm that I am qualified to undertake the examination because I am a member of the Institute of Chartered Accountants in England and Wales, which is one of the listed bodies.

I have completed my examination. I confirm that no matters have come to my attention in connection with the examination giving me cause to believe:

1.	accounting records were not kept in respect of the Company as required by Section 386 of the 2006 Act; or

2.	the accounts do not accord with those records; or

3.	the accounts do not comply with the accounting requirements of Section 396 of the 2006 Act other than any requirement that the accounts give a true and fair view which is not a matter considered as part of an independent examination; or

4.

the accounts have not been prepared in accordance with the methods and principles of the Statement of Recommended Practice for accounting and reporting by charities (applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102)).

I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached.

Lance Redman

Shaw Gibbs Limited

Wey Court West

Union Road

Farnham

Surrey

GU9 7PT

10 December 2025

2025

2024

Unrestricted

Restricted

Total

Total

funds

funds

funds

funds

Notes

£

£

£

£

INCOME AND ENDOWMENTS FROM

Donations and legacies

2

274,639

174,049

448,688

518,246

Other trading activities

3

98,623

31,292

129,915

105,485

Investment income

4

20,540

-

20,540

15,887

Total

393,802

205,341

599,143

639,618

EXPENDITURE ON

Raising funds

5

33,945

3,388

37,333

35,260

Charitable activities

6

Tourettes Support

352,494

311,028

663,522

587,967

Total

386,439

314,416

700,855

623,227

NET INCOME/(EXPENDITURE)

7,363

(109,075

)

(101,712

)

16,391

RECONCILIATION OF FUNDS

Total funds brought forward

495,052

216,549

711,601

695,210

TOTAL FUNDS CARRIED FORWARD

502,415

107,474

609,889

711,601

2025

2024

Unrestricted

Restricted

Total

Total

funds

funds

funds

funds

Notes

£

£

£

£

FIXED ASSETS

Tangible assets

12

3,022

-

3,022

2,750

CURRENT ASSETS

Stocks

13

11,145

-

11,145

13,560

Debtors

14

71,724

-

71,724

16,705

Cash at bank

463,941

107,474

571,415

742,676

546,810

107,474

654,284

772,941

CREDITORS

Amounts falling due within one year

15

(47,417

)

-

(47,417

)

(64,090

)

NET CURRENT ASSETS

499,393

107,474

606,867

708,851

TOTAL ASSETS LESS CURRENT LIABILITIES

502,415

107,474

609,889

711,601

NET ASSETS

502,415

107,474

609,889

711,601

FUNDS

16

Unrestricted funds

502,415

495,052

Restricted funds

107,474

216,549

TOTAL FUNDS

609,889

711,601

The charitable company is entitled to exemption from audit under Section 477 of the Companies Act 2006 for the year ended 31 March 2025.

The members have not required the company to obtain an audit of its financial statements for the year ended 31 March 2025 in accordance with Section 476 of the Companies Act 2006.

The trustees acknowledge their responsibilities for

(a)	ensuring that the charitable company keeps accounting records that comply with Sections 386 and 387 of the Companies Act 2006 and

(b)

preparing financial statements which give a true and fair view of the state of affairs of the charitable company as at the end of each financial year and of its surplus or deficit for each financial year in accordance with the requirements of Sections 394 and 395 and which otherwise comply with the requirements of the Companies Act 2006 relating to financial statements, so far as applicable to the charitable company.

These financial statements have been prepared in accordance with the provisions applicable to charitable companies subject to the small companies regime.

The financial statements were approved by the Board of Trustees and authorised for issue on 6 December 2025 and were signed on its behalf by:

I R Ayres - Trustee

Cash flows from operating activities

Cash generated from operations

1

(190,385

)

16,505

Net cash (used in)/provided by operating activities

(190,385

)

16,505

Cash flows from investing activities

Purchase of tangible fixed assets

(1,416

)

(1,852

)

Interest received

20,540

15,887

Net cash provided by investing activities

19,124

14,035

Change in cash and cash equivalents in the reporting period

(171,261

)

30,540

Cash and cash equivalents at the beginning of the reporting period

742,676

712,136

Cash and cash equivalents at the end of the reporting period

571,415

742,676

1.	RECONCILIATION OF NET (EXPENDITURE)/INCOME TO NET CASH FLOW FROM OPERATING ACTIVITIES

2025

2024

£

£

Net (expenditure)/income for the reporting period (as per the Statement of Financial Activities)

(101,712

)

16,391

Adjustments for:

Depreciation charges

1,144

1,353

Interest received

(20,540

)

(15,887

)

Decrease/(increase) in stocks

2,415

(7,503

)

(Increase)/decrease in debtors

(55,019

)

7,184

(Decrease)/increase in creditors

(16,673

)

14,967

Net cash (used in)/provided by operations

(190,385

)

16,505

2.	ANALYSIS OF CHANGES IN NET FUNDS

At 1.4.24

Cash flow

At 31.3.25

£

£

£

Net cash

Cash at bank

742,676

(171,261

)

571,415

742,676

(171,261

)

571,415

Total

742,676

(171,261

)

571,415

1.	ACCOUNTING POLICIES

Basis of preparing the financial statements

The financial statements of the charitable company, which is a public benefit entity under FRS 102, have been prepared in accordance with the Charities SORP (FRS 102) 'Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019)', Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland' and the Companies Act 2006. The financial statements have been prepared under the historical cost convention.

Income

All income is recognised in the Statement of Financial Activities once the charity has entitlement to the funds, it is probable that the income will be received and the amount can be measured reliably.

Expenditure

Liabilities are recognised as expenditure as soon as there is a legal or constructive obligation committing the charity to that expenditure, it is probable that a transfer of economic benefits will be required in settlement and the amount of the obligation can be measured reliably. Expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all cost related to the category. Where costs cannot be directly attributed to particular headings they have been allocated to activities on a basis consistent with the use of resources.

Raising funds

These comprise fundraising and marketing expenditure. Charitable activities expenditure includes services to beneficiaries.

Governance costs

Comprise the costs of compliance and organisational administration, constitutional and statutory requirements and include independent reviewer's cost and legal and professional fees.

Allocation and apportionment of costs

Costs of generating funds comprise fundraising and marketing expenditure.

Charitable activities expenditure includes services to beneficiaries.

Support costs include those costs connected with the management of the charity's assets, organisational management and administration and compliance with constitutional and statutory requirements.

Tangible fixed assets

Depreciation is provided at the following annual rates in order to write off each asset over its estimated useful life.

Plant and machinery

-

25% on cost

Computer equipment

-

25% on cost

The charity does not capitalise smaller assets of less than £500. These are included in the Statement of Financial Activities when incurred.

Stocks

Stocks are valued at the lower of cost and net realisable value, after making due allowance for obsolete and slow moving items.