It has been an incredible year for our community and our charity. When news broke of a step change in the potential treatment of Huntington’s disease, our community Ambassadors mobilised – powerfully communicating the hope this brings. The promising results from uniQure’s recent trial of its experimental gene therapy AMT-130 generated huge media interest. Coverage across major print and broadcast channels reached millions of people and we received hundreds of comments across our social media channels. As a trusted voice, we supported informed, realistic and accurate reporting.
These results have brought hope to our community, but we recognise the challenges around access to treatment and timelines. We continue to support everyone who is affected by Huntington’s disease, responding to concerns and helping to manage expectations. It is an exciting time for drug development, with a large number of prospective treatments in the pipeline. We continue to work with our community and our partners to drive this forward.
We helped to secure access to mental health services for people with Huntington’s disease. NHS England updated its guidance to make clear that mental health services should not exclude anyone because they have Huntington’s disease. This guidance is helping people with Huntington’s disease get access to mental health services. We welcomed publication of the Welsh government’s Quality Statement for Mental Health, which makes clear that people with Huntington’s disease should not be excluded from mental health services.
The cost of living crisis continues to impact our community and we saw a 44% increase in applications to our welfare grants programme this year. We worked with our community and other charities, including the Disability Benefits Consortium, to secure a major win for disabled people. Although the government’s Universal Credit Bill was approved, ministers backed down from their proposals to slash Personal Independence Payment (PIP). Over 1,300 people signed our letter to the Work and Pensions Secretary, calling for the plans to be scrapped.
Our amazing community remains at the heart of everything we do and inspires us every day. Our Experts by Experience group, HD Voice, supported research on issues including end of life care and mental health support. HD Youth Voice continued to shape our Youth Engagement Service, challenge stigma and support their peers. Social media lives, initially piloted by HD Youth Voice, are now a key engagement tool co-produced with our community. During the year, our Ambassadors played a hugely important role in raising awareness and ensuring our community’s voice is heard.
With dedicated support from our Volunteering Manager, we welcomed several new and returning branches and groups this year - including a group who had not met since the COVID-19 pandemic.
We launched a new, distance learning training course for professionals with 558 people already completing the course through the Flourish Click platform. Helping us to embrace new technologies, we established our Artificial Intelligence (AI) policy and delivered training in AI for all staff.
Our core services remain in high demand and make a meaningful difference. We can only sustain our lifeline services with the kind and generous support of our community fundraisers, donors, funders and partners – for which we are grateful.
Together, we are building a better life for people affected by Huntington’s disease.
The trustees present their annual report and financial statements for the year ended 31 March 2026.
The financial statements have been prepared in accordance with the accounting policies set out in note 1 to the financial statements and comply with the charity's Memorandum and Articles of Association, the Companies Act 2006 and "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)".
Charity objects
The Huntington’s Disease Association’s objects are the relief and treatment of those suffering from or believed to be suffering from Huntington’s disease and to provide financial support for such persons and their families in need and for research and the dissemination of the results of such research for the public benefit into the cause and possible cures, whether partial or complete, and possible prevention of the said disease.
About the Huntington’s Disease Association
We are the only national charity that supports people affected by this rare disease across England and Wales.
Huntington’s is a profoundly disabling neurological disease caused by a faulty gene. If one of your parents has the disease, you have a 50% chance of inheriting it. There is no cure yet and the disease is terminal. People usually start showing symptoms between the ages of 30 and 50. Over time, the person with Huntington’s loses their ability to walk, talk, think clearly, swallow and control their movements. Eventually, the person will need complete care.
Established in 1971 as a peer support group and registered as a charity in 1987, we have worked with and for the Huntington’s community for over 50 years and remain community-led. We have a membership of 4,457 people, including people living with Huntington’s disease, family members, and health and social care professionals. We have 14 local branches and 23 groups, which are led by volunteers.
Our vision
Together we will build a better life for anyone affected by Huntington’s disease.
Our mission
To enable everyone affected by Huntington's disease to live life to their full potential by:
Improving care and support
Educating families and the professionals who work with them
Championing the needs of the Huntington's community by working together
Influencing decision makers to tackle discrimination and secure equity of access to services
Our values
We are:
Tenacious
Experienced
Compassionate
Inclusive
Inspirational
Public benefit
The trustees have paid due regard to guidance issued by the Charity Commission in deciding what activities the charity should undertake.
Our strategy
We have continued to deliver our Strategy 2023-2027. The strategy was developed with and for our community. It sets out what we want to achieve over five years and has five goals:
We will ensure that everyone affected by Huntington’s disease gets the care and support they need
We will help make each day with Huntington’s disease the best possible day
We will make sure the voices of people affected by Huntington’s disease are heard and at the heart of everything we do
We will not rest until everyone with Huntington’s disease has access to treatments
We will be a resilient charity
Over the following pages, we report on what we’ve achieved under each goal this year.
Our impact
In the face of a profoundly disabling and incurable disease, we help people to make progress against four key outcomes. This year, our evaluation data shows that, because of our support:
96% of 1,069 respondents have a better knowledge and understanding of the disease
84% of 263 respondents feel less isolated
88% of 721 respondents feel more resilient and better able to cope with challenges
89% of 1,095 respondents feel more prepared for the future
We evaluate our impact through surveys, polls, feedback and stories.
During the year, we recorded three accidents and one incident. We received no formal complaints. We made 30 safeguarding referrals during the year.
Our year in numbers
4,897 people supported, including:
2,288 people with the disease
627 people at risk of having the disease
1,045 carers
We welcomed 994 new people to our support this year
202 volunteers
14 branches
23 groups
25 MP Huntington’s Disease Champions
182 participants at our Community Conference and AGM
253,553 website visitors
12 webinars with 750 attendances and recordings viewed 1,859 times on YouTube
7 online courses for our community with 46 attendances
2,450 attendances across our training programme for professionals
558 completions of our new distance learning course
11 care homes now accredited through our Quality Assured programme
3 care homes newly accredited
2 care homes retained their accreditation
65 welfare grants awarded with a total value of £24,483
96% of 1,069 respondents have a better knowledge and understanding of the disease
84% of 263 respondents feel less isolated
88% of 721 respondents feel more resilient and better able to cope with challenges
89% of 1,095 respondents feel more prepared for the future
Goal 1: We will ensure that everyone affected by Huntington's disease gets the care and support they need
Our ambitions under this goal are:
Anyone affected by Huntington’s disease has the best support and is aware of the Huntington’s Disease Association
Everyone can access high quality care, including a multi-disciplinary team
People are able to make an informed choice about genetic testing
People know what advice and support is available
This year, we:
Ensured the best support through our Specialist Huntington’s Disease Advisory service
Helped children and young people to thrive
Campaigned for access to mental health services and co-ordinated care
Accredited care homes through our Quality Assured programme
Supported people to make an informed choice about genetic testing
Raised awareness of the advice and support we offer
We ensured the best support through our Specialist Huntington’s Disease Advisory service
Our Specialist Huntington’s Disease Advisory service is our core service, supporting anyone affected by Huntington’s disease across England and Wales. This year, our team of Specialist Advisers continued working across the regions to:
Provide practical advice and emotional support
Deliver our telephone helpline service
Share trusted information resources
Support people at specialist Huntington’s disease clinics
Attend Multi-Disciplinary Team meetings and work with other professionals
Educate health and social care professionals to support better diagnosis and ongoing care
Support our volunteer-led branches and groups
Connect younger family members with our Youth Engagement Service, HDYES
Help people to access our welfare grants programme and other support.
This year, we supported 4,897 people through our Advisory service and Youth Engagement Service. This included 2,288 people with the disease, 627 people at risk of having the disease and 1,045 carers. We welcomed 994 new people to our support this year.
Jenny’s story
Jenny is 63 years old and married with two daughters. In early 2022, after struggling for over ten years with worsening symptoms, she was diagnosed with Huntington’s disease.
Jenny started her career as a nurse and later ran her own Montessori childcare service. As she began to struggle with extreme tiredness and brain fog, Jenny was forced to close her business earlier than planned. She told us: “What might have taken a couple of hours was now taking me all day.” Without knowing it, Jenny was experiencing early symptoms of Huntington’s disease.
Jenny did not know that she was at risk of inheriting Huntington’s disease. Her mother had been diagnosed with dementia, which Jenny now believes was a misdiagnosis of Huntington’s disease. After struggling for years with increasing tiredness, personality changes and symptoms that she thought were caused by the menopause, Jenny learned that a great aunt had been diagnosed with Huntington’s disease shortly before she died.
Now determined to find out more, Jenny landed on our website, “to find out as much as I could.” After calling our national helpline, Jenny was connected with her local Specialist Adviser, who supported Jenny through the genetic testing process and her diagnosis.
Jenny’s symptoms have a profound impact on her family, putting them under immense strain. She told us, “[I can be] suddenly crying, and that passing in a minute, playing situations over and over in my head, and emotions, particularly anger, which is so extreme and totally uncontrollable in the moment towards my family, friends, and Nigel, my husband of forty years, who is still by my side.”
Her husband Nigel initially struggled to accept help but has found peer support through our local carers’ group, which is supported by our local Specialist Adviser and run by volunteers.
Jenny continues to get support from our Specialist Adviser and use the resources on our website. She has taken part in research and accessed our online psychological support programmes. Jenny has set up a local support group and is now an Ambassador for our charity.
Speaking at our Community Conference 2025, Jenny told delegates: “[The Huntington’s Disease Association] helps me today and has helped me to believe I still have a future.”
We helped children and young people to thrive
Our Youth Engagement Service, HDYES, supports children and young people aged 8-25 who are impacted by Huntington’s disease. We also support parents and guardians, and help professionals to understand Huntington’s disease so that they can provide better support. HDYES is part-funded by a National Lottery Community Fund Reaching Communities grant until September 2026.
Our aim is to provide intensive, direct support to 300 children and young people over three years. So far, 316 children and young people have received direct support from a Youth Worker, and 100 have attended an event. Fifty-nine children and young people aged 8 – 25 were new to the service this year.
This year, we delivered more in person events based on what children and young people told us they want, including bowling, mini golf and escape rooms. For some children and young people, attendance at an event this year was their first point of contact with HDYES. We ran our second HDYES residential camp, with 37 children and young people aged 8 – 17 taking part.
We recruited a new cohort to our ambitious and inspiring HD Youth Voice group. The group has continued to shape HDYES and support their peers. Alongside regular online meetings, HD Youth Voice came together at their residential camp to co-produce projects for the coming year. The group will co-produce wellbeing resources focused on emotions, develop a podcast, and get involved in fundraising.
“We're taking our stories and putting them to work to change it for other people. What we didn't experience in our stories but wish we had, support-wise, that's what we're trying to do for the younger generation impacted by Huntington's disease.” Joe, HD Youth Voice member
The HD Youth Voice camp was an opportunity for members to connect and support each other – and get a break from caring responsibilities at home. Talking about the impact of meeting other young people who are impacted by Huntington’s disease, one HD Youth Voice member told us:
“It has transformed my life. It’s created a space where I can be authentically me without fear of being judged. I don’t know where I would be without the people I’ve met.”
We ran two courses for parents, guardians and carers. Seven people took part in Navigating Huntington’s, our four-week course for parents, guardians and carers of children under 18 who are at risk of inheriting Huntington’s disease. All of those taking part said they felt better able to support their child.
Six people took part in Parents of Adults at Risk, our five-week course for parents of adult children over 18 who are at risk of inheriting Huntington’s disease or are pre-manifest. All of those taking part said they felt better able to support their child, less isolated, more resilient and better prepared for the future.
We integrated our HDYES data into Power BI, supporting project monitoring and evaluation and enabling data visualisation.
We campaigned for access to mental health services and co-ordinated care
We continued to pursue recognised guidelines for Huntington’s disease. We shared our Unseen and Unheard: The Need to Improve Mental Healthcare for People Living with Huntington’s Disease report with NHS England’s Director of Mental Health. Our report is informed by our community and 16 neuropsychiatrists signed a supporting letter. NHS England has since made clear that mental health services should not exclude anyone because they have Huntington’s disease. Their updated guidance states:
“Mental health services shouldn’t exclude anyone because of any physical health diagnosis, neurodevelopmental condition (for example autism or ADHD) or neurological diagnosis (for example Huntington’s Disease, Parkinson’s or Dementia). Services should be offered based on need and the likelihood of them being helpful, rather than determined by these diagnoses.” NHS England Adult and older adult mental health guidance
This guidance has helped people with Huntington’s disease get access to mental health services.
"I've used the NHS England guidance as leverage to help patients with Huntington’s disease and mental illness access appropriate mental health care on a number of occasions now. Many mental health teams are under the impression that a neurological diagnosis (such as Huntington’s disease) acts as an automatic exclusion to access to their services. There have been several cases when I have sent over the guidance to the team manager and this has led to the patient getting access to mental health care." Professor Hugh Rickards, Consultant in Neuropsychiatry
We welcomed new guidance from the National Institute for Health and Care Excellence (NICE) on rehabilitation for people living with progressive neurological conditions. A key recommendation is that people with these conditions, including Huntington’s disease, should have a single point of contact to co-ordinate their care. People in our community have told us that this issue is important to them. Following the announcement of this new guidance, we wrote to all Members of Parliament across England and Wales to highlight this development.
In Wales, we attended the Finding Common Ground in Rare Diseases event at the Welsh Parliament and followed up with speakers to ensure that people in Wales will benefit from the new NICE guideline. Our Chief Executive, Cath Stanley, wrote to the Welsh government’s Cabinet Secretary for Health and Social Care, seeking assurances on this issue.
We met representatives from NHS Wales Performance and Improvement, the body that supports NHS Wales to transform clinical services in line with national priorities and standards. We highlighted the need to improve access to mental health services for people with Huntington’s disease in Wales. We welcomed publication of the Welsh government’s Quality Statement for Mental Health, which defines the outcomes and standards that mental health services must deliver. The Quality Statement makes clear that people with Huntington’s disease should not be excluded from mental health services.
“Services will be designed and delivered using an intersectional approach that actively considers how overlapping experiences of identity, discrimination, and disadvantage shape people’s mental health, access to care, and outcomes. People with physical health diagnosis, neurodivergent conditions (for example autism or ADHD) or neurological diagnosis (for example Huntington’s disease, Parkinson’s or Dementia) will not be excluded from services.” Welsh government Quality Statement for Mental Health
We accredited care homes through our Quality Assured programme
Our Quality Assured programme sets the standard for excellence in the care of people with Huntington’s disease. Quality Assured recognises care homes who are committed to high quality person-centred care and builds trust with families and professionals. This year, following a rigorous accreditation process, three care homes were newly accredited and two retained their accreditation. Eleven care homes are now accredited through Quality Assured.
We supported people to make an informed choice about genetic testing
In the UK, less than 21% of people who are at risk of Huntington’s disease get tested to see if they have inherited the gene. Genetic testing is a personal decision, and no two journeys are the same.
This year, we had a discussion on genetic testing with eight young adults at our Newcastle event. The group used a quiz and visual exercise to encourage reflection and informed decision-making. We presented on joint working at the St George’s Genomics Day. Members of our HDYES team, and our community Ambassador Niall, presented to 40 delegates at the Genetic Counsellor North West Development Day. We talked about how, when, and why children may learn about their risk, the support we provide, and how to discuss Huntington’s disease with young people.
“I’ve signposted to the Huntington’s Disease Association in the past, but now, seeing the incredible work that you do, I will actively be referring to your service.” Genetic Counsellor North West Development Day delegate
Community members shared their experiences of genetic testing and Pre-implantation Genetic Testing (PGT) through social media lives on our TikTok, Instagram and Facebook channels.
We raised awareness of Huntington’s disease and the advice and support we offer
Our community helped to deliver our successful Behind the Gene campaign for Huntington’s Disease Awareness Month during May. The campaign highlighted the invisible challenges and untold stories of the disease.
Community members Maureen and Becky shared their powerful stories, which had 1,653 reads online. Twenty-five volunteers shared factsheets with over 100 healthcare settings and we supported six pop-up events.
During Awareness Month, we had 2,649 landing page visits and 19,519 social media likes, reactions and shares. Our short campaign clips received 134,845 views.
Our inclusive Odds and Socks Day raised funds and awareness of the 50/50 chance of inheriting the gene. Children and young people, including Bella-Rose, talked in their school assemblies about how Huntington’s disease affects their families.
“It was great to feel a part of something so important to me. Seeing all the children so interested in what I had to say was really empowering, and made me feel proud of myself. I think now they understand a little better, and I hope they can grow up remembering what Huntington's is, which should allow for more awareness in the future.”
Bella-Rose
We raised awareness and shared trusted information through our website. This year, our website had 253,553 visitors. People used the Recite Me translation tool to access 551 pages, with top languages including Swedish, Polish and Albanian.
Social media is an increasingly important way to reach our community. We currently have nine channels, including TikTok, Instagram and Facebook. We have 41,453 followers across all channels, an increase of 40% from 29,674 last year. Our videos were watched 681,614 times during the year.
Initially piloted through HDYES with members of HD Youth Voice, social media lives are now a key engagement tool co-produced with our community. From January 2026, we delivered ten social media lives, co-hosted by 21 community members. Discussions covered making a positive start to the year, fundraising, being an Ambassador, and getting involved with HD Youth Voice. Community members shared their experiences of genetic testing and Pre-implantation Genetic Testing (PGT). We also discussed Power of Attorney. We have seen strong engagement from our community with social media lives and will continue to grow this programme.
Across the year, we delivered online content on topics including keeping active, planning for the future, research developments, caring for a loved one, safeguarding, and mental health.
We continued to engage with people through our mailing list, which this year grew by 57% from 6,500 to 10,232 subscribers.
Goal 2: We will help make each day with Huntington's disease the best possible day
Our ambitions under this goal are:
People understand the choices they can make to live with Huntington’s disease
People have the best quality of life available
People have access to tools that can make life easier
This year, we:
Shared trusted information through our webinars and resources
Brought people together through online and in-person events
Provided welfare grants to make life easier
Provided psychological support through online courses
We shared trusted information through our webinars and resources
We delivered 12 webinars on a range of subjects that are important to our community. We explored issues including financial vulnerability, sleep, weight loss and eating behaviours, menopause and Huntington’s disease, self-neglect, mental capacity, medical fitness to drive and mental health challenges.
We worked in partnership to deliver a session on care co-ordination research with Integrate-HD and results from our psychological support programmes with the University of Leicester. Huntington’s disease advocate and author Jimmy Pollard joined us to discuss cognitive understanding in caregiving. We ran First Aid sessions with the British Red Cross.
We delivered a special Family Voices webinar in collaboration with the UK HD Alliance, When Bob Dylan met Woody Guthrie. Woody’s granddaughter, Anna Canoni, shared personal insights into Woody’s journey with Huntington’s disease.
We had 750 attendances at our webinars and an additional 1,859 views of webinar recordings on our YouTube channel.
We published new information resources on driving with Huntington’s disease and our Employment Guide. We shared our Hospital Passport document, which people with Huntington’s disease can personalise and take with them if they go into hospital. All our resources are available to download from our website.
We brought people together through online and in-person events
Community Conference and AGM
This year’s Community Conference and AGM brought our community, colleagues, partners and leading researchers together. The weekend included talks, workshops, and a chance for people to get together. The event was a sell-out with 182 people joining us at Crewe Hall. Following the announcement of a major research breakthrough, the room was packed for Professor Ed Wild’s update. His round-up of the latest research news was recorded and shared through our YouTube channel, where it has been viewed over 1,500 times.
We are grateful for the support of our Community Conference and AGM sponsors Alnylam and Wave Life Sciences and to our exhibitors, Berwick Care, Elysium Healthcare, Exemplar Health Care, Ivolve Care & Support, PJ Care, Royal Hospital for Neuro-disability, SpeakUnique and the University of Birmingham. We are grateful to Roche for supporting the event through an educational grant.
Celebrating 20 years of our JHD Weekend
This year’s JHD Weekend was extra special as we celebrated 20 years of this unique and much-loved event. This annual weekend supports children, young people and families who are impacted by Juvenile Huntington’s disease.
Thirty-two people, including ten children and young people with Juvenile Huntington’s disease, took part in inclusive adventure activities, enjoyed a celebratory party, and developed friendships – with children and young people reporting they had made new friends during the event. Our evaluation showed that 100% of survey respondents felt more connected to other people and more prepared for the future because of the event. All respondents reported that their wellbeing had improved.
Our community Ambassador, Paramjit, and her daughter Sheenam, who has Juvenile Huntington’s disease, have been attending the event for several years. Paramjit told us:
“The 20th anniversary celebrations were nothing short of extraordinary. There was something deeply moving about being surrounded by so many familiar faces who have returned year after year, while also holding close in our thoughts those who are no longer with us. What stood out most was the genuine joy reflected from everyone.”
This year, we also ran online peer support sessions for families impacted by Juvenile Huntington’s disease. Our online Christmas panto for families was kindly supported by Willow Foundation.
HDYES camp
Thirty-seven children and young people aged 8 – 17 joined us for our biggest HDYES camp yet. During the five-day residential, children and young people enjoyed activities including abseiling, canoeing, a silent disco, trapeze, crafts and campfires. Our Youth Workers ran tailored education sessions for different age groups. Four children and young people accessed support from our Youth Engagement Service for the first time by coming to camp.
During camp, we ran a creative consultation session with children and young people to find out what they value most about HDYES. Children and young people told us how much they value the support of their Youth Worker, meeting new people and making friends they trust, and the opportunity to take part in activities they would not otherwise be able to do.
Children and young people completed our annual survey, which shows that HDYES helps children to have a better understanding of Huntington’s disease, feel less isolated and feel more resilient.
“They bring everyone together and the people that work for HDYES are absolutely amazing. They always bring people’s mood up and supply you with everything you need. It was amazing here!”
Young person who took part in our HDYES camp
Children and young people have told us they prefer in person support and activities over online sessions. During the year, we delivered local events for children and young people, including mini golf, bowling and escape rooms. HD Youth Voice members enjoyed a day out at London Zoo.
HDYES is supported by a three-year Reaching Communities grant from The National Lottery Community Fund until September 2026.
Events for young adults
We continued to develop our support for young adults aged 18 - 40. This year we ran two in person events, attended by 18 young people in total. Together, we discussed research and decisions around genetic testing. The events, held in London and Newcastle, included wellbeing activities and the opportunity for people to meet others who are in a similar situation.
We also delivered six online support events for young adults and an education event on Pre-implantation Genetic Testing (PGT), which was supported by our Trustee, Consultant Clinical Geneticist Dr Nayana Lahiri and our community Ambassadors.
Supporting local events
During the year, we supported local events including the launch of the North Lincolnshire Neuro Support Café, an event led by our North Wales branch, our family day in Hertfordshire, and our family day at Swansea Community Farm.
We provided welfare grants to make life easier
We received 68 applications to our welfare grants programme and made 65 grants with a total value of £24,483. Our welfare grants helped people to buy essential household goods and specialist equipment. One grant supported a family where one parent has Huntington’s disease and the other has Stage 4 cancer. One of their four children has additional needs. The family was struggling with their laundry; their grant purchased a large tumble dryer to help them manage more easily.
Another grant helped a person with Huntington’s disease who had moved into an unfurnished flat with few possessions after a family breakdown.
As the cost of living crisis continues to impact our community, we saw a 44% increase in welfare grant applications this year. We are grateful to the Victoria Convalescent Trust for making a block grant of £10,000 towards our welfare grants programme, which has helped us meet increased demand.
We provided psychological support through online courses
We continued to offer psychological support through our Keeping Yourself in Mind courses in partnership with the University of Leicester. The programme is led by clinical psychologist Dr Sarah Gunn with support from our Specialist Advisers. Based on Acceptance and Commitment Therapy, Keeping Yourself in Mind aims to help people accept and live with challenges while respecting their values and goals. The course meets a gap in therapeutic support for people who are impacted by Huntington’s disease.
We delivered four Keeping Yourself in Mind courses this year, tailored for family carers, people who are gene positive, people who are at risk, and people who are experiencing early symptoms. In total, 24 people took part. Responding to demand from our community, we also ran five refresher sessions for people who have previously completed a Keeping Yourself in Mind course. We shared new handbooks, helping people to continue using the approaches they learned on the course.
We hosted a webinar with Dr Gunn to share results of the Keeping Yourself in Mind programme. Results show that people taking the course experienced improved mood, lower anxiety, and felt less overwhelmed by difficult or upsetting thoughts. These changes were sustained for people several weeks after completing the course. People told us they valued therapy that was specifically focused on Huntington’s disease and found the tools helpful.
“I don’t feel so alone now and I have a wider toolbox to use. My values have changed – my goals are small, but big steps to me.” Keeping Yourself in Mind course participant
We launched a new bereavement support programme, led by a volunteer bereavement counsellor and supported by our Specialist Advisers. Nine people took part in the six-week pilot programme. People told us they valued the connection with others and support that was specifically focused on Huntington’s disease.
Goal 3: We will make sure the voices of people affected by Huntington’s disease are heard and at the heart of everything we do
Our ambitions under this goal are:
Our work is driven by people affected by Huntington’s disease
We will understand and advocate the needs of everyone affected by Huntington’s disease
We will increase our reach and work with all communities affected by Huntington’s disease
We will increase people’s skills to enable them to support people living with Huntington’s disease
This year, we:
Put community voice at the heart of research through HD Voice
Put youth voice at the heart of our charity with HD Youth Voice
Worked with our Ambassadors to share their powerful stories
Campaigned on issues that matter to our community
Trained and educated professionals
We put community voice at the heart of research through HD Voice
Our Experts by Experience group, HD Voice, has 35 members. The group plays an important role in shaping our work and enabling research. This year, the group supported research on topics including end of life care, tough ethical situations in Huntington’s disease healthcare, and mental health support. HD Voice also supported Severn Hospice’s project on improving care for people and families affected by Huntington’s disease.
HD Voice members came together in our new HD Forum. These informal, online sessions are an opportunity for members to connect and reflect on projects.
Members also took part in our Disability Benefits Reform focus group, our Quality Assured care home accreditation panels, and our Huntington’s Disease Association Awards panel. They reviewed our new information resources.
“We are so grateful for the voices, reflections and input from the community. Your experiences help keep our work focused on the things that matter most, not just what researchers think is important.” Dr Sarah Gunn, University of Leicester
We put youth voice at the heart of our charity with HD Youth Voice
HD Youth Voice, our group of 15 young people affected by Huntington’s disease, continued to shape our Youth Engagement Service, challenge stigma and support their peers.
This year, the group co-produced a Wellbeing Box that was piloted with 29 children and young people who are supported by our Youth Engagement Service. The Wellbeing Box was packed with resources to help support better mental health, including affirmation cards, a notebook, positivity stickers, a letter from HD Youth Voice and a bracelet made by a HD Youth Voice member. The box linked to digital resources available on our website, designed to help children and young people boost their mood, stay grounded and cope when things feel tough.
Young people who received a Wellbeing Box told us:
“I loved it because it made me feel and realise I’m not the only one going through what I’m going through.”
“[It] brought me a lot of comfort when I was having a bad day.”
HD Youth Voice also continued to provide peer support by sharing their stories and co-hosting our social media lives.
We worked with our Ambassadors to share their powerful stories
During the year, our community Ambassadors played a hugely important role in raising awareness and ensuring our community’s voice is heard.
Across the year, Ambassadors responded to 78 requests for support, including co-presenting our social media lives, taking part in events, and co-producing our Behind the Gene campaign for Huntington’s Disease Awareness Month. Three Ambassadors spoke at our Community Conference, bravely sharing their powerful and deeply personal stories about how Huntington’s disease has changed their lives.
Ambassadors mobilised as part of our response to uniQure’s AMT-130 gene therapy research announcement, helping to explain what this breakthrough means to our community across significant media coverage.
We grew our team to 67 Ambassadors and continued to support their development. Ambassadors came together for an in-person event in Birmingham this year. This was an opportunity to thank them for their support, listen to what they want from the programme and provide training. In response to this consultation, we provided media training for Ambassadors and created our How to Speak to the Media guide for Ambassadors.
Hannah’s story
Hannah, previously a healthcare assistant in a mental health hospital, is now a carer for her husband Stu. Hannah and Stu have two children, Harry and Bella-Rose.
Stu was diagnosed with Huntington’s disease in 2017. Hannah told us, “All our plans, all our dreams, everything just stopped and I didn't know how to even go forward. But at the same time, something else changed inside me. I knew I had to fight. I had to protect my husband, my children and our future.”
Learning more about Huntington’s disease, and knowing that their children were at risk, Hannah told us, “I never felt so alone. I felt like the only person in the world who was breaking inside.” Things changed when Hannah got in touch with us for support. Hannah describes the charity as “my lifeline” and says, “they guided us, supported us and held my hand for every single step.”
“[My Adviser] gave me all the tools I needed to be a successful caregiver for my husband and helped me access services. The branch connected me with local families living in the same reality. Together, we formed a local support group, and from this day on, we still meet once a month. They’ve become an absolute anchor to me.”
Harry and Bella-Rose get support through the Huntington’s Disease Youth Engagement Service. “I can scream and shout about them [HDYES] because they are just incredible,” Hannah says.
Harry and Bella-Rose now have regular meetings at school with their Youth Worker and attend the HDYES summer camp, which Hannah says, “gives them the chance to be around people who understand them and they don't have to feel alone.”
Hannah became a community Ambassador because she “wanted to give something back.” She describes this role “as one of the greatest honours of my life. I’ve met so many passionate and strong people who are determined, just like me, to make a huge difference.”
Sharing her story at our Community Conference 2025, Hannah said, “They've given us more than just help, they've given us hope. My husband, at just 42 years old, now requires 24-hour care from washing to eating; he needs me by his side. I know this now means that his life is limited, but even now, he remains fearless. Together, we push through the darkness and somehow we always find that light. That light comes from you.”
“Because of you, my husband's life and my children's lives are brighter. You've helped me to shape strong, brave and resilient young people that I could not be prouder of.”
We campaigned on issues that matter to our community
For many people living with Huntington’s disease, disability benefits are an essential lifeline. Findings from our Disability Benefits survey showed that almost four in five (79%) respondents did not believe that the Personal Independence Payment (PIP) assessment process meets the needs of people with Huntington’s disease. Two out of three (66%) respondents told us they had experienced challenges in applying for and being awarded PIP, saying that the assessor did not understand the physical symptoms of Huntington’s disease.
As the government planned to cut benefits for disabled people, over 1,300 people signed our letter to the Work and Pensions Secretary, calling for the plans to be scrapped. Our Chief Executive, Cath Stanley, personally delivered our letter to the Department for Work and Pensions.
We wrote to 160 MPs who had signed a reasoned amendment that would defeat the legislation, thanking them for their support and urging them to continue to oppose the Bill, which would hurt people affected by Huntington’s disease for generations to come.
In a coalition of 85 charities, including the Disability Benefits Consortium, we signed a joint statement urging MPs to vote down the Bill. This action was covered by major news channels. We were part of joint sector briefings highlighting how the legislation would negatively affect disabled people, and made our own representations to Members of Parliament.
These actions helped to secure a significant win. Although the Universal Credit Bill was approved, the pressure put on the government curbed their plans. Ministers backed down from their proposals to slash Personal Independence Payment (PIP). Concessions were secured on how the review of Personal Independence Payment (PIP) by the Minister of State for Social Security and Disability will work. We asked for clarification over how disabled people will be part of this process. Our Chief Executive, Cath Stanley wrote to the Secretary of State asking how the Huntington’s disease community will be heard in this process.
We also met with officials at the Department for Work and Pensions, highlighting discrepancies in the paper and online application forms for PIP.
We trained and educated professionals
Supporting better diagnosis and care for people with Huntington’s disease, we continued to train and educate professionals. We had a total 2,450 attendances on our professionals training programme this year, plus 558 completions of our new distance learning programme. GPs, nurses, care home staff, social workers, Continuing Healthcare Assessors, and police all engaged with our training.
We delivered our three-day Understanding Huntington’s Disease Certified Professionals course twice, with 92 professionals taking the course.
Ninety-four professionals attended our Mental Health Study day. All 28 delegates who responded to our survey said they had a better understanding of Huntington’s disease and felt more prepared to provide better quality care and support. We also trained 92 mental health professionals from Derbyshire.
We presented to 259 GPs at the Pulse 365 LIVE event for rare diseases. Our local Specialist Adviser and our Education Lead trained GP practice staff in Gateshead. We supported teaching for medical students in Plymouth, improving understanding of lived experience and complex care. Our Juvenile Huntington’s Disease Lead and one of our community Ambassadors spoke on the Birmingham MSc Neuropsychiatry module on Huntington’s disease. We held our second webinar specifically for GPs.
Ninety-four people, including community members and professionals, attended our Finding Your Way webinars, which gave an overview of the help available, including our services.
Too many people living with Huntington’s disease are not getting the NHS funding they are entitled to. To address this, we delivered training to 95 Continuing Healthcare Assessors. We co-delivered this training with Alex Fisher, Senior Occupational Therapist in Neuropsychiatry and Huntington’s Disease Module Lead at the University of Birmingham. Creating additional resources, we published Alex’s blog, Helping you to understand Continuing Healthcare and launched our new guide for professionals on NHS Continuing Healthcare Assessments.
“I can honestly say that this was one of the best and most informative training sessions I have been on in years. The level was just right and really helped illuminate the specific challenges that people with Huntington’s disease face. I learned so many things that I did not know before and I know this will greatly improve my work with people with the condition.” Continuing Healthcare Assessor who attended our training
We delivered a workshop at the British Association of Social Workers (BASW) conference, supported by one of our Ambassadors. The workshop built on our guide for social workers who support adults with Huntington’s disease, which we published with BASW last year.
We trained members of the police, raising awareness of how Huntington’s disease symptoms can be misunderstood.
Our Specialist Advisers and Youth Workers delivered 98 training and education sessions attended by 1,335 professionals. We delivered 12 Overview of Huntington’s Disease for Care Staff sessions attended by 651 professionals. Nineteen professionals attended our blended learning HD Champions course for care professionals.
We launched our new Huntington’s Disease Awareness course through the Flourish Click platform. This distance learning resource provides a new, flexible way for health and social care professionals to access our training. The course is available through our website and included in wider Flourish training bundles, helping us to reach new audiences. Five hundred and fifty-eight people completed the course through the platform. Learners rated the course highly and described it as clear, informative and accessible.
In addition to our training programme, we continued to develop our professionals’ network, delivering 12 lunchtime sessions with 124 attendances. Our Youth Workers and Specialist Advisers attended local awareness raising events with health and social care professionals. We made it easier for professionals to find what they need on our website and developed our professionals’ newsletter.
Goal 4: We will not rest until everyone with Huntington’s disease has access to treatments
Our ambitions under this goal are:
We will continue to support the community in accessing any new treatments
We will advocate for equity of access to research opportunities
We will support our partners in the global Huntington’s disease community to find treatments for the disease
This year, we:
Supported the announcement of a major research breakthrough
Supported the development and accessibility of new treatments
Supported recruitment into clinical trials with Enroll-HD
Continued our involvement in EHDN working groups
We supported the announcement of a major research breakthrough
In September 2025, US biotechnology company uniQure announced a step change in the potential treatment of Huntington’s disease. In a recent trial, its experimental gene therapy AMT-130 was safe and well tolerated and slowed progression of Huntington’s disease by around 75%, as measured using the composite unified Huntington’s disease rating scale (cUHDRS). The results of the trial showed that the drug is helping to protect and rescue brain cells, and are the most promising trial results to date.
“This result is the good news we’ve been working and waiting for, not just a treatment that slows progression of this terrible disease, but one that does so with truly stunning effectiveness. It is nothing less than the dawn of a new age for families impacted by Huntington’s disease. We must now work diligently to turn this breakthrough into something that benefits everyone who needs it.” Professor Ed Wild, UCL Huntington’s Disease Centre
The news generated huge media interest, with coverage across BBC News, ITV News, Sky News, The Guardian, The Times, The Telegraph, The i Paper and The Independent, reaching millions of people. We received hundreds of comments across our social media channels. We supported informed, realistic and accurate reporting with our Chief Executive, Cath Stanley and our bilingual Specialist Adviser for Wales giving media interviews. Our Ambassadors mobilised in response to media requests, powerfully communicating the hope this news brings. We shared trusted updates with our community, including news articles on our website.
“The emotions have been a rollercoaster: tears, shock, disbelief, joy, gratitude, more tears. As a community we have spent so many years, decades, generations with little tangible hope. Despite this, we have been so fortunate to have the Huntington’s Disease Association and a fantastic, relentless, resilient team of medical professionals and researchers. Their decades of hard work came to fruition yesterday with this life changing news.” Sarah, community Ambassador
AMT-130 is administered as a single dose through an injection directly into the brain. The treatment involves neurosurgery lasting over 12 hours. Because of the way it works and its complexity, the procedure may not be suitable for everyone. The trial is now finished. Even if the drug is approved by the necessary regulatory bodies, the final decision on whether it becomes available on the NHS could take several years. The results have brought hope to our community, but we recognise the challenges around access to treatment and timelines. We continue to support everyone who is affected by Huntington’s disease, responding to concerns and helping to manage expectations.
This breakthrough is only possible because of the people from our community who are recruited into clinical trials through Enroll-HD, and the dedicated researchers who work tirelessly to find a treatment that will slow down or stop the progression of Huntington’s disease.
We supported the development and accessibility of new treatments
We continued to collaborate with pharmaceutical companies, researchers and healthcare providers to accelerate the development and accessibility of treatments for Huntington’s disease.
Working with pharmaceutical companies, we shared updates on new and potential drug developments with our community. This year, we shared important research updates, including:
uniQure announced a major breakthrough in the potential treatment of Huntington’s disease through its experimental gene therapy AMT-130. The results of the trial showed that the drug is helping to protect and rescue brain cells, and are the most promising trial results to date.
Alnylam confirmed its Phase 1b clinical trial of ALN-HTT02, an investigational RNAi therapeutic that targets exon 1 of HTT with the aim of reducing all forms of mutant Huntingtin protein
Skyhawk Therapeutics announced positive first interim results from its Phase 1 Clinical Trial of SKY-0515
LoQus23 confirmed it is moving forward with a new research drug called LQT-23, which is being developed specifically for Huntington’s disease
Harness Therapeutics announced the nomination of HRN001 as its lead drug candidate for Huntington’s disease and the formation of a clinical advisory board to support the programme’s advancement towards clinical evaluation
Roche provided an update on its GENERATION HD2 trial of tominersen, a huntingtin-lowering drug.
While we celebrate progress, we also acknowledge the challenges inherent in drug development. This year, we learned that Prilenia’s application to the European Medicines Agency (EMA) for pridopidine was not accepted for marketing authorisation. This means pridopidine will not be sold for the treatment of Huntington's disease in Europe. Prilenia continues to pursue approval with MHRA and NICE. We shared this update with our community.
We supported recruitment into clinical trials with Enroll-HD
Through partnership working with Enroll-HD and pharmaceutical companies, we created opportunities for people in our community to take part in clinical trials and access potential treatments. Enroll-HD is the world’s largest observational study for Huntington’s disease, providing data to drive research into potential treatments and access to clinical trials.
Our Ambassador, Dan filmed himself at an Enroll-HD appointment, helping people to understand what’s involved. His video is available on our website.
As part of our commitment to breaking down barriers to research participation, we hosted a CHDI focus group about Enroll-HD with members of HD Voice, HD Youth Voice and our Ambassadors.
“Our focus group ran seamlessly thanks to their attention to detail and strong follow-through. Their communication was always clear and timely, and they approached every task with warmth, enthusiasm and a genuine spirit of collaboration. It’s been a truly positive and productive partnership.” Neha Sinha, Director, Clinical Assessment Methodology, CHDI
We continued our involvement in EHDN working groups
We continued our involvement with many of the European Huntington’s Disease Network (EHDN) working groups that actively contribute to the Huntington’s disease community.
We are part of the following groups:
Psychological Interventions and Approaches - looking at assessing psychological interventions to improve psychological wellbeing
Genetic Counselling and Testing – reviewing and updating guidelines related to genetic counselling and testing, addressing challenging ethical and legal cases, and providing support and training for EHDN members on genetic counselling issues
Paediatric HD - ensuring that children and young people with Huntington’s disease have the option of being included in research programmes
Multidisciplinary Treatment and Care - aiming to make expert treatment and care accessible for patients worldwide by offering evidence-based guidelines and co-ordination processes
Occupational Therapy - striving to provide quality occupational therapy by developing consensus on best practices through guidelines and clinical tips
Physiotherapy - enabling the use of best evidence in physiotherapy for people with Huntington’s disease
Young adults - driving forward evidence-based improvements to the design and delivery of programmes targeted at young people to reduce the psycho-social impact of Huntington’s disease. This will lead to the development of treatments and therapeutic approaches for all those impacted by the disease.
Goal 5: We will be a resilient charity.
Our ambitions under this goal are:
Everyone feels valued and welcome
The charity is financially stable, well governed and with a clear plan for managed growth
Our staff and volunteers are invested in and supported
The charity is well connected through partnerships
The Huntington’s disease community has active champions
This year, we:
Continued to develop our approach to Equity, Diversity and Inclusion
Worked with our community and partners to fundraise
Made sustainable choices that support the environment
Invested in and supported our staff
Invested in and supported our volunteers
Worked in partnership to support our community
Engaged MPs as Huntington’s Disease Champions
We continued to develop our approach to Equity, Diversity and Inclusion
This year, we created surveys to capture a better demographic picture of our charity and understand how staff feel about EDI and our approach. The surveys were designed by our EDI Working Group of colleagues, working with senior leadership. We will launch the surveys in 2026/27. Findings will help us to identify learning and development needs and training themes.
We introduced new and enhanced policies, including carer’s leave, dependants’ leave, fertility treatment, menopause, menstruation and periods, and mental health and wellbeing. We introduced a Wellbeing Day that staff can use flexibly for any reason.
We also introduced a new optional demographic survey for people who use our services. This is helping us to get deeper insight into our community and identify anywhere we might be underrepresented or could improve engagement. Supporting accessibility and inclusion, people can complete these surveys in person, online or by telephone.
We worked with our community and partners to fundraise
We can only sustain our lifeline services with the support of our community fundraisers, donors, funders and partners.
This year, our amazing community raised funds with passion, commitment and creativity. Activities ranged from run clubs and ultra-marathons, to a Himalayan trek and raising awareness of Huntington’s disease with the Dalai Lama. Alongside these incredible challenges, supporters brought people together through garden parties, samosa sales, community events, and countless other acts of generosity and imagination. We are deeply grateful for every effort. In total, we raised £597,103 from community and activity events over the course of the year.
Our third Odds and Socks Day raised £11,041 from 34 fundraisers. Once again, it proved to be our most inclusive fundraising event, with individuals, schools, care homes, dance schools, hospital wards, Rotary clubs and football teams all taking part, united by the simple joy of wearing odd socks to raise funds and awareness of a cause that matters.
Our HD8000 series of events, HDMove, HDHike and HDBike, raised £6,288 and engaged 31 community fundraisers. The name HD8000 is a reminder that around 8,000 people in the UK have Huntington’s disease.
Our fundraisers rose to the challenge at flagship running events, including:
The TCS London Marathon – our team of 25 raised £117,169
The Great North Run – our team of 19 runners raised £16,161
Royal Parks Half Marathon – our team of seven runners raised £10,696
We recognise that this is an economically challenging time for many of our supporters. We have strengthened our communications to highlight the impact of their giving. Despite these wider pressures, income from both regular and one-off donations has continued to perform well. We raised £98,691 from regular donations and £107,203 in single gifts, reflecting the ongoing commitment and generosity of our supporter community. In addition, our charity lottery raised £32,436, providing an important source of unrestricted funding.
We are deeply grateful to the families and friends who have chosen to support the charity through in memory donations, which increased by 19% on the previous year to a total of £113,665, reflecting both their generosity and their wish to create a lasting tribute to their loved ones.
In legacy income, we had our strongest year to date. We received notifications of £1,487,139 from gifts in wills this year. We recognise that volatility in this income stream is inherent and we are building a clearer picture of future income while investing in the long-term relationships that make this possible. Our membership of The Free Wills Network has helped us grow the number of people pledging a legacy through this service to 57. These gifts help secure the long-term future of our services and provide a lasting legacy for families affected by Huntington’s disease.
In June, 90 guests celebrated the ten-year anniversary of our Huntington’s Disease Association Awards. These awards recognise our inspirational fundraisers and the professionals who support our community. We are grateful for the continued support of FI Real Estate Management who sponsored the event.
Following community nominations and hundreds of votes, the winners were announced as:
Young Fundraiser of the Year (under 18 years): Jessica and Isobel Williams for taking part in the York Kids’ Triathlon
Fundraiser of the Year (over 18): Ian Rock, who completed a non-stop 74 mile hike around the Isle of Wight
Fundraising Group of the Year: Cliffy’s Challenge, for organising and taking part in many events
Excellence in Health or Social Care: Julie Yates, Care Home Manager
Community Group Award: West Midlands branch
Founders’ Award: Sue Watkin, for her exceptional governance of the charity and vision which led to the establishment of the Specialist Huntington's Disease Advisory service.
This year, we secured £379,925 from trusts and foundations, including a £50,000 core costs grant from Garfield Weston Foundation. This represents a second consecutive year of growth for this income stream while working in a challenging landscape. We are grateful for the generous support of our trusts and foundations partners.
Funding from The National Lottery Community Fund continued to make a huge difference to the children and young people we support. This three-year Reaching Communities grant of £418,360 is part-funding HDYES, our Youth Engagement Service, until September 2026.
We received a total £32,640 from our statutory partners: Birmingham City Council, Dorset HealthCare University NHS Foundation Trust, NHS Devon ICB, and NHS Lancashire and South Cumbria ICB.
We secured support from corporate partners, including:
Our Community Conference and AGM sponsors: Alnylam, Wave Life Sciences
Our Community Conference sponsoring exhibitors: Berwick Care, Elysium Healthcare, Exemplar Health Care, Ivolve Care & Support, PJ Care, Royal Hospital for Neuro-disability
Our parliamentary event sponsors: Ferrer, Wave Life Sciences
Educational grants: Ferrer, Roche
Huntington’s Disease Association Awards 2025 event: FI Real Estate Management
We meet or exceed all statutory and regulatory obligations. We are members of the Fundraising Regulator and the Chartered Institute of Fundraising, following their best practice guidance and the Charity Commission guidance for Charity Trustees (CC20). We received zero complaints about our fundraising this year. We comply with the Privacy and Electronic Communications Regulations (PECR). We work with people who are vulnerable and follow the Chartered Institute of Fundraising’s guidance on Treating Donors Fairly, which responds to the needs of people in vulnerable circumstances.
We made sustainable choices that support the environment
This year, we established our Environmental Policy and continued to develop our approach to sustainability. We continued to follow simpler recycling legislation and reduced the number of paper bills we receive, moving towards digital billing with contractors.
We made environmentally conscious choices in our purchasing, ensuring that our office supplies are made from more sustainable materials. We made more sustainable choices in our marketing and promotional materials, choosing recycled paper where possible and merchandise made from recycled or compostable materials.
We continued to work with contractors who support the environment. Our hybrid working model helped to reduce daily commuting to the office.
We invested in and supported our staff
This year, we were accredited by the Living Wage Foundation as a Living Wage Employer. This means that all staff, including any third party contractors, are paid the real Living Wage. We also achieved Disability Confident accreditation. As a Disability Confident Employer, we offer an interview to applicants with a disability or long term condition who best meet the specified criteria for the role. Applicants can opt-in to be part of this scheme during the recruitment process.
Following the huge media coverage generated by the uniQure AMT-130 gene therapy research announcement, some Heads of Department, our bilingual Specialist Adviser for North Wales, and our community Ambassadors received media training. This will help us to mobilise even more effectively to future breaking news – helping us to support informed, realistic and accurate reporting.
We established our Artificial Intelligence (AI) policy and delivered training in AI for all staff, helping colleagues to feel more confident in using emerging technologies.
We invested in and supported our volunteers
We continued to invest in and support our volunteers, with dedicated support from our Volunteering Manager. Our volunteers play a huge role across our charity, in roles including Ambassadors, Trustees, Branch Committee Members, HD Voice members, HD Youth Voice members, JHD Weekend Leaders, and Cheer Team volunteers – supporting our runners at the TCS London Marathon and Great North Run.
Our nationwide network of branches and groups continued to grow. Led by local volunteers, our branches and groups provide peer support, welfare grants, and community events. We launched new groups this year and several branches and groups returned, including our Manchester group, which had stopped meeting during the COVID-19 pandemic.
Branches delivered local events, including the HD Ball delivered by our Dorset branch, a Family Day led by our North Wales branch, and a Summer Picnic delivered by our Hull and East Riding branch.
For the second year running, we ran drop-in sessions to support branch treasurers in completing their annual returns. We delivered training for volunteers in Safeguarding Awareness and Data Protection.
During Volunteers’ Week, we ran a social media campaign celebrating our volunteers. Every volunteer received a personalised card during the week, and a personalised card at Christmas.
We introduced a new Community Group Award at our Huntington’s Disease Association Awards 2025. Our West Midlands branch won the inaugural award.
“So many words come to mind…Surprised! Wow! Thrilled! Thankful! Honoured! Wonderful to be able to display the award to all our contacts and donors…I told everyone that the award was for everyone.” Paula Aubrey, Chair, West Midlands branch
Dal Padda from our West Midlands branch joined our Executive Council as a Trustee alongside Dr Akshay Nair. Dal brings significant experience as a paediatric nurse and cared for her son, who had Juvenile Huntington’s disease. Akshay is a consultant neuropsychiatrist working in the Huntington’s disease service at St George’s Hospital, London. He worked with us to help change NHS guidance on access to mental health services for people with Huntington’s disease and chairs the UK and Ireland Huntington’s Network.
We worked in partnership to support our community
We continued to work in partnership to support our community. This year, we joined the Wheelchair Alliance, helping to strengthen the voice of wheelchair users and their carers.
We continued our role on the UK Neuro Forum, which addresses gaps in treatment and care for people with neurological conditions. We attended a meeting of the UK Neurological Alliances, highlighting the importance of people having a single point of contact for care co-ordination. Our community told us about their experiences of care co-ordination in response to our survey.
Our Juvenile Huntington’s Disease Lead co-authored the paper Economic Cost of Current and Alternative Models of Multidisciplinary Care of Juvenile-Onset Huntington’s Disease.
Our Chief Executive, Cath Stanley, continued to raise awareness of the needs of people with Huntington’s disease by writing articles, campaigning for change and working with partner organisations. This year, her partnership activities included:
Chairing the Neurological Alliance
Chairing a session at the One Brain conference organised by the Neurological Alliance and Royal College of Psychiatrists
Contributing to Hospice UK’s study on improving palliative care for progressive neurological conditions
Speaking at Hospice UK’s national conference
Speaking at the Royal College of Psychiatrists’ International Conference, sharing our findings on the experiences of people with Huntington’s disease trying to access mental health services
Speaking at the UK Neuro Predictive Testing Consortium
Contributing to a new guide from the Association of British Insurers (ABI)
Working with the UK Huntington’s Disease Alliance
Reviewing Huntington’s disease storylines in television scripts.
Recognising her significant contribution to services for people with Huntington’s disease, Cath was awarded the British Empire Medal (BEM) in the King’s Birthday Honours 2025. Cath has dedicated over 30 years to improving the lives of people affected by the disease. She is a driving force in developing nationwide services and delivering change with and for our community. Cath received her medal from the Lord Lieutenant of Merseyside in a ceremony at Southport Town Hall.
“I am extremely honoured to receive this award from His Majesty. It is a privilege to work alongside the Huntington’s disease community, a community whose resilience and determination inspire me every single day. This recognition is not just for me, but for every individual and family facing Huntington’s disease.” Cath Stanley BEM, Chief Executive, Huntington’s Disease Association
We promoted engagement with research
We partnered with institutions across the UK to promote their research, creating opportunities for people in our community to take part in studies, including:
Exploring how people with Huntington’s disease experience communication with professionals about assisted dying in the UK, University of Leicester
The psychological experiences of using Pre-implantation Genetic Testing (PGT) in the context of Huntington’s disease, Lancaster University
Exploring the views of people affected by Huntington’s disease on an AI interface for the future delivery of a psychological intervention to improve mental health, Lancaster University
Development and validation of Huntington’s disease-specific quality of life tools, Galen Research Limited
Attitudes towards Huntington’s disease genetic testing, Professor Simona Botti, London Business School; Dr Selin Goskel, Vrije Universiteit Amsterdam and Dr Nazli Gurdamar-Okutur, Koc University
Development and pilot evaluation of an artificial-intelligence based rhythmic auditory stimulation system for personalised training of finger movements in Parkinson’s and Huntington’s disease (DRUM-AI), Cardiff University.
We shared research findings from DeNPRU Exeter’s policy research project about people living alone with a progressive neurological condition. HD Voice had contributed to the research.
We engaged MPs as Huntington’s Disease Champions
Our parliamentary event raised awareness with MPs about the importance of access to future treatments, and the need for enhanced care and support for people affected by Huntington’s disease. Our community Ambassador, Annette spoke at the event, describing the “postcode lottery of care”. Twenty-five MPs pledged to be Huntington’s Disease Champions and advocate for their constituents on these issues. The event was kindly sponsored by Helen Maguire MP. We are grateful to Wave Life Sciences and Ferrer for their sponsorship.
This year, we met with 14 MPs and 12 MSs. Huntington’s disease was mentioned in Parliament and the Senedd chamber of the Welsh Parliament, with several Written Questions submitted during the year. A number of MSs showed their support for Huntington’s Disease Awareness Month.
Financial review
The results for the year show an overall surplus of £456,547 (2025: deficit £191,844) made up of a surplus on the general fund of £445,045 (2025: deficit £200,349) and a surplus on the restricted funds of £11,502 (2025: surplus £8,505). The overall performance was dependent on income from legacies, which make up an increasing share of our income. Fundraising centrally, in branches, and by our supporters throughout England and Wales, was maintained despite challenging economic conditions.
At the year end, the restricted funds balance amounted to £169,541 (2025: £158,039). Details are given, in note 23 of the specific conditions applicable to these funds. The designated funds, which have been set aside for specific purposes, were £387,683 (2025: £443,974) and are detailed in note 24 which also shows their application during the year.
The Trustees have considered the need to match general reserves with the target calculated in accordance with the reserves policy and are pleased to report that reserves continue to meet target.
The substantial surplus arising from the recognition of quantifiable legacies receivable has enabled the charity to continue to develop its activities. Previous policies established to maintain readily accessible reserves has meant that variations in cash flow have not adversely impacted on operations. The charity has therefore been able to approve a budget for 2027 in line with 2026 as adjusted for inflation.
Careful control of expenditure and a positive outlook for our income from multiple streams leaves the charity in a strong position.
Reserves Policy
The general and designated reserve requirements of the charity have been re-evaluated for the 2026 accounts following our reserves policy, which ensures comprehensive consideration of financial risks and commitments of the charity.
We have identified that general reserves need to cover the salaries of staff members and running costs in the event of short-term income fluctuations, which arise not only as a result of general economic functions but also from the timing of legacy receipts and major fundraising events.
The commitments at 31 March 2026 to support projects part-funded by third parties have been recognised in designated funds established to provide assurance that the charity will have adequate resources to complete those projects and maintain them if alternative revenue sources are required.
It was agreed that the target for general reserves should be set at six months recurring costs being approximately £1.2m, plus £500,000 to cover legacy receipt variations, giving a total of £1.7m. At the year end, free reserves available, excluding designated funds and tangible fixed assets but including fixed asset investments, stood at £2,037,488 (2025: £1,531,707) and therefore exceeded target. For 2026/27, the trustees have agreed a deficit budget to further continue to enhance the support that we offer to people affected by Huntington's Disease.
Future plans
We will continue to deliver on the commitments of our Strategy 2023-2027 and begin development of our new strategy. We will work with our community to ensure it reflects their needs and aspirations.
Our Awareness Month 2026 campaign will continue the theme of Behind the Gene, which resonated with our community. Community Ambassadors will share their stories. Volunteers will share information resources and deliver pop-up events.
During Awareness Month, we will launch our new professional guidelines. Developed with experts, these guidelines will provide clear, practical and accessible information – helping professionals to deliver high quality care. The guidelines are endorsed by the European Huntington’s Disease Network (EHDN). Some are endorsed by relevant professional bodies, such as the Royal College of Occupational Therapists.
We will continue to campaign on the issues that matter most to our community. We will launch our report, Support at every step: Improving care co-ordination for people living with Huntington’s disease, at a Westminster event. The report will include findings from our care co-ordination community survey. It will call for people with Huntington’s disease to have a single point of contact for care co-ordination.
We will launch our Continuing HealthCare: How to Apply guide, helping to ensure that people living with Huntington’s disease get the NHS funding they are entitled to.
Our HD Youth Voice group will continue to shape our Youth Engagement Service, HDYES, and support their peers. The group will co-produce wellbeing resources focused on emotions, develop a podcast, and get involved in fundraising.
Our National Lottery Community Fund Reaching Communities grant ends in September 2026. The grant has supported significant development and growth of HDYES over three years and made a huge impact for children and young people. We will seek alternative funding to sustain HDYES over the longer-term.
We will take part in the European Huntington’s Disease Network (EHDN) Clinical Research Congress in Krakow, Poland.
We will strengthen our IT infrastructure, streamlining processes and enhancing cyber security through a significant systems upgrade. This will improve available tools and resources – and help us make the most of emerging technologies, such as Artificial Intelligence (AI).
We will continue to invest in and support our volunteers. We will create a Volunteer Handbook, develop a volunteer database and deliver further training. We expect new branches and groups to develop and launch, helping us to reach even more people in our community at the most local level.
We will continue to train and educate professionals, so they can provide the best care and support. We will also pilot new training for family carers on thinking and behaviour in Huntington’s disease. These online workshops will equip people who are caring for a family member with the same information we would deliver to care professionals, delivered in an inclusive and accessible way.
We will deliver further cohorts of our Keeping Yourself in Mind psychological support programme. Based on requests from our community, this will include a course for people who have tested negative. We will provide further courses for carers and people who have tested positive. We will run more refresher sessions, helping people to stay in touch with each other and the therapeutic approaches they have learned on the course.
Following positive early data from Keeping Yourself in Mind, Dr Sarah Gunn and her team at the University of Leicester have continued to evaluate the impact of the programmes. We expect findings in multiple papers to be submitted for publication in the coming year with a poster to be submitted to the European Huntington’s Disease Network (EHDN) Clinical Research Congress 2026.
We will continue to play a role on the steering committee for Dr Gunn’s £1.96m Wellcome Trust funded research project to better understand how Huntington’s disease affects mental wellbeing and what can be done to improve support. We will support recruitment for a planned national survey on Huntington’s disease-related mental wellbeing, consulting on study directions and key questions to answer over the eight-year project. We will also help disseminate findings to our community.
We will survey our staff to capture a better demographic picture of our charity and understand how colleagues feel about EDI and our approach. Findings will help us to identify learning and development needs and training themes.
We will continue to develop our approach to environmental sustainability, measuring our baseline carbon footprint and working to reduce it.
Our community will remain at the heart of everything we do. Together we will build a better life for anyone affected by Huntington’s disease.
Governing document
The company is a registered charity founded in 1971 and incorporated on 21 May 1986. The charity is governed by the Memorandum and Articles of Association.
The trustees, who are also the directors for the purpose of company law, and who served during the year and up to the date of signature of the financial statements were:
The Trustees are elected to serve a term of three years at the Annual General Meeting by the voting members of the Association who are the guarantors.
All trustees are covered by the charity’s directors and officers insurance.
The charity is managed by an Executive Council made up of the trustees, which met on seven occasions during the year.
The Executive Council members focus on the strategic decisions required for the overall governance of the Huntington’s Disease Association and devolve operational running to the management team.
The Chief Executive and senior managers oversee the operational management of the Huntington’s Disease Association within the policies and guidelines approved by the Executive Council. Prior to board meetings, the Chief Executive provides a written update report to the Executive Council on the operational management of the charity, which all senior managers have an input into. These reports provide the Executive Council with a detailed overview of the operational progress of the Association. The Chief Executive attends board meetings to discuss the management reports further and answer any questions the trustees may have.
Most trustees are already familiar with the work of the charity and their training involves briefings on their duties and liabilities. Additionally, new trustees receive an induction pack covering:
The duties of charity trustees;
An induction pack outlining duties and responsibilities;
The Association’s Memorandum and Articles of Association, strategic plan, latest published annual report and accounts, financial projections and budgets, project and programme plans and publications;
Trustee details and staff structure;
The Essential Trustee: what you need to know (Charity Commission);
Minutes and reports submitted to the previous three meetings of the board of trustees.
DSG Audit were appointed on 1 November 2025 and, in accordance with section 485 of the Companies Act 2006, a resolution proposing that they be re-appointed will be put at a General Meeting.
Small company provisions
This report has been prepared in accordance with the provisions applicable to companies subject to the small companies regime.
The trustees' report was approved by the Board of Trustees.
The trustees, who are also the directors of Huntington's Disease Association for the purpose of company law, are responsible for preparing the Trustees' Report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).
Company law requires the trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the charity and of the incoming resources and application of resources, including the income and expenditure, of the charitable company for that year.
In preparing these financial statements, the trustees are required to:
- select suitable accounting policies and then apply them consistently;
- observe the methods and principles in the Charities SORP;
- make judgements and estimates that are reasonable and prudent;
- state whether applicable UK Accounting Standards have been followed, subject to any material departures disclosed and explained in the financial statements; and
- prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charity will continue in operation.
The trustees are responsible for keeping adequate accounting records that disclose with reasonable accuracy at any time the financial position of the charity and enable them to ensure that the financial statements comply with the Companies Act 2006. They are also responsible for safeguarding the assets of the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.
The trustees are responsible for the maintenance and integrity of the charity and financial information included on the charity's website. Legislation in the United Kingdom governing the preparation and dissemination of financial statements may differ from legislation in other jurisdictions.
Opinion
We have audited the financial statements of Huntington's Disease Association (the ‘charity’) for the year ended 31 March 2026 which comprise the statement of financial activities, the balance sheet, the statement of cash flows and notes to the financial statements, including 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 described in the Auditor's responsibilities 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, including the FRC’s Ethical Standard, 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.
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 significant doubt on the charity’s ability to continue as a going concern 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.
Other information
The other information comprises the information included in the annual report other than the financial statements and our auditor's report thereon. The trustees are responsible for the other information contained within the annual report. Our opinion on the financial statements 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. 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 course of 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 this gives rise to a material misstatement in the financial statements themselves. 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.
Opinions on other matters prescribed by the Companies Act 2006
In our opinion, based on the work undertaken in the course of our audit:
the information given in the trustees' report for the financial year for which the financial statements are prepared, which includes the directors' report prepared for the purposes of company law, is consistent with the financial statements; and
the directors' report included within the trustees' report has been prepared in accordance with applicable legal requirements.
In the light of the knowledge and understanding of the charity and its environment obtained in the course of the audit, we have not identified material misstatements in the directors' report included within the trustees' report.
We have nothing to report in respect of the following matters in relation to which the Companies Act 2006 requires us to report to you if, in our opinion:
adequate accounting records have not been kept, or returns adequate for our audit have not been received from branches not visited by us; or
the financial statements are not in agreement with the accounting records and returns; or
certain disclosures of trustees' remuneration specified by law are not made; or
we have not received all the information and explanations we require for our audit; or
the trustees were not entitled to prepare the financial statements in accordance with the small companies regime and take advantage of the small companies' exemptions in preparing the trustees' report and from the requirement to prepare a strategic report.
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, is detailed below.
Based on our discussions with the charity’s management and the Trustees, we identified that the following laws and regulations are significant to the entity:
Those laws and regulations considered to have a direct effect on the financial statements include UK financial reporting standards and Charity Law.
Those laws and regulations for which non-compliance may be fundamental to the operating aspects of the charity and therefore may have a material effect on the financial statements include compliance with the charitable objectives, public benefit, fundraising regulations, safeguarding and health and safety legislation.
These matters were discussed amongst the engagement team at the planning stage and the team remained alert to non-compliance throughout the audit.
Audit procedures undertaken in response to the potential risks relating to irregularities (which include fraud and non-compliance with laws and regulations) comprised of: inquiries of management and the Trustees as to whether the entity complies with such laws and regulations; enquiries with the same concerning any actual or potential litigation or claims; inspection of relevant legal correspondence; review of Trustee meeting minutes; testing the appropriateness of journal entries; and the performance of analytical review to identify unexpected movements in account balances which may be indicative of fraud.
No instances of material non-compliance were identified. However, the likelihood of detecting irregularities, including fraud, is limited by the inherent difficulty in detecting irregularities, the effectiveness of the entity’s controls, and the nature, timing and extent of the audit procedures performed. Irregularities that result from fraud might be inherently more difficult to detect than irregularities that result from error. As explained above, there is an unavoidable risk that material misstatements may not be detected, even though the audit has been planned and performed in accordance with ISAs (UK).
A further description of our responsibilities is available on the Financial Reporting Council’s website at: https://www.frc.org.uk/auditorsresponsibilities. This description forms part of our auditor's report.
Use of our report
This report is made solely to the charitable company’s members, as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006. Our audit work has been undertaken so that we might state to the charitable company’s members those matters we are required to state to them in an auditor’s report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the charitable company and the charitable company’s members as a body, for our audit work, for this report, or for the opinions we have formed.
Huntington's Disease Association is a private company limited by guarantee incorporated in England and Wales. The registered office is Liverpool Science Park, Innovation Centre, 131 Mount Pleasant, Liverpool, L3 5TF.
The financial statements have been prepared in accordance with the charity's Memorandum and Articles of Association, the Companies Act 2006 and "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)". The charity is a Public Benefit Entity as defined by FRS 102.
The financial statements are prepared in sterling, which is the functional currency of the charity. Monetary amounts in these financial statements are rounded to the nearest £.
The financial statements have been prepared under the historical cost convention except for the revaluation of fixed asset investments in accordance with the Charities SORP.
At the time of approving the financial statements, the trustees have a reasonable expectation that the charity has adequate resources to continue in operational existence for the foreseeable future. Thus the trustees continue to adopt the going concern basis of accounting in preparing the financial statements.
Unrestricted funds are available for use at the discretion of the trustees in furtherance of their charitable objectives unless the funds have been designated for other purposes.
Designated funds comprise funds which have been set aside at the discretion of the trustees for specific purposes. The purposes and uses of the designated funds are set out in the notes to the accounts.
Restricted funds are subject to specific conditions by donors as to how they may be used. The purposes and uses of the restricted funds are set out in the notes to the accounts.
Income is recognised when the charity is legally entitled to it after any performance conditions have been met, the amounts can be measured reliably, and it is probable that income will be received.
Investment income consists of interest and dividends received and receivable.
Cash donations are recognised on receipt. Other donations are recognised once the charity has been notified of the donation, unless performance conditions require deferral of the amount. Income tax recoverable in relation to donations received under Gift Aid or deeds of covenant is recognised at the time of the donation.
Legacies are recognised when the charity has entitlement to the legacy, receipt is probable and the amount can be measured reliably. In determining the amount recognised, the trustees consider available evidence including grants of probate, estate accounts, solicitor correspondence and other relevant information and, where necessary, apply their best estimate of the amount expected to be received. Where the amount cannot be measured reliably, the legacy is disclosed as a contingent asset where appropriate.
No amounts are included in the financial statements for services donated by volunteers.
Grants, including grants for the purchase of fixed assets, are recognised in full in the statement of financial activities in the year in which they are receivable.
Deferred income represents grants received in advance of the expenditure to which it is allocated to support.
No amounts are included in these financial statements for goods donated to charity shops or services donated by volunteers.
Income from merchandise sales and fundraising income is recognised as earned (that is, as the related goods or services are provided).
All expenditure has been accounted for on an accruals basis and includes irrecoverable VAT where applicable. Expenditure is allocated to relevant activity categories on a basis that is consistent with the use of that resource. Support costs have been attributable to charitable activity in accordance with best estimates.
Research grants are made each year after approval and recommendation by the Medical Advisory Panel. The amount charged to the profit and loss account represents the cost of projects approved during the year.
Tangible fixed assets are initially measured at cost and subsequently measured at cost or valuation, net of depreciation and any impairment losses.
Depreciation is recognised so as to write off the cost or valuation of assets less their residual values over their useful lives on the following bases:
The gain or loss arising on the disposal of an asset is determined as the difference between the sale proceeds and the carrying value of the asset, and is recognised in net income/(expenditure) for the year.
Fixed asset investments are initially measured at transaction price excluding transaction costs, and are subsequently measured at fair value at each reporting date. Changes in fair value are recognised in net income/(expenditure) for the year. Transaction costs are expensed as incurred.
At each reporting end date, the charity reviews the carrying amounts of its tangible assets to determine whether there is any indication that those assets have suffered an impairment loss. If any such indication exists, the recoverable amount of the asset is estimated in order to determine the extent of the impairment loss (if any).
Stocks are valued at the lower of cost or selling price less selling costs, after making due allowance for obsolete and slow-moving items. Cost is calculated using the first-in first-out basis of valuation.
Cash and cash equivalents include cash in hand, deposits held at call with banks, other short-term liquid investments with original maturities of three months or less, and bank overdrafts.
The charity has elected to apply the provisions of Section 11 ‘Basic Financial Instruments’ and Section 12 ‘Other Financial Instruments Issues’ of FRS 102 to all of its financial instruments.
Financial instruments are recognised in the charity's balance sheet when the charity becomes party to the contractual provisions of the instrument.
Financial assets and liabilities are offset, with the net amounts presented in the financial statements, when there is a legally enforceable right to set off the recognised amounts and there is an intention to settle on a net basis or to realise the asset and settle the liability simultaneously.
Basic financial assets, which include debtors and cash and bank balances, are initially measured at transaction price including transaction costs and are subsequently carried at amortised cost using the effective interest method unless the arrangement constitutes a financing transaction, where the transaction is measured at the present value of the future receipts discounted at a market rate of interest. Financial assets classified as receivable within one year are not amortised.
Financial assets, other than those held at fair value through income and expenditure, are assessed for indicators of impairment at each reporting date. Financial assets are impaired where there is objective evidence that, as a result of one or more events that occurred after the initial recognition of the financial asset, the estimated future cash flows have been affected.
If an asset is impaired, the impairment loss is the difference between the carrying amount and the present value of the estimated cash flows discounted at the asset’s original effective interest rate. The impairment loss is recognised in net income/(expenditure) for the year.
If there is a decrease in the impairment loss arising from an event occurring after the impairment was recognised, the impairment is reversed. The reversal is such that the current carrying amount does not exceed what the carrying amount would have been, had the impairment not previously been recognised. The impairment reversal is recognised in net income/(expenditure) for the year.
Financial assets are derecognised only when the contractual rights to the cash flows from the asset expire or are settled, or when the charity transfers the financial asset and substantially all the risks and rewards of ownership to another entity, or if some significant risks and rewards of ownership are retained but control of the asset has transferred to another party that is able to sell the asset in its entirety to an unrelated third party.
Basic financial liabilities, including creditors and bank loans are initially recognised at transaction price unless the arrangement constitutes a financing transaction, where the debt instrument is measured at the present value of the future payments discounted at a market rate of interest. Financial liabilities classified as payable within one year are not amortised.
Debt instruments are subsequently carried at amortised cost, using the effective interest rate method.
Trade creditors are obligations to pay for goods or services that have been acquired in the ordinary course of operations from suppliers. Amounts payable are classified as current liabilities if payment is due within one year or less. If not, they are presented as non-current liabilities. Trade creditors are recognised initially at transaction price and subsequently measured at amortised cost using the effective interest method.
Financial liabilities are derecognised when the charity’s contractual obligations expire or are discharged or cancelled.
The cost of any unused holiday entitlement is recognised in the period in which the employee’s services are received.
Termination benefits are recognised immediately as an expense when the charity is demonstrably committed to terminate the employment of an employee or to provide termination benefits.
Payments to defined contribution retirement benefit schemes are charged as an expense as they fall due.
Branch funds
The funds of the Association’s branches have been consolidated in the accounts.
In the application of the charity’s accounting policies, the trustees are required to make judgements, estimates and assumptions about the carrying amount of assets and liabilities that are not readily apparent from other sources. The estimates and associated assumptions are based on historical experience and other factors that are considered to be relevant. Actual results may differ from these estimates.
The estimates and underlying assumptions are reviewed on an ongoing basis. Revisions to accounting estimates are recognised in the period in which the estimate is revised where the revision affects only that period, or in the period of the revision and future periods where the revision affects both current and future periods.
Legacy income is recognised when entitlement has been established, receipt is probable and the amount can be measured reliably. At the year end, the charity has recognised accrued legacy income in respect of estates where notification has been received and sufficient information is available to estimate the amount receivable.
In determining the amounts recognised, the trustees consider available evidence including grants of probate, wills, estate accounts, solicitor correspondence, post year-end receipts and other relevant information.
Where estates remain under administration, the final amount receivable may differ from the amount accrued due to changes in asset realisation values, estate liabilities, administration expenses and other matters arising before final distribution. The trustees review material legacy receivables individually and recognise their best estimate of the amount expected to be received at the reporting date.
Grants received
Merchandise
None of the trustees (or any persons connected with them) received any remuneration or benefits from the charity during the year (2025: £nil). Four trustees were reimbursed expenses totalling £1,843 for travel and accommodation expenses (2025: seven trustees reimbursed £1,250)
The average monthly number of employees during the year was:
The remuneration of key management personnel, which consists of the Chief Executive and the heads of departments, is as shown below.
The charity is exempt from taxation on its activities because all its income is applied for charitable purposes.
Other debtors include £1,467,442 (2025: £595,091) of legacies receivable.
Included in accruals and deferred income is deferred income of £11,903 (2025: £36,165) relating to income received for future periods.
The charity operates a defined contribution pension scheme for all qualifying employees. The assets of the scheme are held separately from those of the charity in an independently administered fund.
The restricted funds of the charity comprise the unexpended balances of donations and grants held on trust subject to specific conditions by donors as to how they may be used.
Research
Research funds are raised to promote medical and social/ therapeutic research of direct significance to Huntington’s Disease sufferers and their families. Our Medical Advisory Board reviews all applications on an annual basis before a decision is taken by our Executive Council. Funds were received from individuals, organisations and Branches requesting their donation be spent on this activity.
The National Lottery Community Fund
Multiyear funding through The National Lottery Community Fund Reaching Communities programme to support the development of our Huntington's Disease Youth Engagement Service (HDYES).
Specialist HD Advisory Service (SHDA)
The network of Specialist HD Advisers was maintained during the year. Restricted funding relating purely to this service and for each geographical area was received from numerous sources in the period.
Lancashire Training Events
Money raised towards an awareness/training event in the Fylde Coast area.
The Big Give - JHD Weekend
Restricted funding to support our annual JHD Weekend for families impacted by Juvenile Huntington's Disease.
The Big Give - Kind2Mind
Restricted funding to support our psychological support programmes.
JHD Weekend
These relate to individual donations and grants that have been or are to be spent on the JHD weekend.
Access Foundation - funding to run 13 community education courses
AGM - grants towards the AGM / Community conference held in October
Victoria Convalescent Fund.- Funds for welfare grants
Welfare Fund - Funding received towards welfare grants.
The unrestricted funds of the charity comprise the unexpended balances of donations and grants which are not subject to specific conditions by donors and grantors as to how they may be used. These include designated funds which have been set aside out of unrestricted funds by the trustees for specific purposes.
A designated special projects fund of £400,000 was established as a result of legacies received during 2013. This has reduced over the years to 31st March 2025 and the balance at that date has been allocated to the Huntington’s Disease Youth Project. This covers the Association’s costs to completion of £214,000 in addition to the three year funding from the National Lottery and £150,000 to ensure this valuable and successful project can be maintained for a period after externally promised grants have ended.
A similar logic has been applied to the West Midlands Specialist Huntington’s Disease Advisory role for which £35,500 has been designated.
The Branch funds are also considered designated since they are held by individual branches for expenditure in their areas.
At the reporting end date the charity had outstanding commitments for future minimum lease payments under non-cancellable operating leases, which fall due as follows:
Mr Nick Heath, a trustee, is chair of Victoria Convalescent Trust which made grants totaling £11,734 (2025: £10,500) to the charity in the year.
Ms Catherine Lyon, a trustee, received a grant from the charity of £1,000 (2025: £1,000) towards funding for her PhD on end of life care and Huntington's Disease.
In the prior year a trustee appointed during the period was paid £8,450 for bookkeeping services provided prior to their appointment. No payments were made following their appointment.
There were no other related party transactions in the year.
We value the support of trusts, foundations, statutory bodies and corporate partners.
Thank you for caring about people with Huntington’s disease and for making a meaningful difference.
Trusts and foundations
The Access Foundation
Alice Ellen Cooper Dean Charitable Foundation
Allied Vehicles Charitable Trust
Barbour Foundation
Beard Charitable Foundation
Bruce Wake Charitable Trust
Chapman Charitable Trust
Chrysalis Trust
Douglas Arter Foundation
D'Oyly Carte Charitable Trust
Durham Freemasons Charity and Agricola Lodge
The Dyers' Company Charitable Trust
Ethel & Gwynne Morgan Trust
The Eveson Trust
Fowler Smith & Jones Trust
Garfield Weston Foundation
George A Moore Foundation
The Goldcrest Charitable Trust
The Hemby Trust
Hodge Foundation
Hull & East Riding Charitable Trust
J Reginald Corah Foundation Fund
JD Foundation
John James Bristol Foundation
Joseph and Lena Randall Charitable Trust
Kramer Charitable Trust
Lord Cozens-Hardy Trust
The Maud Elkington Trust
The Michael & Anna Wix Charitable Trust
Milles Charitable Foundation
Miss Pannett Charitable Trust
Mrs Gladys Lancaster Will Trust
National Lottery Community Fund
Nigel Scott Will Trust
The Norman Family Trust
Oakdale Trust
OCU Foundation
PF Charitable Trust
Pilkington Charities Fund
Poyser Fund
Proven Family Trust
Sandra Charitable Trust
Sir James Reckitt Charity
Sir John Eastwood Foundation
The Strangward Trust
Sylvia and Colin Shepherd Trust
The Ten Percent Foundation
Victoria Convalescent Trust
The Wixamtree Trust
WO Street Charitable Foundation
Masonic organisations through the Masonic Charitable Foundation’s Relief Chest Scheme
Statutory Birmingham City Council Dorset HealthCare University NHS Foundation Trust NHS Devon ICB NHS Lancashire and South Cumbria ICB
Corporate Alnylam Berwick Care Elysium Healthcare Exemplar Health Care Ferrer FI Real Estate Management Ivolve Care & Support PJ Care Roche Royal Hospital for Neuro-disability Wave Life Sciences |
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