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← The Sandcastle Trust

2025-04-05-accounts

Annual Report & Financial Statements For the year ended 5 April 2025

2 Reference and Administrative Information

Contents

3 - 18

Trustees' Report

Structure, Governance and Management - Who we are

Future Plans

Financial Review

Thank you!

Reserves

Statement of Trustees' Responsibilities

19 20 Financial Statements

Independent Examiner's Report to the Trustees

21 Balance Sheet 22-23 Notes to the Financial Statements

Reference and Administrative Information

The Sandcastle Trust

Registered with The Charity Commission for England and Wales: 1169523 and

The Office of The Scottish Charity Regulator: SC051645

Principal office and registered address: c/o Anderida, Beaconsfield Road, Chelwood Gate, East Sussex, RH17 7LG

Committee of Trustees: Samantha Crouch - Chair Luke Brooker - Treasurer David Singleton Lesley Dodd Eleanor Bateman Ian Bateman Mina Holland Laura Skinner Jessica Clatworthy

Staff Team: Danielle Singleton - Head of Service Delivery and Operations Ali Bryant - Support Services Coordinator

Independent Examiner: Cheeld Wheeler & Co Chartered Certified Accountants Redhill Chambers, 2D High Street Redhill, Surrey RH1 1RJ

Bankers: CAF Bank 25 Kings Hill Avenue Kings Hill, West Malling Kent ME19 4JQ

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Trustees Report Structure, Governance and Management Who we are

The Sandcastle Trust's Mission is to reduce inequalities in emotional well-being outcomes for families living with a rare genetic condition. We walk alongside families providing a toolbox of emotional well-being services that build positive memories, strengthen family relationships, reduce isolation and improve resilience. We also increase public awareness of the inequalities and barriers to emotional well-being that families impacted by rare genetic conditions face, and advocate for positive change.

STRUCTURE GOVERNANCE & MANAGEMENT

condition: to provide practical and emotional support to families living within the UK whereby a member or members of that family have been diagnosed with a rare genetic condition. Particular emphasis is placed on providing affected families with opportunities for family respite.

The Trustees present their report and the accounts for the year ended 5 April 2025.

The Sandcastle Trust is a Charitable Incorporated Organisation which was registered on 6 October 2016.

Beneficiaries: A family is eligible for The Sandcastle Trust’s support when an individual(s) within it have been diagnosed with a rare genetic condition (single gene inheritance, mitochondrial inheritance or chromosome disorder). The Sandcastle Trust defines rare as a condition that affects less than 5 in 10,000 of the general population. The diagnosis must be clinically evidenced. We support families where a child, dependent young adult or parent has a diagnosis and this contributes to significant emotional well-being challenges either for themselves or their immediate family members, for example due to:

Trustees: Under its Constitution, the activities of The Sandcastle Trust are co-ordinated by a Committee of Trustees whose powers and responsibilities are defined in the Governing Document. The Trustees also decide on the general policy to be adopted in the pursuance of the objectives of the Trust. When the need arises, new trustees will be appointed with regard to their experience and background to further the activities of the Trust. The Committee of Trustees during the financial year being reported on are set out on page 1.

Degenerative progression

Public Benefit: The Trustees have complied with the duty to have regard to the public benefit guidance published by the Charities Commission. AIMS, OBJECTIVES AND ACTIVITIES

A life-threatening prognosis

A life-limiting diagnosis

Complex health needs, physical disability and/or learning disabilities

Bereavement as a result of a rare genetic condition

The objects of The Sandcastle Trust as stated in our Articles of Association are for the public benefit, the relief of sickness of those with a rare genetic

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Trustees Report Aims, Objectives and Activities Why we're needed

Rare Genetic Conditions - Facts and Stats

There are more than 6,000 individual rare genetic conditions. Each affects less than 0.1% of the UK’s population, but together they are a significant cause of disability and early death and affect the lives of 3 million people in the UK.[1] Rare genetic conditions can be both life-limiting and life-threatening, and disproportionately affect children, Around 30,000 babies and children are newly diagnosed in the UK each year and more than 3 in 10 children with a rare genetic condition will die before their fifth birthday. [2]

Some rare genetic conditions are inherited, meaning the gene change is passed down from one or both parents. Alternatively, a condition may result from a de novo gene change - a new change in DNA that occurs spontaneously for the first time in that person, often during the formation of the egg or sperm, or very early in development; this kind of change is not present in either parent.

The Need: Some rare genetic conditions are apparent at birth, while others are diagnosed throughout childhood and sometimes into adulthood.

Despite the wide range of rare genetic conditions and the varied symptoms they bring, families consistently described many of the same difficult experiences. Whether navigating limited awareness, delayed diagnosis, relentless hospital appointments, complex treatment decisions and unpredictable health crises, or trying to balance work, parenting and relationships - parents, children, siblings or adults living with a diagnosis all face emotional and psychological demands that can be overwhelming.

Depending on the type of rare genetic condition, it can cause physical disabilities (e.g. Spinal Muscular Atrophy), severe learning disabilities (e.g. Angelman Syndrome) and/or sensory disabilities (e.g. Norrie Disease or Usher Syndrome which both cause severe eyesight and hearing impairment). It is also not uncommon for multiple family members to be affected by the same condition.

Our consultation also revealed that families face complex, intersecting barriers to accessing emotional wellbeing support. Together, these findings clearly show that families impacted by rare genetic conditions are at increased risk of poor emotional well-being and highlight the urgent need to address the emotional needs of the whole family.

The complex challenges associated with rare genetic conditions have a profound impact on the emotional well-being of every member of the family, creating deep-rooted inequalities.

Throughout 2024, we undertook an extensive strategy consultation in which families generously shared their challenges.

[1] National Human Genome Research Institute [2] DHSC - UK Rare Diseases Framework

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84%

What our community told us

have at least one family member experiencing mental health challenges. 69% 94% regularly feel Have suffered anxious anticipatory grief/loss

77%

93%

would describe themselves as depressed

are chronically stressed

68%

have experienced relationship crisis or breakdown

87% are isolated

We asked what aspects of living with a rare genetic condition were the largest contributors to poor emotional well-being within their family:

82% 61% 91% 89% Long hospital stays, Concerns around Impact on Inaccessible painful procedures, genetic inheritance relationships environments traumatic medical for other family events members 69% 84% 74% 70% Having to be the Workplace or Living with Lack of time or “patient expert” and educational uncertainty around capacity for selfeducating health discrimination the condition's care, rest or professionals due to progression or life personal identity lack of awareness.

Living with uncertainty around the condition's progression or life expectancy

Lack of time or capacity for selfcare, rest or personal identity outside caring.

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And what barriers they faced when accessing emotional well-being support:

Financial

Financial challenges limit access to activities that can support mental health: 69% of the respondents had a household income below the national average, largely due to caring responsibilities impacting the number of hours in employment (98%) and disability benefits not meeting additional costs (94%).

Systemic

Standard healthcare pathways tend to focus on physical symptoms rather than psychological impact - 75% of respondents were never asked about their emotional well-being in medical appointments relating to their condition or that of the person they care for. Unfortunately access to counselling via the NHS involves significant wait times. When families are provided with support, they often encounter mental health professionals with little awareness of rare conditions and generic support can fail to meet their highly specific needs.

Practical and Logistic

Finding time away from caring responsibilities, frequent hospital appointments and unpredictable health crises can make it difficult to commit to counselling sessions or engaging in well-being/respite activities. Families with complex medical or accessibility needs who have had previous negative experiences with inaccessible venues or services, understandably can lack the confidence to try again.

Emotional Overload

The idea of arranging support, attending appointments or taking time for respite can feel overwhelming, particularly when families are already operating in “survival mode”. Some describe feeling they must “just keep going”, leaving little space to process their emotions or prioritise their own well-being.

"When our youngest was born, we both had to significantly reduce our working hours to manage his care. A family holiday feels out of reach now, our income just can’t stretch to it."

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Our Strategic Plan 2025-30

At the end of this reporting period, The Sandcastle Trust launched its new five-year strategy, setting out a clear and ambitious direction for our work from 2025 to 2030. The development of this strategy was a significant piece of work undertaken throughout 2024, led by Trustees and staff and shaped by the voices and lived experiences of families in the rare genetic condition community.

Structured around four pillars, our new strategy articulates and builds on our long-term ambition, developed over the past few years, to move

from being primarily a provider of respite and memory-making opportunities, to a charity offering a broad, flexible ‘toolbox’ of emotional well-being

support. While providing direct services to families will always be our primary focus, we recognise that breaking down the barriers to emotional well-being faced by families living with rare genetic conditions also requires greater awareness and broader

systemic change. Our strategy therefore also commits to amplifying the voices of families impacted by rare genetic conditions to influence change.

1. SUPPORT

2. SCALE

GOAL: Sustain our existing services, while GOAL: Strive to ensure that every family developing new approaches to meet the affected by a rare genetic condition in the UK complex and interconnected emotional wellis aware that we are here to support them. being needs of families. We will: We will: ©© Grow the capacity of our existing services Ensure that the most marginalised in the and broaden our support offer. rare genetic condition community are accessing our services. Work with our community. © Work towards our service user database having a balanced representation from each = Extend partnership working.[©] UK nation. Raise our profile and get our messages to ©© Develop a volunteer programme. those who need to hear them, in a way that they can receive them. Improve the way we monitor and © demonstrate the impact of our work. Strengthen our links with other organisations © that work with families impacted by rare genetic conditions. 3. SPEAK UP 4. STRENGTHEN GOAL: Empower families to share the GOAL: The Sandcastle Trust is a sustainable emotional well-being impact of living with charity that will be here to support families rare genetic conditions and the barriers they living with rare genetic conditions for many face in accessing support. Amplify these years to come. We will: voices to influence policy, practice and public understanding. We will: © Operate at the highest level of governance and safeguarding. Plan campaigns, content, and © Have a strong, relevant, inclusive brand communications that drive awareness and © and voice. engagement. Develop new and diverse income Increase our reputation as a ‘trusted voice’ streams. S[©] on this subject and take an active role in disability coalitions and partnerships. Build our reserves to 6 months

Build our reserves to 6 months expenditure.

Share more about The Sandcastle Trust and the impact of our services: Expanding our use of digital to bring people closer to our work.

Ensure we have a strong employment offer that attracts and retains staff.

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Our Support: The Toolbox

The Sandcastle Trust walks alongside families living with the challenges of a rare genetic condition to help support their emotional well-being and resilience.

420 families registered with us to access our services in 2024/5 compared to 329 in 2023/4, a 28% increase.

Families can access our support directly through selfreferral or be referred by a wide range of partners, including condition-specific charities, regional genetic centres, hospices, and health, community and social care organisations.

We offer a flexible toolbox of support, with some services designed for individual family members and others supporting the whole family together.

We carry out beneficiary surveys to monitor the impact of each of our services in outcome areas that contribute to improved emotional well-being and resilience. This data, combined with qualitative feedback, demonstrates our toolbox improves mental health outcomes, reduces isolation, helps carers to maintain their quality of care and generally provides a positive focus which can empower families with a new enthusiasm and strength to deal with the ongoing daily challenges of living with rare genetic conditions.

Family Respite Service

Our Family Respite Service gives families the opportunity to spend quality time together away from their daily routine to refresh, re-energise and reconnect. Many families tell us that rare genetic conditions can put pressure on relationships, limit opportunities for positive shared experiences, and make getting out together feel difficult, whether due to accessibility challenges, the emotional energy needed to plan, or the financial pressures of disability-related costs. Our respite experiences remove these barriers and make meaningful time together feel possible, helping families improve day-to-day emotional well-being, strengthen relationships and build resilience for the long term.

We tailor respite to each family through three strands:

Sandcastle Memory Breaks are free short breaks or special days out that help families create positive shared experiences without worrying about cost or accessibility. Breaks take place in our wheelchairaccessible caravans (in Skegness and North Wales, with fundraising underway for a third on the South Coast). Where our caravans are geographically inaccessible, unsuitable for the size of a family, or unable to meet their specific accessibility requirements, we instead offer alternative short breaks with trusted accessible holiday accommodation partners, or arrange special day trips and annual passes to inclusive attractions (for example, farms or steam railways).

Sandcastle Fair Breaks give families who have previously received a free break the option to rent one of our caravans again at a heavily subsidised rate. This keeps ongoing respite fair and accessible, reducing financial barriers and allowing families to continue building positive memories over time.

Sandcastle Smiles are wellbeing-focused, creative and sensory home-based respite activities, such as baking kits or craft boxes. These offer stress-free fun and connection without the challenges of travel, which can be especially valuable for families navigating palliative care or complex medical needs.

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Counselling Service

Despite the profound emotional impact of rare genetic conditions, specialist emotional support

impacted by a rare genetic condition and provides a safe, non-judgemental space to feel heard, understood and supported. Recognising the strain that a rare genetic condition can place on relationships, we also offer couples counselling to support partners navigating these challenges together.

Our registered therapists are specialists in the emotional and psychological impact of rare conditions and are experienced in delivering support online or by telephone, making help accessible even for families who cannot travel or who have demanding caring responsibilities. The sessions are also fully funded to remove any financial barriers.

Peer Support

Our Peer Support Programme currently offers two routes for families living with rare genetic conditions to connect with others who understand their challenges. The Sandcastle Connections Family Matching Service enables individuals and families to be introduced to others facing the same rare genetic condition, helping them share lived experiences, learn from one another, and feel less alone. Alongside this, the Family Spotlight is a monthly email that features a family seeking peer advice or support on a particular issue. By inviting responses from those with comparable experiences, even when their rare genetic conditions differ, the Family Spotlight encourages collective problem-solving and emotional support across the wider community, showing that while the diagnoses may vary, many of the challenges that families face are shared.

These existing strands will soon be brought together and expanded through the launch of a new project, the Sandcastle Connections Café , an online space designed to strengthen and grow peer support for the rare genetic condition community. Signposting and Information Hub Our Support and Signposting Hub is an online resource bringing together trusted organisations and sources of guidance, advice and practical help for families living with a rare genetic condition. We experienced a =| huge increase in the number of people accessing the hub this year – it received 9,409 unique page views, compared to 1,800 in the previous year.

Rare Voices

Rare Voices is a core project within our Speak Up strategic pillar through which we support and empower individuals and families to share their personal experiences of how rare genetic conditions affect emotional well-being, and the barriers that are often faced in accessing appropriate emotional support.

We amplify Rare Voices through thoughtful storytelling, digital campaigns, and partnerships, increasing public understanding and awareness, with the longer-term aim of influencing thinking and contributing to improvements in emotional wellbeing support.

Rare Voices also plays a vital role in our peer connection work. By sharing real family stories, we help individuals and families see their own experiences reflected in others, reducing isolation and fostering a sense of belonging within a wider community of people who understand what life with a rare genetic condition can mean.

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Trustees Report

Achievements and Performance

Our Impact

~~SS~~ Family Respite Service ~~a a~~

Sandcastle Sandcastle Fair Sandcastle Memories Breaks Smiles 961 (home based respite (free short breaks, special (subsidized short breaks) activities) days & annual passes) individuals 157 families 3 families 75 families supported made up of 664 made up of 12 made up of 285 individuals individuals individuals Impact “Bardet-Biedl syndrome has impacted our lives for decades. We lost one son to it when he was just three years old, and that loss is something we carry with us every single day. Alongside that grief, caring for Christopher has been relentless, day in, day out, for over 30 years. As he’s grown 100% 98% 72% into adulthood, so many services have fallen away, created reported reported leaving it all on us just as we’re growing older and positive improved quality reduced stress facing our own health challenges. When you care family of life memories like this for so long, it wears you down physically, mentally and emotionally. On a basic pension, the financial strain is huge, we simply couldn’t afford a break on our own. Our Sandcastle Trust holiday gave us space to breathe and precious time together without hospital appointments, carers to 69% 62% 82% organise or constant worry. We went to the pier, went to the market and sat on the promenade. It felt less reported a experienced a isolated positive impact positive impact wasn’t crowded on the pier and Christopher loved on confidence on their family that, as he could drive his wheelchair easily and relationships feel free. It really was a much need break.” cee / / / / } j | oa . - 7 s “ . 7 y 4 a i a x +. / . ® ‘y (ype= fl ] bs ’ Re,= C4 ae 4 =., / ae Pr 7Ez# | | - : i } eas - - ca A he ; _ - / j Se 1 Ve a) ee ee ac | Pos Yb) | * ‘ia Pen i sly Ee ™ / . e ~ ‘ ~ ad | | Bia ate : / ~ + / ( "Gy ah hy i ‘ i, ? lia Fy “ a eeat7 | =: — a // B ‘ Yral eroe . a : 4 4 | | Lid i | = i |" = | a a = —ae / a r 7 : ‘s i a" gah, pak — L a : / bi Fr : "> 7 i A ies Geek, i 9 ¥ ~ . “s h; . } oa esa / ae oe | . —— __— a f ; ae 7 he bes — ——— ~— re —— \ ——— aae eePePeee ee \= _— ee mA 9

Counselling Service

Individual Couples Sessions Sessions 34 150 delivered 16 delivered individuals supported Impact 98% 100% 100% 86% felt better equipped to felt that it was ‘very of individuals who of couples who manage the emotional helpful and completed completed their sessions impact of the rare important’ to have a counselling showed showed an improvement genetic condition counsellor who improvement in in their CSI-32 following counselling understood the their CORE-10 relationship satisfaction impact of the rare scores* scores ** genetic condition * CORE-10 (Clinical Outcomes in Routine Evaluation) is a measure widely used in counselling and psychotherapy to assess levels of psychological distress and emotional well-being. It provides an overall distress score, allowing changes to be tracked over the course of counselling. 60% of individuals accessing our counselling service finished their sessions within the Low or Healthy ranges, compared with only 13% beginning in these ranges. Those who started with the highest levels of distress experienced particularly strong gains: 100% of those starting in the Severe or Moderately Severe categories moved into lower distress categories by the end of their sessions. ** The Couples Satisfaction Index (CSI-32) is a validated questionnaire used to measure partners’ perceptions of relationship satisfaction. It is widely used in couples therapy to track changes in relationship wellbeing over time. Despite starting at different levels of relationship distress and with the size of improvement varying, 100% of couples completing counselling reported increased relationship satisfaction, with most experiencing moderate to large gains in their CSI-32 scores.

“When my eldest was diagnosed, it felt like the ground had disappeared beneath my feet and with my other children now being tested, the fear is constant. The Sandcastle Trust’s counselling gave me space to breathe again. It’s helped me cope with the grief, the guilt, and the weight of the unknown. What made such a difference was not having to wait months on a waiting list - I don’t know how I’d have coped if I’d had to. It’s not just talking, it’s been a lifeline.”

S, Mum of 3

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Sandcastle Connections Peer Support

“Thank you so much for putting us in touch with X. We have never met anyone else with my daughter's condition before which has been a lonely Registered Peer Connections and frightening experience. Me and X's Supporters Made mum are in regular contact via Whatsapp now - its been lifechanging really."

really." 777 81 oe. Ld °O. oe °° S S L Communications connecting us with families, supporters, and partners. A particular highlight for us this year was our short film featuring Ollie and Amelia, siblings who live with the rare genetic condition Batten disease, winning both a Bronze Judges’ Award and a Gold People’s Choice Award at the Charity Film Awards. This recognition reflects the power of lived experience storytelling in increasing public understanding of the emotional well-being challenges and barriers to support that families living with rare genetic conditions face. You can watch the film here .

Sandcastle Signposting and Support Hub oe. Ld °O. vistors 9,409 This was a significant increase, up from 1,800 in 2023/4 oe °° S S L

Communications

Communications are a key enabler of our work, helping us amplify lived experience to influence change and connecting us with families, supporters, and partners.

A particular highlight for us this year was our short film featuring Ollie and Amelia, siblings who live with the rare genetic condition Batten disease, winning both a Bronze Judges’ Award and a Gold People’s Choice Award at the Charity Film Awards. This recognition reflects the power of lived experience storytelling in increasing public

5,521 1,240 Followers Followers Our posts Our posts reached reached 13,800 37,382 accounts accounts 1,835 353 subscribers Views 30,413 emails Videos on our delivered with YouTube profile an average were viewed open rate of 353 times 35.6%

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Trustees Report Achievements and Performance Harry's Family Story

Harry Degiorgio’s first birthday should have been a fun filled day with family, cake, balloons and presents. But instead, Harry woke up on the morning of his birthday in a hospital bed after an hour-long seizure. Worse was to come a few weeks later when little Harry had ten seizures in 72 hours. The fear and unpredictability of these life-threatening seizures left parents Beth and Craig Degiorgio, from Solihull, West Midlands, feeling their family life was lived on a knife edge.

Beth, 34, explains. “Those three days of seizures were hell. Harry had been diagnosed with infantile epilepsy months before and started on medication, but we knew something really wasn’t right at all. When we left hospital, we saw at the bottom of the discharge letter ‘query Dravet Syndrome?’ We had never heard of it, and none of the doctors had mentioned it to us. We had to google what it was. Weeks later we all had genetic testing and just had to wait for the results.”

Birmingham Children’s Hospital. Then followed a bad Christmas and New Year with seizures.

It was when Harry was just four months old that he had what doctors said was a febrile convulsion, after a routine vaccination. At hospital, a consultant reassured the family, but also advised them if Harry did have another one, they should film it.

Harry had two more seizures over the next few months and Beth filmed those, which provided doctors with a clear record of the type of seizures. Tests and an MRI followed, and Harry was given medication to control infantile epilepsy, plus rescue medication.

“It was terrifying and traumatic, but we were of the belief that he would grow out it, and we’d deal with it,” Beth, who is also Mum to Tilly, now seven, recalls. “The summer of 2022 Harry had no seizures, but he wasn’t quite where he needed to be developmentally. His balance wasn’t great, and he would fall backwards to one side when sitting up. Then in the Autumn, Harry turned one and we were in and out of

“I describe the seizures as a monster that followed us around. We’d think ‘should we go to that place or event?’ Are we doing something that will be a trigger for seizures? You are constantly playing a worst-case scenario in your mind. Every seizure had been induced by a virus, but our daughter Tilly was in nursery and going on playdates, so that was hard. We wanted to make sure she had a normal childhood too. Tiredness was also a trigger for seizures and Harry didn’t sleep.”

The diagnosis came in January 2023 in a phone call to Beth’s office.

Beth recalls: “The consultant told me the genetic tests were positive for Dravet Syndrome. In that moment, standing outside my office, my world fell apart. It was in his DNA. I don’t remember the rest of the phone call. I walked back into the office and I broke down. Life had changed forever.”

Dravet Syndrome is a potentially life-limiting genetic condition, caused by a change in the SCN1A gene.

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offered no further sessions.

Harry’s alteration is ‘de novo’, meaning it was not

inherited. Symptoms include seizures and a range of comorbidities, including severe sleep disorder, which Harry also has. It affects one in 15,000 babies born in the UK. There is no cure, and the epileptic seizures are extremely hard to treat as the Degiorgio family discovered.

Beth explains: “The medications stopped working. We entered a Dravet world of many hospital appointments. We watched our child start to walk, learn a new skill and then lose it again after a seizure. One was so bad he had to be resuscitated. One in five children with Dravet won’t make it to adulthood. It is a life-changing, horrible condition.

Beth continues: “Harry spent his second birthday having a seizure and the paramedics came out. We’d got to a point where Harry was having up to four seizures a week and two hospital stays a month.

“It affects every aspect of our lives, both of us as parents were experiencing trauma but in different ways, I was mainly heading up Harry’s medical care and dealing with that which was demanding and stressful, however Craig was having to go to work, knowing he had to miss appointments and being in hospital with Harry, to ensure he was earning money to keep us afloat which takes its toll on him. On top of that we are both sleep deprived and having to watch our child suffer so much with the seizures and that takes a big toll on your relationship and at this point, I felt I wasn’t coping very well. I was anxiety ridden. It is a big step to accept you need help.”

Beth’s GP offered anti-depressants and when Beth refused them, she was contacted by a counsellor who she spoke with for around half an hour.

The counsellor then sent Beth links to YouTube videos on cognitive behaviour therapy techniques and

“We’d heard of The Sandcastle Trust because we’d been fortunate enough to have a ‘Sandcastle Santa Day’ gifted by them over Christmas 2023. It was a really great day out meeting Santa at Drayton Manor. Special days out are great and to know that day has been gifted to you is amazing. I saw in a newsletter the Trust was providing counselling and I applied.”

In the Summer of 2024, Beth started counselling sessions over Zoom. Through counselling she was given tools which help her cope with everyday challenges, anxieties and fears for the future. Beth says: “Before the counselling I felt grief, anger, trauma and resentment at the diagnosis and what it was doing to our children, and I know Craig felt guilty that he had to go to work. I felt pressure and didn’t know how we would cope. A genetic condition has an impact on the whole family, the parents, who are already sleep deprived and have to be ready to act in an emergency, and the siblings.

“Counselling helped me deal with those overwhelming feelings and emotions. It helped keep me going. We refer to it as a big purple monster that sits in the corner of the room but now we

acknowledge it is there and we just ask it to stay there so we can carry on. Sometimes it will come and wipe us out. Counselling doesn’t magic it better, but it gives you an understanding of how to find a way of living with it, how to focus on the things we can control and way to manage the things we can't. After six months of sessions, I still had all the trauma and responsibility, but I had coping mechanisms. “Now I can find the hope, see the small milestones and appreciate them and see how fortunate we are. I am so grateful to The Sandcastle Trust for the counselling sessions.”

Harry is now four years old and reached a huge milestone in starting nursery a few mornings a week, building up gradually before Reception class, where they hope he will have a one-to-one assistant. Beth admits she has days where, “the cloud is big and heavy” but with the skills she’s learnt during counselling she recognises negative feelings and works them through.

“We are now in a really good space,” says Beth. “We celebrate the wins. Harry has had 100 days without big seizures. He’s making friends at nursery, he loves any ball games, and he is so loving. He is incredible and he’s made us better parents and people.”

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“We are now in a really good space. We celebrate the wins. Harry has had 100 days without big seizures. He’s making friends at nursery, he loves any ball games, and he is so loving. He is incredible and he’s made us better parents and people.”

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Trustees Report Future Plans

Future Plans

Our plans for 2025/26 are shaped by a clear sense of ambition, alongside a realistic understanding of our financial position. As a small and growing charity, the majority of our income is currently restricted, meaning that growth in our activities is closely linked to securing grant funding. Increasing our unrestricted income will therefore be a key focus over the next five years, to enable greater flexibility, responsiveness and long-term sustainability. Encouragingly, we begin this year in a stronger position than the previous two years, following focused work to improve our organisational structure, income generation and financial monitoring. This provides a solid platform from which to start to deliver against the strategic goals of our new five-year strategy, while continuing to build resilience for the future.

2. SCALE: Our focus this year will be:

Our focus for Year 1 of the strategy for each of our strategic goals is as follows:

3. SPEAK UP: Our focus this year will be:

1. SUPPORT: Our focus this year will be:

4. STRENGTHENING: Our focus this year will be:

Subject to securing funding, we plan to pilot additional financial support linked to our respite breaks for low-income families, such as providing vouchers to help with food costs and activities. This responds directly to our consultation findings that financial pressures are often a barrier to

engaging in activities that support emotional wellbeing, such as a short break away. Our aim is to ensure that financial constraints do not prevent families from accessing, or fully benefiting from, our support, even when the break itself is free.

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Trustees Report Financial Review

Financial Review

Our strategy consultation this year reinforced what we have long understood through our direct work with families: those impacted by rare genetic conditions are significantly more likely to experience poor emotional wellbeing outcomes, and there are substantial gaps in the support available to them. We also know that many more families could benefit from The Sandcastle Trust’s support, meaning our services must continue to grow both in depth and reach. Our ability to respond to this level of need is directly linked to our capacity to fundraise, which presents a considerable challenge for a small charity with a limited profile operating in a difficult fundraising environment. Despite these pressures, the charity has maintained positive momentum during the year and has remained ahead of rising costs.

This has been largely due to continued growth in income from Trusts and Foundations, which has enabled us to sustain and develop our work. However, much of this income is restricted, and we recognise that building unrestricted income is essential to ensure the charity can remain responsive and sustainable in the long term. A key focus over the coming year will be exploring ways to develop new income streams, strengthening our financial resilience. We anticipate an increase in fundraising costs during 2025/26 as we take a more proactive approach to income generation in order to support the charity’s future growth.

EXPENDITURE

During the year, The Sandcastle Trust incurred total expenditure of £104,868, of which £81,898 was spent on charitable activities (2023/4: £89,187 total expenditure, including £68,827 on charitable activities).

CASH POSITION

As at 5 April 2025, The Sandcastle Trust had accumulated funds of £128,920 (2024- £74,310). £17,299 in unrestricted and £111,621 restricted.

RESERVES

The Trustees’ policy is to aim to hold free reserves equal to a minimum of approximately three months running costs less secured income. Our current reserves are in line with our policy.

Looking ahead, over the course of our five year strategy it is our goal to build our reserves to the approximate equivalent of six months running costs, to ensure long-term sustainability of our services.

INCOME

The total income for the year was £159,478 (2023/4: £92,999). Donations came from a mix of companies, individual supporters, and trusts and foundations. The breakdown is as follows:

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Thank you!

The Sandcastle Trust's work would not be possible without the communities we work alongside, and the trusts, foundations, businesses, accessible holiday partners and supporters who make our work possible. Your belief in our mission enables us to deliver transformational outcomes for families impacted by rare genetic conditions, and for that, we are truly grateful.

Trusts and Foundations Paul Bassham Charitable Trust W E Dunn Charitable Trust Cheshire Community Foundation Sussex Community Foundation Bruce Wake Trust Sir John Priestman Trust Arnold Clark Community Fund Stockwell Cliffe Charitable Trust Masonic Charitable Foundation The Archer Trust Bernard Sunley The Archer Trust The Belvedere Trust The Postcode Lottery Garfield Weston Margaret Davies Charitable Trust Ian Askew Charitable Trust Matthew Wrightson Trust Awards for All - Scotland Awards for All - Wales Awards for All - England The Chalk Cliff Trust Jeans for Genes The Eveson Trust The Toy Trust And those that prefer to remain anonymous.

Companies and Accessible Holiday Donors

Stanley Gibbons Baldwins Limited Hfan y Mynydd Accessible Shepherd's Hut disabledholidays.com Crescent Hideaway, Somerset Harrods Cornish Cottages, Cornwall Cowries, St Merryn, Padstow Holistic Thinking Holidays Southwaite Green Holiday Cottages, The Lake District Cossington Park, Somerset

Heartfelt thanks to...

all our regular givers, individual donors, fundraisers, schools and community groups who have helped us raise vital funds throughout the year. And last but by no means least, to all the wonderful families in the rare genetic condition community who inspire us every day.

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Trustees Report

Statement of Trustees Responsibilities

Statement of Trustees Responsibilities

The trustees are responsible for preparing the Trustees’ Annual Report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

The law applicable to charities in England and Wales 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 income and expenditure of the charity for that period. 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;

The trustees are responsible for keeping proper 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 Charities Act 2011, the Charity (Accounts and Reports) Regulations 2008 and the provisions of the trust deed. 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 in accordance with legislation in the United Kingdom, governing the preparation and dissemination of financial statements. Approved by the Trustees on 18 December 2025 and signed on their behalf by: ............................................ . Samantha Crouch Chair of Trustees

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Trustees Report Statement of Trustees Responsibilities Independent Examiner's Report to the Trustees NU” / I report to the trustees on my examination of the accounts of the Sandcastle Trust for the year ended 5 April 2025.

Responsibilities and basis of the report

As the charity trustees of the Trust, you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 (‘the Act’).

I report in respect of my examination of the Trust’s accounts as required under section 145 of the 2011 Act and in carrying out my examination I have followed all the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act.

Independent examiner’s statement

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

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

reached.

Dated 23 December 2025

Yoa-fd CatuwT ............................................ David Wheeler F.C.C.A– Independent Examiner Cheeld Wheeler & Co,

Chartered Certified Accountants

Redhill Chambers,

2d High Street, Redhill, Surrey, RH1 1RJ.

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Statement of Financial Activities

For The Year Ended 5 April 2025

NOTES 2025 2024
Unrestricted Restricted Total Total
INCOME £ £ £ £
Grants and donations 3 26,653 130,738 157,391 89,264
Other trading activities 4 1,961 - 1,961 3,609
Interest income 126 - 126 126
TOTAL INCOME 28,740 130,738 159,478 92,999
NOTES 2025 2024
Unrestricted Restricted Total Total
EXPENDITURE £ £ £ £
Costs of raising funds 5 9,688 945 10,633 7,973
Charitable activities 0 81,898 81,898 68,827
Support costs 6 6,204 6,133 12,337 12,387
TOTAL EXPENDITURE 15,892 88,976 104,868 89,187
NET INCOME FOR THE YEAR 12,848 41,762 54,610 3,812
TRANSFERS BETWEEN FUNDS 550 -550 - -
NET MOVEMENTS IN FUNDS 13,398 41,212 54,610 3,812
RECONCILIATION OF FUNDS
Total funds brought forward 3,901 70,409 74,310 70,498
Total funds carried forward 6 17,299 111,621 128,920 74,310

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Balance Sheet As At 5 April 2025

NOTES 2025 2024
FIXED ASSETS £ £ £ £
Tangible assets 92,997 38,452
CURRENT ASSETS
Debtors 7,427 776
Bank account 30,296 36,882
TOTAL CURRENT ASSETS 37,723 37,658
Creditors - amounts falling due within one year 1,800 1,800
NET ASSETS 128,920 74,310
The funds of the charity: 7
Unrestricted 17,299 3,901
Restricted 111,621 70,409
TOTAL CHARITY FUNDS 128,920 74,310

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Notes to the Accounts

For The Year Ended 5 April 2025

The charity is registered as a charitable incorporated organisation in England and Wales and its registered office is shown on page 1.

ACCOUNTING POLICIES 1.1 Basis of Accounting The statement of accounts has been prepared under the historical cost convention and is in accordance with applicable accounting standards and the Statement of Recommended Practice, Accounting by Charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) and the Charities Act 2011. The charity constitutes a public benefit entity as defined by FRS102.

1.2 Income

Income is accounted for when received by the Trust.

1.3 Grants

Grant income is recognised when there is: a) entitlement to the grant, b) virtual certainty that it will be received and c) sufficient measurability of the amount. Unspent grants are shown on the balance sheet as restricted funds.

1.4 Gifts in Kind

The Charity receives the benefit of work carried out by volunteers and holidays donated by accessible holiday providers.

1.5 Taxation

As a registered Charity the Trust is exempt from Income Tax and Capital Gains Tax. 1.6 Tangible fixed assets

Depreciation is provided at the following annual rate in order to write off each asset over its estimated useful life: Office equipment - 25% on cost. Motor vehicles – 20% on cost 2 Transactions with Trustees and Other Connected Persons No remuneration is paid to the Trustees and no expenses were reimbursed to trustees in this reporting period,

3. Income from donations and grants

2025 2025 2024
Unrestricted Restricted Total Total
£ £ £ £
Donations 11,453 - 11,453 14,464
Grants 15,200 130,738 145,938 74,800
TOTAL 26,653 130,738 157,391 89,294
4. Income from other trading activities
2025 2024
Unrestricted Restricted Total Total
£ £ £ £
Fundraising and 1,961 - 1,961 3,609
organised challenges
5. Expenditure on raising funds
2025 2024
Unrestricted
£		 Restricted
£		 Total
£		 Total
£
Fundraising Materials
Advertising and		 6,965
2,723		 -
945		 6,965
3,668		 6,289
1,684
marketing
TOTAL 9,688 945 10,633 7,973
6. Support costs -
2025 2024
Unrestricted Restricted Total Total
£ £ £ £
Depreciation 169 - 169 169
Insurance 255 - 255 346
Bank charges 85 - 85 86
Postage and stationary 444 - 444 365
Storage costs 728 - 728 874
IT and software
Staff costs		 1,133
638		 -
-		 1,133
638		 924
352
Telephone and internet 583 - 583 634
Consultations 0 5,773 5,773 6,600
Subscriptions 99 - 99 41
Independent examiner 1,800 630 2,430 1,996
TOTAL 5,934 6,403 12,337 12,387

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Notes to the Accounts For The Year Ended 5 April 2025

7. Reserves

Unrestricted
General Fund
Restricted
TOTAL
As at 6 April
2025
Income
Expenses
£
£
£
£
Transfers
As at 6 April
2025
£
3,901
70,409
74,310
28,740
130,738
159,478
-15,892
-88,976
-104,868
550
-550
0
17,299
111,621
128,920
Fixed assets
Debtors
Cash at bank
Creditors
2025
TOTAL
Unrestricted
Restricted
Total
87,859
6,686
16,930
111,475
5,138
741
13,366
-1,800
17,445
92,997
7,427
30,296
-1,800
128,920
£
£
£
8. Analysis of funds

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