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2022-06-30-accounts

Alex’s Wish

Company Limited by Guarantee Trustees report and unaudited financial statements Registered company number 08116159 Registered charity number 1148845

30 June 2022

Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022

Contents

Legal and Administration Information 1
Trustees Report 2-17
Independent Examiner’s Report 18
Statement of Financial Activities 19
Balance Sheet 20
Notes to the Financial Statements 21-23
Detailed Statement of Financial Activities 24

Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022

Legal and administration information

Trustees & directors Mr AR Hallam Mrs EJ Hallam Mr CR Everard Mrs J Edwards Ms G Wright Ms S Barnett Ms AL Slack Mr S Jesrani Mr TW Carter Company No 08116159 Charity No 1148845 Website: www.alexswish.org Registered office The Old Vicarage High Street Syston Leicestershire LE7 1GP Independent Examiner HSP Tax & Accounts Ltd Whiteacres Cambridge Road Whetstone Leicestershire LE8 6ZG Bankers National Westminster Bank plc

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Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022

Trustees’ report

The Trustees present their report and unaudited financial statements for the year ended 30 June 2022.

The Trustees, who are also Directors of the charitable company for the purposes of the Companies Act, and who served during the year and up to the date of signature of the financial statements were:

The Trustees confirm that the annual report and financial statements of the charitable company comply with the current statutory requirements and the provisions of the Statement of Recommended Practice (SORP) Accounting and Reporting by Charities.

Registered Office: The Old Vicarage, High Street, Syston, Leicestershire, LE7 1GP

Website: www.alexswish.org

Registered Charity No: 1148845

Scientific Advisory Board. We work closely with Duchenne UK as their Charity Partner and as such most projects that we fund are co-funded alongside them. All projects put forward to us for potential funding go through their rigorous Scientific Advisory Board, which is made up of some of the world’s leading experts in Duchenne Muscular Dystrophy. It includes the different skills of doctors, scientists, and drug developers so that each project is asked the right questions: Is this good science? Can this be taken into clinic? What hurdles exist? Is this replicated anywhere else? Duchenne UK’s advisory board consists of:

Professional Service Providers

Independent Examiner: Tessa Fowler BA FCA HSP Tax & Accounts Ltd Whiteacres, Cambridge Road Whetstone Leicester LE8 6ZG

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ALE)fs WISH Alex's Wish Company limited by Guarantee Trustees report and unaudited financial statements 30June 2022 cure Duchenne

Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022

Bankers

National Westminster Bank plc 5 The Parade, Oadby, Leicester LE2 5NT

Alex’s Wish would like to thank its Trustees, employees, service providers, and supporters for kindly giving their time and expertise to grow the charity.

Statement from the CEO and Charity Founder, Emma Hallam

In September 2022, Alex’s Wish celebrated it’s 10-year milestone – something we are incredibly proud of. We launched Alex’s Wish in late 2012 after our son, Alex, was diagnosed with Duchenne Muscular Dystrophy. When the diagnosis was confirmed, we were absolutely devastated as doctors told us there was NO CURE and NO TREATMENTS available other than steroids which cause serious side-effects and, at best, would help delay the onset of his condition by two years at most.

Duchenne is a life-changer. It affects every single day of your life as you must be prepared for ever-changing challenges that affect your child’s day to day activities. Duchenne is a progressive, muscle wasting disease. It is relentless affecting every single muscle in the body. One day your child may not be able to walk, may not be able to lift a cup to their mouth, may not be able to access their friends’ houses anymore. We felt overwhelmed and terrified of what the future held for our son, living in fear of the next stage of progression and wondered how we would cope.

At the time of diagnosis, we quickly realised we have no time to waste. We investigated the latest scientific research and understood that without ongoing funding this work would not continue. We set-up Alex’s Wish, a charity based in the heart of Leicestershire, as we knew we would attract interest and support from the community across the East Midlands and beyond bringing in additional funds to what was already being raised. We do not duplicate efforts of other charities working in this field instead our focus is to drive additional funds allowing us to co-fund scientific projects with other charities like Duchenne UK.

The science is at a very exciting time; a time of hope of new treatments being just around the corner. We were told that Gene Therapy wouldn’t happen in our son’s lifetime. However, we’ve seen the first Duchenne patient being dosed in a Gene Therapy trial in the UK.

The research we have funded is bearing fruit with Santhera Pharmaceuticals’ Vamorolone - a new steroid alternative without the nasty side effects of traditional steriods - has applied for marketing authorisation (approval for use in the UK). This will help every single patient living with Duchenne and something we are incredibly proud of.

We’ve seen the development of new prototype technologies; The Smart Suit and The DREAM Wheelchair starting to emerge and showing great promise.

A clinical trial which Alex Hallam has been on for the past 4 years, called Givinostat run by Italfarmaco announced in the Summer of 2022, that the drug is working to help slow down disease progression. This is great news for the Duchenne community as a whole and brings with it so much hope for the future. For more details, visit https://alexswish.co.uk/italfarmaco-announces-positive-topline-data-from-phase-3-trialshowing-positive-benefts-of-givinostat-in-duchenne/

With all this progress, we cannot help but feel incredibly hopeful that more effective treatments are just around the corner to help everyone living with Duchenne. The hard work is paying off, but we must continue our journey to find new discoveries to slow down and ultimately stop muscle wasting.

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Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022

We are delighted with our progress to date and excited about the times ahead. We are incredibly grateful to our wonderful supporters who have come on this journey with us so far. We would like to say a very special thank you to the following people and organisations.

In this financial year, we have invested £117,000 in four projects (2020/21 £62,142 in three projects):

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Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022 gene therapies. Some people have antibodies to the gene therapy viral vector, the vessel in which the genetic material is delivered to muscles, so they don’t qualify for this treatment. In addition, even those patients without antibodies will develop them after receiving gene therapy, so they won’t be able to have the treatment more than once. We are however, now seeing novel, promising approaches, leading the way for cell-based therapies and new gene therapies that use non-viral vectors. This vital research will help to accelerate its progress so that one day everyone with Duchenne can have gene therapy treatments safely and effectively. The grant call was launched in October 2022, and the expression of interest stage closed on 6[th] December 2022. The next stage is to identify which projects to progress to the full application stage.

Our revised target for our next financial year, is to raise £300,000 (1[st] July 2022 - 30[th] June 2023) and, at the time of writing this report, we stand in good stead to achieving this as £200,000 has already been raised.

Of this, £65K has already been invested in The DREAM Wheelchair. For our children, a wheelchair makes all the difference to their independence. But the design and functionality of wheelchairs has changed little in 15 years, even when the design conscious and technology driven world has transformed so much else. In 2017, in partnership with Whizz-Kidz, Duchenne UK won a £1M grant to develop a new wheelchair. The project was designed to bring wheelchairs into the 21st century. Getting up a kerb, seeing what is behind you, even having somewhere to put your phone - things the rest of us barely notice in our lives are major tasks for young wheelchair users. Three years on, with a prototype built, we are working on how we can bring this chair to market, at an affordable rate.

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Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022

As at writing this report, March 2023, we can report that we have £80,000 funds held to support exciting projects to further our mission. These include the continuation of The Smart Suit, The DREAM Wheelchair, an at-home physiotherapy app and a weight management programme.

We are incredibly positive about the future and Alex’s Wish gives us hope. Duchenne Muscular Dystrophy is part of our lives, not out of choice, but we will make it as best as we can, and we will never stop our journey to conquering Duchenne. We could not have done our work without the support of our army of supporters, the charitable foundations who have supported us, the local business community, business sponsors, our fundraising team, ambassadors and our dedicated trustees and we would like to express our gratitude and thanks to every single one of them.

Emma Hallam Charity Founder

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Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022

About Duchenne Muscular Dystrophy

Duchenne Muscular Dystrophy is a devastating life-shortening genetic disease that affects 1 in every 3,500 boys born (it also affects girls who account for 1% of all those diagnosed). It is caused by a mutation in the gene that encodes for dystrophin, a protein that is essential to the proper functioning of our muscles. Without dystrophin, muscles are not able to function or repair themselves properly. The loss of muscle then results in a loss of strength and function.

Duchenne can be passed from parent to child, or it can be the result of random spontaneous genetic mutations, which may occur during any pregnancy. In fact, about one out of every three cases occurs in families with no previous history of Duchenne. In other words, it can affect anyone, and crosses all races and cultures. The average age of a Duchenne diagnosis is around 4 years old. Many times, there will be delays in early developmental milestones such as sitting, walking, and/or talking. Speech delay and/or the inability to keep up with peers will often be the first signs of the disorder.

Duchenne progresses differently for every person. Even siblings with the same mutation may have a very different progression of symptoms. Muscle loss is first noticed in childhood, with loss of strength, function, and flexibility in the hips, thighs, shoulders, and pelvis. In teens these losses begin progressing to the arms, lower legs, and trunk. Because there is also an absence of dystrophin in the muscles of the heart and lungs, heart function and breathing are also affected. In addition, some people can have issues with learning and behaviour resulting from a lack of dystrophin in the brain.

The progression of symptoms through Duchenne are on a spectrum from late onset/very mild symptoms to early onset/severe symptoms. Regular visits with a neuromuscular team help to monitor the progression of disease and how it can best be treated along the way. With improved care more people with Duchenne are living into their 30s and beyond. With clinical care continuing to improve, as well as clinical trials, research, and therapies on the horizon, we are hoping to enhance the quality of life and extend the lives of those affected.

A carrier of Duchenne is a woman who has a mutation in one of her two copies of the dystrophin gene. Carriers have an increased chance of having sons with Duchenne and daughters who are carriers. Female carriers are usually not affected with Duchenne because they make enough of the dystrophin protein. However, they can have some symptoms of Duchenne such as muscle weakness and heart problems. Though it is rare, some females can have the classic symptoms of Duchenne.

Duchenne in numbers

What we are doing about it

We are committed to continuing to drive momentum to deliver treatments to help THIS generation of those with Duchenne. We have invested £844K in scientific research, clinical trials, funded clinical posts ensuring patients living in the UK can access trials, as well as new technological advances. We have an innovative approach to funding. Not only do we fund basic research, but we fund clinical trials and the doctors and nurses in the UK to deliver those trials.

Our Vision

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Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022 Our Vision is a world without Duchenne Muscular Dystrophy. We want a future that stops the devastating

impact Duchenne has on our children and young adults, a future where they can grow and prosper and fulfil their dreams. A life where they can enjoy every day without the fear of the progression this muscle wasting disease has on their bodies. A future without Duchenne would be a bright and happy future for all those affected. We need to act quickly to save this generation. Doing nothing is not an option. Our boys and their families need to live without fear and have hope for the future.

Our Mission

Alex’s Wish was set-up by a family affected by Duchenne, who understand first-hand the impact this condition has on their child and the family. As a family we are taking part in clinical trials ourselves as we understand the importance of clinical trials and how they will help being effective treatments to market. We have one clear mission; to conquer Duchenne soon. We are doing this by funding medical research that’s focussed on getting treatments to those affected now as well as pushing for effective treatments in the future. Our ultimate focus is to extend/improve the lives of those living with Duchenne, to halt or reverse the effects of muscle wasting.

Charities like ours fund half of all medical research in the UK – to the tune of £1.7 billion. Today, 1 in 4 people choose to support medical research charities like ours, and for this we are so incredibly grateful.

Our Progress

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Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022

Our Charitable Objectives

  1. The principal objects of the charitable company are the relief of sickness and the preservation of good health by supporting scientific research into the improved diagnosis, prevention, or treatment of Duchenne Muscular Dystrophy. This is to be achieved by:

  2. a) Extending the current scope of drugs / treatments so that they will help all children with Duchenne Muscular Dystrophy.

  3. b) Fund first stage clinical trials that provide the safety and efficacy of some of these treatments and then progress this into larger scale production.

  4. c) Fund the completion of scientific work already begun, to bring it to clinical trials, and fund other forms of treatment that will work on all children regardless of their genetic mutation.

  5. d) Fund studies that will help bring about data and information to help decision makers make decisions on which treatments to bring to market.

  6. e) Fund The Newcastle Plan – there is an increasing community wide focus on clinical trial capacity in the UK and Treat-NMD has co-ordinated and organised a national meeting in Newcastle concerning the apparent lack of capacity for trials in Duchenne. This brought together 75 stakeholders representing patient organisations, clinical experts, the pharmaceutical industry, as well as the National Institute for Health Research (NIHR), to develop a strategy to improve capacity and better utilise existing resources. All stakeholders contributed to shaping ‘The Newcastle Plan’ and concluded that the UK must maintain its place as one of the ‘go to’ countries for clinical trials in Duchenne, posting a five-year objective to ensure that all potential children and adults with Duchenne, have access to clinical trial research opportunities.

  7. Advance the education of the general public, in all areas relating to Duchenne Muscular Dystrophy by disseminating information on the disease and its treatments and cures. To:

  8. a) Disseminate information using online and offline materials, including the charity’s website www.alexswish.co.uk and our World’s Strongest Boys video https://youtu.be/0uxxh3xk0_g

  9. b) Running events and fundraising activities and promoting our work on social media:

    • Facebook https://www.facebook.com/alexswishcharity1 Twitter https://twitter.com/alexswish You Tube https://www.youtube.com/channel/UCU-

    • RRlMhQmkhBhNyIsS6hZA

      • Linked In https://www.linkedin.com/company/9202750/admin/ Instagram https://www.instagram.com/alexs_wish/

  10. c) We have built great relationships with the local media outlets in our region including ITV Central and BBC East Midlands and regularly generate news articles and updates in local newspapers, including The Leicester Mercury and The Loughborough Echo and local magazines posted through doors. We also appear regularly on the local radio stations including BBC Radio Leicester to raise awareness about Duchenne and the impact this has on families living with it.

  11. d) Talking and presenting at various events on Corporate Social Responsibility, the impact of living with Duchenne Muscular Dystrophy, About Alex’s Wish and Resilience – it is important our personal story is shared amongst others.

  12. e) Participate in alliances and liaise with the Government to inform policy makers and other stakeholders about the work of the charity, the nature of the disease and potential treatments and cures.

Our Grant Making Policy and Collaboration

The Charity has established its grant making policy to achieve its objectives for the public benefit to find a cure

for Duchenne Muscular Dystrophy and to slow down the rate of progression by maintaining muscle strength

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Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022 for longer leading to increase life expectancy as well as a better quality of life.

We only want to fund great science – projects that can improve the knowledge base and bring treatments that can reach the clinic and improve the lives of boys with Duchenne Muscular Dystrophy in many ways. We want to fund new technologies that will go on to help those affected by Duchenne, by making the world accessible to them.

We formed a partnership with Duchenne UK. Duchenne UK share the same mission and objectives as Alex’s Wish and are also a parent-led charity. As a Charity Partner to Duchenne UK, we receive projects that require co-funding. All such projects have been reviewed extensively by their Scientific Advisory Board which is made up of some of the world’s leading experts in Duchenne Muscular Dystrophy. They bring with them a wide range of essential skills and knowledge basis including scientific, clinical and drug discovery and development. When scientists approach Duchenne UK with their ideas for new research projects it is the SAB who apply their experience and expertise to test these ideas, helping to refine them, if necessary, in order that Duchenne UK can make informed decisions on funding. Alex’s Wish Trustees review all projects put forward before deciding upon specific projects to fund.

We also work with Solid Biosciences to help progress their Gene Therapy programme and this work is now progressing into clinical trials and is showing great promise.

We have worked with Muscular Dystrophy UK to co-fund research and clinical trials. Alex’s Wish is part of the Duchenne Forum, a partnership between six UK Duchenne-led charities to help accelerate progress in the search for effective treatments and eventually cures. The partnership is supporting seven pioneering Duchenne research projects committing to £840,000 over a four-year period.

We have worked with Action Duchenne and co-fund projects as such as the Repurposing Cancer Therapeutic drug called Dasatinib – a drug commonly used to treat leukaemia.

We regularly send updates on project performance and outcomes to our supporters through an e-newsletter as well as publish updates on our social media channels, news articles on our websites and submit press releases to the local media companies. We have appeared on BBC East Midlands Today and ITV Central.

Financial Review

Income from donations and fund-raising activities for the year amounted to £223,012 ( 2021: £129,778 ). Bank interest received in the year amounted to £59 (2022: £10).

Expenditure incurred is as shown on the detailed statement of financial activities and included: expenditure on fund-raising activities which amounted to £41,305 (2021: £7,666) .

Overheads include payments for administrative services and the management of events and fundraising activities of £51,761 (23% of total income) (2021: £45,386; 35% of total income) and other costs relating to promotional materials, Trustee expenses, insurance, bank charges, marketing, bookkeeping, and networking events of £13,901 ( 2021: £7,451) .

Payments towards research and clinical trials amounted to £117,000 (2021- £62,142) see breakdown below. Overall, there were net incoming resources for the year of £1,913 ( 2021: £31,503) .

Our Impact

The Trustees are delighted that they have been able to make payments during this accountancy period to four projects equating to £117,000 in line with its objectives. We provide project updates and when they become available on our website. Please visit www.alexswish.co.uk for more details.

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Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022

Our Major Achievements

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Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022

who carry a mutated Duchenne gene (carriers) can sometimes show mild symptoms of the diseases. Duchenne carriers are at risk of developing cardiomyopathy, which affects the ability of the heart to pump blood around the body. Currently Duchenne female carriers are advised to have their hearts checked every 3-5 years by taking scans such as ECG, echocardiogram, or MRI. However, quicker, and more cost-effective ways to detect heart problems would prevent late diagnosis and enable earlier treatment. De Borthwick and Bourke examined the heart tissue of patients and used this to identify molecules in the blood that could act as biomarkers (indicators of damage to the heart). This study has now come to a close, and the preliminary data shows these biomarkers have the potential to detect early cardiomyopathy in a way that is fact, reliable and cost-effective. The biomarkers need to be tested in cohorts of female carriers, as well as make Duchenne patients, to be fully validates. However, this pilot project has laid vital foundations for future research to improve the speed of diagnosis and treatment of cardiomyopathies.

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Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022 Harrison’s Fund and Joining Jack to invest a total of £250,000. The Clinical Trials Lectureship grant enabled Dr Michela Guglieri to act as the Clinical Research Team Leader within the John Walton Muscular Dystrophy Research Centre in Newcastle; a key role in one of the UK’s biggest Duchenne research centres, that ensures trials are run smoothly and safely, and generate good quality data. The project has supported the establishment of a strong clinical research team at the John Walton Muscular Dystrophy Research Centre and of national and international collaborations and networks which will play a key role in ensuring the clinical research in Duchenne Muscular Dystrophy will continue to come to the UK and to establish the UK as an expert and efficient country to deliver best care practice and clinical research. Since May 2017, as well as training and supporting the staff in the clinical research centre, over the course of the grant, Dr Guglieri has led 10 clinical trials in Duchenne, including The FOR DMD Study and The Vision DMD Trial, testing the safety and effectiveness of Vamorolone – a potential drug that researchers hope could offer some of the effects of steroids with fewer side effects. The support from the 7 different charities has not only resulted in significant impact during the years of funding, but also a permanent position for Michela through Newcastle University. In this role, she will continue to work as Clinical Research Lead, supporting clinical research activities as well as national and international collaborations to improve care, treatment and research opportunities for people living with Duchenne muscular dystrophy. https://alexswish.co.uk/support-from-alexs-wish-helps-fund-duchenne-musculardystrophy-dmd-clinical-trials-lectureship/

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Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022

cells. Several companies are now testing gene therapy in Duchenne, by using viruses to deliver the micro-dystrophin. However, many people with Duchenne may have pre-existing antibodies to the viruses being used to deliver gene therapy, which makes them ineligible for this treatment. Similarly, patients receiving viral gene therapy would develop immunity making repeated dosing, if required, impossible. We collaborated with EVOX – to look at ways of making gene therapy available to all patients. During this collaboration, EVOX has been able to load mini- and micro-dystrophin mRNA into exosomes (for technical reasons fulllength dystrophin was not available for testing). EVOX has decided to carry out further optimisation of its mRNA loading approach work itself (and at its own cost) before then directing it towards the treatment of a variety of muscular skeletal diseases, including potentially Duchenne. Consequently, this work has been completed early.

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Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022

physiotherapists, from clinical research fellows to trial coordinators. The project team also developed the Clinical Trial Finder to help patients access information on DMD clinical trials in the UK. The tool includes information on each trial taking place, including selection criteria, age range, a lay summary and details of the sites that are recruiting. It was cited as an excellent example of digital infrastructure in a recent report by the Association of Medical Research Charities. Thanks to the DMD Hub, to date, more than 300 boys have been recruited to clinical trials who otherwise may not have been. Additionally, 11 UK hospitals are conducting 10 trials into potential treatments for DMD. Emma Heslop is the DMD Hub Manager and is key to the success of this project. Working closely with the Duchenne UK team, she ensures patients are appropriately represented as key stakeholders in all aspects of the DMD Hub. As part of the team at the JWMDRC in Newcastle, she has direct access to clinicians and industry partners through the relationships she has cultivated over the years. As the main point of contact for all companies with trials coming to the UK, she also promotes the UK as an attractive place to run DMD trials and works with them to support site selection, set up and patient recruitment. Her role also involves coordinating the staff networks for clinical trial coordinators, nurses, and lead clinicians, which include staff from across all eleven DMD Hub sites. These networks promote communication between the different sites so that they can share best practice and expertise. They also highlight any training needs, which the DMD Hub can then help to deliver. Her workplan for the next 4 years includes several exciting projects, which will have a significant impact for the DMD community: 1. Developing an operating procedure, adopted by all UK DMD Hub sites, to centrally coordinate patient recruitment to DMD trials 2. Conducting a Patient Preference survey, in collaboration with PPMD, to better understand patients and care givers perceptions of the benefits and risks of taking part in gene therapy trials 3. Conducting an Institutional Readiness survey to assess which hospitals in the UK can run gene therapy trials, and then to deliver a gene therapy licenced

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Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022

product. The survey will also identify barriers to hospitals hosting trials, which the DMD Hub will work to address. 4. Facilitating the implementation of the DMD Care UK Project across all DMD Hub sites 5. Engaging with key initiatives in the UK facilitating gene therapy such as the Cell and Gene Therapy CATAPULT and the NA-ATTC (Northern Alliance for Advanced Therapies Treatment Centre) 6. Working with the MHRA (Medicines and Healthcare products Regulatory Agency) to ensure that post-Brexit, the UK remains an attractive site for trials.

Strategic Approach and Future Plans

Our strategy is to attract as much funding as possible, through the following core activities:

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Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022

In the coming year we plan to:

Objective 1: To identify, fund and monitor medical research projects, clinical trials, clinical trial capacity opportunities and new technological advances.

Objective 2: To continue lobbying government and other regulators and to engage with media and our supporters to raise awareness of Duchenne Muscular Dystrophy

Objective 3: Fundraise through our flagship events, supporter events and fundraising activities:

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Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022

Structure, Government and Management

The organisation is a charitable company limited by guarantee, incorporated on 22 June 2012. The company was established under a Memorandum of Association which established the objects and powers of the charitable company and is governed under its Articles of Association. In the event of the company being wound up members are required to contribute an amount not exceeding £10.

The body responsible for management of the Charity is the Board of Trustees of Alex’s Wish. The Board meets monthly (and at least ten times per year). The charity’s constitution is set out in the Articles of Association, and all Trustees have agreed to this. New Trustees are appointed by the existing Board of Trustees. Trustees give of their time freely and no Trustee remuneration was paid in this year. Details of Trustee expenses and related party transactions are disclosed in the accounts. Trustees are required to disclose all relevant interests and to withdraw from decisions where a conflict of interest arises. None of the Trustees have any interests with the pharmaceutical industry.

We regularly review our stated aims, objectives, and activities to ensure we are working toward our stated purposes. We have referred to the guidance contained in the Charity Commission’s general guidance on public benefit under the Charities Act 2011 when setting and reviewing our aims and objectives and in planning our future activities. All our charitable activities focus on improving the lives of those with Duchenne Muscular Dystrophy and research into the disease.

Trustee Recruitment

Trustees will be recruited through advertising in local newspapers, and through social media, at our events and through word of mouth. Those expressing an interest will, in the

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Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022 first instance, be met by the Charity Founder, given an overview of the organisation, and encouraged to apply. The Chair and another trustee will examine the applications against the most recent skills audit, produce a short list, and invite those on it to submit their references and then attend an interview; the Chair and another trustee will conduct the interviews, and make recommendations to the Board. At its next meeting, the Board will review these recommendations, and either ratify or reject. Successful applicants will be asked to complete and sign the declaration of interest form, sign a declaration that they are eligible to serve as a trustee; and agree to the code of conduct. They will then become a trustee of the Board.

Risk Management

The Trustees continue to review the major strategic, business, and operational risks which the charity faces and confirm that systems are in place to enable regular reports to be produced so that the necessary steps can be taken to lessen these risks. In assessing risk, the Trustees recognise that some areas of the work require the acceptance and management of risk if the charity is to achieve its objectives.

Basis of Preparation of Accounts

The accounts have been prepared in accordance with the accounting policies set out in note 1 of the accounts and comply with the charity’s governing document, 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) (as amended for accounting periods commencing from 1 January 2016).

Financial Reserves Policy

The Charities SORP requires a charity to state the amount and type of financial reserves it holds, and to compare how the level of those reserves matches up to “The level of reserves the trustees feel as appropriate given their plans for the future activities of the charity". Where it falls short, the trustees need to explain what steps they are taking to rectify the situation. In this context, the charity views financial reserves as those held in its unrestricted funds, the balance of funds stood at £142,076 at the year-end (2021 £140,163). The Trustees establish the appropriate level of unrestricted reserves (over and above those already ring-fenced for plans or known liabilities within restricted and designated Funds) by seeking to ensure that the level of the charity's 'free reserves' meets a chosen benchmark related to the budgeted expenditure for unrestricted activities. The Trustees consider the “free reserves” to be the unrestricted funds not committed or invested in tangible assets. As a result of a full and objective review of its 'free reserves' policy, considering all the risks foreseeable at that point and the charity's approach to their mitigation, the Trustees agreed on 9[th] February 2023 that £30,000 should be maintained as 'free reserves'. This level has continued to be reviewed for adequacy and robustness to ensure the Charity maintains adequate finances to meet day-to-day operating costs, and we will continue to review this over the coming months. As of 30 June 2022, the Charity’s "free reserves" stood at £142,076 (2021: £140,163), resulting in a surplus of £112,076 (2021: surplus of £120,163) when compared with the current benchmark, calculated as £30,000.

Statement of Trustees’ Responsibilities

The Trustees (who are also Directors of Alex’s Wish for the purposes of company law) are responsible for preparing the Trustees’ report and the accounts in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

Company law requires the Trustees to prepare accounts for each financial year which give a true and fair view of the state of affairs of the charitable company and of the incoming resources and application of resources, including the income and expenditure of the charitable company for that period. In preparing these accounts, the trustees are required to:

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Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022

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

This report was approved by the Trustees on 23[rd] March 2023 and signed on their behalf by

Mrs EJ Hallam

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Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022

Independent Examiner’s Report to the Trustees of the Alex’s Wish

I report to the charity Trustees on my examination of the accounts of Alex’s Wish for the year ending 30 June 2022, which are set out on pages 19 to 23.

Responsibilities and basis of report

As the Trustees of the charity (and also its directors for the purposes of company law) you are responsible for the preparation of the accounts in accordance with the requirements of the Companies Act 2006 (‘the 2006 Act’).

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

Independent examiner’s statement

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

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

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

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

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

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

23[rd] March 2023

TD Fowler BA FCA Chartered Accountant for HSP Tax & Accounts Ltd Whiteacres Cambridge Road Whetstone Leicestershire LE8 6ZG

22

Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022

Statement of Financial Activities

For the year ended 30 June 2022

Not
e
Income from:
Donations
Fund-raising activities
Bank interest received
Grants received

Total income
Expenditure on:
Charitable activities
2
Net income for the
year/net movements in
funds
Fund balances at 1 July
2021
Fund balances at 30 June
2022		 Unrestrict
ed funds
2022
£
16,843
206,169
59
2,
809
225,880
(223,967)
1,913
140,163
142,076		 Total
2021
£
28,979
100,799
10
24,360
154,148		 Total
2021
£
28,979
100,799
10
24,360
154,148
(122,645
)
31,503
108,660
140,163
140,163

The statement of financial activities includes all gains and losses recognised in the year.

All income and expenditure derive from continuing activities.

The statement of financial activities also complies with the requirements for an income and expenditure account under the Companies Act 2006.

23

Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022

Balance sheet At 30 June 2022

Notes
Current assets
Debtors
3
Cash at bank and in hand
Creditors:
Amounts falling due within one year
4
Net current assets
Total assets less current
liabilities
Funds
Unrestricted funds
5
Restricted funds
5
Total Funds		 2022
£
12,925
138,71
7
151,64
2
(9,566
)		 2022
£

142,07
6
142,07
6
142,07
6
-
142,07
6		 2021
£
17,222
134,89
8
152,12
0
(11,95
7)		 2021
£
140,163
140,163
140,163
-
140,163

For the year ending 30 June 2022 the charitable company was entitled to exemption from audit under Section 477 of the Companies Act 2006.

The Trustees acknowledge their responsibilities for ensuring that the charity keeps accounting records which comply with section 386 of the Companies Act 2006 and for preparing accounts which give a true and fair view of the state of affairs of the charitable company as at the end of the financial year and of its incoming resources and application of resources, including its income and expenditure, for the financial year in accordance with sections 394 and 395, and which otherwise comply with the requirements of the Companies Act 2006 relating to accounts, so far as applicable to the charitable company.

The members have not required the charitable company to obtain an audit of the accounts for the year in question in accordance with section 476.

These accounts have been prepared in accordance with the provisions applicable to companies subject to the small companies’ regime.

These financial statements were approved by the Trustees on 23[rd] March 2023 and were signed on their behalf:

24

ALE)fs WISH Alex's Wish Company limited by Guarantee Trustees report and unaudited financial statements 30June 2022 cure Duchenne Mrs EJ Hallam Tmstee and Director 25

Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022

Notes

(forming part of the unaudited financial statements)

1 Accounting policies

Company status

Alex’s Wish is a private company limited by guarantee. The registered office is The Old Vicarage, High Street, Syston, Leicestershire, LE7 1GP. The members of the company are the Trustees as detailed in the Legal and Administration information who are also the Directors of the company for company law purposes. In the event of the charity being wound up the liability in respect of the guarantee is limited to £10 per member of the charity.

Accounting convention

The accounts have been prepared in accordance with the charity’s governing document, 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) (as amended for accounting periods commencing from 1 January 2016). The charity is a Public Benefit Entity as defined by FRS 102.

The charity has taken advantage of the provisions in the SORP the charities applying FRS 102 Update Bulletin 1 not to prepare a Statement of Cash Flows.

The accounts are prepared in sterling, which is the functional currency of the charity. Monetary amounts in these financial statements are rounded to the nearest £.

These accounts have been prepared under the historical cost convention. The principal accounting policies adopted are set out below.

Going Concern

The financial statements have been prepared on a going concern basis. Having carried out a detailed review of the Charity’s resources and the challenges presented by the current economic climate, the Trustees are satisfied that the Charity has sufficient cash flows to meet its liabilities as they fall due for at least one year from the date of the approval of the financial statements. The Trustees do not consider there to be any material uncertainties and continue to adopt the going concern basis in preparing the financial statements as outlined in the Trustees’ Responsibilities Statement. There are no significant financial uncertainties that the Trustees consider are a significant risk to the ability of the Charity to trade as a going concern in the foreseeable future.

Charitable funds

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.

Restricted funds are subject to specific conditions by donors as to how they may be used.

26

Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022

Incoming Resources

All income is recognised when the charity has entitlement to the funds, it is probable that the income will be received, and the amount can be measured reliably.

Incoming resources relating to specific events are recognised in the accounting period in which the event takes place.

Resources Expended

Expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all cost related to the category. Where costs cannot be directly attributed to particular headings, they have been allocated to activities on a basis consistent with the use of resources.

Support costs are those costs incurred directly in support of expenditure on the objects of the charity and include project management carried out.

Costs relating to specific events are recognised in the accounting period in which the event takes place.

There were no employees whose annual renumeration was more than £60,000.

Financial instruments

The charity only has financial assets and financial liabilities of a kind that qualify as basic financial instruments. Basic financial instruments are initially recognised at transactional value and subsequently measured at their settlement value.

Taxation

The charity is exempt from corporation tax on its charitable activities.

Grants

Grants are credited to deferred revenue. Grants towards capital expenditure are released to the profit and loss account over the expected useful life of the assets. Grants towards revenue expenditure are released to the profit and loss account as the related expenditure is incurred.

2 Charitable Activities

3

Payments for medical research, clinical posts and new
technologies
Expenditure on charitable events
Administrative services
Other expenses
Debtors
Amounts owed for event income
Trade debtors
Prepaid event costs		 2022
£
117,000
41,305
51,761
13,901
223,967
2022
£
-
729
12,196
12,925		 2021
£
62,142
7,666
45,386
7,451
122,645		 2021
£
62,142
7,666
45,386
7,451
122,645
2021
£
244
280
16,698
17,222

27

Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022

Notes - continued

(forming part of the unaudited financial statements)

4 Creditors: amounts falling due within one year

Income received in advance of events 2022
£
9,566		 2021
£
11,957

5 Movement in Funds

At 30 June Net At 30 June 30 June 30 June
2021 movement in 2022
funds
£ £ £
Unrestricted funds 140,163 142,076
1,913
Restricted funds - - -
Total Funds 140,163 1913 142,076
Net movement in funds, included in the above are as follows:
Incoming Resources Movement
resources expended in funds
£ £ £
Unrestricted funds 225,880 (223,967) 1,913
Restricted funds - - -
Total Funds 225,880 (222,649) 1,913
Employees:
2022 2021
Average number of employees during the year 2 2
Employment costs:
2022 2021
£ £
Wages and salaries 50,284 43,
873
Pension costs 1,477 1,3
16
51,761 45,189

6 Employees:

28

Alex’s Wish Company limited by Guarantee Trustees report and unaudited financial statements 30 June 2022

Detailed Statement of Financial Activities for the year ended 30 June 2022

2022
£
INCOMING RESOURCES
Incoming resources from charitable
activities
Donations
Fund-raising activities
Total incoming resources
RESOURCES EXPENDED
Charitable activities
Charitable event expenditure:
Big Christmas Give Campaign
-
Annual Golf Day
5,437
Coast to Coast Cycle Ride
-
Tour de Alex (Virtual)
-
Prudential Ride London
4,482
Annual Fundraising Ball
15,829
Masquerade Ball (Virtual)
473
Ethical Business Club
165
London Marathon
700
The Brothers Trust
-
Supercars Charity Event
761
Charnwood Forest Cycle Ride
1,015
‘Be More Alex’ regular giving campaign
869
Abseil Charity Event
2,475
AGM/Annual Supporters Thank You Lunch
4,107
Miss Great Britain Finals Event
524
Skydiving Events
900
6 A Side Charity Football Event
1,267
Tabletop Sale
150
Loop the Loop Challenge with AeroSparx
1,938
Stan Hulme’s Nordic Challenge
175
Other sundry event costs
38
Net proceeds from charitable activities
Overheads
Administrative Services:
Event Management
36,
233
Administration
15,528
Business Development & Networking Events
6,204
Promotional Materials
992
Website & Email Marketing
360
Bookkeeping and Legal Fees
237
Travel and Subsistence Expenses
1,436
Insurance
445
Bank charges
361
Training
159
Printing, Postage and Stationery
7
Computer and Software Costs
3,700		 2022
2021
£
£
16,843
206,169
223,012
16
4
-
1,419
72
560
-
3,169
33
5
-
324
270
-
632
-
649
-
-
-
-
-
-
72
(41,305)
181,707
31,770
13,616
3,780
424
38
223
-
445
185
-
-
2,356		 2021
£
28,979
100,799
129,778
(7,666)
122,112

29

Alex’s Wish
Company limited by Guarantee
Trustees report and unaudited fnancial statements
30 June 2022
(65,662) (52,837)
Bank interest received - gross 59 10
69,285
116,104
Payments for Medical Research, (117,00 (62,142)
Clinical Posts and New Technologies. 0)
Government grants received 2,809 24,3
60
Net incoming resources 1,913 31,503
This page does not form part of the unaudited accounts.

30