REGISTERED COMPANY NUMBER: |
REGISTERED CHARITY NUMBER: |
TRUSTEES' REPORT AND |
UNAUDITED FINANCIAL STATEMENTS FOR THE YEAR ENDED 30 JUNE 2024 |
FOR |
ALEX'S WISH |
(A COMPANY LIMITED BY GUARANTEE) |
REGISTERED COMPANY NUMBER: |
REGISTERED CHARITY NUMBER: |
TRUSTEES' REPORT AND |
UNAUDITED FINANCIAL STATEMENTS FOR THE YEAR ENDED 30 JUNE 2024 |
FOR |
ALEX'S WISH |
(A COMPANY LIMITED BY GUARANTEE) |
ALEX'S WISH |
CONTENTS OF THE FINANCIAL STATEMENTS |
FOR THE YEAR ENDED 30 JUNE 2024 |
Page |
Reference and Administrative Details | 1 |
Trustees' Report | 2 | to | 12 |
Independent Examiner's Report | 13 |
Statement of Financial Activities | 14 |
Balance Sheet | 15 |
Notes to the Financial Statements | 16 | to | 19 |
ALEX'S WISH |
REFERENCE AND ADMINISTRATIVE DETAILS |
FOR THE YEAR ENDED 30 JUNE 2024 |
Trustees |
Registered office |
Registered company number |
Registered charity number |
Independent examiner | Sturgess Hutchinson |
Chartered Certified Accountants |
21 New Walk |
Leicester |
LE1 6TE |
Website | www.alexswish.co.uk |
Bankers | National Westminster Bank |
5 The Parade |
Oadby |
Leicester |
LE2 5NT |
ALEX'S WISH (REGISTERED NUMBER: 08116159) |
TRUSTEES' REPORT |
FOR THE YEAR ENDED 30 JUNE 2024 |
The Trustees, who are also Directors of the charitable company for the purposes of the Companies Act 2006, present their report with the financial statements of the charity for the year ended 30 June 2024. The trustees have adopted the provisions of Accounting and Reporting by Charities: statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102)(effective 1 January 2019). |
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. |
They bring with them a wide range of essential skills and knowledge bases, including scientific, clinical and drug discovery and development. When scientists come forward with their ideas for new research projects, it is this board who apply their experience and expertise to test these ideas, helping refine them, if necessary, in order that we can make informed decisions on funding. We want to fund great science and projects that can improve our knowledge base, treatments that can reach the clinic and improve the lives of people with Duchenne. |
Duchenne UK's advisory board consists of: |
Professor Dame Kay Davies |
Dr. John Bourke |
Dr. Dada Pisconti |
Dr. Valeria Ricotti |
Professor Giovanni Baranello |
Professor Jordi Diaz Manera |
Dr. Tina Duong |
Dr. Isabelle Richard |
Dr. Carina Schey |
Professor Francesco Saverio Tedesco |
Dr. Graeme Wilkinson |
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 |
Since we launched Alex's Wish in late 2012, after our son Alex was diagnosed with Duchenne Muscular Dystrophy - we have made great progress towards bringing effective new treatments to help everyone affected by this disease, as well as helping to improve care standards across the UK - whilst also supporting new technological advances to help improve quality of life for everyone living with Duchenne. |
We would like to thank everyone who has supported us to date, we could not do what we do with out you. Thank you from the bottom of my heart. |
Background to setting up Alex's Wish |
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/young adult'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' homes 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 had no time to waste, and that funding was the main cause of concern. So, 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 projects with other charities like Duchenne UK. |
An exciting time in medical breakthroughs |
The science is at a very exciting time; a time of optimism as new treatments are now emerging to delay disease progression. We are acutely aware that time is not on our side, and that for families affected by Duchenne - whether they have a child diagnosed several years ago, or new families receiving a recent diagnosis - need solutions to support their child. This is what drives us every single day, to fundraise and raise awareness to continue supporting new innovative projects to address the problems within the Duchenne community. |
ALEX'S WISH (REGISTERED NUMBER: 08116159) |
TRUSTEES' REPORT |
FOR THE YEAR ENDED 30 JUNE 2024 |
Vamorolone |
In 2023, we saw a breakthrough - the first ever drug approved for use on children with Duchenne - called Vamorolone. It is reaching patients because charities like ours help to fund the early stages of the project. When Alex was diagnosed back in 2010, we were told the standard medication for children with Duchenne, steroids, would keep them independently mobile for longer, but with harmful side effects. |
The research we have funded is now bearing fruit. Vamorolone a new steroid drug, that has less harmful side-effects to traditional steroids, has now been approved by the Medicines and Healthcare products Regulatory Agency (MHRA) in the UK. We are incredibly proud that we were able to invest in the early stages to make this a reality - proof that Alex's Wish is a charity that is making a positive impact for this generation of children and young adults living with Duchenne. |
Gene Therapy |
We were told that Gene Therapy wouldn't happen in our son's lifetime. During the time that Alex's Wish has been in operation, we supported Solid Biosciences, a start-up to pursue this new technology, and boys are now being dosed with gene therapy in clinical trials taking place now in the UK. We know there are challenges with Gene Therapy, which is why we are continuing support projects that are looking to address these problems - and bring better therapies to our children. |
Innovative technologies |
Supporting Duchenne UK, we are helping drive technological advances for the benefit of children and young adults living with Duchenne. We are supporting a project to help develop the first ever arm assist device (called ELEVEX) to support arm function. It is a project that puts the needs and aspirations of Duchenne children at its heart, with the potential to bring benefit to other people with arm mobility issues. In addition, we are supporting The DREAM Wheelchair project - again working alongside Duchenne UK. These projects aim to bring better quality of life to everyone affected by Duchenne - and we are excited with the progress being made. |
Best practice in Duchenne care |
We are working alongside DMD Care UK, to help support better quality of care for everyone living with Duchenne in the UK. To date, we have funded projects, including financial support for a DMD Hub Project Manager designed to increase clinical trial capacity in the UK, a nutrition programme supporting those affected by Duchenne, and a research project looking to address the lack of accessible housing amongst our community. At the time of writing this report, we have funded additional care projects - including a transition project, to help those transitioning from paediatric care into adulthood - something which we have recently encountered ourselves with Alex. |
With all this progress, we cannot help but feel incredibly optimistic that more effective treatments will emerge, and new innovative technologies will become available alongside improved care standards to help everyone living with Duchenne. The hard work is paying off, but we must continue our journey and fund the projects we've already invested in to get those to the next stages, as well as find new discoveries to slow down and ultimately stop muscle wasting. Our mission is not only to eradicate Duchenne, but to slow down the disease and help those living with Duchenne live the best lives possible with new technologies and improved standards of care. |
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 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. |
I continue to support to this important cause, by working voluntarily for the charity and a very proud trustee and CEO - it is my pleasure to do this, to support all families affected by Duchenne. |
We could not have done our work without our army of supporters, the charitable foundations who have supported us, the local business community, our 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. |
Best wishes, |
Emma Hallam |
Charity Founder |
Our Vision |
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. |
ALEX'S WISH (REGISTERED NUMBER: 08116159) |
TRUSTEES' REPORT |
FOR THE YEAR ENDED 30 JUNE 2024 |
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 has one clear aim - to conquer Duchenne for this generation. Together we will end Duchenne. |
Our ultimate focus is to extend the lives of those living with Duchenne right now, to halt and ultimately reverse the effects of muscle wasting. Whilst also supporting the delivery of excellent standards of care and new technologies to help improve the lives of those affected in the UK. |
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 bring effective treatments to market. |
Alex, who inspired us to create this charity, has spent 11 years of his life so far on clinical trials, and has helped in his way to bring about a new treatment called Givinostat to market - a drug that is proven to delay disease progression in Duchenne. We are so proud of the efforts he puts in to support our fundraising activities. |
Charities like ours fund half of all medical research in the UK to the tune of £1.7bn. Today, 1 in 4 people choose to support medical research charities like ours, and for this we are so incredibly grateful. |
Our Impact |
The Trustees are delighted that they have been able to make significant payments during this accountancy period to two projects equating to £113,000 in line with its objectives. We provide project updates as and when they become available on our website alexswish.co.uk, e-newsletters to our supporters and at our events - namely our Autumn Lunch and Spring Launch events. |
Given an additional sum of £50,000 towards the ongoing work of The ELEVEX Suit (previously known as The Smart Suit and The Arm Assist Suit). |
When a person loses their upper body function basic tasks like brushing their teeth, feeding themselves, or hugging family become impossible. Physical barriers and social barriers (assumptions about their role and value in society) restrict freedom. |
Eventually, the barriers become insurmountable, removing the ability to live independently, continue in education, secure a job, or sustain a social life. A third of pupils aged 11-15 with a long-term illness, disability or medical condition said their disability negatively impacted their ability to participate in education. |
Ultimately, they're removed from public life and become invisible, so too do their voice and needs. This must change. The ELEVEX Suit will give back what Duchenne steals from young people by restoring the use of their arms, the suit will transform disabled kids into independent teenagers living with dignity. It will transform their lives by ultimately delivering a measurable impact on inclusion, educational attainment, and participation in society at large. We are collaborating with Duchenne UK on this project, which is designed not just to benefit the UK, but worldwide, as well as other disease areas and conditions with loss of upper body function. |
A dynamic and collaborative team are working on this project, comprising engineers, biomechanics experts, and control system specialists. Crucially, young people from the Duchenne and SMA communities have joined the design team and have actively shaped the latest concept development work, building on learning from previous prototypes. |
We are extremely grateful to our wonderful supporters and to The Brothers Trust for their contribution towards this project. |
Given £63,000 towards the 'Help the Heart' Cardiac Grant Call. |
Our heart muscles need dystrophy to function efficiently. In Duchenne, a lack of dystrophin means that heart muscles weaken over time. Heart cells are replaced by scar and fatty tissue, which leads to a type of heart muscle disease called dilated cardiomyopathy. The age when this happens in Duchenne can vary from person to person, from early childhood to adulthood. |
Children with Duchenne don't usually have cardiac symptoms. However, weakening heart muscles are part of the natural progression of the disease. Therefore, early monitoring, preventative treatment, and ongoing management are important for keeping the heart healthy into adulthood. It is currently not possible to prevent heart weakness in Duchenne completely. However, steroids and heart medication can slow down the decline in heart function. |
This grant call will help us understand how the heart is affected and identify potential innovative treatment strategies and approaches. In response to a huge unmet need in cardiac management and effective therapeutic options targeted to at the heart, leading to poor outcomes in people living with Duchenne, this will area of focus for us in 2024 and 2025 and thrilled to share that two cardiac projects are now pushing forward. One in repurposing Empagliflozin for DMD and the other an international survey on clinical presentation and service provision to inform ongoing care. |
ALEX'S WISH (REGISTERED NUMBER: 08116159) |
TRUSTEES' REPORT |
FOR THE YEAR ENDED 30 JUNE 2024 |
In addition to these projects, we have several other active projects that we have previously supported pushing forward this year. As well as pledged support to various projects in the latter half of 2024 and 2025. |
We have continued to raise awareness about Duchenne Muscular Dystrophy. |
Through regular posting across our social media platforms, about stories, progress, medical news, ways in which our supporter make an impact and how they can support us on the future and are seeing an ever increasing following and engagement online. |
Thank you to everyone who follows our journey. Through our calendar of events, we have been raising the profile of our cause and engaging with existing and new supporters. |
We have secured a pipeline of fundraising support and activities over the next 12 months. |
In addition to the funds received during this financial year, we have seen great success with our fundraising activities in the latter part of 2024 and into 2025. |
We have secured funding from various trusts and foundations, including The Brothers Trust. |
Delivered a calendar of successful and profitable fundraising activities and events for our supporters to get involved with, so that we can continue to raise money to further our mission. |
We have secured funding from local high-profile events - such as The Nottingham Hot Property Show. |
We have been working with NEXT Plc to develop Alex's Wish inspired children's pyjamas to raise money for our cause. |
Plus, much more, you can find out more by following us across our social media platforms and on our website. |
Recent activities and achievements |
Over the years, we have funded a variety of projects across a broad-spectrum from early-stage research through to clinical trials, funded five clinical posts to support clinical trial development and patient access, funded DMD Care projects, as well as invested in new technologies. |
Here are some examples of the work we have funded over recent years. |
Developing nutritional guidelines, resources and a structured nutritional programme |
Obesity is a serious health complication in Duchenne, with negative implications on cardiac and respiratory function, mental health, and quality of life. Numerous factors contribute to weight gain, including limited physical activity and the use of long-term steroids. Whilst the need for better diet and nutritional management in boys with Duchenne is recognised, this aspect of care is not addressed in the NHS, due to lack of resources and specific guidance. The solution is to develop the evidence required to affect change in Duchenne weight management care and a range of resources, tailored to the needs of boys with Duchenne and their families, that they can access particularly after initiation of steroid treatment. |
There is currently no structured nutritional and weight management guidance available to boys with Duchenne in the UK. A UK wide survey of families of boys showed that for 46% of patients, nutritional issues are not monitored or addressed in the clinic. The survey also highlighted that Duchenne specific nutritional and lifestyle advice is considered essential by these families. The 2018 international standards of care recommend that a registered dietician should assess nutritional status and create a specific nutritional plan, both of which are currently not available to UK patients through the NHS. Taken together, these highlight a major gap in UK care of boys with Duchenne, which we are uniquely placed to help address through DMD Care UK and funding this project. This project is ongoing, and clinical recommendations are expected in 2025. |
DMD Care UK project manager post at University of Newcastle - DMD Care UK has now successfully opened working groups across all agreed standards of care - now 13 in total. Each working group is working towards having published guidelines, endorsed by the relevant professional bodies - cardiac, respiratory, bone and endocrine. Patient and family guides have been produced in parallel with a publication of each clinical guideline and consultation with the Family Focus Group of DMD Care UK. |
This enables patients and families to better advocate for their care and to bring latest information to the attention of their clinical teams as well as to make informed choices about their care. |
DMD Hub is a flagship project that has successfully expanded capacity for clinical trials for Duchenne treatments in the UK. In the first four years of the project, Duchenne UK, and its partner charities (including Alex's Wish) invested £2.7m in the DMD Hub, with an additional £1.6m committed over the next 4 years. The DMD Hub is a collaboration between Duchenne UK, the John Walton Muscular Dystrophy Research Centre (JWMDRC) in Newcastle, and Great Ormond Street Hospital London. It was set up to expand clinical trial capacity and expertise and stop clinical trials being turned away from the UK. The project team developed the Clinical Trial Finder to help patients access information on DMD clinical trials in the UK. |
ALEX'S WISH (REGISTERED NUMBER: 08116159) |
TRUSTEES' REPORT |
FOR THE YEAR ENDED 30 JUNE 2024 |
We are pleased to share that since 2016, the DMD Hub has: |
Engaged with 16+ companies and 5 Clinical Research Organisations |
Recruited 793 boys on DMD trials |
Facilitated 57 clinical trials, 28 are currently active, 7 at feasibility stage and 4 in early discussions |
Provided 34 posts to facilitate the day to day and set up of new trials - 72% of these posts have been sustained Leveraged £1.3M of funding from other funders and industry to support DMD clinical research |
Antifibrotic screening platform, University of Newcastle - a new molecular biology technique which enables us to look inside muscle cells for Duchenne patients. This will help us to understand which treatments are most effective in preventing fibrosis, a process which happens when muscle cells die and are replaced by fatty tissue. Fibrosis can lead to failure of the heart and respiratory muscles, which is the most common cause of death in adults with Duchenne. While gene therapies could be transformative for people living with Duchenne, the progressive nature of the disease limits their impact. Combining gene therapies with drugs that could reduce muscle deterioration, such as anti-fibrotics could help to maximise the effect of these treatments. Anti-fibrotics could also be used to treat patients who are not eligible for gene therapy, and for those in the later stages of the disease. We funded a PhD post who was successfully appointed in August 2022 and substantial progress has been made. |
MyoGene Bio - a company developing cutting edge therapies for muscle diseases. MyoGene has further advanced preclinical development of a gene editing therapy for Duchenne with a mutation in 45-55. The experiments in dystrophic mice have been completed and they will be moving on to a large animal model study. This could be the first gene editing therapy for Duchenne reaching the clinic and are excited to see next steps. |
Lipid Nanoparticles (LNPs) technology used in COVID-19 vaccine to see whether it could be used to help in gene therapy treatments for Duchenne - Leiden University Medical Centre. Lipids are naturally occurring small fatty molecules that exist within the body, and nanoparticles refers to their small size. LNPs are currently being used as a key component in the Pfizer/BioNTech and Moderna COVID-19 vaccine. |
Several clinical trials of gene therapy are now underway in Duchenne using harmless viruses, called AAVs, to deliver synthetic gene to replace the faulty dystrophin gene in Duchenne. The early data looks promising. But there are some challenges in getting this treatment to the entire Duchenne population, mainly because some patients will have pre-existing antibodies to the virus and so will not currently be able to have the treatment. There are also difficulties in transferring the genes from the viruses into muscle cells. This study aimed to address some of these challenges by exploring LNPs as a method of delivering gene therapy. The findings were inconclusive; however, the research team are continuing their investigations for potential future success in treatment Duchenne. |
A pioneering Pluripotent Stem Cell Therapy 'Altering the muscle environment to influence stem cell behaviour' at The University of Minnesota is looking at regenerating muscle in Duchenne patients with stem cells. Stem cells are a potentially exciting approach to generate new healthy muscle in patients with Duchenne. The stem cells we are looking at are called human induced pluripotent stem cells (iPSCs). These cells replace the diseased muscle tissue with stem cells that can create healthy myofibers which are able to regenerate. The aim of this project is to produce and test these stem cells to get the preclinical data required to progress to a clinical trial. This project has proved highly successful, this study involves phase 1 human clinical trial testing the safety and tolerability of stem cells which have proven to contribute to skeletal muscle regeneration in dystrophic mice. A clinical trial recruitment is expected in 2025. |
FOR DMD PhD Post - Dr. Michela Guglieri, University of Newcastle - the funding provided allowed for the analysis of the FOR DMD trial, which was a double, blind, controlled study designed to assess the relative effectiveness and adverse event profiles in Duchenne of the 3 most frequently prescribed corticosteroid regimes (daily prednisone, daily deflazacort and intermittent 10 days on 10 days off). The project led to 4 publications in high impact scientific journals and the key outcomes were: |
Initiating steroids before age 6 improves motor trajectories over 18 months, supporting treatment no later than age 6. Daily steroid regimes benefit ambulant (still walking) boys over 6 years old - enhancing motor performance. Older boys often start intermittent regimes to limit side effects like weight gain, but daily dosing may better maintain motor function. |
Boys starting steroids above motor cut-off values show sustained improvement after 18 months, helping predict future motor performance. |
We supported the IGNITE DMD (SGT-001) Gene Therapy programme with Solid Biosciences - we were told gene therapy would not happen in our lifetimes. But we did not accept that. We are pleased to say this gene therapy programme has been tested in clinic in the US. Gene therapy offers hope as a potential treatment for Duchenne. We are extremely proud to have played a part in helping to accelerate the development of gene therapy. |
ALEX'S WISH (REGISTERED NUMBER: 08116159) |
TRUSTEES' REPORT |
FOR THE YEAR ENDED 30 JUNE 2024 |
Objectives and activities |
Charitable Objectives and Activities |
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 by: |
a) Extending the current scope of drugs / treatments so that they will help all children with Duchenne Muscular Dystrophy. |
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. |
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. |
d) Fund studies that will bring about data and information to help decision makers make decisions on which treatments to bring to market. |
e) Fund the DMD Care programme empowering patients/families to access the best care wherever they live in the UK. |
f) Fund new technological advances to help children and young adults living with Duchenne live a better quality of life. |
2. 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: |
a) Disseminate information using online and offline materials, including the Alex's Wish Website and via our monthly e-newsletters to our supporters. |
b) Running events and fundraising activities, including our Spring Launch and Autumn Lunch which sees our team, trustees, representatives from Duchenne UK, and our supporters come together for us to share our impact during the last 12 months and our plans. |
c) Promoting our work across a variety of social media platforms, including Facebook, You Tube, Linked in, Instagram and Tik Tok. |
d) 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, The Loughborough Echo and local magazines posted through doors. We 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. |
e) Talking and presenting at various events on Corporate Social Responsibility, the impact of living with Duchenne Muscular Dystrophy and About Alex's Wish - it is important our personal story is shared amongst others to be the voice for other families affected by Duchenne. |
f) 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 Grantmaking 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 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 (SAB) 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. |
Dr. Alessandra Gaeta, Director of Research and Development at Duchenne UK says 'I feel very proud of what we have achieved, with Alex's Wish invaluable support. We are committed to identify and fund the best projects that can transform DMD treatment and care, to achieve better outcomes for all people living with Duchenne'. |
We regularly send updates on project performance and outcomes to our supporters through a monthly e-newsletter as well as publish updates on our social media channels, news articles on our website and submit press releases to the local media companies. We have appeared on BBC East Midlands Today and ITV Central. |
ALEX'S WISH (REGISTERED NUMBER: 08116159) |
TRUSTEES' REPORT |
FOR THE YEAR ENDED 30 JUNE 2024 |
Achievement and performance |
Our Major Achievements |
- Co-funded 36 projects across a broad-spectrum from early-stage research through to clinical trials, funded 5 clinical posts to support clinical trial development and patient access, funding DMD Care projects, as well as invested in new technologies. Here are just a few examples of the work we have funded to date. |
- The Smart Suit revolutionary technology for upper body strength and function in children living with Duchenne. This Suit - funded by players of People's Postcode Lottery, Duchenne UK, Alex's Wish and Joining Jack - helps disabled people keep the use of their aims. The project officially started in July 2022, and since then the project has developed at a fast pace. Following the research carried out with young people, families, and clinicians at the end of 2023, three new concept visions have been created, and work continues to progress in 2024. We will continue to support this ongoing work. |
- The DREAM Wheelchair - transforming the lives of young wheelchair users. In 2017, in partnership with Whizz-Kidz, Duchenne UK won a £1million grant to develop a new wheelchair which is now at the working prototype stage. This project will explore all the options on how we can bring the chair to market, which will ultimately improve quality of life for wheelchair users. Alex's Wish gave £40K to the project, with a further £20K provided by St. James's Place Charitable Foundation and an additional £5K by The Brothers Trust. For children and young people living with Duchenne, using a wheelchair makes all the difference to their independence. But, despite huge advances in technology in almost every area of life, design and functionality of wheelchairs has changed little in 15 years. 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. The DREAM Wheelchair project is designed to bring wheelchairs into the 21st century, transforming young lives. |
- Gene editing therapy to accelerate the investigations needed to translate stem cell-based approaches or gene therapies into clinical trials or application in patients. The funding for this project will support testing a gene-editing therapy for Duchenne in preclinical models. This study is making great progress against all aims. Small and large animal studies are now underway. |
- DMD Hub Manager is a flagship project that has successfully expanded capacity for clinical trials for Duchenne treatments in the UK. In the first four years of the project, Duchenne UK, and its partner charities (including Alex's Wish) invested £2.7m in the DMD Hub, with an additional £1.6m committed over the next 4 years. The DMD Hub is a collaboration between Duchenne UK, the John Walton Muscular Dystrophy Research Centre (JWMDRC) in Newcastle, and Great Ormond Street Hospital London. It was set up to expand clinical trial capacity and expertise and stop clinical trials being turned away from the UK. The project team developed the Clinical Trial Finder to help patients access information on DMD clinical trials in the UK. Thanks to the DMD Hub, to date, more than 574 boys have been recruited since it was established in 2016 to clinical trials who otherwise may not have been. 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. |
- Antifibrotic screening platform (a new molecular biology technique which enables us to look inside muscle cells for Duchenne patients. This will help us to understand which treatments are most effective in preventing fibrosis, a process which happens when muscle cells die and are replaced by fatty tissue. Fibrosis can lead to failure of the heart and respiratory muscles, which is the most common cause of death in adults with Duchenne. While gene therapies could be transformative for people living with Duchenne, the progressive nature of the disease limits their impact. Combining gene therapies with drugs that could reduce muscle deterioration, such as anti-fibrotics could help to maximise the effect of these treatments. Anti-fibrotics could also be used to treat patients who are not eligible for gene therapy, and for those in the later stages of the disease. We funded a PhD post who was successfully appointed in August 2022 and substantial progress has been made during the first year, the interim report showed that the first aim of characterising the potential cytotoxic effect of the selected drugs in vitro has been completed and treatment proved safe to progress to in vivo studies in mouse models. |
ALEX'S WISH (REGISTERED NUMBER: 08116159) |
TRUSTEES' REPORT |
FOR THE YEAR ENDED 30 JUNE 2024 |
- Lipid Nanoparticles (LNPs) technology used in COVID-19 vaccine to see whether it could be used to help in gene therapy treatments for Duchenne. Lipids are naturally occurring small fatty molecules that exist within the body, and nanoparticles refers to their small size. LNPs are currently being used as a key component in the Pfizer/BioNTech and Moderna COVID-19 vaccine. Several clinical trials of gene therapy are now underway in Duchenne using harmless viruses, called AAVs, to deliver synthetic gene to replace the faulty dystrophin gene in Duchenne. The early data looks promising. But there are some challenges in getting this treatment to the entire Duchenne population, mainly because some patients will have pre-existing antibodies to the virus and so will not currently be able to have the treatment. There are also difficulties in transferring the genes from the viruses into muscle cells. This study aims to address some of these challenges by exploring LNPs as a method of delivering gene therapy. The study is called 'mRNA Targeted Therapeutics for Duchenne Muscular Dystrophy' and will be led by Professor Shenhav Cohen at Technion Institute of Technology, Israel, in partnership with Professor Aartsma-Rus at Leiden University Medical Center and Professor Peer at Tel Aviv University. LNPs can be filled with a variety of materials, including genetic material. Because LNPs are made of naturally occurring lipids, they should not cause an immune response. They also have a good safety profile for use in humans. This study will explore whether a larger dystrophin construct can be carried by the LNPs. The dystrophin gene is the largest gene in the body, but in current gene therapy trials, a shortened construct must be used. Our current understanding of the impact of shortened dystrophin on long-term muscle function is limited, but using a longer gene could lead to better muscle function. The research group plans to engineer the LNP surface such that the LNP will effectively fuse with muscle and deliver its cargo. This research is currently in very early stages. If the researchers can show that this method can effectively deliver genetic material into muscles using a mouse model of DMD, they would have a high chance of receiving a much larger grant for further research. The 1-year report was received in May 2022, and highlighted the need for an extension, which was granted. The project team successfully completed the preparation of the nanoparticles; however they were delayed in starting the animal studies, which is now underway. |
- We Invested in a pioneering Pluripotent Stem Cell Therapy 'Altering the muscle environment to influence stem cell behaviour' at The University of Minnesota which is looking at regenerating muscle in Duchenne patients with stem cells. Stem cells are a potentially exciting approach to generate new healthy muscle in patients with Duchenne. The stem cells we are looking at are called human induced pluripotent stem cells (iPSCs). These cells replace the diseased muscle tissue with stem cells that can create healthy myofibers which are able to regenerate. The aim of this project is to produce and test these stem cells to get the preclinical data required to progress to a clinical trial. This project has proved highly successful, and the success of the findings has led to IND-submission and the initiation of a Phase 1 Clinical Trial in 2024. |
- A study that is paving the way for improved detection of heart disease in female carriers of Duchenne with De Lee Borthwick and Dr John Bourke at Newcastle University - following this investment, we are pleased to say that this project has improved understanding of heart muscle disease in female carriers, paving the way for further research. Women and girls 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 fast, reliable and cost-effective. The biomarkers need to be tested in cohorts of female carriers, as well as male Duchenne patients, to be fully validated. This pilot project has laid vital foundations for future research to improve the speed of diagnosis and treatment of cardiomyopathies. |
- We helped fund a PhD post at The John Walton Muscular Dystrophy Research Centre at Newcastle University specifically to look at the FOR-DMD Study (finding the optimum Steroid regime for boys living with Duchenne) supervised by Dr Michela Guglieri. The PhD post will ensure that the data generated by the FOR-DMD study will be used to address new clinical and research questions, and well as sharing the results with the community, possibly through a series of webinars in 2024. |
- We are helping improve the success rate of clinical trials (PC Slices) this project is working with Professor Mann and Dr Borthwick from the Newcastle Fibrosis Research Group in the University Biosciences Institute. We had some devastating news at the end of 2019: the early termination of a clinical trial run by Wave Life Sciences. The news was a big blow, not least because early data in animals had shown that the drug was effectively producing dystrophin. How could a trial that showed such a promise in animal models not deliver results in humans? Early-stage tests are done on mice with Duchenne and then transferred to trials in people - but there is uncertainty whether a drug might behave the same in the human body. We want to stop this. That's why we supported this project, which has the potential to help us understand, at a much earlier stage of research, whether a medicine will help treat Duchenne patients. The project has been hit by a reduction in elective surgeries and heart transplants due to COVID, but some material and analysis was still able to take place during this time. A 12-month no cost extension was granted, to able the PhD student to complete their studies, and interim report was received in June 2022 which showed good progress, and the project has demonstrated the translational advantages and benefits of interrogating disease mechanisms, identifying new therapeutic targets and testing novel compounds in the more translationally relevant human Precision Cut Slice platform. |
ALEX'S WISH (REGISTERED NUMBER: 08116159) |
TRUSTEES' REPORT |
FOR THE YEAR ENDED 30 JUNE 2024 |
- We supported the IGNITE DMD (SGT-001) Gene Therapy programme with Solid Biosciences - we were told gene therapy would not happen in our lifetimes. But we did not accept that. We are pleased to say this gene therapy programme has been tested in clinic in the US. Gene therapy offers hope as a potential treatment for Duchenne. We are extremely proud to have played a part in helping to accelerate the development of gene therapy. In September 2022, Solid announced that it had made a strategic decision to prioritise SGT-003, their next-generation AAV gene therapy candidate over SGT-001 it's first-generation gene therapy candidate. News in January 2024 announced it has been granted orphan drug designation from the FDA for SGT-003 which now furthers their efforts to meet the ongoing challenge of treating this devastating disease as expeditiously as possible, these designations are important milestones, supporting the continued development of next-generation therapies for Duchenne. Solid is now currently in the process of securing approvals from the institutional review boards (IRB) at the clinical trial sites for the planned Phase 1/2 clinical trial of SGT-003 and expects to commence patient screening shortly thereafter. Patient dosing in the trial is expected to commence in mid-to-late first quarter of 2024. |
- We supported a 5-year period (2015-2020) Lectureship Post (Dr Michela Guglieri) - and we are delighted to report the outcomes of this grant, which was supported by a consortium of seven UK charities, Alex's Wish joined by Duchenne UK, Action Duchenne, Duchenne Research Fund, Duchenne Now, Duchenne UK, 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-muscular-dystrophy-dmd-clinical-trials-lectureship/ |
Financial review |
Financial Review |
Income from donations and fund-raising activities for the year amounted to £285,913 (2023: £343,744). Bank interest received in the year amounted to £1,168 (2023: £834). |
Expenditure incurred is as shown on the detailed statement of financial activities and included: expenditure on fund-raising activities which amounted to £49,842 (2023: £51,201). |
Overheads include payments for administrative services and the management of events and fundraising activities of £79,555 (2023: £66,419) and other costs relating to promotional materials, Trustee expenses, insurance, bank charges, marketing, bookkeeping, and networking events of £29,115 (2023: £28,033). |
Payments towards research and clinical trials amounted to £113,000 (2023: £288,109). Overall, there were net incoming resources for the year of £18,940 (2023: outgoing £89,184). |
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 £71,832 at the year-end (2023 £52,592). |
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 9th 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 2024, the Charity's "free reserves" stood at £71,832 (2023: £52,892), resulting in a surplus of £41,832 (2023: surplus of £22,892) when compared with the current benchmark, calculated as £30,000. |
ALEX'S WISH (REGISTERED NUMBER: 08116159) |
TRUSTEES' REPORT |
FOR THE YEAR ENDED 30 JUNE 2024 |
Strategic approach and plans to fulfil our charitable objectives |
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. |
To receive updates on outcomes for projects funded so we can report on the impact those projects have made to help progress our mission. To report on these via our news feeds on our website, our social media platforms, e-newsletters to our supporters, through local press coverage and at our events. |
Continue to work closely with Duchenne UK as a Charity Partner. To seek out and fund new projects that fit with our mission to conquer Duchenne - to improve and extend the lives of everyone affected. Ensuring that our funds are spent effectively and in the right areas to help bring about the best chances of bringing new treatments to market. |
Increase our level of income generated each year by building relationships with our existing supporters as well as attracting new supporters to our cause. |
Continue to fund projects that will bring about effective treatments, new technologies, improve care standards, and improve clinical trial capacity in the UK for the Duchenne community and aim to give £150,000+ per annum. |
Objective 2: To engage with media and our supporters to raise awareness of Duchenne Muscular Dystrophy. |
Attend the annual Horizons Conferences held by Duchenne UK to engage with other parents affected by Duchenne Muscular Dystrophy, as well as keep abreast of latest progress made in the field of Duchenne. To be actively involved in workshops and meetings alongside Duchenne UK that is focussed on improving care standards in the UK. |
Where possible, attend national events and meetings to help lobby MPs and Parliament to bring about new treatments to market as quickly as possible e.g. Vamorolone and Givinostat. |
Issue press releases and submit to the local press in the East Midlands to help raise awareness about the work we are doing and its impact on the local community / the rest of the UK and to help attract new supporters to our cause. |
Continue to send monthly updates to our supporters via e-newsletters, add newsworthy content to our website and regularly post and grow our supporter base across our social media platforms. |
Organise Supporter events including our annual Spring Launch and our Autumn Lunch to keep in touch with our supporters and guests about the vital work that we do, and how they can continue to help us. |
Continue to attend networking events within the region to build new and foster existing relationships and attract new supporters to our cause and arrange 121's with business supporters on how we can collaborate and foster relationships. |
Continue to speak at community and business events where opportunities to arise. |
Objective 3: Income Generation through our flagship events, supporter events and fundraising activities. |
Organise and build on our flagship events: Annual Charity Golf Day, our Supercars event, Charity Football Tournament, Charity Grand Prix event, Fashion Show collaborating with other local charities, our Annual Fundraising Ball and The Big Christmas Give campaign. Our focus is on covering costs, making an impact with the amount of funds raised, and providing a fun and enjoyable fundraising experience for our supporters. |
Support other organisations, groups and individuals who have decided to organise their own events in support of our cause, providing resources and time to support them achieve their fundraising goals. |
To attract supporters to take part in the London Marathon, walking and running events, challenge events e.g., zipwire challenges, skydiving, loop the loop aerobic displays, wing walks, and abseil challenges and to raise as much money as they can doing so, by providing them with the tools and encouragement to do so. |
Retain our existing regular giving supporters and develop new initiatives to grow our regular giving supporter base, through our 'Be More Alex' £7 a month regular giving campaign, our Business Community £75 a month regular subscription in exchange for business benefits such as organising local networking events to bring the local business community together. |
Continue to support businesses who donate a percentage of their income to us every single month and look to attract like-minded business. |
We aim to work within a 30:70 ratio of cost vs. income received from an event to ensure that 70% of what we raise from our events overall goes directly to fund projects to further our mission. We would like to attract more capital through corporate sponsors to cover most/if not all our event costs to help improve this ratio further. We have been successful in attracting corporate sponsors and will continue to build on those relationships. |
ALEX'S WISH (REGISTERED NUMBER: 08116159) |
TRUSTEES' REPORT |
FOR THE YEAR ENDED 30 JUNE 2024 |
Majority of our income raised has been through hosting our own events. Our aim is to continue working with local businesses to take Alex's Wish on as their chosen charity and organise their own events and consider Alex's Wish as their Charity of the Year. This means that 90%+ of the money they give to us as a Charity goes directly to fund projects to further our mission as they do not incur the expenditure that our own fundraising activities require. |
Continue to work with charitable foundations who have kindly supported our work, as well as other local charitable groups, to source additional income. We are now outsourcing this important work to an expert in this field to help us identify and approach new trusts and foundation opportunities. We have seen success in this field, and hope to continue to find more success as we diversify our income streams. |
Form strategic alliances and partnerships with organisations such as local sporting clubs, colleges, schools, and corporate businesses. |
We hope in the future to launch a podcast to further our reach and attract new audiences to our cause. |
Structure, governance and management |
Governing document |
The charity is controlled by its governing document, a deed of trust, and constitutes a limited company, limited by guarantee, as defined by the Companies Act 2006. |
Trustee Recruitment |
Trustees will be recruited through recommendations and social media, at our events and through word of mouth. Those expressing an interest will, in the first instance, be met by the Charity Founder, given an overview of the organisation, and encouraged to apply. The Chair and Co-Chair trustees 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 Co-Chair 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. |
Organisational structure |
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. |
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. |
Approved by order of the board of trustees on |
INDEPENDENT EXAMINER'S REPORT TO THE TRUSTEES OF |
ALEX'S WISH |
Independent examiner's report to the trustees of Alex'S Wish ('the Company') |
I report to the charity trustees on my examination of the accounts of the Company for the year ended 30 June 2024. |
Responsibilities and basis of report |
As the charity's trustees of the Company (and also its directors for the purposes of company law) you are responsible for the preparation of the accounts in accordance with the requirements of the Companies Act 2006 ('the 2006 Act'). |
Having satisfied myself that the accounts of the Company are not required to be audited under Part 16 of the 2006 Act and are eligible for independent examination, I report in respect of my examination of your charity's accounts as carried out under Section 145 of the Charities Act 2011 ('the 2011 Act'). In carrying out my examination I have followed the Directions given by the Charity Commission under Section 145(5) (b) of the 2011 Act. |
Independent examiner's statement |
Since your charity's gross income exceeded £250,000 your examiner must be a member of a listed body. I can confirm that I am qualified to undertake the examination because I am a member of the Association of Chartered Certified Accountants, which is one of the listed bodies. |
I have completed my examination. I confirm that no matters have come to my attention in connection with the examination giving me cause to believe: |
1. | accounting records were not kept in respect of the Company as required by Section 386 of the 2006 Act; or |
2. | the accounts do not accord with those records; or |
3. | the accounts do not comply with the accounting requirements of Section 396 of the 2006 Act other than any requirement that the accounts give a true and fair view which is not a matter considered as part of an independent examination; or |
4. | the accounts have not been prepared in accordance with the methods and principles of the Statement of Recommended Practice for accounting and reporting by charities (applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102)). |
I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached. |
J Petha FCCA |
The Association of Chartered Certified Accountants |
Sturgess Hutchinson |
Chartered Certified Accountants |
21 New Walk |
Leicester |
LE1 6TE |
25 March 2025 |
ALEX'S WISH |
STATEMENT OF FINANCIAL ACTIVITIES |
FOR THE YEAR ENDED 30 JUNE 2024 |
2024 | 2023 |
Unrestricted | Total |
fund | funds |
Notes | £ | £ |
Income and endowments from |
Donations and legacies |
Charitable activities |
Fund-raising activities | 248,269 | 300,297 |
Investment income | 2 |
Total |
Expenditure on |
Charitable activities |
Expenditure on charitable events | 46,471 | 51,201 |
Administrative services | 79,555 | 66,419 |
Payments for medical research, clinical posts and new technologies | 113,000 |
288,109 |
Support costs | 29,115 | 28,033 |
Total |
NET INCOME/(EXPENDITURE) | ( |
) |
Reconciliation of funds |
Total funds brought forward |
Total funds carried forward | 52,892 |
ALEX'S WISH (REGISTERED NUMBER: 08116159) |
BALANCE SHEET |
30 JUNE 2024 |
2024 | 2023 |
Unrestricted | Total |
fund | funds |
Notes | £ | £ |
Current assets |
Debtors | 7 |
Cash at bank and in hand |
Creditors |
Amounts falling due within one year | 8 | ( |
) | ( |
) |
Net current assets |
Total assets less current liabilities |
NET ASSETS |
Funds | 9 |
Unrestricted funds | 52,892 |
Total funds | 52,892 |
The charitable company is entitled to exemption from audit under Section 477 of the Companies Act 2006 for the year ended 30 June 2024. |
The members have not required the company to obtain an audit of its financial statements for the year ended 30 June 2024 in accordance with Section 476 of the Companies Act 2006. |
The trustees acknowledge their responsibilities for |
(a) | ensuring that the charitable company keeps accounting records that comply with Sections 386 and 387 of the Companies Act 2006 and |
(b) | preparing financial statements which give a true and fair view of the state of affairs of the charitable company as at the end of each financial year and of its surplus or deficit for each financial year in accordance with the requirements of Sections 394 and 395 and which otherwise comply with the requirements of the Companies Act 2006 relating to financial statements, so far as applicable to the charitable company. |
These financial statements have been prepared in accordance with the provisions applicable to charitable companies subject to the small companies regime. |
The financial statements were approved by the Board of Trustees and authorised for issue on |
ALEX'S WISH |
NOTES TO THE FINANCIAL STATEMENTS |
FOR THE YEAR ENDED 30 JUNE 2024 |
1. | Accounting policies |
Basis of preparing the financial statements |
The financial statements of the charitable company, which is a public benefit entity under FRS 102, have been prepared in accordance with the Charities SORP (FRS 102) 'Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019)', Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland' and the Companies Act 2006. The financial statements have been prepared under the historical cost convention. |
Income |
All income is recognised in the Statement of Financial Activities once the charity has entitlement to the funds, it is probable that the income will be received and the amount can be measured reliably. |
Expenditure |
Liabilities are recognised as expenditure as soon as there is a legal or constructive obligation committing the charity to that expenditure, it is probable that a transfer of economic benefits will be required in settlement and the amount of the obligation can be measured reliably. Expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all cost related to the category. Where costs cannot be directly attributed to particular headings they have been allocated to activities on a basis consistent with the use of resources. |
Taxation |
The charity is exempt from corporation tax on its charitable activities. |
Fund accounting |
Unrestricted funds can be used in accordance with the charitable objectives at the discretion of the trustees. |
Hire purchase and leasing commitments |
Rentals paid under operating leases are charged to the Statement of Financial Activities on a straight line basis over the period of the lease. |
Pension costs and other post-retirement benefits |
The charitable company operates a defined contribution pension scheme. Contributions payable to the charitable company's pension scheme are charged to the Statement of Financial Activities in the period to which they relate. |
2. | Investment income |
2024 | 2023 |
£ | £ |
Deposit account interest |
3. | Net income/(expenditure) |
Net income/(expenditure) is stated after charging/(crediting): |
2024 | 2023 |
£ | £ |
Other operating leases | 7,140 | 3,570 |
4. | Trustees' remuneration and benefits |
There were no trustees' remuneration or other benefits for the year ended 30 June 2024 nor for the year ended 30 June 2023. |
Trustees' expenses |
There were no trustees' expenses paid for the year ended 30 June 2024 nor for the year ended 30 June 2023. |
ALEX'S WISH |
NOTES TO THE FINANCIAL STATEMENTS - continued |
FOR THE YEAR ENDED 30 JUNE 2024 |
5. | Staff costs |
2024 | 2023 |
£ | £ |
Wages and salaries |
Other pension costs |
79,555 | 66,419 |
The average monthly number of employees during the year was as follows: |
2024 | 2023 |
Administration |
6. | Comparatives for the statement of financial activities |
Unrestricted |
fund |
£ |
Income and endowments from |
Donations and legacies |
Charitable activities |
Fund-raising activities | 300,297 |
Investment income |
Total |
Expenditure on |
Charitable activities |
Expenditure on charitable events | 51,201 |
Administrative services | 66,419 |
Payments for medical research, clinical posts and new technologies | 288,109 |
Support costs | 28,033 |
Total |
NET INCOME/(EXPENDITURE) | ( |
) |
Reconciliation of funds |
Total funds brought forward |
Total funds carried forward | 52,892 |
ALEX'S WISH |
NOTES TO THE FINANCIAL STATEMENTS - continued |
FOR THE YEAR ENDED 30 JUNE 2024 |
7. | Debtors: amounts falling due within one year |
2024 | 2023 |
£ | £ |
Trade debtors |
Prepayments and accrued income |
8. | Creditors: amounts falling due within one year |
2024 | 2023 |
£ | £ |
Social security and other taxes |
Accruals and deferred income |
9. | Movement in funds |
Net |
movement | At |
At 1.7.23 | in funds | 30.6.24 |
£ | £ | £ |
Unrestricted funds |
Unrestricted funds | 52,892 | 18,940 | 71,832 |
TOTAL FUNDS | 18,940 | 71,832 |
Net movement in funds, included in the above are as follows: |
Incoming | Resources | Movement |
resources | expended | in funds |
£ | £ | £ |
Unrestricted funds |
Unrestricted funds | 287,081 | (268,141 | ) | 18,940 |
TOTAL FUNDS | ( |
) | 18,940 |
Comparatives for movement in funds |
Net |
movement | At |
At 1.7.22 | in funds | 30.6.23 |
£ | £ | £ |
Unrestricted funds |
Unrestricted funds | 142,076 | (89,184 | ) | 52,892 |
TOTAL FUNDS | 142,076 | (89,184 | ) | 52,892 |
Comparative net movement in funds, included in the above are as follows: |
Incoming | Resources | Movement |
resources | expended | in funds |
£ | £ | £ |
Unrestricted funds |
Unrestricted funds | 344,578 | (433,762 | ) | (89,184 | ) |
TOTAL FUNDS | 344,578 | (433,762 | ) | (89,184 | ) |
ALEX'S WISH |
NOTES TO THE FINANCIAL STATEMENTS - continued |
FOR THE YEAR ENDED 30 JUNE 2024 |
10. | Related party disclosures |