# **Alice’s Arc Annual Report** 1 October 2024 – 30 September 2025 alicesarc.org 1
YEARS OF
Alic£'&
AFC
CHILDREN S CANCER CHARITY
Alices Art Annual Report | 2024-2025
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## **Contents**
## **Annual review**
|**Annual review**||
|---|---|
|Introduction — A message from our CEO|06|
|About us|08|
|Ourgoals|09|
|About Rhabdomyosarcoma|10|
|The Arcs|12|
|Spotlight on Ellie’s Arc|14|
|A tribute to...|18|
|Ouryear at aglance|22|
|– Research focus||
|– Family research engagement day||
|– Patient/Parent involvement &||
|engagement in research||
|– Fundraising highlights||
|– Other news||
|The future|40|
|Report and fnancial statements|41|
Charity number 1164253
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## **Introduction**
## **A Message From our CEO**
## **Our 10[th] Anniversary Year!**
This financial year marked 10 years of Alice’s Arc. This is a complicated milestone as we’d rather the charity didn’t exist and that we were able to cure rhabdomyosarcoma using kind treatments with minimal impact for life in the future.
This year we welcomed another Ellie’s Arc, in honour of Ellie Waters-Barnes, who was diagnosed ten years ago and is now finishing medical school. She brings a unique insight to our work as a long-term survivor navigating life after rhabdomyosarcoma.
Our ever-growing community of families enables us to have a powerful voice in a large range of advocacy activities from the UK Children & Young People’s Government Taskforce to helping scientists devise grant applications. We are proud that the patient/parent voice is at the heart of our work.
Sadly, we pay tribute to Jake and Thomas who both ran out of treatment options and died from rhabdomyosarcoma. They are yet more reasons behind the existence of Alice’s Arc and reinforce our mission.
However, here we are, and we are proud to have raised almost £4.9million during this time, primarily through our Arcs model, now 37 strong with more in the works. This has enabled us to fund 14 Rhabdomyosarcoma research projects across UK research institutions and over £2.9million has been invested to date. Many of these projects have been co-created with our community ensuring patientcentric and the most potentially impactful research work is in progress. This year we were pleased to announce our first grant to the University of Oxford for a piece of research designed to explore the use of vaccines as a potential treatment for rhabdomyosarcoma.
Finally, we remain eternally gratefully to the Families, Scientists, Clinicians & other Medical Professionals, and supporters of the charity. This is an ongoing and heartbreaking fight against rhabdomyosarcoma. Thanks for always motivating us to persevere. Together we are stronger. For all those who have had the misfortune to hear the word ‘rhabdomyosarcoma’.
A fundraising highlight this year was our 10 Year ‘Go Gold’ event held in London. We also were a Gold Partner Charity at the Great North Run and Lush continue to be an active partner via Dexter’s Arc. Our Arcs continue to devise unique fundraisers. This year saw Elsa’s relay across the UK, lasting three months to honour the five year anniversary of her death. We are also so grateful for the continued support of corporate partners and community such as schools, shops and local businesses.
Lets keeping going until rhabdomyosarcoma is defeated and new, effective treatment options become a reality.
With best wishes,
We added 4 new Arcs to our UK network enabling us to pool vital funds to ensure we have a sustainable, long-term pipeline of research projects and a family rhabdomyosarcoma community.
Sara Wakeling
Charity number 1164253
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## **About Us**
Alice’s Arc is dedicated to finding a cure and kinder, more targeted treatments for those affected by the childhood cancer, rhabdomyosarcoma. Funding research and contributing to advances in our scientific understanding of rhabdomyosarcoma is crucial to making progress to improve long term survival outcomes and minimise long-term side effects. Alice’s Arc has raised £4.9million and awarded 14 rhabdomyosarcoma research grants since it was founded in 2015.
Effective collaboration is critical in achieving change. Through our strong relationships with major research institutions, hospitals, clinicians, families and other charities, we present a global rhabdomyosarcoma voice advocating for change and a future where this disease can be cured safely, using new and cutting-edge treatments.
The children and families impacted by rhabdomyosarcoma are at the heart of what we do and we work closely together to help achieve our goals. We have created a network of families globally and provide individual Arcs in honour of the children or young people’s journeys with rhabdomyosarcoma. These platforms have multiple purposes and are individually tailored to enable families to tell their story, fundraise, advocate and demonstrate the impact they are making. We currently have 37 Arcs across England and Northern Ireland and more in the works.
We also have a sister non-profit in the USA and have commenced work replicating the same work via Alice’s Arc, US. We have a research grant currently in its second year at the Children’s Hospital of Philadelphia (CHOP).
In addition, we aim to be a major source of support to our community of families, from diagnosis, treatment, post treatment, relapse, palliative care, loss and survivorship. We deliver this via our family well-being service and through groups designed to connect patients and families.
## **Our goals**
**A reminder of our research priorities**
**Examine the causes of rhabdomyosarcoma.** This means preclinical, biological research to build understanding about the genetic landscape of the cells comprised in these tumours as well as the interaction with the tumour
**Help identify new targets and**
**Translation into clinical trials. Ensure our research projects and findings link to clinical trials such as FaR-RMS, MIGHTY, and eSMART.**
This enables research questions to be tested and assessed in the patient setting. We also have aspirations to devise our own clinical trials in collaboration with the scientists/medical professionals in our community.
**Devise kinder treatments.** These need to be identified as 95% of survivors will have long-term health issues as a result of treatment. Quality of life is a key consideration in treatment and beyond.
**Share findings across existing platforms for paediatric solid tumours.**
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## **About Rhabdomyosarcoma**
Sarcomas are cancers that can resemble bone or soft tissues. Rhabdomyosarcoma is the most common soft tissue sarcoma occurring in children and young people and they tend to look like developing muscle or fibrous tissue.
It is a highly aggressive childhood cancer with 60–70 children diagnosed in the UK every year. It accounts for 5% of childhood cancer cases each year. Outcomes are influenced by the location, staging, fusion gene status and disease subtype.
Recent international research has uncovered that the presence of certain biological markers in both **fusion negative (MYOD1, TP53)** and **fusion positive (TP53, CDK4, MYCN)** rhabdomyosarcoma can lead to a poorer prognosis. The implications of this research will lead to changes to categorising children to the existing risk categories and may lead to the development of new drugs to treat these specific gene faults.
The two main types are commonly referred to as **embryonal** and alveolar rhabdomyosarcoma. Embryonal is the most common and makes up 60/70% of cases. It commonly presents in the head, neck, bladder, vagina, prostate or testicles and cells look like developing muscle cells of a 6-8 week embryo. **Alveolar** is more common in young adolescents and tends to occur in large muscles like the arms, trunk and legs. The cells look like normal muscle cells in a 10 week old foetus. It grows faster than embryonal and requires more intense treatment.
Stratified Medicine Paediatrics (SMPaeds) was the **UK’s first national profiling platform** and successfully provided an infrastructure to analyse patient samples for targeted treatments and clinical trials by identifying molecular abnormalities in relapsed childhood cancer. The molecular panels provided as part of SMPaeds have now been implemented into the National Health Service (NHS). There is still significant unmet need in paediatric cancer, with a proportion of patients not having actionable variants identified in tumour tissue, and their response/resistance to recommended treatment being unmonitored molecularly. SMPaeds2 will build on the success of SMPaeds. **The main objective of this programme is to identify novel and potentially actionable drivers of aggressive disease, treatment resistance factors and developing less invasive “liquid biopsies” for improved patient selection and monitoring in future clinical trials.**
More recently, biological studies have found that the PAX-FOX01 gene fusion status of the disease could be important in predicting the outcome and treatment plan offered. This has led to the disease being more frequently described as **fusion negative rhabdomyosarcoma or fusion positive rhabdomyosarcoma** .
On relapse, there is an **8–20% chance of survival** . This is influenced by the subtype, gene fusion status, presence of certain biological markers and location.
## **What treatment is available?**
Current treatments involve a combination of surgery (if possible), intensive chemotherapy, maintenance chemotherapy and radiation (proton, photon, brachytherapy). Where a known biological marker is discovered via sequencing, tailored drugs may also be available. A phase one clinical trial, known as MIGHTY, to test the safety of CAR T-cell therapy for RMS opened during this time period and is now recruiting patients to it’s sites at Great Ormond Street Hospital and UCLH.
The clinical trial, FaR-RMS (Frontline and Relapsed RhabdoMyoSarcoma) was launched in September 2020. It will aim to recruit 1250 patients in total. It is now open in 20 countries including Canada, Australia, New Zealand and Israel. It currently has 1198 patients registered. The trial studies several aspects of treatment for the disease both for patients newly diagnosed and at the point of relapse. It is open to patients of all ages (children, TYA and adults). It has a multi-arm, multiple-stage design to identify early indications of benefit (or lack of benefit) of new therapies.
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## **The Arcs**
## **Why do we have Arcs?**
Throughout Alice’s journey with rhabdomyosarcoma we met many other families with children or young people being treated for rhabdomyosarcoma. We connected in person in hospital and through virtual platforms. These brave children and their families are the inspiration for Alice’s Arc. The world of rhabdomyosarcoma can be lonely and it is important to find a space where you feel understood, safe and able to share your journey. At the same time, we all have a shared mission — to find new treatments and less harsh treatments to improve the prognosis for children diagnosed in the future. To achieve this families need to come together. By working together we are stronger and can create a long-term, sustainable platform to bring about change.
## **Arcs: The future**
We have been delighted with the interest shown from families to work together and to create Arcs. As a result of this unique model, funds raised continue to climb at a fantastic rate enabling our scientific board to assess an increased volume of grant applications which has enhanced our rhabdomyosarcoma research portfolio significantly. The model also continues to attract global interest and we have now launched an operation in the USA which has 4 Arcs so far. It’s all about coming together to be stronger, to be more impactful and to ensure that children in the hospital will benefit as soon as possible.
## **The role of the Arcs:**
An Arc is a unique place where a family and their supporters/community can honour a child or young person’s experience with rhabdomyosarcoma.
An Arc can fundraise, advocate and demonstrate impact in their child’s name.
Ensure that research is parent-led and addresses the needs of families diagnosed in the future.
Research is complex and expensive - pooling funds together allows Scientists to formulate more comprehensive research proposals with clinical translation and allows a pipeline of research to evolve from projects.
Support families. Our community of rhabdomyosarcoma parents, patients and siblings can offer support to newly diagnosed families, those on treatment, those in remission, those on palliative care, survivors and those suffering the loss of their child.
## **Newly launched Arcs**
During this time, we have launched an additional 4 Arcs. We now have Arcs based in East Anglia, the North West, the North East, The Midlands, the South West, the South East, London and in Northern Ireland.
A unique brand has been developed for each Arc by using an image representing the individual child or young person. In addition, a web page has also been created for each Arc.
**Ellie’s Arc for Ellie,** who celebrated 10 years since her ARMS diagnosis in September 2015. Ellie is now 24 and lives with an ever-growing list of health problems, resulting from her treatment. She is a passionate advocate campaigning to highlight the number of long-term health issues survivors face. Ellie’s Arc highlights the fact she is currently a student studying medicine and her desire to work in this field. It also shows her love of keeping active through running, hiking and cycling.
**Jake’s Arc for Jake,** who died aged 13 years, on 26th April 2024. Jake’s Arc is represented by his obsession with sushi which he was unable to eat during his treatment due to the risk of infection. He also loved F1 racing, the sea cadets and gaming which are all demonstrated in his Arc.
**Max’s Arc for Max,** who was diagnosed in July 2018 and has shown no evidence of disease since his treatment ended. Max has taken an active role designing his Arc which illustrates his love of basketball, gaming, star wars and football.
**Thomas’ Arc for Thomas,** who died aged 16, in April 2025. Thomas’ Arc has been designed to represent his ambition of becoming a farmer. The green tractor shows his love for driving tractors and being in the countryside with his dogs. The Arc includes a basketball with a net and wheelchair as Thomas was an avid wheelchair basket ball player competing for Southern Sharks and London Titans. It also has an image of his trusty dog and the number 16,
representing his years of life.
_We created Max’s Arc to support Alice’s Arc and help raise awareness of rhabdomyosarcoma and to raise funds linked to the charity’s aims. We are extremely fortunate that Max’s treatment was effective and recognize the disparity in outcomes, which is heartbreaking. The charity is vital to forge a path to find a cure and better, kinder treatments giving more children a chance._ **KIM, MAX’S MUM, MAX’S ARC**
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## **Spotlight:**
Unfortunately, it is not often that we welcome an individual like Ellie to our community. We are so grateful to have her to shine a light on her experience as a survivor of rhabdomyosarcoma. In September 2015, Ellie was diagnosed with stage 4 Alveolar Rhabdomyosarcoma, aged 14. Ellie received 9 cycles of intensive chemotherapy, along with 28 sessions of pelvic radiotherapy and 12 cycles of maintenance chemotherapy. Her care was led from Nottingham Children’s Hospital. Ellie’s treatment was successful and she remains in remission. Ellie is now 25 and is coming to the end of her Medicine degree at University. She lives with an ever-growing list of health problems resulting from her treatment. These have been and
continue to be complex to navigate alongside education, work and life. Ellie is passionate about advocating to reduce the number of long-term health problems that survivors are left to cope with.
## **We asked Ellie:**
**How does your cancer experience influence your life?**
Whenever me and my family talk about the past, we always refer to events as ‘before Ellie got ill’ and ‘after Ellie got ill’. I think that itself signifies how life-changing my diagnosis was on myself and my family. Our world as we knew it flipped upside down. Ever since, life has not been the same as it was before. As a family, we stress less over minor things and we make more time to create memories together. One real positive from my cancer diagnosis was that I discovered my passion to help others, through creating my blog and YouTube channel. That passion has stayed with me and led to me completing medical school and becoming a doctor. I sometimes do find it difficult to be in the hospital everyday because it does trigger emotions and memories from when I was ill. But, I am trying to instead use my past experiences to help me understand what patients are going through and help them in the best way that I can.
So, yes, having cancer really did change the trajectory of my life completely! As I continue to move forward from my diagnosis the memories fade, but the lessons it taught me will never perish.
## **What is it like to be a survivor?**
Being a survivor carries mixed emotions. On the one hand you are so grateful to have survived, but the other you grieve the life you once had. I didn’t realise how difficult it would be to adjust to life after cancer. Now, I look ‘normal’ to the average person but I feel the burden of cancer everyday. I wasn’t warned or prepared about all the side effects I may experience, or how new problems could come even years after my treatment had finished.
I feel grateful to be a survivor because it has allowed me a second chance at life with a renewed perspective. I no longer stress over the small things and I do my best to live life to the full. One thing that gives me great purpose is that I can use my experiences for good, by sharing my story and spreading awareness of childhood cancer.
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## **What changes would you like to see in the future?**
Whilst I am grateful to have survived the cancer, I do struggle daily with the long-term health conditions that I have acquired as a result of my treatment. At my lowest points during remission, I have even wished that I didn’t survive the cancer, feeling that that would have been easier than coping with a lifetime of debilitating health problems. So, my hope for children diagnosed with rhabdomyosarcoma is that new, more effective and less toxic treatments are developed. It is absurd that the only option for these children are treatments that have not changed for decades, treatments that were always meant for adults. It is unfair that survivors of this disease should have to live with the burden of its treatments for the rest of their lives. Our only aim should not only be increasing survival rates, but to reduce the number of long-term health problems that these survivors face also.
## **Why did you set up an Arc?**
I decided to set up my Arc in the same year that I would reach my 10 year cancer anniversary. As we all know, Rhabdomyosarcoma is a beast, so I felt truly lucky to be reaching such a milestone. So, I knew that I wanted to do something special, for a very special charity. I’ve been following Alice’s Arc for sometime and I am truly inspired by Alice’s incredible parents setting up such an important charity. It has motivated me to want to fundraise for Rhabdomyosarcoma specifically because, without charities like theirs funding vital research, I may not be here. I hope to continue fundraising for Alice’s Arc, so that we can create a better future for children diagnosed with Rhabdomyosarcoma.
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## **Be more Thomas**
## **A tribute to... A Tribute to...**
The death of a child is a life-changing and devastating experience. It impacts all those who knew the child. The loss creates purpose and constructive engagement. No family wants another family to endure this. These children are catalysts for change. They are the reason to raise funds and invest in new research. They will save the lives of those diagnosed in the future.
This year, we want to pay tribute to **Jake** and **Thomas** who lost their lives to rhabdomyosarcoma during this period. Alice’s Arc will always remember you and talk about you. You are the inspirations for our work.
## Thomas Winters Holmes
21[st] April 2008 to 11[th] April 2025
## **Thomas’ impact:**
## **Snapshot of his story:**
Thomas’ experience has resulted in the creation of an initiative called #BEMORETHOMAS. This will support Thomas’ Arc, Abby’s Heroes, Chestnut Tree, Momentum and Young Lives v Cancer. It is aimed to honour Thomas through charity, community and giving back to those beside him during his experience with rhabdomyosarcoma.
Thomas, aged 15, was diagnosed with fusion positive metastatic rhabdomyosarcoma, with multiple sites in the chest, legs and arms. Thomas entered the FaR-RMS clinical trial and received nine rounds of chemotherapy and radiotherapy at UCLH, London. His overall care was led from Southampton Children’s Hospital.
Despite responding well to his frontline treatment, Thomas relapsed in December 2024, with the rhabdomyosarcoma causing a fracture in his back. Thomas died in April 2025, just eleven days before his 17th birthday.
Thomas’ Arc want to see more individualized treatment protocols and the best interests of the patient at the heart of decision-making. They also value being directed to parent-led community charities like Alice’s Arc where you can share the benefit of experience and exploration of potential treatment approaches with other families. They also want to ensure second opinions are offered by the treating centre as a matter of protocol. This contributes to ensuring shared and informed decision making.
_They say everything has a reason, well... We learnt a lesson, We learn to live_
## _SO_
_Send that car faster and make that black smoke Be that team player who wins the point Forgive a little quicker And worry a lot less Laugh that much louder And hug all that harder Love without limits And embrace life's learning Live for today and do it faster Don't wait for tomorrow For tommorrow is not a given And remember Lettuce is not a food or even a food group._
## **MELANIE, THOMAS’ MUM, THOMAS’ ARC**
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## Jake Swinscoe
11[th] May 2010 to 26[th] April 2024
## **Snapshot of his story:**
Jake, aged 13, was diagnosed with stage 3, fusion positive alveolar rhabdomyosarcoma in July 2023. Jake completed nine rounds of chemotherapy and proton beam radiation in London. His overall care was led from Southampton Children’s Hospital. In March 2024, end of treatment scans revealed that the cancer had spread to the fluid surrounding his brain and spine. Jake was due to commence relapse chemotherapy when he suffered a seizure. He was admitted to intensive care and given steroids to control the swelling around his brain. Following this, Jake made the brave decision not to receive any more treatment and went home. He passed away peacefully at home on Friday 26[th] April 2024, just 2 weeks before his 14[th] birthday.
## **Jake’s impact:**
Jake’s family, friends and community have come together to honour him and to contribute towards making change in his name. As a result of Jake’s experience, they want to see tailormade treatment plans for each child’s individual diagnosis. They want to find better ways to treat alveolar rhabdomyosarcoma as the current treatments aren’t effective enough.
Jake’s school have opened a memorial garden at his school to honour his life and presence at the school. It also includes a time capsule representing all things Jake. The local Salisbury media covered the story.
_Jake really was the most incredible and resilient boy and we are so proud of him. We hope that creating Jake’s Arc will not only develop a lasting legacy remembering the beautiful boy that Jake was, but to raise vital funds into_ **Fundraising** _the research of rhabdomyosarcoma._ **for Jake: LYNSEY, JAKE’S MUM, JAKE’S ARC**
**£3k+**
was raised by Stonehenge School in the event “A Million Steps For Jake”on 9th May 2025. Jake’s Mum, and sister Ava, handed out Jake’s favourite blue lollipops at the finish line, and Adam, his Dad, also did several laps of the course.
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## **Our year at a glance**
## **Research Focus**
We donated **£561,394** towards rhabdomyosarcoma research during this time period.
Total funds donated towards rhabdomyosarcoma research to over **£2.9 million** at the end of September 2025.
**Total funds donated**
**£2.9m**
## **The Institute of Cancer Research**
## **The University of Birmingham**
This relates to the second year of the project entitled **“Defining plasticity in RMS cells: A new approach to derive new treatments that prevent or treat relapse.”** This project paves the way for more personalized treatments in the future.
For year three for two projects. One aiming to understand more about tumour heterogeneity and the tumour micro-environment for fusion positive and fusion negative rhabdomyosarcoma. The second aiming to build knowledge of the role of the RAS pathway and how to target it therapeutically.
## **University College London**
This relates to year one of the project **“Exploring a novel cancer surface antigen (B7H3) for fluorescence-guided surgery in RMS: one-step away from translation.”** This aims to improve surgical interventions for rhabdomyosarcoma and be able to offer it as an option in complex disease locations.
## **Wellcome Sanger & UCL Cancer Institute**
This is for our project **“Learning from outliers to improve the outcomes of children with RMS”** The teams are sequencing tumours from the VIVO Biobank and analysying clinical data to build understanding and inform new directions of research.
## **University of York**
This is the payment for year three of
**Living REFoRMS** , a project designed to aid families decision-making at the point of relapsed/refractory rhabdomyosarcoma by creating an online ‘dynamic’ resource containing information for clinicians & parents.
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## **Family Research Engagement Day**
We held a research engagement day at the Institute of Cancer Research (ICR) in May 2025. The purpose of these is to bridge the gap between the science and the patients/parents. This helps both parties understand each other’s perspectives and to help co-create future directions of research. By doing this, we can work in true partnership with scientists to improve outcomes for those diagnosed with rhabdomyosarcoma in the future. It also helps us understand where money raised goes and to question progress, challenges and new lines of research.
The day commenced with Daisy’s Dad presenting Daisy’s story and setting out their vision for change in the future. We were then treated to a series of flash talks from Individuals across the Institute of Cancer Research working on Alice’s Arc funded work and other RMS projects.
This included Professor Janet Shipley’s Lab and Dr Alejandra Bruna’s Lab. The challenge of clinical translation was also presented by Dr Julia Chisholm. The day culminated in laboratory tours so families can experience rhabdomyosarcoma research in action.
These community events always highlight the urgent need to work together and expedite the development of new RMS treatments.We are so grateful to the ICR for hosting us.
_Visiting the ICR was highly insightful from the parent perspective. It highlighted the complexity of translating science in the lab to real-world treatments and the challenges they face. We also had the opportunity to discuss how parents/patients can help support expedite research._ **CHIARA, DAISY’S MUM, DAISY’S ARC**
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## **Research News in the USA**
Project 1: Discovery of new immuno-oncology targets and development of cellular therapies.
Following the competitive tender in conjunction with St Baldricks Foundation Empowering Pediatric Immunotherapies for Childhood Cancer (EPICC) Consortium, Alice’s Arc US. Inc was delighted to award a three-year grant of $750K to support the work of Drs Yael Mossé and John Maris at the Children’s Hospital of Philadelphia (CHOP).
Project 2: IND-enabling studies for a novel antibody-drug conjugate (ADC) targeting ALK in fusion-positive RMS.
We look forward to sharing findings of this innovative research and how it will lead to better treatments for rhabdomyosarcoma in the future.
The work commenced on 1st January 2025 and will include two complementary projects aimed at creating new immunotherapies for Rhabdomyosarcoma.
_“We think we have a real opportunity to make a_ _**huge impact by developing completely novel new drugs** for children with RMS.”_ **DR YAEL MOSSE, ASSOCIATE PROFESSOR, UNIVERSITY OF PENNSYLVANIA & PHYSICIAN, CHILDREN’S HOSPITAL OF PHILADELPHIA.** _“We are delighted to work with the distinguished team at CHOP, who have_ _**significant expertise devising new immunotherapy treatments** for kids with solid tumours such as neuroblastoma. This experience urgently needs to be translated to developing new treatments for children with rhabdomyosarcoma to improve outcomes for those diagnosed in the future.”_ **SARA WAKELING, CEO OF ALICE’S ARC** _“Children with RMS receive pretty much the same therapy today as they did forty years ago._ _**We hope to change this reality** with precision immunotherapies that can be rapidly developed and deployed in clinical trials.”_ **“ “**
**DR JOHN MARIS, PAEDIATRIC ONCOLOGIST & SCIENTIST AT CHILDREN’S HOSPITAL OF PHILADELPHIA.**
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## **Patient/Parent Involvement & Engagement in Research**
## **LifeArc convenes Rhabdomyosarcoma workshop**
## **December 2024**
As part of the LifeArc translational challenge for childhood cancer, Sara Wakeling (alongside fellow advocates Abbe Pannucci & Delphine Heenen) attended and presented at their unmet need online workshop on rhabdomyosarcoma. The purpose of this was to bring together international experts across the field to prioritise RMS targets to pursue the development of drugs to treat them. This work has now been published in the British Journal of Cancer.
## **SIOPE Europe, Budapest**
## **May 2025**
Sara Wakeling attended this meeting alongside trial leads to highlight the PPI/E work conducted on FaR-RMS over the review period. In particular, this related to the production of video content to help facilitate understanding and enhance recruitment on the radiotherapy arm of the study.
## **Laboratory visit to Institut Cochin, Paris**
## **December 2024**
- Sara Wakeling visited the Donnadieu laboratory in Paris which focuses on cancer and the immune response. This lab is involved in the Cancer Grand Challenges and NexTGen specifically. This challenge is evolving the next generation of T-cell therapies for children with solid tumours like rhabdomyosarcoma. It is the first time that this lab is applying their expertise to childhood solid tumours.
During this visit, Sara came face to face with some fusion negative rhabdomyosarcoma tumours stored in the freezer after biopsies and used for experiments, highlighted in the picture. This was a reminder from the scientists there, that they never see the tumours on the patients and these tubes are their experience of the tumours which dehumanizes their work. They emphasised how important it was for them to meet parents/patients in order to keep the stories at the centre of their daily work. Sara also saw B7 H3 T-cells stored in their bottle and what they looked like via the microscope.
Work has included **science communications** e.g. video content, website development, co-lay presentations, **clinical trial involvement** eg, patient information sheets, involvement in Trial Management Groups (TMG), **research work package involvement** eg, attendance at regular meetings and **other initiative** s e.g promoting the work of NexTGen, working with Early Career Researchers, gathering feedback on the role of advocacy and attending regular conferences about the work.
_“What a visit! I walked away with renewed vigour and confidence in these scientists conducting daily experiments to further the field and ultimately contribute to new immunotherapy treatments for kids with solid tumours. It was also yet another reminder of the value patient advocates can bring to scientific research”_
## **SARA WAKELING, CEO OF ALICE’S ARC**
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## **Exploring childrens & young people’s cancer webinar**
## **November 2024**
CRUK hosted a webinar on therapeutic discovery research. Speakers included Dr Yael Mosse from CHOP, Dr Charles Keller from CCT-DI and Dr Laura Donovan from UCL Sara Wakeling also joined them to provide the patient perspective on the topic.
## **Alice’s Arc EpSSG Winter Meeting attendance**
## **Paris, 2024**
Alice’s Arc attended the annual EpSSG Winter Meeting in Paris. We fund a Project Manager and Statistician for this important pediatric sarcoma organisation. This annual meeting is an opportunity to hear clinical trial, committee and organisational updates as well as, networking amongst the pediatric sarcoma community.
## **Patient Advocacy on Cancer Grand Challenge NexTGen**
## **Ongoing**
- Continued involvement in the advocacy team as part of the Cancer Grand Challenges initiative for the NexTGen team. This project is tackling the problem of solid tumours in children and looking to develop next generation T-cell therapies, starting with rhabdomyosarcoma, ewings sarcoma and certain brain tumours. The first clinical trials testing the safety of these T-cells in patients opened for recruitment in early 2026, more on these in the next edition.
Work over the year has primarily concentrated on the preparations for the opening of the clinical trials. This has involved the co-development of patient information sheets tailored for parents, teenagers and younger children, explaining complex science and trial processes with age-appropriate language and cartoon illustrations. The UK version has received endorsement from the UK Gene Therapy Advisory Committee who described them as a ‘gold standard’ for paediatric clinical trial communication. This has also involved communications planning, related video explainers, consulting on capturing & presenting data to the parent/patient community and attending the annual in-person conference and the virtual update conference.
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## **Fundraising Highlights**
## **GREAT NORTH RUN 2025**
On the 7th September 2025, 105 runners from 11 Arcs (For Alice, Ethan, Neive, Olivia, Ellie, Sophia, Elsa, Oliver, Maggie, Elsie and Jessica) and other families impacted by RMS participated in this iconic UK half marathon comprising 60,000 runners. This was our largest presence at this event and we were gold partners. We are so grateful to all those who were part of this – from runners, supporters and donors. What a great amount raised and what a super community occasion.
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£80k
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‘GO GOLD’ EVENT
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On Saturday 22nd March 2025 we marked 10 years of Alice’s Arc. We chose the word ‘marking’ carefully because the truth is most people in the room would prefer not to be having to support such a poignant cause. However, I can’t thank the 210 people who attended enough. 20 families impacted by rhabdomyosarcoma, 25 scientists and medical professionals, corporate supporters GPIM , Ark Underwriting and Enfuse and so many friends of the Arcs and the charity.
Together, we went gold. Together, we enjoyed the band from Babel Brass. Together, we tried our luck on the casino from Mock Vegas. Together, we drank, ate, danced and enjoyed the hospitality of M Restaurants. Our community strengthened connections and reinforced our resolve to collectively achieve our mission to change the story for those diagnosed with rhabdomyosarcoma in the future.
And the corporate sponsorship, ticket sales, roulette raffle, casino and subsequent donations mean our total is closing in on £35K!!!
We certainly showed what a force we are together and we won’t stop. We are bonded by tragedy, an army who will bring about change.
**£35k**
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## **PROFESSIONAL RESPONSE 24 HOUR CYCLE FOR SOPHIA’S ARC**
The team from Professional Response Couriers took part in a 24 hour Cyclethon for Sophia. They arranged this fundraiser following the news that Sophia had relapsed. Their efforts **£5.7k** were rewarded with incredible donations amounting to £5.7K.
**FLAUDENFEST FOR JESSICA’S ARC £6k** FlaudenFest live music festival event continues to support Jessica’s Arc annually and this year the event raised an enormous £6K.
## **ELSA’S ARC RELAY**
To honour Elsa’s five year anniversary of her death on April 14th 2020, a team of her **£10.5k** supporters participated in a fundraising relay involving multiple events across the UK. Initiatives included - cycling, walking, dog-walks, the London Marathon, Elsa’s rainbow café, climbing the three peaks and much more! Elsa’s baton was also lovingly designed and used to connect everything together. The event began on the 14th April 2025 and lasted till June 2025.
What an outpouring of love and support from Elsa’s community. Elsa Florence McGee, Forever 6.
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£13k FABULOUS FUNDRAISING
FROM OLIVIA’S ARC
Olivia’s Arc have been busy fundraising over the year.
Olivia’s love of horses and the colour, purple,
regularly comes through in the events run by her
family and community.
Olivia Eyre’s Purple Pony Show Jumping
This fabulous day of showjumping, complete with £3.6k
a design your own jump competition has now
become an annual fundraising event in honour of Olivia.
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## **Skydive**
To mark Olivia’s Mum’s birthday both her parents took part in a Skydive in memory of Olivia.
**£2k £3.3k £1.6k**
## **OliviaFest**
A family fun day known as OliviaFest was held in July 2025. The festival involved a dog show, stalls, entertainment, and children’s activities. Numerous Olivia’s Arc merchandise was also on sale. What a celebration in true Olivia style!
## **Olivia Eyre Showjumping Show**
This Showjumping day in honour of Olivia was held on 25th August 2024 and again demonstrated Olivia’s love of horses.
## **Olivia’s Bingo**
A bingo night was hosted at Pickering Rec Club with **£2.9k** great prizes on offer.
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## **DAISY’S ARC FUNDRAISING**
- Global Technology Networks (GTN) are partnering with Daisy’s Arc having been touched by Daisy’s story. They kicked off their fundraising with “Team GTN Miles for Daisy” taking place between January to June 2025 raising £6.2K
- Holy Rood Parish Church Watford raised £1.8K
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£8k
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- Beaconsfield Musical & Operatic Society promoted Daisy’s Arc and raised £688 during their performances of Beauty and the Beast in November 2024.
## **TOMMY’S ARC, WITHAM HALL SCHOOL SUMMER BALL**
Tommy’s school hosted a summer ball as part of their support programme for Tommy’s Arc. The evening brought together the school community and comprised dinner, dancing, a silent auction and raffle, raising over £20K in hour of Tommy who was diagnosed in 2021 and is now off treatment.
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£20k
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## **COMMUNITY SUPPORT**
We are always grateful for the great support we receive from schools where a pupil may have been diagnosed with rhabdomyosarcoma or a friend of a child with rhabdomyosarcoma choses to seek support from their school to run a fundraiser. This year we are thankful for the support of **Solefield School, Dulwich Cranbrook School, Walthamstow Hall School, Rickmansworth School, Yorke Meade, Swanbourne House School, Sacred Heart High School, The Stonehenge School, James Allen’s Girls School, Sacred Heart Primary School, East Ayton Primary School, St Teresa’s Catholic primary School** and **Hunmanby Primary School.**
Every school has provided significant donations via childhood cancer awareness month, being the school’s charity of the year and all kinds of fun, fundraising events.
## **CORPORATE SUPPORT**
We are incredibly grateful to the companies that have and continue to support us. Also, to all the companies that offer matched giving.
- **Lush** continue to partner via Dexter’s Arc through the sales of Dexter’s ‘Crackle’ bathbomb across their worldwide locations.
- This year we received £20K from **A&O Shearman** . This is an annual grant from the international law firm who have supported Alice’s Arc since inception.
- **Global Technology Networks (GTN)** have been inspired by Daisy’s Arc and have devised a programme of support & fundraising.
- **• Amber River** have donated £10K and are partnering via Elsa’s Arc.
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## **Other News**
## **Treats & Treasures Trolley at Great Ormond Street Hospital, London**
We continue to round the beautiful Treats & Treasures Trolley at Great Ormond Street Hospital. It is always a pleasure to involve our supporters, donors and other members of the childhood cancer community. During this period our corporate partner, Enfuse group kindly donated an Amazon voucher to stock the trolley and two members of staff came to round the trolley. Members of the Cancer Grand Challenges team have also rounded the trolley.
Alice’s Arc to partner with them to bring this to the UK. We are also honoured to have had so much support from volunteers and donors enabling this service to be provided at no cost to the charity.
This initiative is hugely motivating reminding us the importance of working for children with cancer.
As a reminder, the trolley contains all kinds of treats and treasures to help parents, siblings and the children diagnosed get through hospital stays and day visits. The trolley is rounded on the wards on a weekly basis.
This was inspired by the Evan Foundation, based in the USA who developed this idea and now have treats and treasures across 38 locations in the US and Canada. It is a great pleasure for
## **Alice’s Arc Participates in The Government Children & Young People (CYP) Cancer taskforce**
We attended a series of meetings as part of the charity sub-group formulated to help inform and devise recommendations as part of the CYP chapter of the UK’s newly formulated Cancer plan. It was a pleasure to work alongside CCLG, Solving Kids Cancer, Young Lives v Cancer and Teenage Cancer Trust.
Our Trustee and founder of Freddie’s Arc, Natalie Carpenter was also a member of the Patient Experience group of the taskforce which ensured the patient voice was also embedded in the recommendations.
The plan was published on World Cancer Day in February 2026. We will cover this in more detail in our next Annual Report.
## **The Language of Cancer**
Daisy’s Arc have raised the critical issue of language around cancer. They have been advocating for change
In May 2025, Chiara, Daisy’s Mum & Alan, Daisy’s Dad participated in an interview with the NHS trust for Dying Matter’s week and, as a result, attended two BBC radio (BBC2 with Jeremy Vine & BBC3CR with Andy Collins) interviews to discuss the issues. This also led to online BBC coverage headlined ‘Our child did not ‘lose cancer battle’—parents.
## The themes they highlight are as follows:
Change the term “chemotherapy cycles” to Chemotherapy treatments. The word cycle suggests something never ends. It would be helpful to focus patients on their treatment #1,#2,#3... Calling it treatment is telling a different story about treating the disease. It is a positive message to the individual going through the cancer journey.
The wording around “battle with cancer” should in our opinion change for “journey with cancer” acknowledging this is a journey with a start, an end, stops along the way but most importantly a destination, that being a cure.
VERY IMPORTANT, the wording around “winning and losing the battle with cancer”. The language used in this context simply doesn’t apply. Every patient is trying their hardest to survive, the doctors are trying their hardest to give the best quality of life possible. As a society we need to shift the focus on who is really loosing the battle, the lack of investment and resources needs changing.
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## **The Future**
We have exciting and ambitious plans for the year ahead and will focus on the delivery of our mission to find a cure and better treatments for rhabdomyosarcoma, whilst supporting families going through this journey.
**Family support:** Continue to build & care for our community of RMS families, tailored to meet the needs of families at any stage – diagnosis, treatment, remission, palliative and loss. Ensure our community is well-supported and create platforms to come together face to face.
**Focus on our research:** review our rhabdomyosarcoma research portfolio & ensure it delivers: Pursue new opportunities for projects in areas such as fusion positive rhabdomyosarcoma where outcomes are dismal. Broaden the portfolio to incorporate clinical translation. Continue to implement robust processes around the management of the research portfolio and securing the most impactful research. Identify meaningful communication mechanisms for reporting research findings.
**Expand fundraising reach:** maintain relationships with current supporters and attract new sponsors. Devise a corporate & partnerships strategy.
**Robust & rigorous charity management:** constantly review systems, policies and operational management to ensure continued efficient & effective running of the charity.
**Build the arcs platform:** This is central to the strategy of Alice’s Arc. Continue to roll out and embed our approach to building family networks via the Arcs. Ensure that funds are directed into research that is meaningful to patients and driven by questions raised through our network. Continue to develop the model internationally.
(A Charitable Incorporated Organisation)
## **Report and financial statements** For the Year Ended 30 September 2025
## **Engage RMS families with advocacy &**
**research:** Continue to produce videos, interviews, education sessions and tools that help communicate findings and enhance understanding of the rhabdomyosarcoma research landscape. Create further opportunities for family research engagement days. Encourage families to get involved in PPI/E groups.
Charity number 1164253
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## Alice’s Arc
## Report of the trustees for the year ended 30 September 2025
The trustees present its report and financial statements, examined by an independent examiner, for the year ended 30 September 2025.
## Reference and administrative Information
Charity Name: Alice’s Arc Charity registration number: 1164253 Registered Office and operational address: High Beech 53 Kippington Road Sevenoaks TN13 2LL
## Our aims and objectives
## Purposes and aims
Our charity’s purpose as set out in the objects contained in the charity’s constitution is: the relief of sickness of people suffering from childhood cancers in particular but not limited to sarcomas in particular but not exclusively by:
1. Funding research into such cancers by working with institutions like the Institute of Cancer Research, Great Ormond Street Hospital, Wellcome Sanger Institute, University College London, University of Oxford, University of Birmingham, University of York, and the Royal Marsden to fund teams and equipment required to undertake research;
2. Funding the purchase of medicine (as recommended by doctors), equipment, toys, facilities and/or services not provided by national health services or otherwise provided;
3. Introducing best practices between jurisdictions for treatment and/or easing the suffering of patients and/or their families;
## Trustees
4. Raising awareness of such cancers through social and other media, and/or
Mrs Sara Alison Louise Wakeling – Chief Executive Mr David Andrew Wakeling Mr Nick Richard Wakeling Dr Melvin Lee Kiang Chua Dr Natalie Carpenter
## Independent examiner
Alice Hagell
## Bankers
Metro Bank, 1 Southampton Row, London WC1B 5HA CAF Bank, 25 Kings Hill Avenue, Kings Hill, West Malling, Kent ME19 4JQ Nationwide, Nationwide House, Pipers Way, Swindon SN38 1NW
5. Assisting in the knowledge and understanding of such cancers, with an additional focus area of supporting and creating a community for families with rhabdomyosarcoma, at any point of the disease trajectory.
Our aims fully reflect the purpose that the charity was set up to further and the public benefit of helping children with childhood cancers, in particular sarcomas, as a class, and their families.
## Ensuring our work delivers our aims
We review our aims, objectives and activities each year. This review looks at what we have achieved and the outcomes of our work in the period to 30 September 2025. The review looks at the success of each key activity and the benefits they have brought to those groups of people we are set up to help.
The review also helps us ensure our aims, objectives and activities remained focused on our stated purpose. We have referred to the guidance contained in the Charity Commission’s general guidance on public benefit when reviewing our aims and objectives and in planning our future activities. In particular, the trustees consider how planned activities will contribute to the aims and objectives they have set.
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## How our activities deliver public benefit
## The focus of our work
Our main objectives for the year have been focussed on helping improve the outcomes and experience on treatment for children with childhood cancers, in particular Rhabdomyosarcoma, as a class, and their families. The strategies we used to meet these objectives included:
- a. Devising and funding a diverse portfolio of rhabdomyosarcoma research projects. These projects include work to understand the fusion genes, different subtypes and the biomarkers driving aggressive forms of the disease, identifying drugs to target these biomarkers in an individualised approach, devising immunotherapy treatment options via CAR T-cell therapy for rhabdomyosarcoma, pre-clinical work towards devising an mRNA vaccine for rhabdomyosarcoma, using liquid biopsies in the detection and prediction of rhabdomyosarcoma, understanding relapsed and refractory rhabdomyosarcoma and understanding more about the tumour micro environment and how it influences tumour behaviour. In addition, we are co-funding work to understand the decisions facing parents at the point of relapse and the provision of information on potential treatments at this stage. We hope this will lead to a provision of an IT resource for families and clinicians. Other projects include understanding the molecular changes that lead to relapsed or refractory rhabdomyosarcoma and sequencing retrospective and prospective tissue samples to help accelerate new treatments in the clinic.
- b. Raising awareness and lobbying for change. We have forged connections with other children’s cancer charities and are using our platform of Arcs to create a voice influencing the changes needed to ensure research into rhabdomyosarcoma can happen effectively. We have also joined a coalition of children’s cancer charities to help achieve this together. We are also members of a charity sub-committee offering input to the government Children and Young People Taskforce in order to identify recommendations to form part of the forthcoming National Cancer Plan.
Our main activities and who we try to help are described below. All our charitable activities focus on helping children with childhood cancers, in particular sarcomas, as a class (and their families) and are undertaken to further our charitable purpose for the public benefit.
## Who used and benefited from our services?
Over 160,000 children globally are diagnosed with cancer annually. This number is increasing year on year. Childhood cancers are complex; there are over 25 major types and over 100 subtypes. Childhood cancer research is vastly underfunded compared to that of adults. Research and development by pharmaceutical companies cover c60% of funding for adult cancer drugs. It is close to zero for that of children.
Our objects and funding limit the services we provide to children suffering from Rhabdomyosarcoma resident in the UK and the US, although the results of funded research will have consequences for more locations. However, we are forging international connections with professional bodies such as the EpSSG and families.
All our support is provided free. Equal access to our services among children with childhood sarcomas as a class and their families is an important issue for us. We believe equal access to our support is vital to our success.
- c. We have continued to sustain our fundraising activities during this period. This has been largely down to the creation of the Arcs platform and engaging new families who wish to fundraise in honour of their child’s journey with rhabdomyosarcoma. Communities come together and funds are pooled.
- d. Enhancing family well-being. We offer an online community and support group of rhabdomyosarcoma families at any point of the journey. In addition, we also provide wellbeing bags across multiple UK hospitals and are considering areas to make a difference to the parent experience such as sleep.
The charity has now raised or received commitments for over £5 million to date in incoming resources to meet disbursal and other commitments, over £500 thousand of which since 30 September 2025.
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## Financial review
Against the size and complexity of children cancer, it is challenging to progress on all of the objectives of Alice’s Arc. Nevertheless, the charity, with the aid of sound financial management and the support of its trustees and contacts generated a very positive financial outcome for the period, its tenth year in operation, with income of £787,843 (2024: £980,714) including Gift Aid. This enabled total disbursements of £561,394 (2024: £618,071): £250,000 to the Institute of Cancer Research, £129,510 to the University of Birmingham, £108,473 to University College London, £53,518 to Wellcome Sanger & UCL Cancer Institute, £16,543 to the University of York, and £3,350 to The European paediatric Soft Tissue Sarcoma Study Group (EpSSG), bringing total disbursements to cancer research organisations to the end of September 2025 to over £2.9 million. After these disbursements, total funds of the charity stood at £1,733,776 as at 30 September 2025 (2024: £1,582,949).
## Principal funding sources
The funding sources for Alice’s Arc are from individual and corporate donations. Funds of the charity raised by handmade cosmetics giant Lush, following the death of Dexter, are restricted to animal-free research. £318,434 was raised in the year to 30 September 2025 by Lush (2024: £200,833).
Alice’s Arc is registered with the Fundraising Regulator and with support from lawyers has developed a code of conduct with each Arc to require fundraising to be undertaken for the purpose of the objects of the charity and in compliance with the Fundraising Regulator’s Code of Fundraising Practice. Provisions include fundraising involving children, people in vulnerable circumstances, record keeping and advance notice of fundraising events. No fundraising complaints have been received.
## Investment policy
Most of the charity’s funds are currently expected to continue to be applied to clinical research in collaboration with cancer research organisations and, pending disbursement, the funds are invested short term with the charity’s bankers.
## Reserves policy
The Trustees have examined the charity’s requirements for reserves in light of the main risks to the organisation. Given the low day-to-day expenditure by the charity, the target is £20,000 in general funds. The reserves are needed to meet the working capital requirements of the charity and the Chief Executive is confident that at this level they would be able to continue the current activities of the charity. The present level of reserves available to the charity exceeds its target reserve level on this basis.
## Plans for future periods
The charity plans to continue the activities outlined above in the forthcoming years and continues to explore new projects. In addition to the £2.9 million research grants made in the periods to 30 September 2025, over £2 million has been committed subject to agreed milestones, primarily consisting of grants to the Institute of Cancer Research relating to plasticity, to Wellcome Sanger & UCL Cancer Institute relating to analysis of tumour samples retrospectively with the VIVO BioBank and prospectively on the FaR-RMS trial, and to University of Oxford for research into neoantigen vaccines. Given current assets, the charity’s trajectory and the conditionality and time horizon of these commitments, the trustees are confident they can be met through future fundraising to the extent not already funded.
## Structure, governance and management
## Governing document
Alice’s Arc is a Charitable Incorporated Organisation and was entered onto the Register of Charities on 4 November 2015 with Registered Charity Number 1164253. The charity was established under a Constitution which established the objects and powers of the charity. In the event of the charity being wound up, the trustees have no liability to contribute to its assets and no personal responsibility for settling its debts and liabilities.
## Recruitment and appointment of trustees
Under the requirements of the constitution there is no limit on the term of trustees. All trustees give their time voluntarily and received no benefits from the charity. No expenses were reclaimed from the charity in the year.
Due to the nature of childhood cancers much of the charity’s work inevitably focuses upon young people. The trustees seek to ensure that the needs of this group are appropriately served through the diversity of the trustee body with marketing, legal, financial and medical skills well represented. In the event of particular skills being lost due to retirements, individuals will be approached to offer themselves as trustees.
Some of the trustees and their family members have also in their personal capacity provided donations to the charity in the pursuit of its objectives.
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## Trustee induction and training
Including co-founders, most trustees are familiar with the practical work of the charity. New trustees will be made familiar of the charity’s activities and the context within which it operates by the Chief Executive, including the obligations of trustees, the main documents which set out the operational framework for the charity including its constitution, the current financial position, and the future plans and objectives of the charity.
## Risk management
The trustees review the major risks to which the charity is exposed on at least a yearly basis. These risks are assessed as limited, for example given that the charity employs no staff. Where appropriate, systems or procedures have been established to mitigate the external risks the charity faces, for example through the use of collaboration with established institutions such as the Institute of Cancer Research. Internal control risks are minimised by the implementation of procedures for authorisation of all material financial transactions.
## Organisational structure
Alice’s Arc has between three and 12 trustees who meet quarterly and are responsible for the strategic direction and policy of the charity. At present the charity has five trustees from a variety of professional backgrounds relevant to the work of the charity. There is no Company Secretary. A scheme of delegation is in place and day to day responsibility for the charity’s activities rest with the Chief Executive who is also a trustee.
## Related parties
No trustee or other person related to the charity had any other personal interest in any contract or transaction entered into by the charity during the year.
## Responsibilities of the trustees
The trustees are required to prepare financial statements for each financial year which give a true and fair view of the state of the affairs of the charity as at the balance sheet date and of its incoming resources and application of resources, including income and expenditure, for the financial year. In preparing those financial statements, the trustees should follow best practice and:
- select suitable accounting policies and then apply them consistently;
- make judgements and estimates that are reasonable and prudent; and
- prepare the financial statements on the going concern basis unless it is not appropriate to assume that the charity will continue on that basis.
The trustees are responsible for maintaining proper accounting records which disclose with reasonable accuracy at any time the financial position of the charity and to enable them to ensure that the financial statements comply with the Statement of Recommended Practice: Accounting and Reporting by Charities (FRS 102). The trustees are also responsible for safeguarding the assets of the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.
## Trustees
The trustees of Alice’s Arc, who are trustees for the purpose of charity law, who served during the year and up to the date of this report are set out on page [42]. We certify that, so far as we are aware:
- the accounts present a true and fair view and the accounting policies are adopted as outlined in the notes;
- there have been no changes in accounting policy nor estimates nor material prior year errors;
- there are no material uncertainties related to events or conditions that cast significant doubt on the charity’s ability to continue as a going concern;
- there is no relevant audit information of which the charity’s independent examiner is unaware; and
- we have taken all the steps that we ought to have taken in order to make ourselves aware of any relevant audit information and to establish that the charity’s independent examiner is aware of that information.
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## Independent examiner
Alice Hagell was appointed as the charity’s examiner. This report has been prepared in accordance with the Statement of Recommended Practice: Accounting and Reporting by Charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) effective from 1 January 2019.
Approved by the trustees on 15 June 2026 and signed on its behalf by:
Mrs Sara Wakeling (Chief Executive)
___________________
Statement of financial activities (including income & expenditure account) for the year ended 30 September 2025
**----- Start of picture text -----**
Unrestricted Restricted Total Total
Funds to Funds to Funds to Funds to
Notes
30/9/2025 30/9/2025 30/9/2025 30/9/2024
(£) £ £ £
Incoming resources
Voluntary income: donations 2 427,335 318,434 745,769 937,032
Gift Aid on donations 7 7,500 - 7,500 6,887
Investment income 14,769 19,805 34,574 36,795
Total incoming resources 449,604 338,239 787,843 980,714
Resources expended
Costs of generating 3 74,540 - 74,540 9,610
voluntary income
Charitable activities 3 507,876 53,518 561,394 618,071
Governance costs 3 555 527 1,082 1,993
Total resources expended 582,971 54,045 637,016 629,674
Net Income for the year (133,367) 284,194 150,827 351,040
Reconciliation of funds
Total funds brought forward 837,750 745,199 1,582,949 1,231,909
Total funds carried forward 704,383 1,029,393 1,733,776 1,582,949
**----- End of picture text -----**
All incoming resources and resources expended derive from continuing activities.
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Balance sheet as at 30 September 2025
**----- Start of picture text -----**
30/9/2025 30/9/2024
Notes
£ £
Fixed Assets - -
Current Assets 1,733,776 1,582,949
**----- End of picture text -----**
|Debtors|7|-|10|
|---|---|---|---|
|Cash at bank and in hand||1,733,776|1,582,939|
|||||
|Creditors||-|-|
|**Net Assets**||**1,582,949**|**1,582,949**|
|||||
|General Funds|8|704,383|837,750|
|Restricted Funds|8|1,029,393|745,199|
|**Total Funds**||**1,733,776**|**1,582,949**|
Statement of cash flows for the year ended 30 September 2025
||**30/9/2025**|**30/9/2024**|
|---|---|---|
||**£**|**£**|
|Net income/(expenditure)|150,827|351,040|
|Adjustment for: Dividends, interest, rents|(34,574)|(36,796)|
|Change in debtors|10|6,143|
|Change in creditors|-|(8,100)|
|**Cash fow from operating activities**|**116,263**|**312,287**|
||||
|Dividends, interest and rents|34,574|36,796|
||||
|**Cash fow from investing activities**|**34,574**|**36,796**|
||||
|**Cash from fnancing activities**|**-**|**-**|
||||
|Beginning of the reporting period|1,582,939|1,233,856|
|End of the reporting period|1,733,776|1,585,939|
||||
|**Change in cash and cash equivalents**|**150,837**|**349,083**|
All cash and cash equivalents is held as cash in hand.
These accounts are prepared in accordance with the Statement of Recommended Practice: Accounting and Reporting by Charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) effective from 1 January 2019.
Approved by the trustees on 15 June 2026 and signed on its behalf by:
Mr Nick Wakeling (Treasurer)
___________________
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## Notes forming part of the financial statements for the year ended 30 September 2024
- Incoming resources from charitable trading activity are accounted for when earned.
- Incoming resources from grants, where related to performance and specific deliverables, are accounted for as the charity earns the right to consideration by its performance.
## **(d) Resources expended**
## 1. Accounting policies
The principal accounting policies are summarised below. The accounting policies have been applied consistently throughout the year.
## **(a) Basis of accounting**
The financial statements have been prepared under the historical cost convention, as modified by the inclusion of any fixed asset investments at market value, and in accordance with the Statement of Recommended Practice: Accounting and Reporting by Charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) effective from 1 January 2019.
## **(b) Fund accounting**
- All donations received are unrestricted other than funds raised by Lush.
- Unrestricted funds are available for use at the discretion of the trustees in furtherance of the general objectives of the charity. Unrestricted funds include any revaluation reserve representing any restatement of investment assets at market values.
- Any designated funds are unrestricted funds earmarked by the trustees for particular purposes.
Expenditure is recognised on an accrual basis as a liability is incurred. Expenditure includes any VAT which cannot be fully recovered, and is reported as part of the expenditure to which it relates:
- Costs of generating funds comprise the costs associated with attracting voluntary income and the costs of trading for fundraising purposes.
- Charitable expenditure comprises those costs incurred by the charity in the delivery of its activities and services for its beneficiaries. It includes both costs that can be allocated directly to such activities and those costs of an indirect nature necessary to support them.
- Governance costs include those costs associated with meeting the constitutional and statutory requirements of the charity and include any audit fees and costs linked to the strategic management of the charity.
- All costs are allocated between the expenditure categories of the Statement of Financial Activities on a basis designed to reflect the use of the resource.
## **(e) Fixed assets**
Any fixed assets (excluding investments) are stated at cost less accumulated depreciation. Any costs of minor additions or those costing below £1,000 are not capitalised. Any depreciation is provided at rates calculated to write off the cost of each asset over its expected useful life, estimated at four years. Any impairment reviews are carried out as and when evidence comes to light that that the recoverable amount of a functional fixed asset is below its net book value due to damage, obsolescence or other relevant factors.
- Restricted funds are subjected to restrictions on their expenditure imposed by the donor.
Any investments held as fixed assets are revalued at mid-market value at the balance sheet date and the gain or loss taken to the Statement of Financial Activities.
## **(c) Incoming resources**
All incoming resources are included in the statement of financial activities when the charity is entitled to, and virtually certain to receive, the income and the amount can be quantified with reasonable accuracy. The following policies are applied to particular categories of income:
- Voluntary income is received by way of grants, donations and gifts and is included in full in the Statement of Financial Activities when receivable. Grants, where entitlement is not conditional on the delivery of a specific performance by the charity, are recognised when the charity becomes unconditionally entitled to the grant.
- Donated services and facilities are included at the value to the charity where this can be quantified. The value of services provided by any volunteers has not been included in these accounts.
- Investment income is included when receivable.
## **(f) Offsetting**
There has been no offsetting of assets and liabilities, or income and expenses other than offsetting of bank interest and bank fees, considered immaterial.
## 2. Donations and gift aid
Gift Aid collected by fundraising platforms rather than directly by the charity is included as voluntary income: donations. Gift Aid receivable directly by the charity is included in income when there is a valid declaration from the donor or the amount of donation falls below Gift Aid Small Donation Scheme (GASDS) levels. Any Gift Aid amount recovered on a donation is considered to be part of that gift and is treated as an addition to the same fund as the initial donation unless the donor or the terms of the appeal have specified otherwise.
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## 3. Total resources expended
£74,540 costs of generating voluntary income (2024 equivalent: £9,610) comprises costs of fundraising events and promotions, in particular for places on the Great North Run (£21,715), Royal Parks Half Marathon (£15,100) and London Marathon (£7,043), and venue hire and other costs for the charity’s fundraisers (£13,337).
£1,082 governance costs (2024 equivalent: £1,993) comprise IT, insurance, postage, travel, and other miscellaneous items.
## 7. Debtors
Nil debtors (2024: £10) reflect in-year claim of Gift Aid and GASDS on donations received, to which the charity was entitled and expected to recover from HMRC. £7,500 Gift Aid and GASDS was claimed/received during the year to 30 September 2025, and £105 was written off to expenses including the £10 recognised in debtors as at 30 September 2024.
## 8. Unrestricted and restricted funds
## **Outline summary of fund movements**
£561,394 charitable activities (2024: £618,071) comprise: £250,000 to the Institute of Cancer Research, £129,510 to the University of Birmingham, £108,473 to University College London, £53,518 to Wellcome Sanger & UCL Cancer Institute, £16,543 to the University of York, and £3,350 to The European paediatric Soft Tissue Sarcoma Study Group (EpSSG)
## 4. Staff costs and numbers
There are no employees of the charity.
|**Fund**|**Balance**|**Income**|**Expenses**|**Transfers**|**Gains and**|**Balance**|
|---|---|---|---|---|---|---|
||**brought**||||**losses**|**carried**|
||**forward**|||||**forward**|
|**Unrestricted**|837,750|449,604|(582,971)|-|-|704,383|
|**Restricted**|745,199|338,239|(54,045)|-|-|1,029,393|
|**Total**|**1,582,949**|**787,843**|**(637,016)**|**-**|**-**|**1,733,776**|
## **Analysis of net assets between funds**
|**Fund**|**Current**|**Current**|**Net assets**|
|---|---|---|---|
||**assets**|**liabilities**||
|**Unrestricted**|704,383|0|704,383|
|**Restricted**|1,029,393|0|1,029,393|
|**Total**|**1,733,776**|**0**|**1,733,776**|
## 5. Trustee remuneration & related party transactions
No trustee received any remuneration during the year and no travel costs were reimbursed to them. No trustee or other person related to the charity had any personal interest in any contract or transaction entered into by the charity during the year.
## 6. Taxation
Alice’s Arc obtained tax registration from HMRC on 10 December 2015. As a charity, Alice’s Arc is exempt from tax on income and gains falling within section 505 of the Taxes Act 1988 or section 256 of the Taxation of Chargeable Gains Act 1992 to the extent that these are applied to its charitable objects. No tax charges have arisen in the charity.
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## Independent examiner’s report to the trustees of Alice’s Arc
I report on the accounts of the Trust for the year ended 30 September 2025, which are set out on [pages 51 to 57].
## Independent examiner’s statement
Since the charity’s gross income exceeded £250,000 your examiner must be a member of a body listed in section 145 of the 2011 Act. I confirm that I am qualified to undertake the examination because I am a member of the Institute of Chartered Accountants in England and Wales (ICAEW), which is one of the listed bodies.
## Respective responsibilities of trustees and examiner
The charity’s trustees are responsible for the preparation of the accounts. The charity’s trustees consider that an audit is not required for this year under section 144(2) of the Charities Act 2011 (the 2011 Act) and that an independent examination is needed.
In connection with my examination, no matter has come to my attention:
1. which gives me reasonable cause to believe that in any material respect the requirements:
- to keep accounting records in accordance with section 130 of the 2011 Act and
- It is my responsibility to:
- examine the accounts under section 145 of the 2011 Act
- follow the procedures laid down in the general Directions given by the commission under section 145(5)(b) of the 2011 Act
- to prepare accounts which accord with the accounting records and comply with the accounting requirements of the 2011 Act have not been met or
2. to which, in my opinion, attention should be drawn in order to enable a proper understanding of the accounts to be reached.
- state whether particular matters have come to my attention
Name: Alice Hagell
## Basis of independent examiner’s report
My examination was carried out in accordance with the general Directions given by the Charity Commission. An examination includes a review of the accounting records kept by the charity and a comparison of the accounts presented with those records. It also includes consideration of any unusual items or disclosures in the accounts, and seeking explanations from the trustees concerning any such matters. The procedures undertaken do not provide all the evidence that would be required in an audit and consequently no opinion is given as to whether the accounts present a ‘true and fair view’ and the report is limited to those matters set out in the next statement.
Relevant professional qualification or body: ICAEW
Address: 1 Southampton Row London WC1B 5HA
Date: 15 June 2026
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Please get in touch:
alicesarc.org @alicesarccurerhabdomyosarcoma @alicesarc @alices_arc
078 8070 1217 sara.wakeling@alicesarc.org
CDD-0526-134132_ADD-142238