Alice’s Arc Annual Report

Alice’s Arc Annual Report2018–2019

Charity number 1164253

Alice and Sara Wakeling

2 Alice’s Arc Annual Report | 2020

Contents

Annual reviewIntroduction – a message from our CEO 5Our goals 6About rhabdomyosarcoma 7Our year at a glance 8–14 – Research focus – Fundraising highlights – In memory – Childhood cancer awareness month – Other news

Holding Freddie in mind 15–16The future 17

Financial Statement and NotesOur aims and objectives 21*QY�QWT�CEVKXKVKGU�FGNKXGT�RWDNKE�DGPGƂV 23Financial review 24Plans for future periods 25Structure, governance and management 25Responsibilities of the trustees 27Independent person 285VCVGOGPV�QH�ƂPCPEKCN�CEVKXKVKGU 29Notes 31–34

Charity number 1164253

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4 Alice’s Arc Annual Report | 2020

A year with rhabdomyosarcoma always brings with it extreme highs and lows.

From a personal perspective, this has been the case with Alice’s rhabdomyosarcoma journey. At the beginning of this period, Alice was in the clear CHVGT�GHHGEVKXG�ƂTUV�NKPG�TGNCRUG�VTGCVOGPV�KPXQNXKPI�chemotherapy and a surgical/radiation procedure in Amsterdam, known as AMORE. However, in August 2019, her cancer returned aggressively in a new location and we were faced with exploring curative treatment options which frankly do not exist when it comes to a second relapse.

We are honoured to have so many relationships with families who experience rhabdomyosarcoma. Our network is continually growing and we have met many new families and sustained ongoing friendships. We have met newly diagnosed families, sadly more children have died and more have received the news that they have relapsed. Thankfully, we have also seen children move into remission following successful treatment and stayed in touch with long-term survivors, who have to cope with the long-term impacts of their treatments.

9G�JQUVGF�QWT�ƂTUV�#NKEGoU�#TE�NCTIG�UECNG�HWPFTCKUKPI�GXGPV�KP�(GDTWCT[��C�WPKSWG�ƂTG�YCNM��YJGTG�over 45 individuals walked across hot, burning embers in front of a large crowd. This spectacle raised a tremendous £18K.

Research is at the heart of our mission to make changes for children diagnosed with rhabdomyosarcoma in the future. This year, our funds raised enabled the appointment of two new rhabdomyosarcoma researchers at the Institute of Cancer Research (ICR). Monies were also used in the investigation of two new drugs that will be used in a new frontline and relapse clinical trial to be launched in 2020.

Everything that we do at Alice’s Arc is driven by all the children and adolescents who have bravely fought rhabdomyosarcoma. You inspire us and give us the passion to make much needed changes for children diagnosed in the future. There is much work to be done and we have ambitious plans to expand our offering in the future.

Finally, we would like to thank all those who have supported us this year. We couldn’t do it without you.

Introduction

A message from our CEO

Sara Wakeling

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Our goals

č��Vi½Ã�čÀV��Ã�L>ÌÌ��}�Ì��w�`�>�VÕÀi�>�`�LiÌÌiÀ�ÌÀi>Ì�i�ÌÃ�v�À�V��`Ài��Ü�Ì��À�>L`��Þ�Ã>ÀV��>°�7i�Ü>�Ì�Ì��«À�Ûi��ÕÌV��iÃ�v�À�Ì�iÃi�V��`Ài��>�`�Li�>��>��À�Ã�ÕÀVi��v�ÃÕ««�ÀÌ�Ì��v>��iÃ�}��}�Ì�À�Õ}��Ì��Ã��ÕÀ�iÞ°�

We do this by collaborating with centres of excellence such as the Institute of Cancer Research (ICR), Great Ormond Street Hospital (GOSH) and the Royal Marsden Hospital (RMH). The ICR, together with its clinical partner, The Royal Marsden NHS Foundation Trust, forms the largest comprehensive cancer centre in Europe. GOSH is the largest paediatric cancer centre in Europe.

Through our work we aim to raise awareness of childhood cancer by working with research centres and other cancer charities. We lobby together to make changes for the future that can help to improve the understanding of rhabdomyosarcoma in order to increase treatment options and ensure that children have access to the most appropriate drugs to target the disease effectively.

Alice’s Arc Annual Report | 20206

About rhabdomyosarcoma

Rhabdomyosarcoma is a rare and >}}ÀiÃÃ�Ûi�ÌÞ«i��v�V��`��`�V>�ViÀ° It is the most common soft tissue sarcoma occurring in children and they tend to arise in muscle or ƂDTQWU�VKUUWG�

60-70 children in the UK are diagnosed with it each year.

this is the most common type but usually occurs in Ì�i�wÀÃÌ�x�Þi>ÀÃ��v��vi

it commonly presents in head, neck, bladder, vagina, prostate or testicles

cells look like developing muscle cells like a 6-8 week embryo

make up 60-70% �v�>��,�-�V>ÃiÃ

Rhabdomyosarcoma has two main types:

Embryonal rhabdomyosarcoma ,�-®

Alveolar rhabdomyosarcoma č,�-®

�Ì�>vviVÌÃ�>��>}i�}À�Õ«Ã]� more common in young adolescents

tends to occur in large muscles like the arms, trunk and legs

cells look like normal muscle cells in a £ä�Üii��viÌÕÃ

�Ì�}À�ÜÃ�v>ÃÌiÀ�Ì�>�� ,�-�>�`�ÀiµÕ�ÀiÃ�more intense treatment

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Our year at a glance

Carolina Bernauer in the lab Olivia Ruhen in the lab

Research focus

£171,153

`��>Ìi`�Ì��*À�viÃÃ�À��>�iÌ�-��«�iÞ½Ã�À�>L`��Þ�Ã>ÀV��> ÀiÃi>ÀV��Ìi>��>Ì�Ì�i��ÃÌ�ÌÕÌi��v�>�ViÀ�,iÃi>ÀV��,®°

To hire Olivia Ruhen in a Postdoc research role

To enable the recruitment of �À�>À��>�iÀ�>ÕiÀ, a Clinical Research Fellow.

To cover the costs of laboratory consumables/reagents needed to conduct the rhabdomyosarcoma research


Research focus

Preclinical testing in conjunction with a drug company of a drug that inhibits an enzyme called PARP. The team established that this drug can make rhabdomyosarcoma cells more sensitive to irradiation treatment. Current investigations are looking at quantifying how effective different dose levels of the drug are when combined with radiation. In addition, there is an exploration of the associated molecular mechanisms that explain this sensitivity with the aim of exploiting this further.

Another promising drug has also been tested. This drug inhibits the molecular target PLK1 and has been combined with the backbone chemotherapy agents vincristine and irinotecan (VI).

A US collaboration determining the frequency of genetic mutations in rhabdomyosarcoma cells that may provide new therapeutic VCTIGVU��6JGUG�ƂPFKPIU�CTG�DGKPI�UJCTGF�YKVJ�NCRI (National Cancer Research Institute), EpSSG (European Paediatric Soft Tissue Sarcoma Study Group) and ITTC (Innovative Therapies for Childhood Cancers)

��ÌÀ�LÕÌi`�Ì��iÜ�`ÀÕ}�ÌiÃÌ��}�}��}�Ì�Ü>À`Ã�Ì�i�`iÃ�}��v��>,�,�-]�Ì�i��iÜ��ÌiÀ�>Ì��>��À�>L`��Þ�Ã>ÀV��>�V��V>��ÌÀ�>�]�L�Ì��v�À�vÀ��Ì��i�>�`�Ài�>«Ãi°

��ÛiÃÌ�}>Ì��}�vÕ�`��}�«>ÀÌ��v�>��>��À�new immunotherapy research project ÕÃ��}�>À�/�i��Ã�Ì��ÌÀi>Ì�Ài�>«Ãi`�rhabdomyosarcoma.

Great Ormond Street Hospital are leading on this project.

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raised through 14 runners participating ��Ì�i�,�Þ>��*>À�Ã��>�v��>À>Ì��Óä£�°��>�Þ��v�Ì�iÃi�ÀÕ��iÀÃ�ÜiÀi��ÃÕ««�ÀÌ��v�>��ÌÌ�i�L�Þ�V>��i`��>Ã«>À`�VÕÀÀi�Ì�Þ�receiving treatment

Fundraising highlights

£37KNearly

Fundraising highlights

£18KÀ>�Ãi`�Ì�À�Õ}��ÕÀ�wÀÃÌ��>��À� č��Vi½Ã�čÀV�vÕ�`À>�Ã��}�iÛi�Ì� q�>�wÀi�Ü>��>VÀ�ÃÃ�LÕÀ��}�i�LiÀÃ

À>�Ãi`�LÞ�ÃÕ««�ÀÌiÀÃ��v��iÃÃ�V>��>VµÕii�]�`�>}��Ãi`��Õ�i�Óä£n��V�Õ`��}��i��`�Û�`Õ>��V��««��}��iÀ��>�À��vv£20K


Nearly £30K securedÛ�>�}i�iÀ�ÕÃ�ÃÕ««�ÀÌ�vÀ��ÕÀ�

corporate partners – Allen & Overy annual contribution� q� /��À`�À�`}i��ÀÕ��V�>À�ÌÞ�

week interviews

via other sporting events such as Ì�i��`��>À>Ì��]�,�Õ}��,Õ��iÀ]� /�Àii�*i>�Ã]�À�}�Ì��ÕÀ�,ÕÃ��,Õ�]�

À>�`Ã��>ÌV��ÞV��}�>�`�Ì�i� London Winter 10K.

Almost £10K raised

Awarded a £5K grantvÀ��Ì�i� `Ü>À`��ÃÌ��}��Õ�`>Ì��

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School’s Charity of the Year

v�À�-i«Ìi�LiÀ�Óä£��Ì��Õ�Þ�ÓäÓä

£9.3KÀ>�Ãi`�LÞ�>�Ìi>��vÀ�� /��À`�À�`}i��ÀÕ�� in their London to Paris 240 mile cycle ride

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£11.6KÀ>�Ãi`��i��ÀÞ��v��Ài``�i�>À«i�ÌiÀ

In memory

£18Kraised by Shane Wakeling in his epic VÞV��}��ÕÀ�iÞ�vÀ��>�`Ã� �`�Ì��"½�À�>ÌÃ��i��ÀÞ��v��Ài``�i�>À«i�ÌiÀ�Ü��`�i`��"VÌ�LiÀ�Óä£n

£4.5K>Ì�>�µÕ�âÉ>ÕVÌ��}�Ì��ÕÀ��v��Ì�i�*��i��Ý�Ü��«>ÃÃi`�>Ü>Þ��Õ�i�Óä£n


7>�Ì�>�ÃÌ�Ü��>��-V��>`�>�¼}��}��`½�v�À�childhood cancer day where children were invited to wear something gold or yellow and Ì>�i�«>ÀÌ��>�v>Ã��Ã��Ü�Ü�Ì��«À�âiÃ�v�À�Ì�i��ÃÌ��>}��>Ì�Ûi�>�`�}��ÌâÞ��ÕÌwÌÃ°

Walthamstow Hall School designed and sold gold ‘Alice bows’ to raise awareness �v�V��`��`�V>�ViÀ°

Childhood Cancer Awareness Month– September 2019

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Other news

č��Vi½Ã�čÀV�Ü>Ã�vi>ÌÕÀi`�� Ì�i��,½Ã��>}>â��i�-i>ÀV��Spring 2019 edition.

The article entitled ‘Inspired by Alice’ discusses who we are, what we do and how the ICR rhabdomyosarcoma research team has been using the funds we have donated.

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(EpSSG) in London, in December 2019. This will bring together international professionals including Doctors, Scientists, Radiologists and Parents to share information on clinical trials, research, challenges and VJG�HWVWTG��#NNGP��1XGT[��KPVGTPCVKQPCN�NCY�ƂTO�JCU�MKPFN[�CITGGF�VQ�JQUV the meeting at their London offce.

We created a marketing brochure to promote what the charity does and why and to use at relevant events.

7i�`�ÛiÀÃ�wi`��ÕÀ�vÕ�`À>�Ã��}�«�>Ìv�À�Ã to include Virgin Giving in order to provide supporters with a variety of options.

We increased our social media presence by opening an instagram account in addition to our facebook and twitter presence.

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The charity Alice’s Arc is funding ICR VIWIEVGL�XS�ĉRH�QSVI�XEVKIXIH�ERH�OMRHIV�XVIEXQIRXW�JSV�GLMPHVIR�[MXL�VLEFHSQ]SWEVGSQE��Sara and David Wakeling set up Alice’s Arc, inspired by their little girl Alice who, at the age of three, was diagnosed with stage 4 alveolar rhabdomyosarcoma in March 2015. She was given a 50/50 chance of survival. Alice relapsed in February 2018. In the four years since her diagnosis, Alice has been treated with a combination of chemotherapy, proton radiation, surgery and brachytherapy. She has undergone treatments in the UK, US and Amsterdam. She is now seven years old and is currently cancer free.

Rhabdomyosarcomas are the most common soft tissue sarcomas that occur in children. The tumours XIRH�XS�PSSO�PMOI�HIZIPSTMRK�QYWGPI�SV�ĉFVSYW�XMWWYI��[LMGL�GER�QEOI�HMEKRSWMW�LEVH�c8LIVI�EVI�EVSYRH��new cases in the UK each year.Throughout the family’s experiences of cancer, they became aware of the lack of funding for research into children’s cancers and especially XLI�WLSVXEKI�SJ�GPMRMGEP�XVMEPW�JSV�GLMPHVIR�SĈIVMRK�the latest treatments. And so Alice’s Arc was FSVR�[MXL�E�GSQQMXQIRX�XS�LIPT�ĉRH�E�GYVI�JSV�rhabdomyosarcoma with less toxic treatment options than are available to children today.

The charity has already donated more than £200,000 to drive the ICR’s rhabdomyosarcoma research forward, with plans to continue its support for years to come: “The money we raise now and in the future for the ICR will contribute to better treatments and, one day, a cure for children diagnosed with rhabdomyosarcoma.”The charity’s generosity is supporting research in Professor Janet Shipley’s laboratory to study the molecular biology of rhabdomyosarcomas and discover more targeted treatments. The charity is funding two research roles within the sarcoma team, along with the consumables needed for those scientists to undertake their vital work.

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Inspired by Alice

Knowing that I can contribute to the improvement of treatment of children with rhabdomyosarcoma is extremely rewarding and motivating. Alice’s Arc has given me the chance to do just this at the ICR with an exceptional team. I could not be more grateful for the opportunity.”

Carolina Bernauer, who has joined Professor Shipley’s team to take up one of the posts funded by Alice’s Arc

Alice was diagnosed with rhabdomyosarcoma at the age of three


“Watching Freddie meet the daily challenges of cancer was breath taking. He was fearless, resolved, determined, kind and loving. He found the fun in everything. He pushed himself as far as he could go and squeezed every drop of life out of each day. He was remarkable and showed me how I want to live my life.”

Natalie Carpenter – Freddie’s Mum

18 | 19

The charity Alice’s Arc is funding ICR VIWIEVGL�XS�ĉRH�QSVI�XEVKIXIH�ERH�OMRHIV�XVIEXQIRXW�JSV�GLMPHVIR�[MXL�VLEFHSQ]SWEVGSQE��Sara and David Wakeling set up Alice’s Arc, inspired by their little girl Alice who, at the age of three, was diagnosed with stage 4 alveolar rhabdomyosarcoma in March 2015. She was given a 50/50 chance of survival. Alice relapsed in February 2018. In the four years since her diagnosis, Alice has been treated with a combination of chemotherapy, proton radiation, surgery and brachytherapy. She has undergone treatments in the UK, US and Amsterdam. She is now seven years old and is currently cancer free.

Rhabdomyosarcomas are the most common soft tissue sarcomas that occur in children. The tumours XIRH�XS�PSSO�PMOI�HIZIPSTMRK�QYWGPI�SV�ĉFVSYW�XMWWYI��[LMGL�GER�QEOI�HMEKRSWMW�LEVH�c8LIVI�EVI�EVSYRH��new cases in the UK each year.Throughout the family’s experiences of cancer, they became aware of the lack of funding for research into children’s cancers and especially XLI�WLSVXEKI�SJ�GPMRMGEP�XVMEPW�JSV�GLMPHVIR�SĈIVMRK�the latest treatments. And so Alice’s Arc was FSVR�[MXL�E�GSQQMXQIRX�XS�LIPT�ĉRH�E�GYVI�JSV�rhabdomyosarcoma with less toxic treatment options than are available to children today.

The charity has already donated more than £200,000 to drive the ICR’s rhabdomyosarcoma research forward, with plans to continue its support for years to come: “The money we raise now and in the future for the ICR will contribute to better treatments and, one day, a cure for children diagnosed with rhabdomyosarcoma.”The charity’s generosity is supporting research in Professor Janet Shipley’s laboratory to study the molecular biology of rhabdomyosarcomas and discover more targeted treatments. The charity is funding two research roles within the sarcoma team, along with the consumables needed for those scientists to undertake their vital work.

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Inspired by Alice

Knowing that I can contribute to the improvement of treatment of children with rhabdomyosarcoma is extremely rewarding and motivating. Alice’s Arc has given me the chance to do just this at the ICR with an exceptional team. I could not be more grateful for the opportunity.”

Carolina Bernauer, who has joined Professor Shipley’s team to take up one of the posts funded by Alice’s Arc

Alice was diagnosed with rhabdomyosarcoma at the age of three

Holding Freddie in mind�Ài``�i�>À«i�ÌiÀ]�>}i`�x]�«>ÃÃi`�>Ü>Þ��Ì�i�£nth October 2018 vÀ��i�LÀÞ��>��À�>L`��Þ�Ã>ÀV��>°�7i�Ài�i�LiÀ��ÕÀ�Ü�À�]�he has given us passion and determination to achieve our goals.

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Having been diagnosed in July 2017, his journey took him to Jacksonville, Florida for proton radiation and he received IVA (Ifosfamide, Vincristine and Actinomycin) chemotherapy at Great Ormond Street Hospital (GOSH), UK. Sadly his tumour returned aggressively to his brain when he was on maintenance chemotherapy and he was given weeks to live.

Freddie’s mum, Natalie, said “Watching Freddie meet the daily challenges of cancer was breath taking. He was fearless, resolved, determined, kind and loving. He found the fun in everything. He pushed himself as far as he could go and squeezed every drop of life out of each day. He was remarkable and showed me how I want to live my life.”

Freddie’s story is particularly poignant as he fought cancer alongside his brother, Arthur, who was diagnosed only a few months before with a medulloblastoma. He remains in remission.

Freddie and Alice met one another at Safari Outpatients in GOSH. Alice was in remission after frontline treatment and Freddie was just starting his chemotherapy.

Freddie will always be an inspiration for Alice’s Arc. His battle and subsequent death has led to an outpouring of support from his family, friends and community, who have pro-actively fundraised in his name. Freddie is a trigger for change and his experience raises important questions for research such as – what was it about his ERMS tumour that made it so CIITGUUKXG!�9G�UVTKXG�VQ�ƂPF�VJGUG�CPUYGTU�

“Knowing that Alice’s Arc was out there gave us hope in VJG�FCTMPGUU��9JGP�[QW�CTG�ƂIJVKPI�VJG�FCKN[�DCVVNGU�QH�childhood cancer you need to know there are people out there who are pushing the agenda forward as you keep searching for answers. After Freddie’s death it has become a focus and a place to enact the deep love we YKNN�CNYC[U�HGGN�UQ�ƂGTEGN[�q�0CVCNKG�CFFGF

(TGFFKG��YG�YKNN�ƂPF�QWV�OQTG�CDQWV�rhabdomyosarcoma and improve outcomes for children like you diagnosed in the future. Thank you for helping us everyday as we carry out this crucial work.

Freddie Carpenter

Freddie and Arthur Carpenter

“Knowing that Alice’s Arc was out there gave us hope in the darkness.”

Natalie Carpenter


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The future

Sustain and expand fundraising initiatives by maintaining relationships with current supporters and attracting new sponsors.

Continue to support the research team at the Institute of Cancer Research (ICR) and pursue new tangible research opportunities to help achieve our objectives.

Ensure we are providing funding that contributes to diversifying effective treatment options through the development of novel therapies and the delivery of clinical trials.

Grow the charity by launching a Family Well-Being arm which will offer comprehensive support services to families at any stage – diagnosis, treatment, remission, palliative and the loss of a child.

Create formal collaborations with named funds/foundations wanting to raise money going towards rhabdomyosarcoma initiatives.

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Financial statements and notes

September 30th 2018–September 30th 2019

19alicesarc.org

Alice’s Arc,i«�ÀÌ��v�Ì�i�/ÀÕÃÌiiÃ�v�À�Ì�i�Þi>À�i�`i`�Îäth September 20196JG�VTWUVGGU�RTGUGPV�KVU�TGRQTV�CPF�ƂPCPEKCN�UVCVGOGPVU��GZCOKPGF�D[�CP� independent person, for the year ended 30th September 2019.

,iviÀi�Vi�>�`�č`��ÃÌÀ>Ì�Ûi��v�À�>Ì��Charity Name: Alice’s ArcCharity registration number: 1164253

4GIKUVGTGF�1HƂEG�CPFoperational address: High Beech 53 Kippington Road Sevenoaks TN13 2LL

/ÀÕÃÌiiÃMrs Sara Alison Louise Wakeling – Chief Executive

Mr David Andrew Wakeling

Mr Nick Richard Wakeling

Dr Melvin Lee Kiang Chua

Independent PersonAlice Hagell, Head of Financial and Regulatory Assurance, Metro Bank PLC

>��iÀMetro Bank 1 Southampton Row London WC1B 5HA


Our aims and objectivesPurposes and aimsOur charity’s purpose as set out in the objects contained in the company’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 the purchase of medicine (as recommended by doctors), equipment, toys, facilities and/or services not provided by national health services or otherwise provided;

(2) Funding research into such cancers by working with institutions like the Institute of Cancer Research, Great Ormond Street Hospital and the Royal Marsden to fund teams and equipment required to undertake research;

(3) Introducing best practices between jurisdictions for treatment and/or easing the suffering of patients and/or their families;

(4) Raising awareness of such cancers through social and other media, and/or

(5) Assisting in the knowledge and understanding of such cancers.

1WT�CKOU�HWNN[�TGƃGEV�VJG�RWTRQUG�VJCV�VJG�EJCTKV[�YCU�UGV�WR�VQ�HWTVJGT�CPF�VJG�RWDNKE�DGPGƂV�of helping children with childhood cancers, in particular sarcomas, as a class, and their families.

Ensuring our work delivers our aimsWe 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 30th September 2019. The review NQQMU�CV�VJG�UWEEGUU�QH�GCEJ�MG[�CEVKXKV[�CPF�VJG�DGPGƂVU�VJG[�JCXG�DTQWIJV�VQ�VJQUG�ITQWRU�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 IGPGTCN�IWKFCPEG�QP�RWDNKE�DGPGƂV�YJGP�TGXKGYKPI�QWT�CKOU�CPF�QDLGEVKXGU�CPF�KP�RNCPPKPI�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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The focus of our workOur main objectives for the year have been focussed on helping children with childhood cancers, in particular sarcomas, as a class, and their families. The strategies we used to meet these objectives included:

a) A collaboration with the Institute of Cancer Research, Great Ormond Street Hospital CPF�VJG�4Q[CN�/CTUFGP�0*5�(QWPFCVKQP�6TWUV��5WDLGEV�VQ�HWNƂNOGPV�D[�VJGO�QH�CITGGF�OKNGUVQPGU��YG�JCXG�RNGFIGF�HWPFU�QXGT�C�VJTGG�[GCT�RGTKQF�QH��M��YKVJ�ƂTO�commitments made in respect of years one, two and three. The charity has raised or received commitments for over £600k to date in incoming resources to meet these disbursal commitments (over £200k of which since 30th September 2019) before the third year is scheduled to begin.

b) The money will be used for the employment of a Clinical Research Fellow and a Postdoc to undertake research into the genetics and behaviours of Rhabdomyosarcomas and other sarcomas and how they respond to different drugs and innovative treatment methods. It is also being used to obtain key laboratory materials necessary for this research. These roles will work closely with the Professor in charge of the research unit at the Sutton campus of the Institute of Cancer Research. The aim is to roll out a relapse Rhabdomyosarcoma treatment protocol for children based on this research that will be translated into practice to increase survival rates of children suffering from Rhabdomyosarcoma.

c) Funding part of the work of a potential new clinical trial being led out of Great Ormond Street in conjunction with the Institute of Cancer Research. This will look at a new method of treating Rhabdomyosarcoma which has already been trialled on other childhood cancers such as Leukaemia and Neuroblastoma.

d) Funding the purchase of drugs that are not available on the NHS for children as they are too expensive. Neulasta helps blood counts recover quickly after chemotherapy which destroys all the healthy cells in the body. This blood count recovery minimises the risk of the patient catching an infection which could pose a serious threat to their heath.

e) Raising awareness and lobbying for change. We have forged connections with other children’s cancer charities and are in the process of forming formal collaborations with several named funds who intend to raise funds for Alice’s Arc.

f) We have increased our marketing and fundraising activities during this period. We hosted C�URQPUQTGF�ƂTGYCNM�YJKEJ�TCKUGF��-�CPF�ETGCVGF�OCTMGVKPI�EQPVGPV�KPENWFKPI�C�brochure and increased presence on social media platforms.


How our activities deliver RWDNKE�DGPGƂVOur 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 HQT�VJG�RWDNKE�DGPGƂV�

9JQ�WUGF�CPF�DGPGƂVGF�HTQO� 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 sub-types. 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.

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.

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Financial reviewAgainst the backdrop of limited resources and the size and complexity of childhood cancer, it is challenging to progress on all of the objectives of Alice’s Arc. Nevertheless the charity, YKVJ�VJG�CKF�QH�UQWPF�ƂPCPEKCN�OCPCIGOGPV�CPF�VJG�UWRRQTV�QH�KVU�VTWUVGGU�CPF�EQPVCEVU�IGPGTCVGF�C�XGT[�RQUKVKXG�ƂPCPEKCN�QWVEQOG�HQT�VJG�RGTKQF��KVU�VJKTF�[GCT�KP�QRGTCVKQP��YKVJ�income of £169,310 including Gift Aid. This enabled total disbursements of £170,868 to the Institute of Cancer Research in respect of the collaboration. This is in addition to £25,000 disbursed in 2017 and £80,545 disbursed in 2018, bringing total disbursements to date to £276,413. After these disbursements, total funds of the charity stood at £104,282 at the end of the year to 30th September 2019.

Principal funding sourcesThe funding sources for Alice’s Arc are from families, individuals and corporate donations. None of the funds of the charity are restricted.

Investment policyMost of the charity’s funds are currently expected to be applied to the clinical research in collaboration with the Institute of Cancer Research, The Great Ormond Street Hospital and the Royal Marsden NHS Foundation Trust and, pending disbursement, the funds are invested short term in a Community Instant Access Account held with the charity’s banker.

Reserves policyThe 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 £100 in general funds. The reserves are needed to meet the working capital requirements of the EJCTKV[�CPF�VJG�%JKGH�'ZGEWVKXG�KU�EQPƂFGPV�VJCV�CV�VJKU�NGXGN�VJG[�YQWNF�DG�CDNG�VQ�EQPVKPWG�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 periodsThe charity plans to continue the activities outlined above in the forthcoming years and is exploring new projects.

Structure, governance and management

Governing documentAlice’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 TrusteesUnder the requirements of the constitution there is no limit on the term of trustees. #NN�VTWUVGGU�IKXG�VJGKT�VKOG�XQNWPVCTKN[�CPF�TGEGKXGF�PQ�DGPGƂVU�HTQO�VJG�EJCTKV[�� No expenses were reclaimed from the charity in the year.

No new trustees were appointed in the year to 30th September 2019.

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 UGTXGF�VJTQWIJ�VJG�FKXGTUKV[�QH�VJG�VTWUVGG�DQF[�YKVJ�OCTMGVKPI��NGICN��ƂPCPEKCN�CPF�OGFKECN�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 have also in their personal capacity provided donations to the charity in the pursuit of its objectives.

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Trustee induction and trainingAs 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 ƂPCPEKCN�RQUKVKQP��CPF�VJG�HWVWTG�RNCPU�CPF�QDLGEVKXGU�QH�VJG�EJCTKV[�

Risk managementThe 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, The Great Ormond Street Hospital and the Royal Marsden NHS Foundation Trust. Internal control risks are minimised by the KORNGOGPVCVKQP�QH�RTQEGFWTGU�HQT�CWVJQTKUCVKQP�QH�CNN�ƂPCPEKCN�VTCPUCEVKQPU�

Organisational structureAlice’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 four 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 charities activities rest with the Chief Executive who is also a trustee.

Related partiesNo 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.


Responsibilities of the Trustees%QORCP[�NCY�TGSWKTGU�VJG�VTWUVGGU�VQ�RTGRCTG�ƂPCPEKCN�UVCVGOGPVU�HQT�GCEJ�ƂPCPEKCN�[GCT�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 GZRGPFKVWTG��HQT�VJG�ƂPCPEKCN�[GCT��+P�RTGRCTKPI�VJQUG�ƂPCPEKCN�UVCVGOGPVU��VJG�VTWUVGGU�UJQWNF�follow best practice and:

• select suitable accounting policies and then apply them consistently; make judgements and GUVKOCVGU�VJCV�CTG�TGCUQPCDNG�CPF�RTWFGPV��CPF�RTGRCTG�VJG�ƂPCPEKCN�UVCVGOGPVU�QP�VJG�going concern basis unless it is not appropriate to assume that the company will continue on that basis.

The trustees are responsible for maintaining proper accounting records which disclose with TGCUQPCDNG�CEEWTCE[�CV�CP[�VKOG�VJG�ƂPCPEKCN�RQUKVKQP�QH�VJG�EJCTKV[�CPF�VQ�GPCDNG�VJGO�VQ�GPUWTG�VJCV�VJG�ƂPCPEKCN�UVCVGOGPVU�EQORN[�YKVJ�VJG�5VCVGOGPV�QH�4GEQOOGPFGF�2TCEVKEG��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.

TrusteesThe 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 20.

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 GTTQTU�VJKU�KU�VJG�EJCTKV[oU�ƂTUV�TGRQTVKPI�RGTKQF��

r� VJGTG�CTG�PQ�OCVGTKCN�WPEGTVCKPVKGU�TGNCVGF�VQ�GXGPVU�QT�EQPFKVKQPU�VJCV�ECUV�UKIPKƂECPV�doubt on the charity’s ability to continue as a going concern;

• there is no relevant audit information of which the charity’s independent person 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 person is aware of that information.

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Independent personAlice Hagell was appointed as the charity’s independent person. 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) issued on 16th July 2014.

Approved by the trustees on 18th June 2020 and signed on its behalf by:

Mrs Sara Wakeling (Chief Executive)

___________________


NotesUnrestricted Funds

to 30/9/19 £

Unrestricted Funds to 30/9/18

£

Incoming resources

Voluntary income: 2 160,248 91,131

donations

��vÌ�č�`��`��>Ì��Ã 7 8,632 9,500

Investment income 430 192

Total incoming resources 169,310 100,823

Resources expended

�ÃÌÃ��v�}i�iÀ>Ì��}�Û��Õ�Ì>ÀÞ��V��i 3 3,365 2,534

�>À�Ì>L�i�>VÌ�Û�Ì�iÃ 170,868 80,545

��ÛiÀ�>�Vi�V�ÃÌÃ 3 – –

Total resources expended 174,233 83,079

Net Income for the year (4,923) 17,744

,iV��V��>Ì��v�vÕ�`Ã

/�Ì>��vÕ�`Ã�LÀ�Õ}�Ì�v�ÀÜ>À` 109,206 91,462

Total funds carried forward 104,282 109,206

-Ì>Ìi�i�Ì��v��>�V�>��čVÌ�Û�Ì�iÃ��V�Õ`��}��V��i�E� Ý«i�`�ÌÕÀi�čVV�Õ�Ì®�v�À�Ì�i�Þi>À�i�ì`�Îäth September 2019

č��V��}�ÀiÃ�ÕÀViÃ�>�`�ÀiÃ�ÕÀViÃ�iÝ«i�ì`�ìÀ�Ûi�vÀ��V��Ì��Õ��}�>VÌ�Û�Ì�iÃ°

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Notes 30/9/19 £

30/9/18 £

Fixed Assets – –

ÕÀÀi�Ì�čÃÃiÌÃ 104,282 109,206

Debtors 7 5,018 4,966

>Ã��>Ì�L>��>�`��>�` 99,264 104,240

– –

Ài`�Ì�ÀÃ

Net Assets 104,282 109,206

General Funds 104,282 109,206

Total Funds 104,282 109,206

>�>�Vi�-�iiÌ�>Ã�>Ì�Îäth September 2019

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) issued on 16th July 2014.

Approved by the trustees on 18th June 2020 and signed on its behalf by:

Mr Nick Wakeling (Treasurer)

___________________


Notes forming part of the Financial Statements for the year ended 30th September 2019

1. Accounting Policies

The principal accounting policies are summarised below. The accounting policies have been applied consistently throughout the year.

>®�>Ã�Ã��v�>VV�Õ�Ì��}

6JG�ƂPCPEKCN�UVCVGOGPVU�JCXG�DGGP�RTGRCTGF�WPFGT�VJG�JKUVQTKECN�EQUV�EQPXGPVKQP��CU�OQFKƂGF�D[�VJG�KPENWUKQP�QH�CP[�ƂZGF�CUUGV�KPXGUVOGPVU�CV�OCTMGV�XCNWG��CPF�KP�CEEQTFCPEG�YKVJ�VJG�5VCVGOGPV�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) issued on 16th July 2014.

L®��Õ�`�>VV�Õ�Ì��}

• 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 the restatement of investment assets at market values.

Designated funds are unrestricted funds earmarked by the trustees for particular purposes.

Restricted funds are subjected to restrictions on their expenditure imposed by the donor or through the terms of an appeal.

V®��V��}�ÀiÃ�ÕÀViÃ

#NN�KPEQOKPI�TGUQWTEGU�CTG�KPENWFGF�KP�VJG�UVCVGOGPV�QH�ƂPCPEKCN�CEVKXKVKGU�YJGP�VJG�EJCTKV[�KU�GPVKVNGF�VQ��CPF�XKTVWCNN[�EGTVCKP�VQ�TGEGKXG��VJG�KPEQOG�CPF�VJG�COQWPV�ECP�DG�SWCPVKƂGF�YKVJ�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 VJG�FGNKXGT[�QH�C�URGEKƂE�RGTHQTOCPEG�D[�VJG�EJCTKV[��CTG�TGEQIPKUGF�YJGP�VJG�EJCTKV[�DGEQOGU�unconditionally entitled to the grant.

� &QPCVGF�UGTXKEGU�CPF�HCEKNKVKGU�CTG�KPENWFGF�CV�VJG�XCNWG�VQ�VJG�EJCTKV[�YJGTG�VJKU�ECP�DG�SWCPVKƂGF��The value of services provided by any volunteers has not been included in these accounts.

Investment income is included when receivable.

Incoming resources from charitable trading activity are accounted for when earned.

� +PEQOKPI�TGUQWTEGU�HTQO�ITCPVU��YJGTG�TGNCVGF�VQ�RGTHQTOCPEG�CPF�URGEKƂE�FGNKXGTCDNGU�� are accounted for as the charity earns the right to consideration by its performance.

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`®�,iÃ�ÕÀViÃ�iÝ«i�`i`

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 CPF�UGTXKEGU�HQT�KVU�DGPGƂEKCTKGU��+V�KPENWFGU�DQVJ�EQUVU�VJCV�ECP�DG�CNNQECVGF�FKTGEVN[�VQ�UWEJ�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 QP�C�DCUKU�FGUKIPGF�VQ�TGƃGEV�VJG�WUG�QH�VJG�TGUQWTEG�

i®��Ýi`�>ÃÃiÌÃ

Fixed assets (excluding investments) are stated at cost less accumulated depreciation. The costs of minor additions or those costing below £1,000 are not capitalised. Depreciation is provided at rates calculated to write off the cost of each asset over its expected useful life, which in all cases is estimated at 4 years. Impairment reviews are carried out as and when evidence comes to light that VJCV�VJG�TGEQXGTCDNG�COQWPV�QH�C�HWPEVKQPCN�ƂZGF�CUUGV�KU�DGNQY�KVU�PGV�DQQM�XCNWG�FWG�VQ�FCOCIG��obsolescence or other relevant factors.

+PXGUVOGPVU�JGNF�CU�ƂZGF�CUUGVU�CTG�TGXCNWGF�CV�OKF�OCTMGV�XCNWG�CV�VJG�DCNCPEG�UJGGV�FCVG�CPF�VJG�gain or loss taken to the Statement of Financial Activities.

v®�"vvÃiÌÌ��}

There has been no offsetting of assets and liabilities, or income and expenses

Ó°��>Ì��Ã�>�`��vÌ�č�`

All donations received are unrestricted. Gift Aid receivable is included in income when there is a valid declaration from the donor. 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 FQPQT�QT�VJG�VGTOU�QH�VJG�CRRGCN�JCXG�URGEKƂGF�QVJGTYKUG�

Î°�/�Ì>��,iÃ�ÕÀViÃ� Ý«i�`i`

Costs of generating voluntary income comprises £2,719 in supplier charges for fundraising events, £339 in design, print and post, £62 on social media, and monthly fees to Just Giving amounting to £245 in the year.

Charitable activities comprise £170,868 relating to the charity’s second and part of the third year of collaboration with the Institute of Cancer Research, The Great Ormond Street Hospital and the Royal Marsden NHS Foundation Trust on childhood Rhabdomyosarcoma.

The independent person received no remuneration in scrutinising this report.


{°�-Ì>vv��ÃÌÃ�>�`� Õ�LiÀÃ

There are no employees of the charity

x°�/ÀÕÃÌii�,i�Õ�iÀ>Ì��E�,i�>Ìi`�*>ÀÌÞ�/À>�Ã>VÌ��Ã

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.

È°�/>Ý>Ì��

Alice’s Arc obtained tax registration from HMRC on 10th 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.

7. Debtors

Debtors comprise the amount of Gift Aid on donations received to which the charity is entitled and expects to recover from HMRC within one year. Net £8,614 in Gift Aid was successfully claimed from HMRC during the year to 30th September 2019 in respect of donations made in this period and in the previous year.

��`i«i�`i�Ì�iÝ>��iÀ½Ã�Ài«�ÀÌ�Ì��Ì�i�ÌÀÕÃÌiiÃ��v�č��Vi½Ã�čÀV

I report on the accounts of the Trust for the year ended 30th September 2019, which are set out on pages 29 to 33.

,iÃ«iVÌ�Ûi�ÀiÃ«��Ã�L��Ì�iÃ��v�ÌÀÕÃÌiiÃ�>�`�iÝ>��iÀ

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.

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

• state whether particular matters have come to my attention

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>Ã�Ã��v��`i«i�`i�Ì�iÝ>��iÀ½Ã�Ài«�ÀÌ

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.

Independent examiner’s statement

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

• 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

Name: Alice Hagell

4GNGXCPV�RTQHGUUKQPCN�SWCNKƂECVKQP�QT�DQF[��+%#'9

Address: 100 Robertson Street, London, SW8 3TZ

Date: 18th June 2020


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Alice’s Arc Annual Report

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Transcript of Alice’s Arc Annual Report