2024-03-31-accounts

Trustees’ Annual Report

Blue Skye Thinking

From 1 April 2023 to 31 March 2024

Registered Charity Number 1158021

Principle Address:

66 Five Mile Drive Oxford Oxfordshire OX2 8HW

Names of Trustees:

Mr Andrew S Hall Mrs Sally G Hall Mrs Victoria E B Marcham Mrs Lisa Ruggles Dr Joanne Wilkinson

Website:

www.blueskyethinking.org

Contact Email:

[e-mail]

Contact Telephone: [phone]

Bankers:

Royal Bank of Scotland 32 St Giles’ Oxford OX1 3ND Account No: 11002339 Sort Code: 16-10-15

Introduction to Blue Skye Thinking

In August 2013, Skye Hall, aged 4, was diagnosed with a brain tumour, which had metastasised to various parts of his brain and spinal cord, despite showing very few symptoms over a period of just 4 weeks. Just 12 months later Skye died as a direct result of the side effects of the treatment, which included surgery to remove the bulk of the tumour, an 11 week course of Chemotherapy, 5 weeks of Radiotherapy, followed by high dose Chemotherapy. The disease was stable, but the rigorous treatment protocols which he was subjected to, led to his paralysis and subsequent death.

In response to this, Skye’s parents, Sally and Andrew Hall, set up Blue Skye Thinking in order to accelerate research into the Research and Treatment of Childhood Brain Tumours, so that all children diagnosed would have a better chance of survival and a better quality of life post treatment. Blue Skye Thinking is a registered charity with the Charity Commission and as a Charitable Trust with the HMRC, and is governed by the Trust Deed dated 24 July 2014.

Aims and Objectives

To help promote research into the causes, cures and prevention of childhood brain tumours and to disseminate the useful results of such research for the benefit of the public.

The relief of children who are suffering from a brain tumour by the provision of grants and financial assistance to provide equipment and apparatus to hospital wards, and support people suffering from brain tumours, their families and carers.

Raising awareness of brain cancer as the number one cancer killer amongst children and teenagers.

Trustees

There must be at least three [3] trustees. Apart from the first trustees, every trustee must be appointed [for a minimum term of two years] by a resolution of the trustees passed at a special meeting called under clause 15 of the Deed.

In selecting individuals for appointment as trustees, the trustees must have regard to the skills, knowledge and experience needed for the effective administration of the charity. The trustees must keep a record of the name and address and the dates of appointment, re-appointment and retirement of each trustee. The trustees must make available to each new trustee, on his or her first appointment:

(a) a copy of this deed and any amendments made to it;

(b) a copy of the charity’s latest report and statement of accounts.

Achievements and Performance

Blue Skye Thinking continues to be represented on key Medical Steering Committees representing the parent voice; these include the UK Children’s Genome England (Genomics England Clinical Interpretation Partnership - GeCIP), SIOP-HRMB International Society of Paediatric Oncology, and Stratified Medicine Paediatrics. See here for further detail.

Despite having a voice on these key Committees, the pace at which change happens continues to be a source of frustration. There is no question that Research takes time and there is the inevitable due diligence that needs to take place before following particular strands.

Campaigning

It was a great honour that Sally was invited to speak at the Childhood Cancer Conference in October 2023. The very intense two-day conference, hosted by Children with Cancer UK, was the first held since the pandemic and it was a conference packed with passion.

Sally was delighted to play a small part in this significant conference, to have an opportunity to talk about Skye and some of the research Blue Skye Thinking has co-funded. Sharing the stage with two men she admires deeply – proactive problem solver (Professor Steve Clifford from Newcastle University) and fellow bereaved parent John Rainsbury of Little Hero charity, the three of them delved into the issues facing children with high-risk medulloblastomas and how the research community are striving to address them. They also emphasised the need for collaboration and real-time data sharing if the community want to achieve the great outcomes it so desperately desires.

Among the speakers was Professor Kathy Pritchard-Jones, one of the UK's foremost experts in childhood cancer, who has been a consultant in the field for 20 years and is currently Professor of Paediatric Oncology at UCL and President of the International Society of

Paediatric Oncology (SIOP). Another key member of the conference was Professor Pamela Kearns, Director of the University of Birmingham’s Institute of Cancer and Genomic Sciences and Director of the Cancer Research UK Clinical Trials Unit (CRCTU). As Director of CRCTU, she leads the research strategy for one of the UK's largest cancer trials units, delivering a trials portfolio of over 100 multi-centre and international cancer trials for a wide range of cancers occurring in children, young people and adults. Notably, she is leading the National Children’s Cancer Trials Team responsible for the vast majority of the UK’s clinical trial portfolio for children and young people with cancer. They had a promising discussion about the importance of data sharing and we look forward to having further meetings with her over the coming year.

We genuinely hope that momentum continues to grow and that research funding can be delivered without unnecessary delays.

The highlight, however, has to be listening to and meeting with Ellen Bisci and Ace Manthey who talked so eloquently about their own personal journeys with cancer. Many people imagine a wild party at the end of successful, life-saving treatment but the stark reality for many is not only the threat of relapse, for which there are very limited treatment options and none for brain tumour patients, but also the reduction in ability to go on to have children in adulthood; incontinence; reduction in neurocognitive function; endocrine deficiencies; acute and chronic toxicities; risk of stroke; heart, hearing, sight and liver function issues; and many more to mention. Every individual is affected differently and to varying degrees, but given all that adversity, to stand up and be thankful for what they do have, and to hear them publicly thank their families and the support of the community was incredibly heartwarming. Ace even recounted meeting Skye, and what a lasting impression he had carried with him to this day.

Fundraising

The majority of funds have been raised through regular Donations and individuals raising money through Sponsorship. JustGiving continues to be a popular platform.

TRUCK Festival

It was great to be back at TRUCK Festival and had the privilege of diversifying from our traditional and ever popular Pasties and Sausage Rolls, and added the Mac n Cheese stand as well as a last minute stand-in opportunity when Savill’s were unable to staff the stand. With just 4 weeks’ notice, our volunteers came up trumps, and as a result our revenue from TRUCK surpassed anything that could have been expected for the year. The Charity Good Food Tent was as popular as ever and we are once again indebted to our amazing volunteers who worked from dawn to dusk and beyond to feed the festival goers. With over 35 volunteers running the 2 stands, we were touched and humbled by people’s willingness to give of their free time.

The unexpected trading income from the Mac n Cheese stand has meant that the trading income is greater than the HMRC allowance for the year. Because this was not known at the start of the financial year, it is deemed acceptable as a one-off.

Good Afternoon Choir - Devon

The Mid Devon Good Afternoon Choir hosted a fundraiser in July 2023 at their annual concert in Crediton featuring the Bath Male Voice Choir, which was hosted by Grenville Jones. One of the trustees was able to say a few words about the Charity during the interval which was very well received and brought in some significant donations.

Reserves

A policy decision was taken by the Trustees, that before embarking on the sponsorship of any research projects, the Charity would ensure that the full sum of money was in place prior to commencement, to ensure that should the financial or political climate change, that sufficient funds were available to ensure that any project would run its full course. Hence, the Charity would always operate with reserves in the bank.

Current reserves are substantial, and the Trustees are actively seeking worthy projects to support in the coming 12 months. Research projects are expensive and elongated, and as such significant reserves need to be built up in order to be able to fund these when they arise. A short 4-year project will demand reserves of between £120k and £150k. Grants will be made to worthy projects. Trustees will ensure due diligence.

Declaration

The Trustees declare that they have approved the trustees’ report above.

Signed:

Signed: Signed: | thls it Signed: Signed: Date: 29 January 2025

Independent examiner's report on the accounts

Section A Independent Examiner’s Report

Charity Name Blue Skye Thinking

Report to the trustees Charity Name Blue Skye Thinking On accounts for the year 31 March 2024 Charity no 1158021 ended (if any) Set out on pages 1-2 (remember to include the page numbers of additional sheets) I report to the trustees on my examination of the accounts of the above charity (“the Trust”) for the year ended 31/3/2024. Responsibilities and As the charity's trustees, you are responsible for the preparation of the basis of report accounts in accordance with the requirements of the Charities Act 2011 (“the Act”).

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

• Independent I have completed my examination. I confirm that no material matters have

• examiner's statement come to my attention in connection with the examination (other than that disclosed below *) which gives me cause to believe that in, any material respect:

• the accounting records were not kept in accordance with section 130 of the Charities Act; or

• the accounts did not accord with the accounting records; or

• the accounts did not comply with the applicable requirements concerning the form and content of accounts set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a ‘true and fair’ view which is not a matter considered as part of an independent examination.

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

Date: 27 January 2025 Signed: ~~|~~ Name: Caroline Ryman Relevant professional Chartered Accountant qualification(s) or body (if any):

Oct 2018

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IER

Address: 11 Aggs Close, Gotherington, Cheltenham, Glos, GL52 9HD

Section B Disclosure

Only complete if the examiner needs to highlight material matters of concern (see CC32, Independent examination of charity accounts: directions and guidance for examiners).

Give here brief details of any items that the examiner wishes to disclose .

Oct 2018

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CHARITY COMMISSION FOR ENGLANO ANO WALES Blue Skye Thinking Receipts and payments accounts 1158021 CC16a For the perlod from To 01- r-23 31-Mar-24 Section A Receipts and payments Unrestricted funds to the nèarèst Restricted funds Endowment funds Total funds Last year to the nearest £ to the nearesl £ to thg ngarest £ to the nearest £ A1 Receipts Voluntary income received Trading actsvitses lor gener*"ng lun(ts Interest Re￿1Ve￿ 17,629 37.160 3,104 17,629 37,160 3.104 28,696 8,023 765 Sub total (Gross income forAR) 57.893 57,893 37,484 A2 Asset and investment sales, (see table). Sub total 57,893 57,893 37,484 A3 Payments Costs of eneratin volunta incoma Cost of trading activities to generate fvnd$ Administrative ex enses Donations Depreciation 216 10,138 1,697 216 10,138 1.697 389 4.268 1,243 2,500 100 99 99 Sub total 12,150 12.150 8.500 A4 Asset and Inveslment purchases. (see table) Sub total 12,150 12,150 8.500 Net of receipts/(payments) A5 Transfers between funds A6 Cash funds last year end Cash funds this year end 45,744 45,744 28,984 284,244 329.988 284,244 329,988 255,260 284.244 GCXX R1 accounts ISSI 2810112025

Section B Ststement of assets and liabilities at the end of the period Unrestricted funds Restricted funds Endowment funds Categories Details to nearest £ to nearest £ to nearest £ B1 Cash funds Bank current acxxunt 4,338 Bank savings account 245.350 Paypal acauntrFixe(l assew { (yeditorsl 300 Total cash funds 329,988 act￿$)1 Unrestricted funds to near•st E Restricted fund8 to near6st £ Endowment funds to nearest £ Details B2 Other monetary assets Fund to whlch ass9t b•lon Current value lonal Detsils Cost loptionall Fund to which ass•t belon Currènt value tional Detslls Fixed a$88ts Cost loptlonall B4 Assets retained for the charity's own use Unrestricted Fund to whlch relates Unrestnaed Amount due lion#[ WhÈn due tional Details 85 Liabilities Signed by one or trustees on behaff of all the trustees Signature Print Name Date of roval '¥Iiyi,Y4. Andrew Hall 2810112025 Sally Hall 2810112025 CCXX R2 aGcounts ISS) 28101r2025