CHARITY REGISTRATION NUMBER: 1184699
OURBRAINBANK CIO
Unaudited Financial Statements 31 December 2020
BURGESS HODGSON LLP
Chartered accountants Camburgh House 27 New Dover Road Canterbury Kent CT1 3DN
OURBRAINBANK CIO
Financial Statements
Period from 31 July 2019 to 31 December 2020
| Page | |
|---|---|
| Trustees' annual report | 1 |
| Statement of financial activities | 5 |
| Statement of financial position | 6 |
| Notes to the financial statements | 7 |
OURBRAINBANK CIO
Trustees' Annual Report
Period from 31 July 2019 to 31 December 2020
The trustees present their report and the unaudited financial statements of the charity for the period ended 31 December 2020.
Reference and administrative details
Registered charity name OURBRAINBANK CIO Charity registration number 1184699 Principal office 41 Cheverton Road London N19 3BA
The trustees
(Appointed 31 July 2019; J J Morris Deceased 8 June 2021) J N H Bamping OBE (Appointed 31 July 2019) J Bennett OBE (Appointed 4 December 2019) J Arnold-Forster (Appointed 5 September 2019) R Clemmow (Appointed 6 April 2020) S D Matthews (Appointed 31 July 2019) A Coulson (Appointed 22 March 2021) Accountants Burgess Hodgson LLP Chartered accountants Camburgh House 27 New Dover Road Canterbury Kent CT1 3DN
Structure, governance and management
OurBrainBank is run on a voluntary basis by its experienced UK Board of Trustees, which meets and engages regularly to provide direction and oversight of the charity's activities in the UK. OurBrainBank has no employees in the UK but, in 2020, commissioned external support from an experienced marketing and social media consultant to help raise awareness of OurBrainBank and to encourage glioblastoma (GBM) patients and their carers to register for our pioneering mobile app.
We work closely with our colleagues at OurBrainBank US and our Trustees join global board meetings to collaborate across areas of strategic development, communications and fundraising initiatives.
OurBrainBank also benefits from robust Medical and Patient Advisory committees, based in the US. The Medical Advisory Committee is co-headed by leading neuro-oncologists Fabio Iwamoto MD of Columbia University, and Lakshmi Nayak MD of Dana-Farber Cancer Institute. The Committee brings together a wide range of clinical specialists spanning neuro-surgery, psychiatry, neuro-oncology, and nursing. The Patient Advisory Committee includes patients and caregivers.
We will be seeking a similar level of support and engagement from the UK GBM medical research and patient community, as well as building links with other brain tumour and GBM-focused charities.
We are deeply sad to report that our inspirational founder and UK chair, Jessica Morris, passed away in June 2021 after a five-year fight against glioblastoma. The Board is committed to honour Jessica's memory and vision for everyone affected by GBM.
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OURBRAINBANK CIO
Trustees' Annual Report (continued)
Period from 31 July 2019 to 31 December 2020
Objectives and activities
Created by Jessica Morris as a direct result of her own diagnosis, OurBrainBank is an innovative, patient-led movement designed to move glioblastoma (GBM) from terminal to treatable, powered by patients. It's the first non-profit created by, for, and with people with GBM, a rare and deadly brain cancer whose 5-year survival rate is 5%. Glioblastomas are the most common high grade (cancerous) primary brain tumour in adults. A glioblastoma is the fastest growing form of glioma brain tumour and is extremely difficult to treat.
The objectives of OurBrainBank include the advancement of health by the provision of support, assistance and information to persons living with glioblastoma, and by contributing to research into glioblastoma; as well as the advancement of the education of the general public in all areas relating to glioblastoma.
OurBrainBank's key tool is a free, certified app that enables patients and carers to manage their disease by tracking their symptoms, test their neurological functions, and keep on top of their treatment schedules. Users can choose to donate their symptom data to medical researchers and help to fast-track new treatments and approaches to move GBM from terminal to treatable. All data collected is de-identified and will be made available to qualified GBM researchers worldwide, subject to the approval of of OurBrainBank's US-based Data Access Committee.
Beyond the app, OurBrainBank aims to raise awareness and understanding of GBM, standards of patient care and the importance of GBM-focused research and clinical trials. It engages with GBM patients and their carers through a variety of channels, and uses its external channels, fundraising activities and advocacy initiatives to reach broader stakeholders.
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OURBRAINBANK CIO
Trustees' Annual Report (continued)
Period from 31 July 2019 to 31 December 2020
Achievements and performance
Following a successful launch in the US in 2018, where it has been presented and published at the Society of Neuro-Oncology and published online by the American Society of Clinical Oncology, OurBrainBank launched in the UK in December 2019 in response to patient demand.
OurBrainBank UK was launched via digital poster sites in London, generously donated by Clear Channel International and created pro bono by communications agency FleishmanHillard, and was marked by a launch event at Clear Channel's London offices, where speakers included Jess Mills from the Tessa Jowell Brain Cancer Mission. The launch of OurBrainBank in the UK gained prominent media coverage in the London Evening Standard, the Daily Mail and Tortoise.
At launch, the OurBrainBank app began accepting patients from the UK for the first time and started working with Dr Florien Boele, from the University of Leeds Institute of Medical Research and Leeds Institute of Health Sciences. The aim of the pilot study is to make the OurBrainBank app available to patients in the United Kingdom and learn about patient participation and compliance by collecting longitudinal data on these participants over a period of 100 days.
Since launching in the UK, OurBrainBank has worked with its US colleagues to engage a dynamic global community of people affected by glioblastoma throughout the world via social media, its e-newsletter, YouTube channel, 'Voices' free live video chats including speakers from the neuro-oncology world, other charities and fellow patients and carers, and including dedicated chats for the UK community. OurBrainBank has a 1500-strong global patient and carers Facebook group.
In the past year, social media activity has included awareness and fundraising activities including:
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Promoting the OurBrainBank app as part of Brain Tumour Awareness Month in the UK
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Supporting fundraisers Alice Morris and Harry Fowler from London as they climbed Mount Kilimanjaro to raise funds for OurBrainBank
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A Star Wars themed social media promotion on May the 4th to celebrate everyone surviving GBM and using the OurBrainBank app as the FORCE to beat GBM
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During the pandemic, OBB launched a Go Grey in May initiative on social media
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Later in 2020 it launched a #GiveUsFive fundraising campaign to highlight the fact that only five percent of people living with GBM survive more than five years.
During the UK Covid-lockdown, we replaced a previously planned fundraising concert with an online virtual festival in support of OurBrainBank. The originally-planned concert also featured on BBC Radio 4 Today programme's 'The show must go on' segment.
As part of raising awareness of the rights of GBM patients worldwide, OurBrainBank launched a GBM Bill of Rights, an OurBrainBank initiative supported by major, global cancer non-profits, including the International Brain Tumour Alliance, the American Brain Tumor Association and the National Brain Tumor Society (US), the Tessa Jowell Foundation (UK), and the Chris O'Brien Lifehouse (Australia). In developing the Bill of Rights, OurBrainBank surveyed GBM patients and carers about their experiences and, with the help of fellow advocates, used the results to craft a set of concepts to call for improving the standard of care and quality of life of GBM patients.
OurBrainBank continued to raised awareness via prominent media coverage. Jessica Morris, OurBrainBank founder, and Jana Bennett, OurBrainBank UK trustee, wrote an important opinion piece in the New York Times about what a Biden presidency could mean for cancer care, and more specifically, for GBM patients.
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OURBRAINBANK CIO
Trustees' Annual Report (continued)
Period from 31 July 2019 to 31 December 2020
Financial review
Since registration on 31 July 2019, the charity received donations totalling £23,349 while incurring £5,500 on communications and social media consulting and £131 on bank fees. This has resulted in the charity having £17,718 in unrestricted funds at the period end.
The trustees' annual report was approved on .............................. and signed on behalf of the board of 28/09/2021 trustees by:
J Arnold-Forster Trustee
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OURBRAINBANK CIO
Statement of Financial Activities
Period from 31 July 2019 to 31 December 2020
| Period from | 31 Jul 19 to | ||
|---|---|---|---|
| 31 Dec 20 | |||
| Unrestricted | |||
| funds | Total funds | ||
| Note | £ | £ | |
| Income and endowments | |||
| Donations and legacies | 4 | 23,349 | 23,349 |
| ---------------------------- | ---------------------------- | ||
| Total income | 23,349 | 23,349 | |
| ============================ | ============================ | ||
| Expenditure | |||
| Expenditure on charitable activities | 5,6 | 5,631 | 5,631 |
| ---------------------------- | ---------------------------- | ||
| Total expenditure | 5,631 | 5,631 | |
| ============================ | ============================ | ||
| ---------------------------- | ---------------------------- | ||
| Net income and net movement in funds | 17,718 | 17,718 | |
| ============================ | ============================ | ||
| Reconciliation of funds | |||
| Total funds brought forward | – | – | |
| ---------------------------- | ---------------------------- | ||
| Total funds carried forward | 17,718 | 17,718 | |
| ============================ | ============================ |
The statement of financial activities includes all gains and losses recognised in the year. All income and expenditure derive from continuing activities.
The notes on pages 7 to 10 form part of these financial statements.
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OURBRAINBANK CIO
Statement of Financial Position
31 December 2020
| 31 Dec 20 | ||
|---|---|---|
| Note | £ | |
| Current assets | ||
| Cash at bank and in hand | 17,718 | |
| ---------------------------- | ||
| Net current assets | 17,718 | |
| ---------------------------- | ||
| Total assets less current liabilities | 17,718 | |
| ============================ | ||
| Funds of the charity | ||
| Unrestricted funds | 17,718 | |
| ---------------------------- | ||
| Total charity funds | 10 | 17,718 |
| ============================ |
These financial statements were approved by the board of trustees and authorised for issue on 28/09/2021........................, and are signed on behalf of the board by:
J Arnold-Forster Trustee
The notes on pages 7 to 10 form part of these financial statements.
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OURBRAINBANK CIO
Notes to the Financial Statements
Period from 31 July 2019 to 31 December 2020
1. General information
The charity is a public benefit entity and a registered charity in England and Wales and is unincorporated. The address of the principal office is 41 Cheverton Road, London, N19 3BA.
2. Statement of compliance
These financial statements have been prepared in compliance with FRS 102, 'The Financial Reporting Standard applicable in the UK and the Republic of Ireland', the Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (Charities SORP (FRS 102)) and the Charities Act 2011.
3. Accounting policies
Basis of preparation
The financial statements have been prepared on the historical cost basis, as modified by the revaluation of certain financial assets and liabilities and investment properties measured at fair value through income or expenditure.
The financial statements are prepared in sterling, which is the functional currency of the entity.
Going concern
There are no material uncertainties about the charity's ability to continue.
Judgements and key sources of estimation uncertainty
The preparation of the financial statements requires management to make judgements, estimates and assumptions that affect the amounts reported. These estimates and judgements are continually reviewed and are based on experience and other factors, including expectations of future events that are believed to be reasonable under the circumstances.
Fund accounting
Unrestricted funds are available for use at the discretion of the trustees to further any of the charity's purposes.
Designated funds are unrestricted funds earmarked by the trustees for particular future project or
commitment.
Restricted funds are subjected to restrictions on their expenditure declared by the donor or through the terms of an appeal, and fall into one of two sub-classes: restricted income funds or endowment funds.
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OURBRAINBANK CIO
Notes to the Financial Statements (continued)
Period from 31 July 2019 to 31 December 2020
3. Accounting policies (continued)
Incoming resources
All incoming resources are included in the statement of financial activities when entitlement has passed to the charity; it is probable that the economic benefits associated with the transaction will flow to the charity and the amount can be reliably measured. The following specific policies are applied to particular categories of income:
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income from donations or grants is recognised when there is evidence of entitlement to the gift, receipt is probable and its amount can be measured reliably.
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legacy income is recognised when receipt is probable and entitlement is established.
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income from donated goods is measured at the fair value of the goods unless this is impractical to measure reliably, in which case the value is derived from the cost to the donor or the estimated resale value. Donated facilities and services are recognised in the accounts when received if the value can be reliably measured. No amounts are included for the contribution of general volunteers.
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income from contracts for the supply of services is recognised with the delivery of the contracted service. This is classified as unrestricted funds unless there is a contractual requirement for it to be spent on a particular purpose and returned if unspent, in which case it may be regarded as restricted.
Resources expended
Expenditure is recognised on an accruals basis as a liability is incurred. Expenditure includes any VAT which cannot be fully recovered, and is classified under headings of the statement of financial activities to which it relates:
-
expenditure on raising funds includes the costs of all fundraising activities, events, non-charitable trading activities, and the sale of donated goods.
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expenditure on charitable activities includes all costs incurred by a charity in undertaking activities that further its charitable aims for the benefit of its beneficiaries, including those support costs and costs relating to the governance of the charity apportioned to charitable activities.
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other expenditure includes all expenditure that is neither related to raising funds for the charity nor part of its expenditure on charitable activities.
All costs are allocated to expenditure categories reflecting the use of the resource. Direct costs attributable to a single activity are allocated directly to that activity. Shared costs are apportioned between the activities they contribute to on a reasonable, justifiable and consistent basis.
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OURBRAINBANK CIO
Notes to the Financial Statements (continued)
Period from 31 July 2019 to 31 December 2020
3. Accounting policies (continued)
Financial instruments
A financial asset or a financial liability is recognised only when the entity becomes a party to the contractual provisions of the instrument.
Basic financial instruments are initially recognised at the amount receivable or paable including any related transaction costs, unless the arrangement constitutes a financing transaction, where it is recognised at the present value of the future payments discounted at a market rate of interest for a similar debt instrument.
Current assets and current liabilities are subsequently measured at the cash or other consideration expected to be paid or received and not discounted.
Debt instruments are subsequently measured at amortised cost.
4. Donations and legacies
| Unrestricted | Total Funds | |
|---|---|---|
| Funds | 2020 | |
| £ | £ | |
| Donations | ||
| Donations | 23,349 | 23,349 |
| ============================ | ============================ |
5. Expenditure on charitable activities by fund type
| Unrestricted | Total Funds | |
|---|---|---|
| Funds | 2020 | |
| £ | £ | |
| Support costs | 5,631 | 5,631 |
| ======================= | ======================= |
6. Expenditure on charitable activities by activity type
| Support | Total funds | ||
|---|---|---|---|
| costs | 2020 | ||
| £ | £ | ||
| Support costs | 5,631 | 5,631 | |
| ======================= | ======================= | ||
| 7. | Analysis of support costs | ||
| Analysis of | |||
| support costs | Total 2020 | ||
| £ | £ | ||
| Communications and IT | 5,500 | 5,500 | |
| General office | 131 | 131 | |
| ----------------------- | ----------------------- | ||
| 5,631 | 5,631 | ||
| ======================= | ======================= |
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OURBRAINBANK CIO
Notes to the Financial Statements (continued)
Period from 31 July 2019 to 31 December 2020
8. Staff costs
The total staff costs and employee benefits for the reporting period are analysed as follows:
The average head count of employees during the period was Nil.
No employee received employee benefits of more than £60,000 during the year (2019: Nil).
9. Trustee remuneration and expenses
No remuneration or other benefits from employment with the charity or a related entity were received by the trustees; or
10. Analysis of charitable funds
Unrestricted funds
| Unrestricted funds | |||||||
|---|---|---|---|---|---|---|---|
| At | |||||||
| At | 31 | December | |||||
| 31 | July | 2019 | Income | Expenditure | 2020 | ||
| £ | £ | £ | £ | ||||
| General funds | – | 23,349 | (5,631) | 17,718 | |||
| ============== | ============================ | ======================= | ============================ |
11. Analysis of net assets between funds
| Unrestricted | Total Funds | |
|---|---|---|
| Funds | 2020 | |
| £ | £ | |
| Current assets | 17,718 | 17,718 |
| ============================ | ============================ |
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