Charity number: 1178673
MYELOPATHY.ORG
TRUSTEES' REPORT AND FINANCIAL STATEMENTS
FOR THE YEAR ENDED 30 JUNE 2024
MYELOPATHY.ORG
CONTENTS
| Page | |
|---|---|
| Reference and administrative details of the charity, its Trustees and advisers | 1 |
| Trustees' report | 2 - 9 |
| Independent examiner's report | 10 |
| Statement of financial activities | 11 |
| Balance sheet | 12 |
| Notes to the financial statements | 13 - 21 |
MYELOPATHY.ORG
REFERENCE AND ADMINISTRATIVE DETAILS OF THE CHARITY, ITS TRUSTEES AND ADVISERS FOR THE YEAR ENDED 30 JUNE 2024
Trustees
Mr Steven Czick (appointed 27 June 2024) Dr Benjamin Davies (appointed 13 November 2024) Dr Johann Graggaber (resigned 12 December 2023) Dr Eldrid Herrington Mrs Weslie R Janeway (resigned 25 May 2024) Dr Mark Kotter Dr Rory Murphy (appointed 25 November 2024) Mr Iwan Lloyd Sadler Mr Roy Smith Ms Carol Sun-Schuster Mr David Townshend (resigned 1 May 2024) Dr Aditya Vedantam (appointed 13 November 2024) Ms Helen J Wood, Chair
Charity registered number
1178673
Principal office
Lakin Rose Limited Cambridge House Camboro Business Park Girton Cambridge CB3 0QH
Independent examiner
C P J Dougherty, FCA Lakin Rose Limited Cambridge House Camboro Business Park Girton Cambridge CB3 0QH
Page 1
MYELOPATHY.ORG
TRUSTEES' REPORT FOR THE YEAR ENDED 30 JUNE 2024
The Trustees present their annual report together with the financial statements of the Myelopathy.org for the year 1 July 2023 to 30 June 2024.
Objectives and activities
a. Policies and objectives
To advance health and education in all aspects of Degenerative Cervical Myelopathy (DCM) in particular but not exclusively by:
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Supporting and funding scientific research into all aspects of DCM and ensuring the useful results of such research are publicly disseminated.
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Raising awareness and understanding of the condition in all its forms including sharing current research and healthcare information.
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Supporting and promoting improved physical and mental outcomes for patients including establishing support for patients, carers and health professionals.
In setting objectives and planning for activities, the Trustees have given due consideration to general guidance published by the Charity Commission relating to public benefit, including the guidance 'Public benefit: running a charity (PB2)'.
b. Main activities undertaken to further the charity's purposes for the public benefit
(1) Research
The following section summarises the projects that Myelopathy.org has been involved in which further our first charitable aim, to support research in the field of DCM. Below we have included further explanations of each of the projects which in each case are being done to better understand the condition and the best ways to treat it, in order to improve the lives of the people affected by it. We believe that this is for the future public benefit and fulfils our obligations as trustees.
AO Spine RECODE DCM - transition to Myelopathy.org
Myelopathy.org has continued to partner with AO Spine RECODE DCM, an international consensus initiative to involve people with DCM alongside healthcare professionals, in the design and direction of DCM research. Myelopathy.org has taken the lead in managing this collaboration during the year after entering into a 3-year transition agreement with AO Spine In May 2022 to ensure the efficient handover of the RECODE DCM project to Myelopathy.org.
The Steering Committee, established in October 2022 has continued to work to strategise and guide this scientific expansion. We are very grateful to this team of experts, with both lived experience and professional experience of Degenerative Cervical Myelopathy (DCM), who have risen to the challenge of resolving key scientific and clinical problems.
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MYELOPATHY.ORG
TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2024
Objectives and activities (continued)
RECODE-DCM Steering Committee
David Anderson, physiotherapist, Australia Tammy Blizzard, person with DCM, USA Tim Boerger, person with DCM, USA Chad Cook, physiotherapist, USA Sheila Dugan, person with DCM, USA Michael Fehlings, neurosurgeon, Canada Julio Furlan, neurologist, Canada James Guest, neurosurgeon, USA Manabu Ito, orthopaedic surgeon, Japan Sukhvinder Kalsi-Ryan, physiotherapist, Canada Mark Kotter, neurosurgeon and co-founder of Myelopathy.org, UK Abdul Lalkhen, pain specialist, UK Anna MacDowall, orthopaedic surgeon, Sweden Allan Martin, neurosurgeon, USA Esther Martin-Moore, person with DCM, UK James Milligan, family doctor, USA Aria Nouri, neurosurgeon, Switzerland Iwan Sadler, person with DCM and co-founder of Myelopathy.org, UK Lindsay Tetreault, neurologist, USA Caroline Treanor, physiotherapist, UK Luiz Vialle, orthopaedic surgeon, Brazil Lianne Wood, physiotherapist, UK Carl Zipser, neurologist, Switzerland
The RECODE-DCM research network now has over 1000 professional members from over 15 different healthcare disciplines.
RECODE-DCM Incubators
The goal of our incubators is to resolve the Top 10 Research Priorities that were identified through the AO Spine RECODE-DCM study, in which AO Spine and Myelopathy.org brought together all key stakeholder groups to pinpoint the most crucial questions in DCM. Our international, multidisciplinary incubator teams meet regularly via Zoom to conduct research and share expertise. We sincerely thank all of our incubator members for sparing their time and energy to propel the incubators forward.
The Diagnostic Criteria Incubator is working on the world’s first set of reliable diagnostic criteria for DCM. Early diagnosis is the key to optimal outcomes. At present, people with DCM wait an average of 2 to 5 years for a diagnosis; however, treatment within 4 months is associated with the best chance of a full recovery. Our incubator’s mission is the publication and widespread uptake of robust diagnostic criteria.
A series of formative papers have now been submitted for review to the Global Spine Journal. These include systematic reviews of the diagnostic value of clinical symptoms, and clinically important signs and attributes in distinguishing DCM from other conditions (Dr. L. Tetreault, New York University). We are also submitting an analysis of inclusion and exclusion criteria to be utilised within DCM trials (Prof. K. Margetis, Mount Sinai).
The incubator has just received ethical approval from The University of Cambridge for a Delphi consensus process that would allow us to define diagnostic criteria to help diagnose and manage patients in clinical practice. Our team has also developed a survey for healthcare professionals to rate the signs and symptoms of DCM, in order to inform our diagnostic criteria. We are currently trialling this survey with members of our incubator around the world.
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MYELOPATHY.ORG
TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2024
Objectives and activities (continued)
The Natural History Incubator is working to understand how DCM begins and develops. The group is looking at management of asymptomatic spinal cord compression, and identifying the factors associated with progression into symptomatic DCM. Comprehensive knowledge of the disease course will open avenues for effective intervention.
The incubator has just published a research paper on the results of an international survey to determine how both mild DCM and asymptomatic spinal cord compression (ASCC) are managed in clinical practice across the world. This research demonstrated that health professionals typically offer regular outpatient follow-up visits with patients, but what investigations take place during these visits varies widely. Further research is needed to define best practice and support patient care.
The Peri-Operative Incubator is examining non-operative aspects of DCM management and developing an enhanced recovery pathway for patients prior to, during, and after surgery. The incubator is currently being led by Caroline Treanor, who is overseeing a workstream to develop guidelines for the peri-operative management of DCM. Here, our team is working with the Enhanced Recovery After Surgery (ERAS) Society, who seek to improve care pathways so as to help patients achieve better and earlier recovery following major surgery.
Myelopathy.org Research Prize
Each year Myelopathy.org picks the most significant and original research contribution that aligns with the RECODE-DCM Research Priorities. We had submissions from all over the world, but our independent experts were in unanimous agreement that the 2023 winner was Dr Satkunendrarajah and Dr Aditya from Wisconsin, USA who submitted an innovative research paper on breathing difficulties in people with DCM.
You can listen to Dr. Satkunendrarajah and her co-investigator Dr. Aditya Vedantam on our Myelopathy Matters podcast discuss the research.
RECEDE Myelopathy [ Re generation in Ce rvical De generative Myelopathy ] (University of Cambridge and National Institute for Health Research)
Phase III, double blind, placebo randomised controlled efficacy study of Ibudilast (a medicine) as an additional therapy to decompressive surgery (the gold standard treatment) for DCM. Ibudilast is a medicine currently under investigation for treatment of Multiple Sclerosis, Motor Neuron Disease (ALS) and Brain Tumours. Myelopathy.org continues to support this clinical research trial.
POLYFIX-DCM
(University of Cambridge and National Institute for Health Research).
Myelopathy.org is a partner and supports this clinical trial to compare two types of surgery for DCM. We have brought the voice of people with DCM to the design of this clinical trial and Helen Wood, Chair of the Board of Trustees of Myelopathy.org sits on the trial Steering Committee
The first patient was recruited to the trial at Addenbrooke’s Hospital in Cambridge on 7 July 2023 and by the end of June 2024 the trial had recruited a further 138 participants. 25 sites have now opened and are recruiting with a further 10 sites being set up.
Decision Making in DCM (SHARED-DCM) (Formerly DCM COINS)
In May 2021, Myelopathy.org was awarded an Evelyn Trust Health and Wellbeing Grant to help lay the foundations for quality shared decision making (SDM) in Degenerative Cervical Myelopathy (DCM) in two ways:
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MYELOPATHY.ORG
TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2024
Objectives and activities (continued)
First, developing a Core Information Set (CIS) for DCM to support the “Preparation Phase”. A CIS represents a baseline information “checklist” intended to facilitate a dialogue between patients and professionals in order for patients to make better value-based decisions about their healthcare when multiple options are available. A DCM CIS was proposed, recognising that patients currently struggle to find information about DCM and have no general knowledge, making it difficult for them to enter into a SDM process.
Second, process mapping the care pathway in DCM, to establish the key points at which decisions are made, and if/how a SDM process can be supported. We anticipate that a detailed map of the DCM care pathway could also support other areas of DCM research.
We have now completed this project and have:
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provided a comprehensive review of DCM educational resources and an article capturing patient perspectives on available information, establishing a clear rationale for the project and the development of the CIS and process map.
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successfully developed the first educational tool for DCM, the DCM Diagnosis CIS, with input from an international panel of clinicians and patients.
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developed the first DCM process map, detailing key decision points in clinical care, in collaboration with an international panel of clinicians and patients.
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piloted the CIS at Addenbrooke’s Hospital, gathering initial feedback from patients and clinicians using both in-house measures and pre-validated tools.
The work completed establishes a solid rationale and launchpad for future research focused on enhancing knowledge and awareness of DCM among patients and clinicians. Notably, this work has laid the groundwork for developing patient decision-making tools. The preliminary assessment of the CIS at Addenbrooke’s Hospital provides an essential foundation for evaluating its feasibility for adoption in NHS clinical practice.
(2) Awareness
This section describes the activities of Myelopathy.org has been involved in furthering our second charitable aim, to raise awareness of DCM.
Myelopathy.org website
Following the launch of our enhanced website in April 2023 our website has continued to be the ‘shop front’ of all that we do at Myelopathy.org. This fresh look and improved content has continued to have a positive impact on all our community making it easier to access much needed information about DCM.
Weekly Blog
Following its launch in April 2022 we have continued to publish a weekly blog post which includes interviews with volunteers, updates from our support group and articles about DCM research. All our blogs are available to listen to as well as read as people with DCM sometimes find it more comfortable to listen to content rather than read it.
Myelopathy Matters PodCasts
Myelopathy Matters is a PodCast series produced by Myelopathy.org and series 5 was launched in January 2025. The aim of the PodCast is to bring the latest information on living with, managing and understanding DCM, through expert guests from around the world.
PodCasts are a popular medium, and well suited for listeners with DCM, who may become uncomfortable sitting watching a screen for example.
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MYELOPATHY.ORG
TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2024
Objectives and activities (continued)
Google Ads
Myelopathy.org has continued to benefit from the Google Ad Grant awarded during 2023-24. This has enabled Myelopathy.org to take advantage of the $10,000 USD monthly budget of in-kind Google Ads advertising credit through the Google Ad Grants program.
Our Google Ads campaigns has focused on two key objectives in different geographical locations:
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targeting aware groups
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targeting non-aware groups
(3) Support
Support Group
Our Myelopathy Support page on Facebook continues to grow and now has over 4,000 followers. Myelopathy.org also runs an on-line private support group on Facebook which has approximately 3500 members. This group is growing and we typically see 200 posts, 3,000 comments and 5,000 reactions each month.
This group helps to reduce isolation for our community and increases their knowledge of DCM. The group is run by volunteers, all of whom have DCM, and provides a unique space for our community to interact and engage on a one-to-one basis with people in similar circumstances. The group provides emotional support, social networks and educational resources. Members of the DCM community also run a peer mentoring programme where people with significant lived experience of DCM provide information and support to others during different stages. of their DCM journey.
Both groups are led by Iwan Sadler, co-founder of Myelopathy.org and a person with DCM.
Caregivers Support Group
In February 2023 the Myelopathy Support Group launched a Myelopathy.org Caregivers Support Group. This separate group provides a safe and supportive space for caregivers to openly talk to each other and also give them the help and support they also need. We would like to thank Kevin Martin-Moore for leading this initiative.
Coffee with Esther
Esther Martin-Moore has continued to run her hugely popular virtual Coffee Break meetings for people with DCM. The coffee breaks have become an increasingly popular feature of the Support Group and are much appreciated by the members.
Podcasts
The Myelopathy Matters PodCast series offers the DCM community an additional platform to learn about what is happening at Myelopathy.org. The series includes information on research projects, interviews with leading healthcare professionals in the field of DCM and information from people with DCM. This helps to fulfil our objective of supporting and improving the physical and mental outcomes for people with DCM by providing a supportive and informative information source.
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MYELOPATHY.ORG
TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2024
Objectives and activities (continued)
Yoga
Helen McBain, a yoga teacher, launched a series of on-line yoga sessions for members of our support group in 2023. The sessions were devised specifically for people with DCM and the emphasis was about listening to your body. Helen tailored the sessions to individual needs to ensure everyone was able to get the most out of the session.
Achievements and performance
a. Review of activities
Below is a brief summary of the main achievements of Myelopathy.org this year.
Fundraising
We continue to receive support from the Evelyn Trust for our Shared DCM project and now also receive support from AO Spine for the RECODE -DCM project.
In July 2023 we launched our first Summer Fundraiser when we invited our community to raise much needed funds by getting involved in challenges. Our Festive Fundraiser invited our community to become regular donors. Regular donations (whatever the size) are incredibly important to us and help us to plan for the future.
2024 saw the launch of the Myelopathy.org stationery collection. The products are designed by people living with DCM and this initiative raises much needed awareness and funds.
In May 2024 Dr Rory Murphy from the Barrow Neurological Institute in the USA and now a trustee Myelopathy.org ran across the Grand Canyon to raise awareness and funds. Rory smashed his fundraising target of US$1,500 by raising over US$2,200.
In addition to these we have continued to receive much needed donations from our beneficiaries and their supporters together with donations (both large and small) from other donors.
Volunteers
Volunteers are key to everything we do at Myelopathy.org and we could not continue to operate without their incredible support, in particular our fantastic group of volunteers (all people with DCM) who run our support group. During 2023-24 we continued to build up a professional volunteer programme to expand our capacity. Volunteers have continued to work on the following projects; website maintenance, content for all areas of our work, general charity administration, grant writing and research, Human Resources and Shared DCM.
Operations, outreach, and communication
Programmes
We have continued to be a partner in RECODE-DCM and continue to work with AO Spine on this project.
We have continued work on the Shared DCM project to create the first comprehensive education framework for people with DCM.
We have continued to partner NIHR funded clinical trials to bring the voice of people with DCM to these trials.
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MYELOPATHY.ORG
TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2024
Achievements and performance (continued)
During 2023-24 Myelopathy.org applied for funding to The National Lottery (TNL) under its Reaching Communities programme to run a pilot helpline project for those affected by DCM. We received notification that we had been successful in securing £49,990 of funding from TNL in April 2024 and we are absolutely delighted to be able to run this exciting new pilot project for our beneficiaries during 2024-25.
We have continued to develop and broadcast our Myelopathy Matters PodCast series and weekly blogs to better inform our community about the work of Myelopathy.org.
Conferences
Ben Davies (co-founder and trustee of Myelopathy.org) was invited by Manabu Ito, a leading spine surgeon from Japan, to deliver a keynote speech at the Japanese Spine Society (JSS) on Degenerative Cervical Myelopathy (DCM). The JSS is Japan’s foremost professional society for spine surgery, dedicated to advancing research, education and clinical excellence in spinal disorders. During the speech, Ben emphasised the critical need for international collaboration to accelerate discoveries in DCM, highlighting that innovation anywhere should be able to help patients everywhere.
Financial review
a. Going concern
After making appropriate enquiries, the Trustees have a reasonable expectation that the charity has adequate resources to continue in operational existence for the foreseeable future. For this reason, they continue to adopt the going concern basis in preparing the financial statements.
b. Reserves policy
At present Myelopathy.org has minimal annual liabilities. Consequently, and based on the limited annual income, it is felt that a reserve fund is not required nor possible at this time.
This position will be reviewed annually by the Trustees.
Structure, governance and management
a. Constitution
Myelopathy.org is a registered charity, number 1178673, and was incorporated on 6 June 2018.
b. Methods of appointment or election of Trustees
The management of the charity is the responsibility of the Trustees who are elected and co-opted under the terms of the Constitution.
c. Financial risk management
The Trustees have assessed the major risks to which the charity is exposed, in particular those related to the operations and finances of the charity, and are satisfied that systems and procedures are in place to mitigate exposure to the major risks.
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MYELOPATHY.ORG
TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2024
Members' liability
The Members of the charity guarantee to contribute an amount not exceeding £1 to the assets of the charity in the event of winding up.
Statement of Trustees' responsibilities
The Trustees are responsible for preparing the Trustees' report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).
The law applicable to charities in England & Wales requires the Trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the charity and of its incoming resources and application of resources, including its income and expenditure, for that period. In preparing these financial statements, the Trustees are required to:
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select suitable accounting policies and then apply them consistently;
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observe the methods and principles of the Charities SORP (FRS 102);
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make judgements and accounting estimates that are reasonable and prudent;
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state whether applicable UK Accounting Standards (FRS 102) have been followed, subject to any material departures disclosed and explained in the financial statements;
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prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charity will continue in business.
The Trustees are responsible for keeping adequate accounting records that are sufficient to show and explain the charity's transactions and disclose with reasonable accuracy at any time the financial position of the charity and enable them to ensure that the financial statements comply with the Charities Act 2011, the Charity (Accounts and Reports) Regulations 2008 and the provisions of the Trust deed. They 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.
07 Apr 2025 Approved by order of the members of the board of Trustees on and signed on their behalf by:
Helen Wood (Apr 7, 2025, 4:43pm)
Ms Helen J Wood Trustee
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MYELOPATHY.ORG
INDEPENDENT EXAMINER'S REPORT FOR THE YEAR ENDED 30 JUNE 2024
Independent Examiner's Report to the Trustees of Myelopathy.org ('the charity')
I report to the charity Trustees on my examination of the accounts of the charity for the year ended 30 June 2024.
Responsibilities and Basis of Report
As the Trustees of the charity you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 ('the 2011 Act').
I report in respect of my examination of the charity's accounts carried out under section 145 of the 2011 Act and in carrying out my examination I have followed the applicable Directions given by the Charity Commission under section 145(5)(b) of the 2011 Act.
Independent Examiner's Statement
Your attention is drawn to the fact that the charity has prepared the accounts in accordance with Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) in preference to the Accounting and Reporting by Charities: Statement of Recommended Practice issued on 1 April 2005 which is referred to in the extant regulations but has been withdrawn.
I understand that this has been done in order for the accounts to provide a true and fair view in accordance with the Generally Accepted Accounting Practice effective for reporting periods beginning on or after 1 January 2015.
I have completed my examination. I confirm that no matters have come to my attention in connection with the examination giving me cause to believe that in any material respect:
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accounting records were not kept in respect of the charity as required by section 130 of the 2011 Act; or
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the accounts do not accord with those records; or
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the accounts do 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.
This report is made solely to the charity's Trustees, as a body, in accordance with Part 4 of the Charities (Accounts and Reports) Regulations 2008. My work has been undertaken so that I might state to the charity's Trustees those matters I am required to state to them in an independent examiner's report and for no other purpose. To the fullest extent permitted by law, I do not accept or assume responsibility to anyone other than the charity and the charity's Trustees as a body, for my work or for this report.
Signed: C P J Dougherty FCA
Dated:
Lakin Rose Limited
Cambridge House Camboro Business Park Girton Cambridge CB3 0QH
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MYELOPATHY.ORG
STATEMENT OF FINANCIAL ACTIVITIES FOR THE YEAR ENDED 30 JUNE 2024
| Note Income from: Donations 3 Charitable activities 4 Investments 5 Total income Expenditure on: Raising funds 6 Charitable activities Total expenditure Net movement in funds Reconciliation of funds: Total funds brought forward Net movement in funds Total funds carried forward |
Restricted funds 2024 £ 13,283 - - 13,283 - 13,283 13,283 - - - - |
Unrestricted funds 2024 £ 56,490 5,152 - 61,642 1,800 60,035 61,835 (193) 37,498 (193) 37,305 |
Total funds 2024 £ 69,773 5,152 - 74,925 1,800 73,318 75,118 (193) 37,498 (193) 37,305 |
Total funds 2023 £ 72,863 6,351 1 79,215 - 97,406 97,406 (18,191) 55,689 (18,191) 37,498 |
|---|---|---|---|---|
The Statement of Financial Activities includes all gains and losses recognised in the year.
The notes on pages 13 to 21 form part of these financial statements.
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MYELOPATHY.ORG
BALANCE SHEET AS AT 30 JUNE 2024
| Note Current assets Debtors 11 Cash at bank and in hand Creditors: amounts falling due within one year 12 Net current assets Total net assets Charity funds Restricted funds 13 Unrestricted funds 13 Total funds |
6,276 36,303 42,579 (5,274) |
2024 £ 37,305 37,305 - 37,305 37,305 |
4,363 38,188 42,551 (5,053) |
2023 £ 37,498 |
|---|---|---|---|---|
| 37,498 | ||||
| - 37,498 |
||||
| 37,498 |
The financial statements were approved and authorised for issue by the Trustees on _______ and signed on their behalf by: 07 Apr 2025
Helen Wood (Apr 7, 2025, 4:43pm)
Ms Helen J Wood Trustee
The notes on pages 13 to 21 form part of these financial statements.
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MYELOPATHY.ORG
NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 30 JUNE 2024
1. General information
The charity is a charitable incorporated organisation (CIO). The charity's address is Lakin Rose Limited, Cambridge House, Camboro Business Park, Girton, Cambridge, CB3 0QH.
2. Accounting policies
2.1 Basis of preparation of financial statements
The financial statements have been prepared in accordance with the Charities SORP (FRS 102) - Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019), the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) and the Charities Act 2011.
The financial statements have been prepared to give a 'true and fair' view and have departed from the Charities (Accounts and Reports) Regulations 2008 only to the extent required to provide a 'true and fair' view. This departure has involved following the Charities SORP (FRS 102) published in October 2019 rather than the Accounting and Reporting by Charities: Statement of Recommended Practice effective from 1 April 2005 which has since been withdrawn.
Myelopathy.org meets the definition of a public benefit entity under FRS 102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy.
2.2 Income
All income is recognised once the charity has entitlement to the income, it is probable that the income will be received and the amount of income receivable can be measured reliably.
Grants are included in the statement of financial activities on a receivable basis. The balance of income received for specific purposes but not expended during the period is shown in the relevant funds on the balance sheet. Where income is received in advance of entitlement of receipt, its recognition is deferred and included in creditors as deferred income. Where entitlement occurs before income is received, the income is accrued.
Income tax recoverable in relation to donations received under Gift Aid or deeds of covenant is recognised at the time of the donation.
2.3 Expenditure
Expenditure is recognised once there is a legal or constructive obligation to transfer economic benefit to a third party, it is probable that a transfer of economic benefits will be required in settlement and the amount of the obligation can be measured reliably. Expenditure is classified by activity. The costs of each activity are made up of the total of direct costs and shared costs, including support costs involved in undertaking each activity. Direct costs attributable to a single activity are allocated directly to that activity. Shared costs which contribute to more than one activity and support costs which are not attributable to a single activity are apportioned between those activities on a basis consistent with the use of resources. Central staff costs are allocated on the basis of time spent, and depreciation charges allocated on the portion of the asset’s use.
Expenditure on raising funds includes all expenditure incurred by the charity to raise funds for its charitable purposes and includes costs of all fundraising activities events and non-charitable trading.
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MYELOPATHY.ORG
NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 30 JUNE 2024
2. Accounting policies (continued)
2.3 Expenditure (continued)
Expenditure on charitable activities is incurred on directly undertaking the activities which further the charity's objectives, as well as any associated support costs.
All expenditure is inclusive of irrecoverable VAT.
2.4 Liabilities and provisions
Liabilities are recognised when there is an obligation at the balance sheet date as a result of a past event, it is probable that a transfer of economic benefit will be required in settlement, and the amount of the settlement can be estimated reliably.
Liabilities are recognised at the amount that the charity anticipates it will pay to settle the debt or the amount it has received as advanced payments for the goods or services it must provide.
Provisions are measured at the best estimate of the amounts required to settle the obligation. Where the effect of the time value of money is material, the provision is based on the present value of those amounts, discounted at the pre-tax discount rate that reflects the risks specific to the liability. The unwinding of the discount is recognised in the statement of financial activities as a finance cost.
2.5 Pensions
The charity operates a defined contribution pension scheme and the pension charge represents the amounts payable by the charity to the fund in respect of the year.
2.6 Fund accounting
General funds are unrestricted funds which are available for use at the discretion of the Trustees in furtherance of the general objectives of the charity and which have not been designated for other purposes.
Restricted funds are funds which are to be used in accordance with specific restrictions imposed by donors or which have been raised by the charity for particular purposes. The costs of raising and administering such funds are charged against the specific fund. The aim and use of each restricted fund is set out in the notes to the financial statements.
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MYELOPATHY.ORG
NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 30 JUNE 2024
3. Income from donations
| Donations Grants Total 2023 |
Restricted funds 2024 Unrestricted funds 2024 £ £ - 56,490 13,283 - 13,283 56,490 27,827 45,036 |
Total funds 2024 £ 56,490 13,283 69,773 72,863 |
Total funds 2023 £ 45,036 27,827 |
|---|---|---|---|
| 72,863 | |||
4. Income from charitable activities
| Unrestricted funds 2024 £ Research services 5,152 Investment income Unrestricted funds 2024 £ Interest receivable - |
Total funds 2024 £ 5,152 Total funds 2024 £ - |
Total funds 2023 £ 6,351 |
|---|---|---|
| Total funds 2023 £ 1 |
5. Investment income
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MYELOPATHY.ORG
NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 30 JUNE 2024
6. Expenditure on raising funds
Costs of raising voluntary income
| Unrestricted | Total | Total | |
|---|---|---|---|
| funds | funds | funds | |
| 2024 | 2024 | 2023 | |
| £ | £ | £ | |
| Costs of raising voluntary income | 1,800 | 1,800 | - |
7. Analysis of expenditure by activities
| Charitable activities Total 2023 Analysis of direct costs Education |
Activities undertaken directly 2024 £ 2,057 2,460 |
Support costs 2024 £ 71,261 94,946 Charitable activities 2024 £ 2,057 |
Total funds 2024 £ 73,318 97,406 Total funds 2024 £ 2,057 |
Total funds 2023 £ 97,406 |
|---|---|---|---|---|
| Total funds 2023 £ 2,460 |
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MYELOPATHY.ORG
NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 30 JUNE 2024
7. Analysis of expenditure by activities (continued)
Analysis of support costs
| Staff costs General office expenses Computer expenses Insurance Subscriptions Travel and subsistence Grant funded Google advertisements Consultancy Governance costs |
Charitable activities 2024 £ 29,066 3,426 613 495 267 - 24,524 11,100 1,770 71,261 |
Total funds 2024 £ 29,066 3,426 613 495 267 - 24,524 11,100 1,770 71,261 |
Total funds 2023 £ 23,469 2,754 485 474 410 1,747 31,200 33,147 1,260 |
|---|---|---|---|
| 94,946 |
8. Independent examiner's remuneration
The independent examiner's remuneration amounts to an independent examiner fee of £1,770 ( 2023 - £1,260 ).
Page 17
MYELOPATHY.ORG
NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 30 JUNE 2024
9. Staff costs
| Wages and salaries Contribution to defined contribution pension schemes The average number of persons employed by the charity during the year was Management |
2024 £ 28,401 665 29,066 as follows: 2024 No. 1 |
2023 £ 22,953 516 |
|---|---|---|
| 23,469 | ||
| 2023 No. 1 |
No employee received remuneration amounting to more than £60,000 in either year.
10. Trustees' remuneration and expenses
During the year ended 30 June 2024, no Trustees received any remuneration or other benefits (2023 - £NIL) .
During the year ended 30 June 2024, no Trustee expenses have been incurred (2023 - £NIL) .
11. Debtors
| Prepayments and accrued income Tax recoverable |
2024 £ 2,276 4,000 6,276 |
2023 £ 3,496 867 |
|---|---|---|
| 4,363 |
Page 18
MYELOPATHY.ORG
NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 30 JUNE 2024
12. Creditors: Amounts falling due within one year
| Trade creditors Other taxation and social security Other creditors Accruals and deferred income |
2024 £ - 1,756 2,078 1,440 5,274 |
2023 £ 1,040 727 1,886 1,400 |
|---|---|---|
| 5,053 |
Page 19
MYELOPATHY.ORG
NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 30 JUNE 2024
13. Statement of funds
Statement of funds - current year
| Unrestricted funds General Funds Restricted funds Decision Making in DCM (previously DCM COINS) Project POLYFIX-DCM Trial fund Total of funds |
Balance at 1 July 2023 £ 37,498 - - - 37,498 |
Income £ 61,642 7,910 5,373 13,283 74,925 |
Expenditure £ (61,835) (7,910) (5,373) (13,283) (75,118) |
Balance at 30 June 2024 £ 37,305 |
|---|---|---|---|---|
| - - |
||||
| - | ||||
| 37,305 |
Decision Making in DCM Project
This fund relates to grants receivable from Evelyn Trust to support this project. A detailed description of this project can be found in the trustees' report.
POLYFIX-DCM Trial Fund
Grant funding towards patient and public engagement with the POLYFIX-DCM ( PO sterior L aminectom y and FIX ation for D egenerative C ervical M yelopathy) trial.
Income and expenses relating to the PPI element of the Distressed Study (a sub study which is part of POLYFIX) and to set up a mechanism to administer any patient travel expenses related to the trial and for a Podcast about the trial.
Page 20
MYELOPATHY.ORG
NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 30 JUNE 2024
13. Statement of funds (continued)
Statement of funds - prior year
| Unrestricted funds General Funds Restricted funds Decision Making in DCM (previously DCM COINS) Project POLYFIX-DCM Trial fund Benefits workshops Total of funds |
Balance at 1 July 2022 £ 55,689 - - - - 55,689 |
Income £ 51,388 8,009 9,867 9,951 27,827 79,215 |
Expenditure £ (69,579) (8,009) (9,867) (9,951) (27,827) (97,406) |
Balance at 30 June 2023 £ 37,498 |
|---|---|---|---|---|
| - - - |
||||
| - | ||||
| 37,498 |
Decision Making in DCM (previously DCM COINS) Project
This fund relates to a grant receivable from Evelyn Trust to support this project. A detailed description of this project can be found in the trustees' report.
POLYFIX-DCM Trial Fund
Grant funding towards patient and public engagement with the POLYFIX-DCM ( PO sterior L aminectom y and FIX ation for D egenerative C ervical M yelopathy) trial.
Benefits workshop fund
Grant funding from National Lottery Communities Fund towards running workshops to help beneficiaries navigate the benefits system.
Page 21
Issuer
Issuer Lakin Rose Limited Document generated Mon, 7th Apr 2025 13:55:35 BST Document fingerprint 591edbe97cb6a8cff1d29eb2cabb023c
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Mon, 7th Apr 2025 16:43:55 BST Helen Wood - Signer (155bfe1dea6acbef393ea63b999f48e7)
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Mon, 7th Apr 2025 13:55:35 BST Mon, 7th Apr 2025 13:55:36 BST Mon, 7th Apr 2025 14:00:46 BST
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Envelope generated by Andrew Robinson (62.31.185.2) Document generated with fingerprint 591edbe97cb6a8cff1d29eb2cabb023c (62.31.185.2) Sent the envelope to Helen Wood (helen@myelopathy.org) for signing (62.31.185.2) Document emailed to helen@myelopathy.org (35.178.171.104) Helen Wood opened the document email. (66.249.93.39) Helen Wood opened the document email. (66.249.93.32) Helen Wood opened the document email. (66.249.93.33) Helen Wood opened the document email. (146.75.174.13) Helen Wood opened the document email. (66.249.93.40) Helen Wood opened the document email. (66.249.93.40) Helen Wood viewed the envelope (82.44.241.98) Helen Wood signed the envelope (82.44.241.98) This envelope has been signed by all parties (82.44.241.98)