**Charity number: 1178673** 

## **MYELOPATHY.ORG** 

**TRUSTEES' REPORT AND FINANCIAL STATEMENTS** 

**FOR THE YEAR ENDED 30 JUNE 2025** 



## **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 - 20|





**MYELOPATHY.ORG** 

## **REFERENCE AND ADMINISTRATIVE DETAILS OF THE CHARITY, ITS TRUSTEES AND ADVISERS FOR THE YEAR ENDED 30 JUNE 2025** 

## **Trustees** 

Mr Steven Czick Dr Benjamin Davies (appointed 13 November 2024) Mrs Mary Sheila Dugan (appointed 8 January 2026) Dr Eldrid Herrington (resigned 5 January 2026) Dr Mark Kotter Mrs Esther Martin-Moore (appointed 8 January 2026) Dr Rory Murphy (appointed 25 November 2025) Mr Iwan Lloyd Sadler Mr Roy Smith Ms Carol Sun-Schuster 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 2025** 

The Trustees present their annual report together with the financial statements of  Myelopathy.org for the year 1 July 2024 to 30 June 2025. 

## **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: 

1. Supporting and funding scientific research into all aspects of DCM and ensuring the useful results of such research are publicly disseminated. 

2. Raising awareness and understanding of the condition in all its forms including sharing current research and healthcare information. 

3. 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** 

Myelopathy.org’s partnership 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 was wound down during 2024-2025. AOSpine has taken over the management of RECODE DCM although Myelopathy.org Myelopathy.org remains associated with the project. 

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. 

Page 2 



**MYELOPATHY.ORG** 

## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2025** 

## **Objectives and activities (continued)** 

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. It is hoped these will be published by the end of 2026. 

The incubator has also created a triage algorithm for urgent investigation for MRI scan called CHANGE. 

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 reviewed the terminology used for pre-symptomatic DCM and will be conducting a DELPHI consensus process to select a single unifying term. 

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 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, to develop DCM specific peri-operative guidelines. 

## **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 agreement that the 2024 winner was "Antibiotic administration decreases microglial and macrophage activation in a sex-dependent manner following Degenerative Cervical Myelopathy" by Pia M Vidal from the Universidad Católica de la Santísima Concepción (UCSC) in Chile. 

**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 2025 the trial had recruited a further 236 participants. 26 sites have now opened and are recruiting with a further 6 sites being set up (4 outside the UK). 

## **(2) Awareness** 

This section describes the activities of Myelopathy.org has been involved in furthering our second charitable aim, to raise awareness of DCM. 

Page 3 



**MYELOPATHY.ORG** 

## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2025** 

## **Objectives and activities (continued)** 

## **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. 

## **Google Ads and Digital Marketing** 

Myelopathy.org has continued to benefit from the Google Ad Grant awarded during 2024-25. 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. 

We partner with Studio East, a specialist digital marketing agency, to strengthen our online reach and ensure that people searching for information about myelopathy can find reliable support quickly. Studio East manages our Google Ads programme, continuously optimising campaigns, keywords, and landing pages to increase visibility, drive traffic to key information pages, and encourage meaningful actions such as seeking diagnosis information or making donations. Their work includes performance monitoring, testing new strategies, analysing user behaviour, and refining targeting to maximise impact within our budget. Monthly reports show sustained growth in website visits and engagement, helping us reach patients, families, and clinicians worldwide who might otherwise remain unaware of the condition and the support available. 

## **(3) Support** 

## **Support Group** 

Our Myelopathy Support page on Facebook continues to grow and now has over 4,400 followers. Myelopathy.org also runs an on-line private support group on Facebook which has approximately 4,500 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** 

The Myelopathy.org Caregivers Support Group has continued to operate. 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. 

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**MYELOPATHY.ORG** 

## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2025** 

## **Objectives and activities (continued)** 

## **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. Topics discussed are varied and have included topics such as diet and management of DCM, emotional intimacy, music and mobility. 

## **DCM Helpline** 

In April 2024 we received notification that we had been successful in securing £49,990 of funding from The National Lottery (TNL) under its Reaching Communities programme to run a pilot helpline project for those affected by DCM. 

Recruitment and preparation for the project started in October 2024 and the helpline was officially launched on 24 February 2025.  This has been one of the biggest projects we have worked on at Myelopathy.org and is an opportunity to better serve our community by providing clear, compassionate and expert guidance and most importantly a friendly voice at the end of the telephone. 

The team behind the project have included Zahabiya Karimi, Esther Cole, Casey Scarlett, Jay Wardropper, Georgios Toumbas and Prabav Santhosh Kumar.  In addition we have recruited a number of volunteers for the all important task of manning the telephones and this has included people with DCM who bring their unique insight into the difficulties of living with the condition. 

From the very first call, it was clear how much this service mattered. Over the course of the pilot, our dedicated volunteer call-handlers offered direct support and guidance to more than 100 individuals seeking help with DCM. Every single caller told us that they felt more informed or reassured after speaking with us, and more than three-quarters had their concerns resolved. Almost 95% rated the service four out of five or higher, with many describing it as an essential service that must continue. For some, the helpline was a lifeline – simply having a place to talk openly and receive compassionate guidance was transformative. 

Here are just a few of the voices that remind us why this service is so important: 

- “Please keep your funding and service for people like us as we have no support and doctors don’t understand. Struggling to get neurosurgeons involved at the minute. So little info on this condition. I’m so happy to find Myelopathy.org and this helpline.” 

- “To receive a welcome at the beginning of the call and to know I was speaking to a person with my condition who not only cared but understood my fear and isolation was a light at the end of a tunnel.” 

- “I contacted the helpline today and I spoke to one of the volunteer call handlers. The information he gave me confirmed that I’m going down the correct pathway to get a proper diagnosis. It was really helpful.” 

Beyond the numbers and testimonials, the helpline played a wider role too. It created a safe space where people could share their struggles, ask questions, and connect with others who understood. It encouraged closer collaboration with medical professionals, helping ensure up-to-date and reliable information reached those who needed it. And it contributed to our wider mission of raising awareness about the importance of early diagnosis and appropriate management of DCM. 

Although this pilot ended on 24 August 2025, we are already working on the next phase. Our experience over the past six months has shown how vital this service is, and we are determined to build on its success. This pilot has shown what we already knew to be true: that people affected by DCM need, value, and deserve this kind of dedicated support. 

Page 5 



**MYELOPATHY.ORG** 

## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2025** 

## **Objectives and activities (continued)** 

We have submitted a reapplication to TNL for 3 years of continued funding. 

## **Achievements and performance** 

## **a. Review of activities** 

Below is a brief summary of the main achievements of Myelopathy.org this year. 

## **Fundraising** 

## **Miles for Myelopathy 2025** 

In May 2025 we invited our beneficiaries to join us for Miles for Myelopathy 2025, our first annual fundraising initiative encouraging individuals to take part in activities of their choice to raise donations for Myelopathy.org. We set an ambitious target of raising £2,000 and amazingly we more than doubled this figure, raising an astonishing **£4,300** . 

The idea for Miles for Myelopathy was created by our inspiring community member Lorraine Gilliver, and invited our beneficiaries to move in any way that suited them—walking, running, rolling, swimming, or cycling—and tracking miles throughout May. 

People also supported the effort by buying the Miles for Myelopathy merchandise which included t-shirts and hoodies in bold orange, classic black, and crisp white. 

Thank you to everyone who was involved for what we hope will be an annual event. 

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 2024-25 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 the DCM Helpline. 

## **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 to partner NIHR funded clinical trials to bring the voice of people with DCM to these trials. During 2024-5 we received £49,990 of funding from The National Lottery (TNL) under its Reaching Communities programme to run a pilot helpline project for those affected by DCM. The helpline was launched for a 6 month pilot period at the end of February 2025. 

We have continued to develop weekly blogs to better inform our community about the work of Myelopathy.org. 

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**MYELOPATHY.ORG** 

## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2025** 

## **Achievements and performance (continued)** 

## **Conferences** 

## **The Society of British Neurological Surgeons Annual Conference, Birmingham, UK September 2024.** 

Our Chair of Trustees, Helen Wood and Director, Zahabiya Karimi attended this conference to raise awareness of Myelopathy.org. 

## **AIMS Summit: Innovating Healthcare Through Collaboration, Chicago, USA, March 2025.** 

Trustee Dr Rory Murphy spoke at this conference of the urgent need to raise awareness of DCM, emphasising early diagnosis, patient-centred care and cross-speciality collaboration. 

## **Royal College of Nursing London Spinal Nursing Conference, May 2025, London UK.** 

Our Chair of Trustees, Helen Wood, Director, Zahabiya Karimiand patient Michelle Caton Richard attended this conference to raise awareness of Myelopathy.org amongst spinal nurses. 

Helen and Michelle both made speeches about the need for awareness raising and early diagnosis.  Michelle, a nurse with over 25 years experience shared her story of struggling to receive a diagnosis of DCM and the disability she has subsequently suffered. 

## **Global Spine Conference, May 2025, Rio de Janeiro, Brazil.** 

Our co-founder Dr Ben Davies and fellow trustee Dr Aditya Vedantam spoke at this conference of over 2,200 spine professionals from over 80 countries about personalised medicine in DCM treatment. 

## **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. 

Page 7 



**MYELOPATHY.ORG** 

## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2025** 

## **Structure, governance and management (continued)** 

## **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. 

## **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: 

- select suitable accounting policies and then apply them consistently; 

- observe the methods and principles of the Charities SORP (FRS 102); 

- make judgements and accounting estimates that are reasonable and prudent; 

- state whether applicable UK Accounting Standards (FRS 102) have been followed, subject to any material departures disclosed and explained in the financial statements; 

- 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. 

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## **MYELOPATHY.ORG** 

## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2025** 

10 Apr 2026 Approved by order of the members of the board of Trustees on                                 and signed on their behalf by: 


Helen Wood (Apr 10, 2026, 1:36pm) 

**Ms Helen J Wood** Trustee 

Page 9 



**MYELOPATHY.ORG** 

## **INDEPENDENT EXAMINER'S REPORT FOR THE YEAR ENDED 30 JUNE 2025** 

## **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 2025. 

## **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: 

1. accounting records were not kept in respect of the charity as required by section 130 of the 2011 Act; or 

2. the accounts do not accord with those records; or 

3. 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 FCAChristopher Dougherty (Apr 10,2026, 1:48pm) 

10 Apr 2026 Dated: 

**Lakin Rose Limited** Cambridge House Camboro Business Park Girton Cambridge CB3 0QH 

Page 10 



**MYELOPATHY.ORG** 

## **STATEMENT OF FINANCIAL ACTIVITIES FOR THE YEAR ENDED 30 JUNE 2025** 

|**Note**<br>**Income from:**<br>Donations<br>3<br>Charitable activities<br>4<br>Investments<br>5<br>**Total income**<br>**Expenditure on:**<br>Raising funds<br>6<br>Charitable activities<br>**Total expenditure**<br>**Net movement in funds**<br>**Reconciliation of funds:**<br>Total funds brought forward<br>Net movement in funds<br>**Total funds carried forward**|**Unrestricted**<br>**funds**<br>**2025**<br>**£**<br>**57,567**<br>**-**<br>**66**<br>**57,633**<br>**5,280**<br>**51,240**<br>**56,520**<br>**1,113**<br>**37,305**<br>**1,113**<br>**38,418**|**Restricted**<br>**funds**<br>**2025**<br>**£**<br>**35,442**<br>**-**<br>**-**<br>**35,442**<br>**1,920**<br>**33,522**<br>**35,442**<br>**-**<br>**-**<br>**-**<br>**-**|**Total**<br>**funds**<br>**2025**<br>**£**<br>**93,009**<br>**-**<br>**66**<br>**93,075**<br>**7,200**<br>**84,762**<br>**91,962**<br>**1,113**<br>**37,305**<br>**1,113**<br>**38,418**|_Total_<br>_funds_<br>_2024_<br>_£_<br>_69,773_<br>_5,152_<br>_-_<br>_74,925_<br>_1,800_<br>_73,318_<br>_75,118_<br>_(193)_<br>_37,498_<br>_(193)_<br>_37,305_|
|---|---|---|---|---|



The Statement of Financial Activities includes all gains and losses recognised in the year. 

The notes on pages 13 to 20 form part of these financial statements. 

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**MYELOPATHY.ORG** 

## **BALANCE SHEET AS AT 30 JUNE 2025** 

|**Note**<br>**Current assets**<br>Debtors<br>11<br>Cash at bank and in hand<br>**Current liabilities**<br>Creditors: amounts falling due within one<br>year<br>12<br>**Net current assets**<br>**Total net assets**<br>**Charity funds**<br>Restricted funds<br>13<br>Unrestricted funds<br>13<br>**Total funds**|**1,059**<br>**60,561**<br>**61,620**<br>**(23,202)**|**2025**<br>**£**<br>**38,418**<br>**38,418**<br>**-**<br>**38,418**<br>**38,418**|_6,276_<br>_36,303_<br>_42,579_<br>_(5,274)_|_2024_<br>_£_<br>_37,305_|
|---|---|---|---|---|
||||||
|||||_37,305_|
|||||_-_<br>_37,305_|
||||||
|||||_37,305_|



The financial statements were approved and authorised for issue by the Trustees on _________________________________________________ and signed on their behalf by: 10 Apr 2026 


Helen Wood (Apr 10, 2026, 1:36pm) 

**Ms Helen J Wood** Trustee 

The notes on pages 13 to 20 form part of these financial statements. 

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**MYELOPATHY.ORG** 

## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 30 JUNE 2025** 

## **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 2025** 

## **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 Interest receivable** 

Interest on funds held on deposit is included when receivable and the amount can be measured reliably by the charity; this is normally upon notification of the interest paid or payable by the institution with whom the funds are deposited. 

## **2.5 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. 

## **2.6 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. 

## **2.7 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 2025** 

## **3. Income from donations** 

|Donations<br>Grants<br>_Total 2024_|**Unrestricted**<br>**funds**<br>**2025**<br>**£**<br>57,567<br>-<br>57,567<br>_56,490_|**Restricted**<br>**funds**<br>**2025**<br>**£**<br>-<br>35,442<br>35,442<br>_13,283_|**Total**<br>**funds**<br>**2025**<br>**£**<br>**57,567**<br>**35,442**<br>**93,009**<br>_69,773_|_Total_<br>_funds_<br>_2024_<br>_£_<br>_56,490_<br>_13,283_|
|---|---|---|---|---|
|||||_69,773_|
||||||



## **4. Income from charitable activities** 

|Research services<br>**Investment income**<br>Interest receivable|**Unrestricted**<br>**funds**<br>**2025**<br>**£**<br>-<br>**Unrestricted**<br>**funds**<br>**2025**<br>**£**<br>66|**Total**<br>**funds**<br>**2025**<br>**£**<br>**-**<br>**Total**<br>**funds**<br>**2025**<br>**£**<br>**66**|_Total_<br>_funds_<br>_2024_<br>_£_<br>_5,152_|
|---|---|---|---|
||||_Total_<br>_funds_<br>_2024_<br>_£_<br>_-_|



## **5. Investment income** 

Page 15 



**MYELOPATHY.ORG** 

## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 30 JUNE 2025** 

## **6. Expenditure on raising funds** 

## **Costs of raising voluntary income** 

|**Unrestricted**<br>**funds**<br>**2025**<br>**£**<br>Costs of raising voluntary income<br>5,280<br>_Total 2024_<br>_1,800_|**Restricted**<br>**funds**<br>**2025**<br>**£**<br>1,920<br>_-_|**Total**<br>**funds**<br>**2025**<br>**£**<br>**7,200**<br>_1,800_|_Total_<br>_funds_<br>_2024_<br>_£_<br>_1,800_|
|---|---|---|---|
|||||



## **7. Analysis of expenditure by activities** 

|Charitable activities<br>_Total 2024_|**Activities**<br>**undertaken**<br>**directly**<br>**2025**<br>**£**<br>3,740<br>_2,057_|**Support**<br>**costs**<br>**2025**<br>**£**<br>81,022<br>_71,261_|**Total**<br>**funds**<br>**2025**<br>**£**<br>**84,762**<br>_73,318_|_Total_<br>_funds_<br>_2024_<br>_£_<br>_73,318_|
|---|---|---|---|---|
||||||



## **Analysis of direct costs** 

|Education<br>Research|**Charitable**<br>**activities**<br>**2025**<br>**£**<br>90<br>3,650<br>3,740|**Total**<br>**funds**<br>**2025**<br>**£**<br>**90**<br>**3,650**<br>**3,740**|_Total_<br>_funds_<br>_2024_<br>_£_<br>_2,057_<br>_-_|
|---|---|---|---|
||||_2,057_|



Page 16 



**MYELOPATHY.ORG** 

## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 30 JUNE 2025** 

## **7. Analysis of expenditure by activities (continued)** 

## **Analysis of support costs** 

|Staff costs<br>General office expenses<br>Computer expenses<br>Insurance<br>Subscriptions<br>Travel and subsistence<br>Google/Meta advertisements<br>Bank charges<br>Training / supervision<br>Grants payable<br>Consultancy<br>Governance costs|**Charitable**<br>**activities**<br>**2025**<br>**£**<br>36,153<br>5,066<br>390<br>491<br>519<br>547<br>17,621<br>53<br>1,254<br>2,705<br>11,213<br>5,010<br>81,022|**Total**<br>**funds**<br>**2025**<br>**£**<br>**36,153**<br>**5,066**<br>**390**<br>**491**<br>**519**<br>**547**<br>**17,621**<br>**53**<br>**1,254**<br>**2,705**<br>**11,213**<br>**5,010**<br>**81,022**|_Total_<br>_funds_<br>_2024_<br>_£_<br>_29,066_<br>_3,426_<br>_613_<br>_495_<br>_267_<br>_-_<br>_24,524_<br>_-_<br>_-_<br>_-_<br>_11,100_<br>_1,770_|
|---|---|---|---|
||||_71,261_|



## **8. Independent examiner's remuneration** 

The independent examiner's remuneration amounts to an independent examiner fee of £5,010 ( _2024_ - _£1,770_ ). 

Page 17 



**MYELOPATHY.ORG** 

## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 30 JUNE 2025** 

## **9. Staff costs** 

|Wages and salaries<br>Contribution to defined contribution pension schemes<br>The average number of persons employed by the charity during the year was<br>Management|**2025**<br>**£**<br>**35,314**<br>**839**<br>**36,153**<br>as follows:<br>**2025**<br>**No.**<br>**1**|_2024_<br>_£_<br>_28,401_<br>_665_|
|---|---|---|
||||
|||_29,066_|
|||_2024_<br>_No._<br>_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 2025, no Trustees received any remuneration or other benefits _(2024 - £NIL)_ . 

During the year ended 30 June 2025, no Trustee expenses have been incurred _(2024 - £NIL)_ . 

## **11. Debtors** 

|Prepayments and accrued income<br>Tax recoverable|**2025**<br>**£**<br>**1,059**<br>**-**<br>**1,059**|_2024_<br>_£_<br>_2,276_<br>_4,000_|
|---|---|---|
||||
|||_6,276_|



Page 18 



**MYELOPATHY.ORG** 

## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 30 JUNE 2025** 

## **12. Creditors: Amounts falling due within one year** 

|Other taxation and social security<br>Other creditors<br>Accruals and deferred income|**2025**<br>**£**<br>**5,224**<br>**174**<br>**17,804**<br>**23,202**|_2024_<br>_£_<br>_1,756_<br>_2,078_<br>_1,440_|
|---|---|---|
||||
|||_5,274_|



## **13. Statement of funds** 

## **Statement of funds - current year** 

|**Unrestricted funds**<br>General Funds<br>**Restricted funds**<br>DCM Helpline<br>**Total of funds**|**Balance at 1**<br>**July 2024**<br>**£**<br>**37,305**<br>**-**<br>**37,305**|**Income**<br>**£**<br>**57,633**<br>**35,442**<br>**93,075**|**Expenditure**<br>**£**<br>**(56,520)**<br>**(35,442)**<br>**(91,962)**|**Balance at**<br>**30 June**<br>**2025**<br>**£**<br>**38,418**|
|---|---|---|---|---|
|||||**-**|
|||||**38,418**|



## **DCM Helpline Fund** 

The National Lottery Community Fund provided grants through the Reaching Communities/Partnerships programme over one year to enable Myelopathy.org to pilot a dedicated, accessible and compassionate helpline service for individuals affected by DCM as well as their families and carers. 

Page 19 



**MYELOPATHY.ORG** 

## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 30 JUNE 2025** 

## **13. Statement of funds (continued)** 

## **Statement of funds - prior year** 

|**Unrestricted funds**<br>General Funds<br>**Restricted funds**<br>Decision Making in DCM (previously DCM<br>COINS) Project<br>POLYFIX-DCM Trial fund<br>**Total of funds**|_Balance at_<br>_1 July 2023_<br>_£_<br>_37,498_<br>_-_<br>_-_<br>_-_<br>_37,498_|_Income_<br>_£_<br>_61,642_<br>_7,910_<br>_5,373_<br>_13,283_<br>_74,925_|_Expenditure_<br>_£_<br>_(61,835)_<br>_(7,910)_<br>_(5,373)_<br>_(13,283)_<br>_(75,118)_|_Balance at_<br>_30 June_<br>_2024_<br>_£_<br>_37,305_|
|---|---|---|---|---|
|||||_-_<br>_-_|
|||||_-_|
|||||_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 Cervical **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 




## **Issuer** 

**Issuer** Lakin Rose Limited **Document generated** Fri, 10th Apr 2026 10:54:31 BST **Document fingerprint** aea1b8895edb4e5dd91b7162ddb3c8de 

## **Parties involved with this document** 

## **Document processed** 

## **Party + Fingerprint** 

Fri, 10th Apr 2026 13:36:56 BST Helen Wood - Signer (4bb6b36df1a144aa7c86d457b3f0e7af) Fri, 10th Apr 2026 13:48:29 BST Christopher Dougherty - Signer (10cf3c0d616ecbd140e154597061a93a) 

## **Audit history log** 

## **Date** 

## **Action** 

Fri, 10th Apr 2026 10:54:31 BST Envelope generated by Andrew Robinson (185.145.90.242) Fri, 10th Apr 2026 10:54:31 BST Document generated with fingerprint aea1b8895edb4e5dd91b7162ddb3c8de (185.145.90.242) Fri, 10th Apr 2026 11:09:15 BST Sent the envelope to Helen Wood (helen@myelopathy.org) for signing (185.145.90.242) Fri, 10th Apr 2026 11:09:15 BST Document emailed to helen@myelopathy.org Fri, 10th Apr 2026 11:09:21 BST Helen Wood opened the document email. (66.249.93.76) Fri, 10th Apr 2026 11:09:23 BST Helen Wood opened the document email. (66.249.93.76) Fri, 10th Apr 2026 11:49:07 BST Helen Wood opened the document email. (66.249.93.78) Fri, 10th Apr 2026 11:49:55 BST Helen Wood opened the document email. (66.249.93.78) Fri, 10th Apr 2026 11:50:03 BST Helen Wood viewed the envelope (92.239.90.118) Fri, 10th Apr 2026 13:36:56 BST Helen Wood signed the envelope (92.239.90.118) Fri, 10th Apr 2026 13:36:56 BST Sent the envelope to Christopher Dougherty (chris.dougherty@lakinrose.co.uk) for signing (92.239.90.118) Fri, 10th Apr 2026 13:36:56 BST Document emailed to chris.dougherty@lakinrose.co.uk Fri, 10th Apr 2026 13:46:58 BST Christopher Dougherty viewed the envelope (185.145.90.242) Fri, 10th Apr 2026 13:47:15 BST Christopher Dougherty viewed the envelope (72.145.144.237) Fri, 10th Apr 2026 13:48:29 BST Christopher Dougherty signed the envelope (185.145.90.242) Fri, 10th Apr 2026 13:48:29 BST This envelope has been signed by all parties (185.145.90.242) Fri, 10th Apr 2026 13:48:29 BST Signed document confirmation emailed to helen@myelopathy.org (185.145.90.242) 

Fri, 10th Apr 2026 13:48:29 BST 

Signed document confirmation emailed to chris.dougherty@lakinrose.co.uk (185.145.90.242) 



Fri, 10th Apr 2026 13:48:29 BST 

Signed document confirmation emails have been sent to all parties. 

Document URL: 

https://api.signable.app/shareable/envelope?t=c161915e-5ff1-438e-b2f5-d5 4bb2a9356c (185.145.90.242) 

