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← Association For Multiple Endocrine Neoplasia Disorders

2024-12-31-accounts

ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND) FINANCIAL STATEMENTS

YEAR ENDED 31st DECEMBER 2024

CHARITY NUMBER: 1153890

ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

CONTENTS

REPORT OF THE TRUSTEES 3
ORGANISATIONALSTRUCTURE ANDDECISIONMAKING 3
THECHARITY’S AIMS ANDOBJECTIVES 4
PUBLICBENEFIT 4
ACTIVITIES ANDACHIEVEMENTS 5
FINANCIALREVIEW 9
FINANCIALRESERVESPOLICY 9
RISKMANAGEMENT 10
GOINGFORWARD 10
TRUSTEE’S RESPONSIBILITIES INRELATION TO THEFINANCIALSTATEMENTS 11
CHAIRPERSON’S REPORT 11
CHIEFEXECUTIVE’S REPORT 12
REFERENCE AND ADMINISTRATIVE DETAILS 13
STATEMENT OF FINANCIAL ACTIVITIES 15
BALANCE SHEET 16
NOTES TO THE FINANCIAL STATEMENTS 18

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ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

REPORT OF THE TRUSTEES

The trustees who are also directors of the charity for the purposes of the Companies Act 2006, present their report with the financial statements of the charity for the year ended 31 March 2024. The trustees have adopted the provisions of 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).

AMEND is a Charitable Incorporated Organisation (no.1153890), governed by a constitution, vesting control, and responsibility in the Trustee Board on behalf of the membership.

AMEND has been registered with the Charity Commission as a CIO since September 20th, 2013, and previously an unincorporated association (no. 1099796) from October 2003. The charity’s current Constitution was amended on May 7th, 2016. This amendment was approved by the Charity Commission.

Organisational Structure and Decision Making

The Charity is governed by its Trustees, who are appointed by the Charity membership. Trustees are appointed for a period of three years after which they may seek re-election. The constitution states that there must no less than 3 and no more than 12 Trustees. A process of Trustee elections takes place most years in order to maintain an adequate number of Trustees and to allow for the replacement of those who have completed their term of service. A Chairperson for the Trustees is appointed by the Trustees.

Persons nominated to become Trustees of the Charity must be a member of the Charity and remain a member of the Charity during their tenure.

Trustees are responsible for the strategic direction and operational management of the Charity. When appropriate and necessary the specialist expertise of members and friends is sought to assist in decision-making e.g. in relation to matters of finance, safeguarding and Charity fabric issues.

All elected Trustees will have access to relevant documentation from the Charity Commission pertaining to their responsibilities as a charity trustee, the Charity’s policies, and appropriate guidance materials. Pay reviews for staff are conducted annually by the Trustees.

The policies adopted are those of the Charity Commission publications as per the website. Trustees are reminded periodically to review these documents, and new trustees are issued with access to copies for pursual.

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ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

The Charity’s Aims and Objectives

The object of the Charitable Incorporated Organisation (CIO) is to relieve people who suffer from Multiple Endocrine Neoplasia (M.E.N.) of all types, their families, friends, and carers by all or any of the following means:

  1. Acting as a reliable and accurate source of information for the public concerning M.E.N. and its associated sporadic growths, by:

  2. a. Working with the approval of members of the medical profession who are directly involved in the treatment and research into M.E.N.

  3. b. Collecting, collating, and distributing appropriate and approved information.

  4. c. Producing the Charity’s own patient-aimed approved information.

  5. Promoting a wider knowledge of the illnesses among the medical profession to assist in early and accurate diagnosis.

  6. Providing reliable and accurate information with regard to genetic testing for people with M.E.N. and its associated familial growths, their families, friends, and carers.

  7. Providing emotional support to patients, their families, friends, and carers in the form of contact with others in similar situations in order to facilitate the sharing of experiences.

Public Benefit

The Trustees have paid due regard to guidance issued by the Charity Commission in deciding what activities should be undertaken by the Charity.

AMEND is dedicated to supporting individuals affected by multiple endocrine neoplasia (MEN) and related endocrine disorders. Our mission is to provide comprehensive support, information, and advocacy to improve the lives of those affected.

Our primary beneficiaries are individuals and families affected by MEN and related endocrine disorders. We support them through direct services, educational materials, and support and advocacy efforts.

AMEND’s activities are designed to provide clear public benefit, in line with the Charity Commission’s requirements. We regularly review our policies to ensure compliance and effectiveness.

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ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

Activities and Achievements

Source of Information

In 2024 we started a new project to develop webcasts on different topics. We began with a webcast with AMEND Trustee and Medical Advisor, Professor Karim Meeran (London) on corticosteroids, a class of prescription medication used by many within our communities. This helped to explore some of the myths around steroid treatment. In our second webcast for 2024, we chatted with one of our fundraisers, Steph Webb, who had recently taken up running, and had decided to run 8 different fundraising events in aid of AMEND. The webcast project is continuing into 2025.

AMEND’s 2024 Annual Patient Information Day was held on Saturday 1[st] June in central Birmingham. Almost 100 people attended, including 8 speakers. 38 people completed our feedback survey, reporting that for more than 60%, this had been their first experience of an AMEND Patient Information Day. The majority of sessions attended were rated as excellent, in particular the 2-hour disease-specific Q&A sessions.

‘Excellent, well-organised and informative. Gives me confidence we are supported.’

We developed A4 tear-off pads containing QR codes for accessing, downloading, and printing all our MEN-related patient information books. These will be for use in clinics to give to patients when they are diagnosed and/or facing treatment. This will avoid the current expense of giving out large quantities of our designed and printed books to hospitals.

On social media, we moved our three accounts (AMEND, ACC Support UK, Phaeo Para Support UK) to BlueSky under a single AMEND account to help increase brand recognition and reach in a less toxic environment.

In late 2024, we began preparations for the redevelopment of the ACC Support UK website, thanks to legacy funding from the family and friends of the late Sally Zelenczuk. This work is expected to complete in Spring 2025.

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ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

Provision of Support

Our 4 wonderful Peer Support Volunteers held 12 Peer Support Meetings throughout the year, supporting approximately 30 people in total. In addition, our Scottish Peer Support Volunteer held a Peer Support and Information event in Scotland featuring a Genetic Counsellor speaker, supporting 6 people. We also trialled meetings for partners or carers which was successful, and which now forms part of our ongoing meetings provision. Our Volunteers also took part in their virtual annual training session in the Autumn. Part-way through the year, we successfully recruited a new Peer Support Volunteer, but another sadly stepped down. We continue to recruit new volunteers on an ongoing basis.

AMEND’s psychological support provider, Rareminds, provided 211 one-to-one counselling sessions to a total of 30 members (mean average number of sessions per person x7) at a cost of £13,155. Feedback from 20 users of the service who responded to their end-of-treatment survey was very positive:

“My counsellor was hugely supportive, friendly, and helpful. I felt they had a great understanding of the issues affecting me and understood the complexity of dealing with long term chronic conditions which are very stressful. I would recommend them to anyone as I thought they were brilliant.”

Advocacy & Raising Awareness

Throughout the year, AMEND CEO, Jo Grey, was honoured to be asked to talk about AMEND and patients’ perspectives of unmet needs in their care at the following:

In August, Genomics England removed the RET gene (that causes MEN2/3) from their newborn screening research study. AMEND submitted a response expressing disappointment at this decision. We are grateful to Clinical Geneticists, Drs Fiona Lalloo and Louise Izatt, for working with the research team on this, which has resulted in RET mutation in codon 918 (MEN2B) being reinstated into the study at the next phase.

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ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

We were honoured to be invited by surgeon, Mr Tom Kurzawinski, to co-write an article for the journal, Endocrine-Related Cancer, about patient experiences of living with a RET gene mutation (causing MEN2 and MEN3). Called ‘Living with a RET gene mutation: Patients’ Perspectives,’ the article, co-authored with retired Great Ormond Street Hospital Paediatric Endocrinologist, Dr Caroline Brain, explores the experiences of 4 families through diagnosis and treatment. We highlighted the need for earlier diagnosis, improved psychological support at diagnosis, the importance of wider family predictive genetic testing, and the need for families to be cared for in centres of expertise. We thank all the families involved for their input.

AMEND and Neuroendocrine Cancer UK (NCUK) began negotiations for forming an alliance, called the Neuroendocrine Life Alliance. The Alliance’s mission is to align the charities’ strategic priorities to raise awareness, educate, support, and advocate for all our neuroendocrine disease communities. The Alliance’s aims are to:

  1. Share knowledge and resources for the good of neuroendocrine communities

  2. Develop joint key strategic projects, including:

  3. a. Education programmes

  4. b. Support and wellbeing initiatives

  5. c. Awareness-raising activities

  6. d. Advocacy and policy work

The Neuroendocrine Life Alliance is a work in progress, with 2025 agreed for its launch.

Encouraging Research

Thanks to the Elliot Dallen Trust, we were able to support another £10,000 award for research into adrenocortical cancer (ACC). This was the last year in a 3-year financial commitment to funding research projects through AMEND. The 2024 ACC Research Grant was awarded to Dr Cristina Ronchi from the University of Birmingham for her continuing work to develop a less invasive way to manage ACC patients using blood tests, and minimising use of imaging (Circulating cell-free DNA-based biomarkers for longitudinal monitoring of patients with adrenocortical carcinoma).

As a member of the European MEN Alliance, we distributed their survey on Unmet Needs in MEN Syndromes to our multiple endocrine neoplasia community. This survey is ongoing into 2025. We look forward to being able to use the data gained to raise awareness of issues patients perceive in the care and management of their disease.

We distributed a preliminary research survey by Dr Ruth Casey from the University of Cambridge on pregnancy and starting a family to our multiple endocrine neoplasia community.

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ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

Fundraising

We send our thanks to all our 2024 fundraisers who took on a range of challenges for sponsorship in aid of AMEND:

Thanks also to all those who donate on a regular basis, who purchase merchandise from our websites and TeeShop, and who continue to use the free fundraising platforms for online purchases. All income from these methods go to support our work.

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ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

Financial Review

The charity’s total incoming resources were £95,173 (2023: £80,668). Given the pressure from the cost-of-living crisis and reduced public spending, AMEND has performed well. There was a significant increase in donations and legacies, indicating successful fundraising efforts and increased donor engagement. This mitigated the decrease in income from charitable activities, where AMEND saw a decrease in demand for events/activities generating revenue compared to the previous year. Investment income increased significantly, reflecting better returns on investments, possibly due to favourable market conditions or improved investment strategies. Other income reduced slightly due to lower merchandise sales, which tends to fluctuate each year.

Total expenditure for the year was £106,016 (2023: £112,292). Despite the increase in income, the charity ended the year with a deficit of £10,843, compared to a deficit of £31,624 in 2023. This is a fantastic result for AMEND as it brings us closer to breaking even and limits the reduction in free reserves.

The increase in expenditure on raising funds suggests more investment in fundraising activities, which may have contributed to the higher income from donations and legacies. Expenditure on charitable activities decreased due to more efficient use of resources and fewer activities conducted during the year. Support costs slightly decreased due to better management of administrative expenses. Overall net expenditure decreased significantly, reflecting better financial management and increased efficiency in operations.

We managed to fund £13,240 towards our valuable counselling service and made research grants and awards totalling £10,000 during the year. We would like to thank our members and grant funders who continue to support us.

AMEND’s undesignated unrestricted reserves stand at £76,915 (2023: £38,234). The reclassification of certain funds to unrestricted status in 2024 provides greater flexibility in the allocation and utilisation of resources, especially due to the high-risk nature of the main funding stream (donations and voluntary grants).

Financial Reserves Policy

In 2024, the Trustees reviewed and amended the Financial Reserves policy to state that they considered it prudent to hold a reserve of at least £60,000 (with £10,000 permanently maintained on demand) to ensure that AMEND’s core activities could continue for a period of 6 months in the event of unforeseen difficulties. At the year-end, although the bank balance in the various Current Accounts was £28,393, the Trustees consider the position to be satisfactory as there was a further £84,870 held on the Flagstone account; a total of £113,263.

The trustees review this policy every 6 months at Board Meetings.

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ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

Risk Management

The Trustees have a duty to identify and review the risks to which the charity is exposed and to ensure appropriate controls are in place to provide reasonable assurance against fraud and error. Having assessed the risks, the Trustees are satisfied that systems are in place to mitigate exposure to the major ones. Internal control risks are minimised by the implementation of procedures for all transactions and projects. Procedures are also in place to ensure compliance with the health and safety of members, their families, friends, and carers.

For example, two factor authentication is used on all CMS and finance software systems, two signatories are required for financial transactions, and up-to-date internet security services are in place on all IT devices. Trustee and public liability insurance is in place and renewed regularly, along with insurance for the AMEND office.

Going Forward

The ‘buzzword’ for AMEND’s future is ‘sustainability.’ This work looks at finding more futureproofed and efficient ways to continue to provide all the services we do now into the next few years. Not just this but also ensuring that personnel sustainability is considered through succession planning, and through recruiting volunteers to assist with various aspects of AMEND’s work, such as our social media awareness work. Financial sustainability of course is the thread that runs through all of our work; the need to ensure that AMEND does not rely on one main source of income, but rather, that we work towards a more diverse set of income streams. As ever, the fundraising of our members and friends are critical to the future of AMEND.

Specific projects for 2025 include the development and launch of the new ACC Support UK website, including the development of patient information for parents of children with ACC.

We will continue our AMEND Webcast project as an efficient and effective information resource for our communities on a range of topics of interest. Already in 2025, we have launched Webcasts on Medical Guidelines, and on Parathyroid Surgery.

We continue our work with our patient group colleagues, including within Europe and the wider international community, to create a louder voice to increase awareness of and research interest in our diseases.

As always, we will continue to work with our Medical Advisory Teams to update our patient information resources, and with our support colleagues at Rareminds, and with our Peer Support Volunteers, to ensure that no one is left to deal with their disease alone.

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ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

Trustee’s Responsibilities in Relation to the Financial Statements

The Trustees are responsible for preparing the Trustee’s Annual Report and the financial statements in accordance with the Charities Act 2011 and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

The law applicable to charities in England and 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 the incoming resources and application of resources of the charity for that period. The trustees are responsible for keeping proper accounting records and ensuring compliance with the Charities Act 2011, the Charity Regulations 2008, and the provisions of the trust deed.

They are specifically required to:

Approved by order of the Board of Trustees on Monday 21 July 2025 and signed on their behalf by:

___ ________

Gill Masters (Chair) Lauren Wheeler (Treasurer)

Chairperson’s Report

Reflecting on AMEND’s sustainability, we are pleased to see that various efforts to increase income and reduce expenditure during 2024 have resulted in a much-improved financial performance in a difficult climate. Grant funding remains hard to come by so the contribution to the charity’s income made by our wonderful fundraisers is very important. We are grateful to everyone internally, board members and to our patients and supporters for their ongoing hard work.

We continue to concentrate on educating and supporting patients and their families, raising awareness of the conditions we support amongst medical professionals and providing accurate and up to date information for everyone who needs it. We can only do this with your support – thank you, it is very much appreciated!

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ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

Chief Executive’s Report

At a time when costs are increasing, we are very grateful to everyone who donated, fundraised, or gave AMEND grants or in-kind help in 2024. Accessing grants however remains challenging, with so many other worthy charities applying too. We took a good look at ways to be more efficient and effective, and made a variety of changes to reduce expenditure. As you will have read, we continued our other charitable activities throughout the year with little to no impact from our cost-cutting measures. We could not do what we do without the wonderful help of all our volunteers, including our Peer Support Volunteers, Trustees, Medical Advisory Teams, and anyone who has helped the charity in any way during the year. It truly is a patient group run by patients, just as it was intended to be.

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ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

REFERENCE AND ADMINISTRATIVE DETAILS

Registered Charity Number: 1153890

Principal Office: AMEND, Tyler House, 58-66 Morley Road, Tonbridge, Kent, TN9 1RA

Bank : Charities Aid Foundation Bank, 25 Kings Hill Avenue, Kings Hill, West Malling, Kent ME19 4JQ

Trustees as at December 31 2024

Gill Masters (Chair)

Lauren Wheeler (Incoming Treasurer) – Elected onto Board 15[th] August 2024

Catherine Hamilton-Woodthorpe (Outgoing Treasurer) (Resigned 15/08/2024)

Shahab Khan

Sarah Norman

Graeme Cohen

Mr Robert Millinship

Andy Price

Dr John Ayuk

Ms Miriam Asia, RN

Professor Karim Meeran

Karen Williams (Resigned 15/08/2024)

Patrons

Recorder, Mrs Jo Delahunty, KC, MA (Oxon) Jurisprudence

Professor Rajesh Thakker, May Professor of Medicine, OCDEM, Churchill Hospital, Oxford Mr Shaun Williamson, Actor

Independent Examiner

Dynamix Accountancy: Dane John Works, Gordon Road, Canterbury, Kent, CT1 3PP

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ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

INDEPENDENT EXAMINER'S REPORT TO THE TRUSTEES OF

ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

Independent examiner's report to the trustees of ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

I report to the charity trustees on my examination of the accounts of the Company for the year ended 31 December 2024.

Responsibilities and basis of report

As the charity's trustees of the Company (and also its directors for the purposes of company law) you are responsible for the preparation of the accounts in accordance with the requirements of the Companies Act 2006 ('the 2006 Act').

Having satisfied myself that the accounts of the Company are not required to be audited under Part 16 of the 2006 Act and are eligible for independent examination, I report in respect of my examination of your charity's accounts as carried out under Section 145 of the Charities Act 2011 ('the 2011 Act'). In carrying out my examination I have followed the Directions given by the Charity Commission under Section 145(5) (b) of the 2011 Act.

Independent examiner's statement

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:

  1. accounting records were not kept in respect of the Company as required by Section 386 of the 2006 Act; or

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

  3. the accounts do not comply with the accounting requirements of Section 396 of the 2006 Act 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; or

  4. the accounts have not been prepared in accordance with the methods and principles of the Statement of Recommended Practice for accounting and reporting by charities (applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102)).

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.

Hussein Bhaiji (FCCA) Association of Chartered Certified Accounants Dynamix Accountancy Dane John Works Gordon Road, Canterbury Kent, CT1 3PP

Date: 21st July 2025

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ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

STATEMENT OF FINANCIAL ACTIVITIES

Note
Income
Donations and Legacies
2.
Charitable Activities
3.
Investment Income
4.
Other Income
5.
Total Income
Expenditure
Raising funds
6.
Charitable Activities
7.
Support Costs
8.
Governance Costs
9.
Total Expenditure
Net Income /(expenditure) for the
year
Transfers between funds
17.
Net Movement in Funds
Reconciliation of Funds
Total Funds brought forward
Total Charity Funds carried
forward		 Unrestricted
Restricted
TOTAL
£
£
£
50,648
8,646
59,294
20,000
10,000
30,000
5,451 -
5,451
428-
428
76,527
18,646
95,173
14,791 -
14,791
51,211 20,756
71,966
17,319 107
17,426
1,832-
1,832
85,153
20,863
106,016
(8,627)
(2,217)
(10,843)
7,539 - 7,539
-
(1,088)
(9,756)
(10,843)
108,003
17,033
125,036
106,915
7,277
114,193		 2023
£
36,788
41,369
1,977
534
80,668
9,635
81,789
17,967
2,901
112,292
(31,624)
-
(31,624)
156,660
125,036

Comparative figures for 2023 are in Note 22.

All incoming resources and resources expended derive from continuing activities

The Notes on pages 18-28 form part of the Financial Statements

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ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

BALANCE SHEET

Note
Fixed Assets
Tangible Fixed Assets
11.
Current Assets
Stocks
Debtors & Prepayments
12.
Cash and Bank in Hand
13.
Current Liabilities due within one year
Creditors
14.
Net Current Assets
Total Net Assets
Charity Funds
Restricted funds
16.
Unrestricted funds:
17.
Designated funds
18.
Total Charity Funds carried forward		 2024
£
£
583
583
2,496
5,646
113,263
121,404
(7,794)
(7,794)
113,611
114,193
7,277
76,915
30,000
106,915
114,193		 2023
£
£
1,039
1,039
3,166
7,170
115,729
126,065
(2,068)
(2,068)
123,997
125,036
17,033
38,234
69,769
108,003
125,036		 2023
£
£
1,039
1,039
3,166
7,170
115,729
126,065
(2,068)
(2,068)
123,997
125,036
17,033
38,234
69,769
108,003
125,036
121,404
(7,794)		 126,065
(2,068)
(7,794)
76,915
30,000		 (2,068)
38,234
69,769
125,036
17,033


108,003
125,036

The charitable company is entitled to exemption from audit under section 477 of the Companies Act 2006 for the year ended 31 December 2024.

The members have not required the company to obtain an audit of its financial statements for the year ended 31 December 2024 in accordance with Section 476 pf the Companies Act 2006.

The trustees acknowledge their responsibilities for:

(a) ensuring that the charitable company keeps accounting records that comply with Sections 386 and 387 of the Companies Act 2006 and

(b) preparing financial statements which give a true and fair view of the state of affairs of the charitable company as at the end of each financial year and of its surplus or deficit for each financial year in accordance with the requirements of Sections 394 and 395 and which otherwise comply with the requirements of the Companies Act 2006 relating to financial statements, so far as applicable to the charitable company.

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ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

These financial statements have been prepared in accordance with the provisions applicable to charitable companies subject to the small companies’ regime.

The financial statements were approved by the Board of Trustees and authorised for issue on 21[st] July 2025 and were signed on its behalf by:

Gill Masters (Chair)

Lauren Wheeler (Treasurer)

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ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

NOTES TO THE FINANCIAL STATEMENTS

1. Accounting Policies

1.1 Charity Information

Association for Multiple Endocrine Neoplasia Disorders (AMEND) is an incorporated charity whose registered address is Tyler House, 58-66 Morley Road, Tonbridge, Kent, TN9 1RA.

1.2 Basis of Preparation

The Financial Statements have been prepared in accordance with the Charity's governing document, the Charities Act 2011 and "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 Statements have been prepared under the historical cost convention.

The Charity constitutes a Public Benefit Entity as defined by FRS 102.

1.3 Going Concern

The Trustees consider that there are no material uncertainties about the Charity's ability to continue as a going concern.

1.4 Critical Accounting Estimates and Judgements

The preparation of the Financial Statements requires the Trustees to make judgements, estimates and assumptions that affect the amounts reported for assets and liabilities as at the Balance Sheet date and the amounts reported for revenues and expenses during the year. The estimates and associated assumptions are based on historical experience and other relevant factors. However, the nature of estimation means that actual outcomes could be different.

1.5 Income Recognition

Income is recognised in the Statement of Financial Activities on the following basis:

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ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)

1. Accounting Policies (continued)

1.6 Expenditure Recognition

1.7 Tangible Fixed Assets

All assets costing more than £1,000 are capitalised.

Impairment of assets

At each reporting end date, the Charity reviews the carrying amounts of its tangible assets to determine whether there is any indication that those assets have suffered an impairment loss. If any such indication exists, the recoverable amount of the asset is estimated in order to determine the extent of the impairment loss (if any).

Depreciation

Computer equipment is depreciated over 3 years. Office furniture depreciated over 5 years.

1.8

Stocks

Stocks of unsold merchandise in the Charity are valued at the lower of cost and net realisable value.

1.9 Taxation

As AMEND is a Charitable Incorporated Organisation, the Charity is not liable to income or capital taxes.

1.10 Fund accounting

Unrestricted "General" funds can be used in accordance with the charitable objectives at the discretion of the Trustees.

Designated funds are unrestricted funds earmarked for a specific project or aim: they can be returned to the General unrestricted funds at any time at the discretion of the Trustees. For reporting purposes, they are combined with unrestricted funds and termed "Unrestricted".

Restricted funds can only be used for particular restricted purposes within the objects of the Charity. Restrictions arise when specified by the donor or when funds are raised for particular restricted purposes, and where the funder may require repayment if the conditions are not met.

Further explanation of the nature and purpose of each fund is included in the Notes to the Financial Statements.

1.11 Pension costs and other post-retirement benefits

The Charity operates Defined Contribution plans for its employees. Once the agreed contributions have been paid the Charity has no further payment obligations. The contributions are recognised as an expense when they are due: amounts not paid at the year-end are shown in creditors in the Balance Sheet.

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ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)

2.
Donations and Legacies
Donations and Gift Aid
Total
3.
Charitable Activities
Grants
Total
4.
Investment Income
Bank interest
Total
5.
Other Income
Sale of Merchandise
Other income
Total
6.
Raising funds
Staff costs
Merchandise
Other		 Unrestricted
Restricted
TOTAL
£
£
£
50,648
8,646
59,294
-
-
-
50,648
8,646
59,294
£
£
£
20,000
10,000
30,000
-
-
-
20,000
10,000
30,000
£
£
£
5,451
-
5,451
5,451
-
5,451
£
£
£
426
-
426
2
-
2
428
-
428
£
£
£
9,980
-
9,980
870
-
870
3,941
-
3,941
14,791
-
14,791		 2023
£
36,788
-
36,788
£
41,369
-
41,369
£
1,977
1,977
£
523
11
534
£
7,239
811
1,585
9,635

P a g e 20 | 28

ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)

7.
Charitable Activities
Staff costs
Patient information printing,
booklets, and websites
Patient information events and
conferences
Patient education films
Patient representation
Research grants and awards
ACC support and ACC research
grants
ACC staff costs
Patient support and
counselling
PPS UK
Total
8.
Support Costs
Rent
Staff costs
Printing, postage, and office
supplies
Telephone
IT support
IT software and consumables
Insurance
Finance charges
Exchange difference
Legal fees
Repairs and maintenance
Subscriptions
General
Depreciation
Total		 Unrestricted
Restricted
TOTAL
£
£
£
24,092
-
24,092
3,403
-
3,403
1,982
9,875
11,857
-
-
-
209
-
209
-
10,000
10,000
384
-
384
-
-
-
13,857
881
14,738
384
-
384
51,211
20,756
71,966
£
£
£
9,360
-
9,360
4,316
-
4,316
996
-
996
504
-
504
23
-
23
783
-
783
508
-
508
91
-
91
-
-
-
-
-
-
-
-
-
203
-
203
79
107
187
457
-
457
17,319
107
17,426		 2023
£
24,365
6,352
8,073
-
98
15,500
402
9,048
17,567
384
81,789
£
9,360
4,589
661
462
18
897
625
157
44
35
63
117
-
939
17,967

P a g e 21 | 28

ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)

9.
Governance Costs
Audit / Independent Examination
Other governance costs
Total
10.
Staff Numbers
The average number of employees
11.
Tangible Fixed Assets
Cost or valuation
At 1st January 2024
Additions
Disposals
At 31st December 2024
Depreciation
At 1st January 2024
Charge
At 31st December 2024
Net Book Value
At 31st December 2024
At 31st December 2023		 Unrestricted
Restricted
TOTAL
2023
£
£
£
£
960
-
960
2,400
872
-
872
501
1,832
-
1,832
2,901
during the year was 2 (2023: 2).
Computer
Equipment
Office
Equipment
Total Tangible
Fixed Assets
£
£
£
3,448
10,673
14,121
-
-
-
-
-
-		 2023
£
2,400
501
2,901
3,448
10,673
14,121
3,231
9,850
13,082
217
240
457
3,448
10,090
13,538
-
583
583
217
823
1,039

10. Staff Numbers

11. Tangible Fixed Assets

P a g e 22 | 28

ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)

12. Debtors & Prepayments: amounts falling due within one year:

Unrestricted
Restricted
£
£
Trade debtors
-
-
Prepayments and accrued income
5,646
-
5,646
-
13.
Cash and Bank in Hand
£
£
Current Accounts
28,393
-
Deposit Reserve Accounts
84,870
-
113,263
-
14.
Creditors: amounts falling due within one year:
£
£
Other taxation and social security
1,425
-
Other creditors
4,257
-
Trade creditors and accruals
2,112
-
7,794
-
15.
Deferred Income
Arising from grants, memberships,
events, and training
Deferred income is included in the financial statements as follows:
Deferred income is included within:
Current Liabilities
Movements in the year:
Brought forward
Released from previous periods
Resources deferred in the year
Deferred income at 31 December 2024		 Unrestricted
Restricted
£
£
-
-
5,646
-		 TOTAL
£

-

5,646

5,646
£

28,393

84,870

113,263
£

1,425

4,257

2,112

7,794
2024
£
4,000
2024
£
4,000
-
-
4,000
4,000		 2023
£
-
7,170
5,646
-		 7,170
£
£
28,393
-
84,870
-		 £
34,947
80,782
113,263
-		 115,729
£
195
248
1,625
2,068
2023
£
-
2023
£
-
-
-
-
-
-

P a g e 23 | 28

ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)

16. Restricted Funds

Restricted Funds
Barnes Construction
Golf Day
HRA Pharma - ACC
films
Licence to use ACC
film clips
Society for
Endocrinology
Project Rollercoaster
National Lottery
Community Fund -
peer support
Elliot Dallon Charitable
Trust
Korean Endocrine
Society		 01/01/2024
Income
Expenditure
Transfer
31/12/2024
£
£
£
£
£
7,079
-
-
(7,079)
-
5,000
6,000
(7,228)
-
3,772
800
-
-
(800)
-
-
-
-
-
-
-
-
(340)
340
-
4,154
-
(648)
-
3,506
-
10,000
(10,000)
-
-
2,646
(2,646)
-
17,033
18,646
(20,863)
(7,539)
7,277

Restricted Funds

Barnes Construction Golf Day

HRA Pharma - AIPD

Licence to use ACC film clips

Society for Endocrinology

Big Give - Counselling

The proceeds from Barnes Construction's Golf Day will be allocated to MEN1 research awards. In subsequent years, Barnes Construction's donations have been unrestricted, with the terms for this funding now released. As a result, this fund has been moved to unrestricted funds starting in 2024.

HRA Pharma provided a grant in 2019 and 2024 to meet the costs of the annual Patient Information Day.

Licence given to HRA Pharma for use of ACC patient film clips and to be used against future ACC podcasts. Given that the terms of this funding are no longer subject to restrictions, the fund has been reclassified as unrestricted from 2024. This change reflects the updated status of the funding terms, allowing for greater flexibility in the allocation and utilisation of these resources. Society for Endocrinology Patient Grant to update resources

Big Give Christmas Challenge Campaign raised funds for our Counselling Service

National Lottery Community Fund - peer support

The National Lottery Community Fund provided a grant for our Peer Support Meetings for 2022-23

Elliot Dallon Charitable Trust

Korean Endocrine Society

The Elliot Dallan Charitable Trust provided a grant of £10,000 for a research grant into adrenocortical cancer.

The Korean Endocrine Society donated £2,646 to the charity in order to cover a portion of the costs incurred for the CEO to attend and present at the Seoul Internation Congress on Endocrinology & Metabolism (SICEM) event.

P a g e 24 | 28

ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)

Previous Year
Barnes Construction Golf Day
HRA Pharma - ACC films
Licence to use ACC film clips
Society for Endocrinology
Big Give - Counselling
National Lottery Community
Fund - peer support
Elliot Dallon Charitable Trust		 01/01/2023
Income
Expenditure
Transfer
£
£
£
£
7,079
-
-
-
5,000
-
-
-
800
-
-
-
1,591
-
(1,791)
200
-
1,369
(1,369)
-
8,750
-
(4,596)
-
-
10,000
(10,000)
-		 31/12/2023
£

7,079

5,000

800

-

-

4,154

-
23,220
11,369
(17,756)
200
17,033

17. Unrestricted Funds

General Fund
Designated Funds		 01/01/2024
Income
Expenditure
Transfer
31/12/2024
£
£
£
£
£
38,234
64,527
(71,913)
46,068
76,915
69,769 12,000
(13,240)
(38,529)
30,000
108,003
76,527
(85,153)
7,539
106,915

Description of funds

Unrestricted Fund

General:

These are funds available to the Charity for unrestricted use in the furtherance of its charitable aims and objectives. These funds may be revenue (income & expenditure) items or tied up in assets, e.g. Office/Computer Equipment.

Designated Funds (see Note 17.)

These funds outlined below have been designated by the Trustees for the purposes shown whereas, legally, they are unrestricted. For reporting purposes throughout these Financial Statements, they are therefore combined together as "Unrestricted".

Previous Year
General Fund
Designated Funds		 01/01/2023
Income
Expenditure
Transfer
31/12/2023
£
£
£
£
£
49,093
69,299
(77,450)
(2,708)
38,234
84,347
-
(17,086)
2,508
69,769
133,440
69,299
(94,536)
(200)
108,003

P a g e 25 | 28

ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)

18. Designated Funds

Counselling Service
Research Fund
Hardship Fund
Personnel Contingency
Fund		 01/01/2024
Income
Expenditure
Transfer
31/12/2024
£
£
£
£
£
-
12,000
(13,240)
1,240
-
39,019
-
-
(39,019)
-
750
-
-
(750)
-
30,000
-
-
-
30,000
69,769
12,000
(13,240)
1,240
69,769

Counselling Service

£12,000 is designated annually to provide approximately 200 one-topone sessions for our members with the psychological counsellor service provider, Rareminds

Research Fund

Funds that were previously designated for research funding are insufficient for long-term use and have therefore been undesignated.

Hardship Fund

AMEND’s official Hardship Fund, previously available for small financial help grants to members, has been discontinued, and previously designated funds have therefore been released into general funds.

Personnel Contingency Fund

These designated funds allow for the costs of redundancies in the event that the charity can no longer support paid staff, or that the charity is wound up.

Previous Year
Counselling Service
Research Fund
Hardship Fund
Personnel Contingency Fund		 01/01/2023
Income
Expenditure
Transfer
31/12/2023
9,078
-
(11,586)
2,508
-
44,519
-
(5,500)
-
39,019
750
-
-
-
750
30,000
-
-
-
30,000
84,347
(17,086)
2,508
69,769

19. Related Parties

There were no related party transactions in 2024 or 2023.

20. Trustee Remuneration

No trustee received any remuneration. One trustee received reimbursement of expenditure incurred for a DBS Check, amounting to £18 to meet the requirements for becoming a trustee. In 2023, one trustee received reimbursement of travel and subsistence expenses amounting to £518 to enable them to attend conferences, the AGM and trustee meetings.

P a g e 26 | 28

ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

21. Reconciliation of Net Income/(Expenditure) to Net Cash Flow from Operating Activities

Note
Net income/(expenditure) for the reporting period (as
in the Statement of Financial Activities)
Adjustments for:
- Depreciation
11.
- (Increase) / decrease in debtors
12.
- (Increase) / decrease in stock
- (Decrease) / increase in creditors
14.
Net cash provided by / (used in) operating activities
Analysis of Cash and Cash Equivalents
Cash in hand and in Bank
13.		 2024
2023
£
£
(10,843)
(31,624)
457
939
1,524
(3,630)
670
517
5,726
(1,762)
(2,466)
(35,560)
113,263
115,729
113,263
115,729

P a g e 27 | 28

ASSOCIATION FOR MULTIPLE ENDOCRINE NEOPLASIA DISORDERS (AMEND)

YEAR ENDING 31[st] DECEMBER 2024

22. COMPARATIVE STATEMENT OF FINANCIAL ACTIVITIES

YEAR ENDED 31st DECEMBER 2023

Income
Donations and gift aid
Charitable Activities
Investment Income
Other Income
Total Income
Expenditure
Raising Funds
Charitable Activities
Support Costs
Governance Costs
Total Expenditure
Net income /(expenditure) for the year
Transfer between funds
Revaluation gains on investment assets
Net Movement in Funds
Reconciliation of Funds
Total Funds brought forward
Total Funds carried forward		 Unrestricted
Restricted
TOTAL
£
£
£
36,788
-
36,788
30,000
11,369
41,369
1,977
-
1,977
534
-
534
69,299
11,369
80,668
9,635
-
9,635
64,033
17,756
81,789
17,967
-
17,967
2,901
-
2,901
94,536
17,756
112,292
(25,237)
(6,387)
(31,624)
(200)
200
-
-
-
(25,437)
(6,187)
(31,624)
133,440
23,220
156,660
108,003
17,033
125,036

P a g e 28 | 28