2023-12-31-accounts

AMEND 2023 Annual Report & Accounts

Contents

Page	3	Constitutional Aims and Objectives
Page	3	AMEND and the Trustees
Page	4	Changes to AMEND and the Trustee Board
Page	5	Chairperson’s Report
Page	5	CEO’s Report
Page	6	2023 Overview
Page	8	2024 and Beyond
Page	9	Membership Report
Page	10	Fundraising Report
Page	11	Treasurer’s Report
Page	12	Statement of Financial Activities
Page	13	Balance Sheet
Page	14	Notes to the Financial Statements
Page	19	Independent Examiner’s Report
Page	20	Contact Information

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CONSTITUTIONAL 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:

• (a) Working within the approval of members of the medical profession who are directly involved in the treatment of and research into M.E.N.

• (b) Collecting, collating, and distributing appropriate and approved information.

• (c) Producing the Charity’s own patient-aimed approved information.

• (2) Promoting a wider knowledge of the illnesses among the medical profession to assist in early and accurate diagnosis.

• (3) 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.

• (4) 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.

AMEND AND THE TRUSTEES

The Trustee Board present their annual report together with the financial accounts of the Charity for the year ended 31 December 2023.

Structure, Governance and Management

AMEND is a Charitable Incorporated Organisation governed by a Constitution, vesting control and responsibility in the Trustee Board on behalf of the membership. The Trustees hold regular meetings to administer the Charity and their terms of office are determined by the AMEND Constitution. The term of office for an AMEND Trustee is three years beginning from the Annual General Meeting when voting in takes place.

Trustees’ Responsibilities for the Financial Statements

The trustees are responsible for preparing the Trustees’ Annual 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 the incoming resources and application of resources of the charity 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 in the Charities SORP;

• make judgements and estimates that are reasonable and prudent;

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• state whether applicable accounting standards 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 operation

The trustees are responsible for keeping proper accounting records that 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.

The trustees are responsible for the maintenance and integrity of the charity and financial information included on the charity’s website. Legislation in the United Kingdom governing the preparation and dissemination of financial statements may differ from legislation in other jurisdictions.

Gill Masters Chair of the AMEND Board of Trustees 4[th] July 2024

CHANGES TO AMEND AND THE TRUSTEE BOARD

New Trustees:

The following Trustees were appointed to the Board at the 2023 AGM:

1. Shahab Khan

Retiring Trustees:

The following Trustee retired during 2023 and we thank them wholeheartedly for their service to AMEND over the years:

1. Barney Harrison (former Chair of Trustee Board)

Trustee Executive Committee Changes:

Mrs Gill Masters became Chair of the Trustee Board at the 2023 Annual General Meeting.

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CHAIRPERSON’S REPORT

My first year in office has proven to be very interesting, busy and a steep learning curve. I am now officially retired and hope to be able to spend more time supporting patients and volunteering wherever I’m needed!

I don’t think I ever fully appreciated how busy day-to-day life is at Amend, Jo and Helen are never without a long list of things to do, or places to be. I hope I haven’t added to that too much with my questions and queries – and as I learn I hope to become slightly more useful! Thank you both whole-heartedly for your valuable input.

As always, there are opportunities to help in various forms – whether as a volunteer, a fundraiser or contributing to our newsletters with stories – please get involved if you’d like to be part of our amazing charity.

Financially, this year has been probably the toughest since I joined Amend in 2007 – as numbers increase, funds are diminishing due to higher costs and the inevitable tightening of belts. We rely on our fundraisers and supporters more than ever, and our thanks go to everyone who makes it possible to continue to support patients as we do.

As we move into another year, I would also like to personally thank our Board of Trustees who all give their time and knowledge freely to make sure the charity meets its obligations – you are all very much appreciated.

Gill Masters Chair of the AMEND Board of Trustees 17[th] June, 2024

CHIEF EXECUTIVE’S REPORT

Dear all,

We had another busy year in 2023, providing information resources and support services to our rare endocrine disease communities. We continued with many of our activities despite the continuing reduction in income amidst the cost of living crisis.

We continued to raise the profile of the charity and the diseases we cover to raise awareness of the inequities in care, treatments and research. At the same time, we saw the usual increase in membership numbers. All members continue to benefit from all our free resources, events and counselling service.

More work was done during the year in relation to our updated Strategic Plan which focusses on ensuring that AMEND is sustainable, both financially and in terms of

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personnel well into the future. We thank our Trustees for their continued support with this.

Huge thanks must go to our fundraisers, grantees, and donors who have been essential in seeing AMEND through these recent financially challenging times. Thanks also to all our wonderful volunteers, whose time given to AMEND is immeasurable. Thanks to you all for your continued support from the bottom of our hearts.

Jo Grey AMEND Chief Executive Officer 4[th] July 2024

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2023 OVERVIEW

Source of Information

72 members registered to attend the 2023 Annual Patient Information Day in London for free at a cost of £50 per head to AMEND.

AMEND updated 2 existing information booklets and adapted 2 others specifically for Phaeo Para Support UK

For NET Cancer Day (11 November annually) we held a webinar with Professor Karim Meeran called NETs in RETS to explain the link between neuroendocrine neoplasms and Rare Endocrine Tumours and Syndromes

Provision of Support

160 membership packs (worth £10 each) were sent out by AMEND to new members costing £1,600

160 new patient & family members, and 15 health professionals joined AMEND for free in 2023.

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11 peer support meetings were held during 2023 for the benefit of our members with MEN, PPGL and ACC. 100% of those who responded to the feedback survey found the meetings useful for meeting others and were keen to repeat the experience

207 counselling sessions were provided to 27 AMEND members by

Rareminds at a cost of £60 per session. Rareminds counsellors also provided support sessions to volunteers at a cost of £85 per hour and attended the Information Day to provide support for Young Adults.

Raise Awareness of MEN & Associated Endocrine Conditions

The AMEND CEO engaged in the patient participation programme with 2[nd] year medical students at University College London, gave a lecture to MSc endocrinology students at QMUL, and a presentation on our Community Advisory Groups at the annual Summit of the International Neuroendocrine Cancer Alliance

AMEND CEO gave a presentation on Unmet Needs and Patient Expectations in MEN syndromes at the World MEN Conference. AMEND also attended and exhibited at the Society for Endocrinology’s Clinical Update and British Endocrine Society conferences.

Advocacy

AMEND was appointed to represent patients on the Society for Endocrinology’s (UK) National Registry for Adrenal Tumours Project to develop a Registry and patient phone app

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The AMEND CEO was appointed to represent the MEN1 patients with the European Neuroendocrine Tumour Society MEN1 Taskforce

Research

AMEND continued recruitment for Community Advisory Groups to assist in providing the patient voice to research.

AMEND approved funding of a £10,000 ACC Research grant administered on behalf of the Elliot Dallen Trust.

2024 AND BEYOND

The financial situation in the UK for charities continues to be challenging, although is now slowly improving. As a result of our 2023-2026 Strategic Plan, AMEND is focussed on planning for the future through:

• Increasing sources of income to ensure future financial sustainability of AMEND

• Staff succession planning to ensure that the charity is prepared for changes in the future

• More collaborative working to support our main aims of providing information, support and awareness through the Neuroendocrine Life Alliance with Neuroendocrine Cancer UK

• Finding creative ways to provide the same resources and services for less.

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MEMBERSHIP REPORT

AMEND offers free membership to patients, their family and friends, as well as to healthcare professionals. Our patient communities cover multiple endocrine neoplasia disorders, phaeochromocytoma & paraganglioma syndromes, adrenocortical cancer, sporadic phaeochromocytomas and medullary thyroid cancer.

AMEND’s patient/family members totalled 1384 by the end of 2023 (1249 in 2022), showing its continued upward membership registrations.

----- Start of picture text -----
Total Membership 2018-
2023
1384
1249
1060
878
711 730
2018 2019 2020 2021 2022 2023
Number of members
----- End of picture text -----

Whilst much of our membership base is understandably in the UK, patients from many countries around the world also continue to appreciate AMEND’s membership benefits. A charge applies to overseas members to cover the cost of shipping Membership Packs where requested.

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FUNDRAISING REPORT

Huge thanks go to the following for their extraordinary fundraising efforts and financial or in-kind donations during 2023:

Lia Sheriff, James Bell, Gill Masters, Elly Fitzgibbon, Hannah Ker, Finn and Cal Blakebrough, Clare Walton, Charmaine Chantler, Amy Lee, Erin Ruddy, Flora Manson, Tom Dunn, Rachel Mandley, Emily Mosedale, Mark Tolladay and friends, our London 10k runners, Hannah, Dan, Jatinder, Jaspreet, Davinder, Bikramjit and Katherine, and anyone we may have missed.

Thank you to our 2023 corporate or grant-giving supporters: the Houghton Dunn Charitable Trust, the Society for Endocrinology, HRA Pharma, The Barnes Group Ltd Not Fayers Golf Cup Tournament, and the Elliot Dallen Trust.

Finally, thank you to everyone who has donated (anonymously or not), or offered their time for free over the past year. You really make a difference!

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TREASURER’S REPORT

2023 results . The charity’s total incoming resources were £80,668 (2022 £130,264). Given the enormous pressure on public spending and household budgets in 2023, UK charities inevitably saw a dip in income and AMEND was not immune to this. We would like to thank our members and grant funders who continued to support us during this difficult year.

The extent of the fall in income was not reflected by comparable fall in expenses which led to the charity ending the year with a deficit of £31,624. Despite this, we managed to fund £12,955 towards our very valuable counselling service and made research grants and awards totalling £15,500 during the year.

Reserves . AMEND’s undesignated unrestricted reserves now stand at £38,234 (2022 £49,093). Due to the high-risk nature of our main funding stream (voluntary grants and donations), we aim to retain general funds of around £60,000. This is a level reasonable enough to ensure that AMEND could continue to operate its core activities for six months while enabling it to identify and utilise replacement funding streams.

Catherine Hamilton-Woodthorpe Treasurer 4[th] July 2024

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STATEMENT OF FINANCIAL ACTIVITIES

For the Year ended 31 December 2023

				2023						2022
	**notes **	Restricted		Unrestricted		Total Funds		Restricted		Unrestricted		Total Funds
		£		£		£		£		£		£
Income and endowments from:
Donations and legacies	5	-		66,788		66,788		-		92,603		92,603
Charitable activities	6	11,369		11		11,380		36,791		10		36,801
Other tradingactivities	7	-		523		523		-		416		416
Investments		-		1,977		1,977		-		444		444
Total income and endowments:		11,369		69,299		80,668		36,791		93,473		130,264
Expenditure on:
Raisingfunds	8	-		9,635		9,635		-		9,767		9,767
Charitable activities	9	17,756		64,033		81,789		28,727		74,060		102,787
Support costs	10	-		17,967		17,967		-		24,843		24,843
Governance costs	11	-		2,901		2,901		-		1,999		1,999
Total expenditure		17,756		94,536		112,292		28,727		110,669		139,396
Net income /(expenditure)		(6,387)		(25,237)		(31,624)		8,064		(17,196)		(9,132)
Transfers betw een funds	13	200		(200)		-		1,134		(1,134)		-
Net movement in funds		(6,187)		(25,437)		(31,624)		9,198		(18,330)		(9,132)
Reconcilation of funds
Total funds brought forward		23,220		133,440		156,660		14,022		151,770		165,792
Total funds carried forward		17,033		108,003		125,036		23,220		133,440		156,660

BALANCE SHEET

As at 31 December 2023

			2023		2022
		note	£		£
Fixed assets		12	1,040		1,979
Current assets
Stock			3,166		3,683
Prepayments and accrued income			7,170		3,540
Cash at bank
	Deposit account		111,493		140,218
	Current accounts		4,236		11,070
			126,065		158,511
Creditors: amounts falling due
within oneyear
	Trade creditors		(1,025)		(2,205)
	Payroll taxes		(195)		(503)
	Pensionspayable		(248)		(522)
	Accruals		(600)		(600)
			(2,068)		(3,830)
Net current assets			123,997		154,681
Total net assets			125,036		156,660
Funds of the Charity
Restricted income funds		13	17,033		23,220
Designated funds		14	69,769		84,347
Unrestricted funds			38,234		49,093
Total Charity Funds			125,036		156,660

These financial statements were approved by the Trustees on [date] , and are signed on their behalf by

Catherine Hamilton-Woodthorpe Treasurer 4[th] July, 2024

NOTES TO THE FINANCIAL STATEMENTS For the year ended 31 December 2023

1. ACCOUNTING POLICIES

The financial statements have been prepared under the historical cost convention and in accordance with applicable accounting standards and with the Charities Accounting Statement of Recommended Practice (SORP FRS 102).

• a. Grants and voluntary income - All grants and voluntary income are accounted for in the year when they are received unless receipt has become certain at the balance sheet date.

• b. Deferred income - Income which has been received for a purpose which has not been commenced at the balance sheet date is deferred to a future period.

• c. Other income and expenditure - Other income and expenditure is accounted for on the accruals basis.

• d. Resources expended - Resources expended are recognised in the period in which they are incurred and include attributable VAT which cannot be recovered. Expenditure is allocated by activity in the first instance and, where practical, is also allocated to a cost centre.

• e. Allocation of costs - Costs directly related to an activity are allocated to that activity. Support costs which are necessary to deliver an activity but do not themselves deliver the activity, are allocated in proportion to the benefit attributable based on an internal assessment of time spent and resources used. Governance costs are those costs incurred in meeting statutory and constitutional requirements.

• f. Investments - All investments stated as current, being monetary assets, are stated at cost.

• g. Stocks - Promotional merchandise, held for sale, is valued at cost. h. Fixed assets and depreciation - Fixed assets are capitalised and depreciated over the estimated useful life as follows: 33% on cost.

• i. Funds –

• i. Unrestricted funds are those which are received from funding bodies and other donors and can be spent on the general objectives at the discretion of the trustees.

• ii. Restricted funds are those which are given for a specific purpose or project as defined by the funder, and where the funder may require repayment if the conditions are not met.

• iii. Designated funds are unrestricted funds which have been earmarked by the trustees for specific, usually short term, purpose within the general objectives.

• j. Donated goods and services - Donated goods and services are included at their value to the charity as determined by the trustees.

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NOTES TO THE FINANCIAL STATEMENTS (continued) For the year ended 31 December 2023

2. TAXATION

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

3. TRUSTEE REMUNERATION

No trustee received any remuneration. One trustee received reimbursement of travel and subsistence expenses amounting to £518 (2022: Five trustees; £347) to enable them to attend conferences, the AGM and trustee meetings.

4. STAFF COSTS AND AVERAGE NUMBERS

Wages and salaries Employer pension contributions Management and administration Patient Support administrator Total	2023 £ 43,923 1,318 45,241 1 1 2	2022 £ 44,072 1,322
		45,394
		1 1 2

5. DONATIONS AND LEGACIES Donations and gift aid Grants 6. INCOME FROM CHARITABLE ACTIVITIES Grants for charitable activities Other 7. INCOME FROM OTHER TRADING ACTIVITIES Sale of merchandise	2023 2022 Restricted Unrestricted Total Total £ £ £ £ - 36,788 36,788 62,103 - 30,000 30,000 30,500 - 66,788 66,788 92,603 11,369 - 11,369 36,791 - 11 11 10 11,369 11 11,380 36,801 - 523 523 416 - 523 523 416

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NOTES TO THE FINANCIAL STATEMENTS (continued)

For the year ended 31 December 2023

8. RAISING FUNDS Staff costs Merchandise Other 9. CHARITABLE ACTIVITIES Staff costs Patient information printing, booklets and w ebsites Patient information events and conferences Patient education films Patient representation Research grants and aw ards ACC support and ACC research grants ACC staff costs Patient support and counselling PPS UK 10. SUPPORT COSTS Rent Staff costs Printing, postage and office supplies Telephone IT support IT softw are and consumables Insurance Finance charges Exchange difference Depreciation Legal fees Repairs and maintenance Travel and accommodation Subscriptions General Office move

- 7,239 7,239 7,086 - 811 811 628 - 1,585 1,585 2,053 - 9,635 9,635 9,767 24,365 24,365 23,947 1,518 4,834 6,352 5,585 273 7,800 8,073 9,276 - - - 10,321 - 98 98 100 10,000 5,500 15,500 28,950 - 402 402 2,499 - 9,048 9,048 8,857 5,965 11,602 17,567 13,252 - 384 384 - 17,756 64,033 81,405 102,787 - 9,360 9,360 12,856 - 4,589 4,589 4,396 - 661 661 1,236 - 462 462 318 - 18 18 810 - 897 897 1,292 - 625 625 704 - 157 157 294 - 44 44 (184) - 939 939 931 - 35 35 35 - 63 63 618 - - - 435 - 117 117 - - - - 37 - - - 1,065 - 17,967 17,967 24,843 2023 2022 Restricted Unrestricted Total Total £ £ £ £

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NOTES TO THE FINANCIAL STATEMENTS (continued)

For the year ended 31 December 2023

11. GOVERNANCE Independent examiner Trustee meetings, AGM and other 12. TANGIBLE FIXED ASSETS Cost At 1/1/23 Additions At 31/12/23 Depreciation At 1/1/23 Charge for the year At 31/12/23 Net book value at 31/12/2 Net book value at 1/1/23	Equipment £ 14,121 -	- 2,400 2,400 - - 501 501 1,999 - 2,901 2,901 1,999 2023 2022 Restricted Unrestricted Total Total £ £ £ £
	14,121
	12,142 939
	13,081
	3 1,040
	1,979

13. RESTRICTED INCOME FUNDS

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 suppo Elliot Dallon Charitable Trust	B/forward £ 7,079 5,000 800 1,591 - rt 8,750 - 23,220	Income £ - - - - 1,369 - 10,000 11,369	Direct costs £ - - - (1,791) (1,369) (4,596) (10,000) (17,756)	Transfer from reserves Balance £ £ - 7,079 - 5,000 - 800 200 - - - - 4,154 - - 200 17,033

The proceeds of Barnes Construction's Gold Day are to be used for MEN1 research aw ards HRA Pharma provided a grant in 2019 to produce ACC patient films

Licence given to HRA Pharma for use of ACC patient film clips and to be used against future ACC podcasts Society for Endocrinology Patient Grant to update resources

Big Give Christmas Challenge Campaign raised funds for our Counselling Service The Natinal Lottery Community Fund provdied a grant for our Peer Support Meetings for 2022-23

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

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NOTES TO THE FINANCIAL STATEMENTS (continued)

For the year ended 31 December 2023

14. DESIGNATED FUNDS

14. DESIGNATED FUNDS
Counselling service Research Fund Hardship fund Personnel contingency fund	B/forward Income Direct costs Transfer to unrestricted Balance £ £ £ £ £ 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

15. RELATED PARTY TRANSACTIONS

There were no related party transactions in 2022 or 2023.

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INDEPENDENT EXAMINER’S REPORT TO THE TRUSTEES

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CONTACT INFORMATION

Association for Multiple Endocrine Neoplasia Disorders (AMEND)

Tyler House, 58-66 Morley Road Tonbridge, Kent, TN9 1RA 01892 516076 / 841032 [e-mail] Website: www.amend.org.uk Facebook: www.facebook.com/AssociationforMENdisorders X: www.twitter.com/AmendInfo (@AmendInfo)

Jo Grey (CEO)

Jo Grey (CEO) Tel: [phone] Email: [e-mail] Helen Blakebrough (Exec Admin) Tel: [phone] Email: [e-mail]

AMEND Trustee Board 2023

Gill Masters (Chair) Graeme Cohen Dr John Ayuk Andy Price Robert Millinship

Catherine Hamilton-Woodthorpe (Treasurer) Professor Karim Meeran Ms Miriam Asia, RN Karen Williams Sarah Norman

Patrons

Recorder, Mrs Jo Delahunty, KC, MA (Oxon) Jurisprudence Professor Rajesh Thakker, May Professor of Medicine, OCDEM, Churchill Hospital, Oxford

Mr Shaun Williamson, Actor

AMEND UK Medical Advisory Team (AMAT)

Dr Caroline Brain, Professor Maralyn Druce, Professor Ashley Grossman, Dr Fiona Lalloo, Mr David Scott-Coombes, Professor Rajesh Thakker, Dr Scott Akker, Dr Ruth Casy, Dr Cristina Ronchi, Professor Nick Reed, Mr Radu Mihai

Independent Examiner

Matthew Bugby, ACCA A K & Co (Accountancy Service) Limited 19 Victoria Terrace Hove East Sussex BN3 2WB

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