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 info@amend.org.uk Website: www.amend.org.uk Facebook: www.facebook.com/AssociationforMENdisorders X: www.twitter.com/AmendInfo (@AmendInfo)
Jo Grey (CEO)
Jo Grey (CEO) Tel: 01892 516076 Email: jo.grey@amend.org.uk Helen Blakebrough (Exec Admin) Tel: 01892 841032 Email: helen@amend.org.uk
## **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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