2025-03-31-accounts

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Registered Charity No. 1058319

KLINEFELTER’S SYNDROME ASSOCIATION (KSA)

TRUSTEES ANNUAL REPORT & ACCOUNTS

FOR THE YEAR ENDED 31 MARCH 2025

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KLINEFELTER’S SYNDROME ASSOCIATION

Year Ended 31 March 2025

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KLINEFELTER’S SYNDROME ASSOCIATION

Reference and administrative information

Year Ended 31 March 2025

Registered charity number: 1058319

TRUSTEES:

Mr Paul Dutton (Chair) Ms Lexi Breen (Vice Chair & Social Media) Mrs Sarah Gordon (Treasurer) Mrs Sylvia James-Yates (Secretary) Mrs Alison Bridges (Activity Weekend Organiser) Mrs Claire Harkin (Research Coordinator) Mrs Melanie Perrins (Membership Secretary) Mr Kenneth Scott Mrs Phillipa Reed

ADDRESS : Engineers Cottage Homesford Matlock Derbys. DE4 5HJ

BANKERS :

TSB PO Box 1000 BX4 7SB Co-operative Bank plc PO Box 250 Skelmersdale WN8 6WT

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Report of the Trustees

The trustees present their report and financial statements of the charity for the year ended 31 March 2025.

The charity is registered with the Charity Commission, the Regulator for Charities in England & Wales. The Trustees have adopted the provisions of the Charities Act 2011 and with the Statement of Recommended Practice: Accounting and Reporting by Charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) issued on 16 July 2014.

Objectives and activities of the KSA

The KSA exists to offer support and information to all affected by, or having an interest in, Klinefelter’s Syndrome (KS)/XXY which is a relatively common, but hugely under-diagnosed genetic condition caused by the presence of an extra sex chromosome. The KSA provides information and support via its website, Helpline, annual conferences, social media, newsletters and publications. It hosts and encourages various social activities to provide a support network.

The KSA works to raise the profile of the condition with the medical profession, other public and private bodies and the general public and to help all to understand its implications, not only for the individual affected, but also for all those with whom they have contact during their lives. The KSA exhibits at medical conferences to raise awareness of KS/XXY. It offers free membership to professional people with an interest in KS/XXY.

The KSA works to promote and support research into the condition. The KSA promotes relevant research projects in newsletters, on our website, by email and by via social media.

The Trustees confirm that they have referred to the guidance contained in the Charity Commissions general guidance on public benefit when reviewing the Charity’s aims and objectives and in planning future activities.

The trustees have had regard to the Charity Commission’s public benefit guidance when exercising any powers or duties to which the guidance is relevant.

Achievements and Performance

Raising Awareness

To help raise awareness of KS/XXY, KSA trustees have exhibited and / or spoken at several medical and related Conferences and Awareness/Information Days throughout the year.

Dates ~~—~~	Event Attendees ~~—~~	Event Attendees ~~—~~
May 2024 ~~—~~	University & College Union LGBT Conference Lexi Breen - Speaker ~~—~~
June 2024 ~~—~~	iDSD Conference Stockholm Ken Scott - Steering Group member & Lexi Breen (costs borne by organisers). ~~—~~
June 2024 ~~—~~	British Psychological Society Conference ~~—~~	Claire Harkin ~~—~~

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Report of the Trustees Cont/d

Dates	Event Attendees	Event Attendees
September 2024	*Celebrating Psychology in the Midlands Alison Bridges
October 2024 Royal College of GP’s Conference, Liverpool Lexi Breen Paul Dutton
November 2024	University & College Union Equalities Conference Lexi Breen - Speaker
November 2024 British Association of Gender Identity Specialists (BAGIS) Lexi Breen - Speaker
November 2024	European Society for Paediatric Endocrinology Lexi Breen - Delegate
February 2025 Safeguarding Leads UK Lexi Breen - Speaker
February 2025	MSc International Social workers Lexi Breen - Speaker
February 2025 LGBT Health Professionals Network Lexi Breen - Speaker
February 2025	Rare Diseases Day at St Thomas KS/XXY clinic Sylvia-James Yates
February 2025 Rare Diseases Day at the Glasgow Children's Hospital Ken Scott
March 2025	BES Conference, Harrogate Lexi Breen Ken Scott
March 2025 Genetic Alliance Rare Diseases Day at Scottish Parliament with MSP’s. Ken Scott
March 2025	Liverpool Medical School training video Paul Dutton
March 2025 BES Clinical Update, Birmingham Lexi Breen
March 2025	European Association for Urology Congress	Claire Harkin (A European Patient Advisory Group Advocate) - Speaker (co- presenting with Mr Tet Yap).

Podcasts and Webinars

Lexi Breen has taken part in a podcast in April 24 that is very specific to KS/XXY - Understanding “Klinefelter Syndrome: The Chromosome Anomaly” https://podcasts.apple.com/gb/podcast/understanding-klinefelter-syndrome-thechromosome/id1657370014?i=1000653683578

KS/XXY Awareness Day

Trustee AJ Howard designed the 2024 Awareness Day Advert which featured a series of posts and a short video. The KSA are planning for the Awareness Day to become an annual occurrence with events to compliment it.

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Report of the Trustees Cont/d

Research

Research topic	Institution Researchers	Institution Researchers
Gender Incongruence: Assessing the perspectives of people with Klinefelter Syndrome (KS), healthcare professionals and KS experts to improve clinical practice and treatment/support policy	University of Derby Athina Tripli Professor James Elander Dr Eliana Taylor
A systematic review of evidence about gender identity and Klinefelter syndrome/XXY: prevalence, beliefs, attitudes and experiences	University of Derby Athina Tripli Professor James Elander Dr Eliana Taylor
The experience of having Klinefelter syndrome/XXY diagnosed during investigation of infertility: A qualitative exploration	University of Derby Professor James Elander Claire Harkin Dr Bryan Woodward
Experiences of professionals who have worked with individuals with Klinefelter's Syndrome in contact with the criminal justice system.	University of Derby Henrietta Bergstrom Harry Evans
What are the perceived impacts of school-based counselling on the educational experiences and emotional well-being of students aged 8-11 diagnosed with Klinefelter Syndrome in mainstream schools, as reported through qualitative interviews?	University of Exeter Ellie Crisp Oliver Bridge
KS/XXY qualitative experiences of infertility	De Montfort University Dr Kristine Fearon
KS Quality of Life	City, University of London Brien Mehmet Sofia Llahana
KS/XXY and Autism	Autism Research Centre, University of Cambridge	Sir Simon Baron-Cohan Alexander Tsompanidis

RedCap Database

The KSA continues to support financially the setup of a RedCap Database, which is situated at the KS Clinics at Guy’s and St Thomas’. This holds anonymised data about KS/XXY patients at the clinic which will inform the clinicians and help them to see trends. The KSA will continue to fund the management of the database going forward.

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KLINEFELTER’S SYNDROME

Report of the Trustees Cont/d

Support and Information

Website

The main source of information provided by the KSA is our website which is often praised by people who contact us. It contains The Members’ Handbook, information about events and recordings from previous KSA Conferences and webinars.

Newsletter

The KSA sends out frequent mailings to its members via Mail Chimp. These contain information about events which have been organised by the KSA, news about current research, updates about fund raisers, opportunities to take part in research and any other information about the KS/XXY world which is likely to be of interest to our members. These mailings are very useful because they can be sent at short notice – unlike a printed newsletter. An annual compilation is made available on the website for members who like to have a printed copy. A limited number of printed copies are sent to members who are unable to access the internet.

Helpline and website contact form

In the last year the KSA have received and responded to nearly 250 Helpline calls and contacts through the website. The subjects of these vary enormously and include seeking a diagnosis, questions about behaviour or an elderly parent worried about how their adult son will manage when they can no longer support him. Often calls will take an hour or more because people are so grateful to find a sympathetic and supportive listener. Website contacts also often precipitate calls. A single contact can often result in multiple conversations. Alison Bridges and Ken Scott respond to the Helpline. Alison replies to website-initiated contacts but may involve other trustees as appropriate.

Activity Weekends

KSA Activity Weekends were introduced in 2001 as a way of getting people who are affected by KS/XXY together in a relaxed environment. They provide a unique opportunity to meet others, of all ages, who are affected by KS/XXY. By the end of the weekend people seem to have grown in confidence and self-esteem and many say that they feel part of the wider KS/XXY community. 40 people attended in April 2024 plus 33 people in September 2024 including members living in France.

Social events

Because our members are scattered across the country (and, indeed, the world) it is difficult to organise social events. To help plug this gap, several regular virtual chats have been arranged. Members who join in have said that they value the opportunity to ‘meet’ and chat with others who understand their experiences. In-person meetings are arranged when possible and may feature pub lunches or country walks.

KSA AGM and Conference

This was again a hybrid ‘in-person’/virtual event. It was held in May 2024 at the Kent’s Hill Park training centre in Milton Keynes. The location of rooms and refreshment arrangements coupled with poor wifi meant that we couldn’t consider rebooking for 2025.

Despite the venue drawbacks the Conference was very enjoyable. Amongst the speakers were representatives from Guy’s London KS/XXY clinics. Three workshops were run by a variety of medical professionals and others. The Conference helps to educate members while developing peer support.

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KLINEFELTER’S SYNDROME

Report of the Trustees Cont/d

Virtual and in-person support at Guy’s and St. Thomas’ KS Clinic

KSA trustees have joined the team at Guy’s and St Thomas’ to virtually (and, when possible, inperson) to support patients and families at the Adults and Young Person’s KS Clinics. They talk to patients and signpost them to support available outside of the clinics.

KS/XXY as an intersex condition

Intersex people are born with primary and secondary sex characteristics (such as sexual anatomy, reproductive organs, hormonal patterns or chromosomal patterns) that do not fit typical binary notions of male or female bodies (UN Human Rights Commission).

Experts estimate that up to 1.7 percent of the population are born with intersex traits. Other terminology may be used (such as Variations in Sex Characteristics, Differences or Disorders of Sex Development or the name of a particular condition). Intersex people may have any gender identity or sexual orientation.

People who are KS/XXY are neither XX - typical female nor XY – typical male and we often have bodily differences from more typical people. Because of this KS/XXY is classed as an intersex condition, though it’s a matter of personal choice whether we choose to use this label at all. Our bodily differences to more typical XX/XY people can have serious ramifications when it comes to healthcare (for example we have a higher risk of breast cancer than an XY male) but that is often not understood by those affected, or their medical professionals.

When the KSA was first set up many of our advising medical professionals at the time were confident that every XXY person was male, but as knowledge has advanced it has become clear that there are other factors (such as androgen insensitivity for example), which mean that some XXY people have female bodies. KSA is therefore today aware that our members and potential members represent a very broad range of experience yet we still seek to support all KS/XXY people and our work for the KSA and in liaison with other organisations reflects that.

Membership of other organisations

• Ken Scott is a patient representative on the I-DSD steering committee and on the Rare Conditions Patient Advisory Group.

• Lexi Breen is a member of Mental Health Partnership Network for Rare Diseases.

• Claire Harkin is a patient representative on the NICE forum, discussing the proportionate approach to technology appraisals and improvements to the NICE guidance concepts.

• the National Council for Voluntary Organisations (NCVO)

• the Prescription Charges Coalition

• EURORDIS-Rare Diseases Europe

• ENDO European Reference Network

• UROGEN European Reference Network

• Genetic Alliance and Rare Disease

• Rare Conditions Network

• Interconnected (ICON) UK

• LGBTIQ+ Scotland (The Equality Network).

• the KSA is affiliated to the British Endocrine Association which gives it some authority when corresponding with medical professionals.

• the KSA has representation on the planning board for the new KS Paediatric Clinic at Guy’s and St Thomas’.

• the UK Men’s Health Network.

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Report of the Trustees Cont/d

Structure, Governance and Management

The KSA has been a charity since 1996 and is run by trustees who form the National Executive Committee (NEC). They are elected at the AGM or can be co-opted at any time. The KSA generally recruits from its membership but would be happy to recruit from outside if the opportunity presented itself.

Trustees

There were a number of trustees changes at the AGM in May 2024. Paul Dutton took over as Chair from Alison Bridges who had been acting Chair since the death of Barry Duplock. Alison continues her role as trustee focusing on organising our popular activity weekends. Lexi Breen was elected Vice Chair at the AGM in addition to their Social Media responsibilities. Melanie Perrins has taken over the Membership Secretary role from Jim Harkin. Mike Green has decided to step down from his trustee role and Phillipa Reed joined the NEC at the AGM. As at 31[st] March 2025 there were nine trustees.

Volunteers

We now have a small group of volunteers who can't commit to being trustees but who help in the everyday running of the KSA. Their support really makes a difference.

I would like to thank everyone who made a donation, told someone else about the KSA (or KS), fund raised, organised a meeting, contributed to the Newsletter or helped the KSA community in any way. A little help from a lot of people adds up to a great deal.

Financial Review

For a review of the financial performance please refer to the Statement of Financial Activities and Balance Sheet for the year ended 31[st] March 2025.

The Charity holds sufficient reserves to fulfil its policy objectives. We aim to maintain a minimum of 4 months’ worth of expenses in the charity’s bank accounts. If reserves fall below 8 months’ worth of expenses an agenda item must be included at the next National Executive Committee meeting to discuss ways of increasing Charitable income in order to prevent cash reserves getting close to the 4 month minimum.

The KSA Trustees believe that the charity is a going concern as bank balances of £90,218 (£30,000 of which was paid to the KSA as a bequest but intended for Tet Yap’s research team. The KSA is currently holding these funds on his behalf), are well in excess of annual expenditure of £30,694. There are no post balance sheet events to the date of this report to change the assessment that the KSA is a going concern.

Approved by the trustees and signed on their behalf by:

Mrs Sarah Gordon

November 2025

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Independent Examiner’s Report to the Trustees of Klinefelter’s Syndrome Association (“KSA”)

I report to the charity trustees on my examination of the accounts of the KSA for the year ended 31[st] March 2025.

Responsibilities and basis of report

As the charity trustees of the KSA, you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 (‘the Act’).

I report in respect of my examination of the KSA’s accounts carried out under section 145 of the Act. In carrying out my examination I have followed all applicable 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 material matters have come to my attention in connection with the examination giving me cause to believe that in any material respect:

accounting records were not kept as required by section 130 of the Act; or the accounts do not accord with those records; or

the accounts do not comply with the applicable requirements concerning the format content of accounts set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a ‘true and fair view which is not a matter considered as part of an independent examination.

I confirm that there are no other matters to which your attention should be drawn to enable a proper understanding of the accounts to be reached.

Signed: Date: 30/11/25

Name: Lindsay Brett

Address: 6 St Andrews Close, Fearnhead, Warrington WA2 0EJ

Relevant professional qualification(s) or membership of professional bodies:

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KLINEFELTER’S SYNDROME

Statement of Financial Activities

For the Year Ended 31 March 2025

Year Ended Incoming Resources Donations & Legacies Charitable Activities Investment Income Other Resources Expended Charitable Activities Other Net Income / (Expenditure) Total Fund Balances Brought Forward Total Fund Balances Carried Forward	31/03/25 31/03/24 £ £ 28,151 35,911 14,735 22,342 13,061 10,626 0 0 355 2,943 30,694 20,965 26,639 13,465 4,055 7,502 (2,543) 14,946 62,761 47,815
	60,218 62,761

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Statement of Assets and Liabilities

As at 31 March 2025

CURRENT ASSETS Prepayments and Accrued Income TSB Bank Co-Operative Bank PayPal Account CURRENT LIABILITIES Creditors 0 Accruals and Deferred Income 0 Research Liability 30,000 NET ASSETS RESERVES Unrestricted Funds Reserves Brought Forward 54,824 Surplus of Income over Expenditure for the Year 2,835 Restricted Funds Reserves Brought Forward 7,937 Surplus / (Deficit) for the Year (5,378)	31/03/25 31/03/24 £ £ 0 0 24,053 21,131 65,637 71,220 528 410 90,218 92,761 0 0 30,000 30,000 30,000 60,218 62,761 41,556 57,659 13,268 54,824 6,259 2,559 1,678 7,937 60,218 62,761

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Notes to the accounts at 31 March 2025

1. Accounting policies

Basis of accounting

The financial statements have been prepared on a cash accounting basis in accordance with the Receipts and Payments method, as permitted for small charities under Section 133 of the Charities Act 2011 and the accompanying guidance issued by the Charity Commission for England and Wales.

Income is recognized when received, and expenditure is recorded when paid, rather than when incurred. As a result, the accounts do not reflect outstanding income or expenses at the balance sheet date. This basis of accounting is considered appropriate for the charity given its size and straightforward operations.

The accounts present a ‘true and fair’ view and the accounting policies adopted are those outlined in this note.

Fund accounting

Unrestricted funds are funds which are available for use at the discretion of the Committee in furtherance of the general objectives of the Charity and which have not been designated for other purposes. The restricted funds are to be used as per individual donors’ wishes. These are usually to help fund shortfalls in activity weekends.

Incoming resources

Income is included in the Statement of Financial Activities when the charity is legally entitled to the income and the amount can be quantified with reasonable accuracy. Legacies are included in the Statement of Financial Activities when receipt is probable, that is, the earlier of the Charity being notified of an impending distribution or the legacy being received.

Gift Aid is included in income when the claim has been received from HMRC.

Membership subscriptions are always treated as subscriptions. If a member adds an additional amount at the time of paying the subscription this is classified as a donation.

Grants and donations are only included in the SoFA when the general income recognition criteria are met. In the case of performance related grants, income is recognised to the extent that the charity has provided the specified goods or services as entitlement to the grant only occurs when the performance related conditions are met.

The restricted funds are used solely for the purposes of the Activity Weekend Subsidies given to members who attend this activity. Every year the excess of costs over Activity Weekend income reduces the amount of restricted funds.

Resources expended

All expenditure is accounted for on a cash basis and has been classified under headings that aggregate all costs related to the category. Where costs cannot be directly attributed to particular headings they have been allocated to activities on a basis consistent with use of the resources.

The expenditure categorisations in the Statement of Financial Activities for the year ended 31[st] March 2025 are stated in line with SORP FRS102

2. Transactions with Trustees and Related Parties

Trustee Remuneration and Benefits

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KLINEFELTER’S SYNDROME

For the years ended 31[st] March 2024 and 31[st] March 2025, none of the trustees have been paid any remuneration or received any other benefits from an employment with their charity or a related entity.

Trustee Expenses

Expenses were reimbursed to 6 trustees for the year ended 31[st] March 2025 amounting to £3,307.

The majority of these expenses related to trustees’ attendance of exhibitions and external conferences as well as travel, food and accommodation for the Annual KSA conference. This was a modest decrease compared to £5,227 in the year ended 31[st] March 2024.

Transaction(s) with Related Parties

There were no related party transactions for the years ended 31[st] March 2024 and 31[st] March 2025.

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KLINEFELTER’S SYNDROME

Detailed Statement of Financial Activities

Year Ended INCOME Membership Online Membership - PayPal Donations and Sponsorships Grants and Awards AGM and Conference Activity Weekend Interest Received Miscellaneous Income Legacies and Bequests Gift Aid EXPENDITURE AGM Conference NEC Meetings Newsletter Exhibition and Related Travel Expenses Postage and Stationery Activity Weekend Costs Helpline Phone Website & IT Costs DBS Checks Accountancy Insurance Costs PayPal Charges KSA Clothing Miscellaneous Expenses Advertising and Marketing Database Cost of raising funds Net Surplus (Deficit) for the Year

31/03/25 31/03/24 £ £ 1,723 1,818 4,031 4,747 8,980 15,277 0 500 4,635 3,146 8,426 7,480 0 0 0 65 278 1,264 78 1,614 28,151 35,911 11,980 6,807 0 147 0 21 3,349 3,544 55 468 13,804 5,802 568 531 313 1,295 199 0 131 131 96 96 98 116 71 0 0 321 0 222 0 1,417 30 48 30,694 20,965

(2,543) 14,946