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← Turner Syndrome Support Society

2025-03-31-accounts

TURNER SYNDRO &itPPORT SOCIEn' I Annual Report & Financial Statement 2025 - 2025

Contents

Legal and Administrative Information . . . . . . . .3

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||| |---|---| |Trustees’ Report|. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .4| |Annual Report|. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6| |Trustees’ Responsibilities|. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .11| |Treasurers’ Report|. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12| |Balance Sheet|. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .13| |Independent Examiners’ Report|. . . . . . . . . . . . . . . . . . 14|

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Turner Syndrome Support Society

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Trustees: Mrs S Wall (Co-Chair) Mr S Wall (Co-Chair) Mr S Holden (Vice Chair) Mrs J O’Keeffe (Treasurer) Mrs S Cubitt (Secretary) Ms K Bruerton Mr P Hatcher

Sub Committee Chairs: Mrs R J Raper Miss M Cubitt Miss E Phillips Mrs A Smyth

Staff Members: Arlene Smyth (Executive Officer) Carlene Connor (Admin Assistant) TSSS Office: 12 Simpson Court 11 South Avenue Clydebank Business Park Clydebank G81 2NR

Registered Office: 4 Overbury Carterton Oxon OX18 1HQ

Independent Examiners: Nicola Jane Cadwallader FCCA David Cadwallader & Co Limited Suite 3 Bignell Park Barns Chesterton Bicester OX26 1TD

Bankers: HSBC 24 Market Sq. Witney Oxon OX28 6BG Registered Charity (England & Wales) : 1080507 Registered Charity (Scotland) : SC037932

Annual Report & Financial Statement 2024-2025

L/S 3

The Trustees present their report along with the financial statements of the charity for the period ended 31st March 2025. The accounts for the period 1st April 2024 to 31st March 2025 have been prepared in accordance with the revised Statement of Recommended Practice issued in 2019 Charities SORP (FRS 102) and comply with the charity’s governing document.

STRUCTURE, GOVERNANCE AND MANAGEMENT

The Charity’s governing document is its constitution which was adopted on 19 October 1999 and

subsequently revised on 25 March 2000. The Charity was registered as a charity in England and Wales (registered number 1080507) on 2 May 2000 and registered as a charity in Scotland (registered number SC037932) on 9 March 2007.

New Trustees are proposed for election by existing Trustees, checked in accordance with Charity Commission’s guidelines, and appointed by Deed. New Trustees are appointed either to fill a casual vacancy or by way of addition to the Board. Emphasis is placed upon the appointment of Trustees with knowledge and experience relevant to the charity’s activities. When new Trustees are appointed, they are introduced the work of the charity and provided with the information they need to fulfil their roles, which includes information about the role of the Trustees and their responsibilities under the Charities Act.

Day-to-day administration of the Society is delegated to an administrator under the supervision of the Trustees. Decision-making powers are retained by the Trustees and exercised at regular Trustees’ meetings. The Trustees meet at least four times a year. The Trustees do not receive remuneration except reasonable expenses.

The Trustees have identified the major risks which may affect the charity and have taken reasonable steps to mitigate those risks.

The Trustees set out below held office during the whole of the year except where otherwise stated.

Mrs S Wall (Co-Chair) Mr S Wall (Co-Chair) Mr S Holden (Vice-Chair) Mrs J O’Keeffe (Treasurer) Mrs S Cubitt (Secretary) Ms K Bruerton Mr P Hatcher

The Trustees would also like to express their thanks to all those who supported the charity during this exceptional year, whether financially, by volunteering their time or in other ways.

The Trustees have identified and considered the major risks to which the charity is

exposed and have established systems and procedures to manage those risks. The principal risk associated with the charity’s operation remains the economic outlook and availability of operational grants.

OBJECTIVES AND ACTIVITIES

The objectives of the charity are to care for the needs of those with Turner Syndrome throughout the United Kingdom and to provide information, advice and assistance on all matters relating to caring for those with Turner Syndrome. The Society offers support and information for girls and women with Turner Syndrome, as well as to their family and friends. The Society enjoys an excellent relationship with relevant specialists to promote a good basis for the education and management of Turner syndrome.

The Trustees have had regard to the requirement to demonstrate Public Benefit. They are satisfied that the charity’s activities are demonstrably for the benefit of those members of the public who seek to avail themselves of its services.

Turner Syndrome Support Society

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Annual Report & Financial Statement 2024-2025 5

Annual Report

TSSS Fundraising – Thank You

In these uncertain times, like many charities, we’re facing challenges around future funding. But thanks to the incredible generosity and spirit of our members, we continue to move forward with hope and determination.

We’re truly grateful to everyone who has supported us – whether it’s children kindly donating their pocket money, or members taking on amazing fundraising challenges. Every single contribution, big or small, helps us make a real difference in the lives of those affected by Turner Syndrome. Your support keeps the Turner Syndrome Support Society going strong. Quite simply, we wouldn’t be here without you – and we can’t thank you enough.

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Health and Economic
Considerations
One of the Society’s greatest strengths lies in the support uu
we provide to one another – whether through Local Group SS
meetings, Open Days, Conferences, or other activities. es
While we continue to face challenges, both economic and
health-related, we remain committed to learning and
adapting, just as organisations worldwide must do.
Throughout the year, we have continually evolved our
approach to overcome obstacles, always with the best
E
interests of our members at heart.
|a ; 3 sure oee (UK)
Strategic Development (:) “
Please contact us for more information:
Tel 0141 952 8006
Email Turner.Syndrome@tss.org.uk
Website www.tss.org.uk
Arlene Smyth12 Simpson Court Clydebank Business Park • Turner Syndrome Support Society• 11 South Avenue • Clydebank G81 2NR
annually
Girls and women who have Turner Syndrome can benefit greatly
from appropriate medical treatment. Sadly however, many are
to obtain help with other aspects of the syndrome. not diagnosed early enough to benefit from treatment or are able
They are notThose who have been diagnosed often think they are on their own.
, the TSSS is here for them, their families and friends.
The TSSS [UK] aims to deliver the highest standards of accurate,
timely and relevant information about Turner syndrome and to
families and friends throughout the UK.offer support to all girls and women with Turner syndrome, their
Turner Syndrome
Awarene
What is Turner Syndrome?
Turner syndrome is a complex and common genetic disorder that affects 1:2000
live female births. The main characteristic features of TS relate to growth and
development but other characteristics may be associated with the condition.Do you have Turner Syndrome?
Do you think you might have Turner Syndrome?
Do you Do you think knowyour daughtersomeone who has Turner Syndrome?might have Turner Syndrome?
Do you want to know more about Turner Syndrome?
Early diagnosis is vital
so that treatment can
begin for any TS
related health
issues.
TS can be
diagnosed:
Supported by the Emma Woods Memorial Fund
in memory of Emma Woods
21st
June
• ••• During During In During infancypre-teenchildhoodfoetal life
• Late period (8-12 years) adolescence/
adulthood .
TSSSUK
TurnerSyndSoc
@tsssukofficial
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Strategic Development

We are proud to see the Society’s ongoing growth and development. Our dedicated team of Trustees and Committee members convene formally – either in person or virtually – at least three times each year to plan, allocate responsibilities, and ensure we meet our aims and objectives. We strive to make the most of our volunteers’ skills while being mindful not to overburden individuals, enabling the Society to operate effectively within the limits of our available resources.

TSSS Awareness Week

The Annual Awareness Week is used to try and extend a greater awareness of Turner Syndrome and related issues. The annual awareness week, based around the 21st of June, is when we try to raise awareness through coordinated events, where members and friends of the Society take part in events in their local areas. Thank you to all who helped make this a success. An “I love TSSS because” poster was made available for posting online along with getting #proudtohaveTS #ThisismewithTS #mydaughterhasTS

Trusted Information, Shared Globally

We’re really proud of the wide range of information the Society offers – and even prouder of how accurate, relevant, and helpful it continues to be. People from all over the world reach out to us for resources, and it’s wonderful to know that what we share is making a difference far beyond the UK.

Our library of information is always growing. We regularly review and update everything to make sure it stays current and useful for anyone looking to learn more about Turner Syndrome.

mysisterhasTS #myfriendhasTS trending.

Turner Syndrome Support Society

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Patrons

Professor Melanie Davies is a consultant obstetrician and gynaecologist and accredited subspecialist in reproductive medicine, senior consultant at the Reproductive Medicine Unit, and chair of trustees of the EGA Hospital Charity.

Her special interests are in gynae endocrinology and fertility preservation. Specialities include, Reproductive endocrinology, Menopause and premature menopause (POI), Reproductive effects of cancer, Polycystic ovarian syndrome, Turner syndrome & Care of adolescents and young adults.

Melanie runs a large service for reproductive effects of cancer and chronic disease and leads dedicated clinics for women with premature ovarian insufficiency and adolescent care. She set up and leads an NHS

‘emergency service’ for women with a new cancer diagnosis to offer fertility preservation.

Melanie is the founding chair of Fertility Preservation UK and has been a member of the medical advisory committee of the British Menopause Society and the executive committee of the British Fertility Society. She was previously responsible for the HFEA-licensed fertility services provided at UCLH, a clinical advisor to the HFEA and a contributor to NICE guidance on fertility, menopause, endometriosis, and heavy menstrual bleeding.

NHS and Academic Posts - Consultant Obstetrician and Gynaecologist, University College London Hospitals. Professor of Reproductive Medicine, University College London.

Articles & Videos - Professor Davies is actively involved in research and training. She is the chief investigator for the POISE study, a multicentre NIHR-funded trial on treatment of premature menopause (POI), and the BLUSH study which looks at non-hormonal treatments for menopause symptoms. She lectures nationally and internationally and has publications in the New England Journal of Medicine, British Medical Journal, and Human Reproduction. She is an experienced RCOG training programme director for reproductive medicine and has chaired the national subspecialty training committee.

Professor Gerard Conway is a retired consultant endocrinologist at University College London Hospitals and Professor of Clinical Medicine in the Institute for Women’s Heath, University College London. His clinical practice covers general endocrinology including pituitary, adrenal, thyroid and reproductive endocrinology.

His clinical research interests are in the field of reproductive endocrinology particularly polycystic ovary syndrome, ovarian and testicular function, disorders of sexual development and Turner Syndrome. This research has formed the basis of over 160 academic publications. Professor Conway maintains a clinical research program with visiting international research fellows.

qualified from the Royal London Hospital in 1981 and trained in Diabetes, Endocrinology and General Medicine in several centres in central London. His research thesis was in the endocrinology of the polycystic ovary syndrome, and he then undertook as fellowship in genetic research in Prince Henry’s Institute for Medical Research, Melbourne Australia. On return he became Senior Lecturer in Medicine at UCL in 1994 and subsequently Professor of Clinical Medicine in the Institute for Women’s Heath UCL in 2012.

With a major interest in teaching, Professor Conway lectures in Reproductive Endocrinology, for the Society for Endocrinology, the Royal College of Obstetricians and Gynaecologists and internationally with the endocrine societies in the USA, Sri Lanka, India, New Zealand, Australia, Japan and throughout Europe.

Patient care is at the heart of the clinical work of Professor Conway, and he works closely with many patient support groups.

Annual Report & Financial Statement 2024-2025

7

Undiagnosed girls and women with TS

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Please contact us for more information:
Arlene Smyth • Turner Syndrome Support Society
12 Simpson Court • 11 South Avenue • 11 South Avenue 11 South Avenue
Clydebank Business Park • Clydebank G81 2NR
Tel 0141 952 80060141 952 8006
Email Turner.Syndrome@tss.org.ukTurner.Syndrome@tss.org.uk
Website www.tss.org.ukwww.tss.org.uk
UK women and girls of all ages
UK girls aged 0 to 14 years old
(Live female births)
England
(Live female births) Wales
Scotland
Northern Ireland
Total UK estimated undiagnosed aged 0 to 14 years
Our aim is to improve awareness, diagnosis and
understanding of Turner Syndrome throughout the
world. Below we have some interesting facts and
figures showing how many girls and women remain
and women with TS medical care. undiagnosed and unable to access the best possible
Please support us by talking about Turner Syndrome.
South WestSouth EastLondonEast EnglandWest MidlandsEast MidlandsYorkshireNorth WestNorth EastAll agesRegions TotalsNorthern IrelandScotlandWalesEnAll agesUK Areas gland Census 2021 2,940,08929,407,249 PopulationPopulationFemaleFemaleCensus2021 34,814,7812,826,0433,263,2333,071,0434,783,7154,521,7521,368,3503,833,2182,516,8192,821,1491,611,486974,8972,826,0433,263,2333,071,0434,783,7154,521,7521,368,3503,833,2182,516,8192,821,1491,611,486974,8973,263,2333,071,0434,783,7154,521,7521,368,3503,833,2182,516,8192,821,1491,611,486974,8973,071,0434,783,7154,521,7521,368,3503,833,2182,516,8192,821,1491,611,486974,8974,783,7154,521,7521,368,3503,833,2182,516,8192,821,1491,611,486974,897 FemaleFemaleCensus2021 Turner Syndrome Turner Syndrome 1 in 2500 with1 in 2500 with 13,9231,8081,3051,0071,2281,1761,9131,53311,7621,1301,128547 Estimated 389644 Estimated estimated based 25% diagnosed25% diagnosed based on Data3,4802,940294478452307326252282383137282estimatedavailable16197availableon Data Estimated girlsEstimated girlsundiaundiagnosed10and womenand women 1,4351,3561,150 remaining 8,822882979 remaining, 847755921 443 846292483411 gnosed Total 0 to 14 years10 to 14 years old5 to 9 years old0 to 4 years oldTotal 0 to 14 years10 to 14 years old5 to 9 years old0 to 4 years oldTotal 0 to 14 years10 to 14 years old5 to 9 years old0 to 4 years oldDiagnosis ratesEstimatedAged 0 to 14 years Census 2021 4,853,600405,597 Population 1,635,842248,794148,974136,3601,496,0121,721,746120,26384,70791,17672,911 Female (Live female births) Turner Syndrome 1 in 2500 with 1,941162606896454855598 Estimated 98363329 25% diagnosed based on Data4854124estimated151415016317212available987 undiagnosed1,456122remainingEstimated 4544836 74 49141517272522 girls
Total 0 to 14 years10 to 14 years old5 to 9 years old0 to 4 years old 176,77659,98953,47463,313 25247121 18665 53 191816
1,705
Registered Charity Number: 1080507. Registered Scottish Charity Number: SC037932
TSSSUK
TurnerSyndSoc
@tsssukofficial
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Publications & Literature

All our factsheets are available to download direct from our website ———— or a request can be Ss made to the office (with a donation to cover P&P) | [- for a hard copy. We are — enormously proud of all our literature, especially —— the important aspects of managing health based on accurate information. As a testament to this we frequently receive requests from other TS societies around the world for permission to translate our literature. Please contact us for more information: Arlene Smyth • Turner Syndrome Support Society 12 Simpson Court • 11 South Avenue • 11 South Avenue 11 South Avenue Clydebank Business Park • Clydebank G81 2NR Tel 0141 952 80060141 952 8006 Email Turner.Syndrome@tss.org.ukTurner.Syndrome@tss.org.uk Website www.tss.org.ukwww.tss.org.uk Population FemaleCensus2021Census20212021 EnAll agesUK Areas glandAll agesUK Areas glandUK Areas glandglandland 29,407,249 Northern IrelandScotlandWalesEnAll agesUK Areas glandScotlandWalesEnAll agesUK Areas glandWalesEnAll agesUK Areas gland 2,821,1491,611,486974,8971,611,486974,897974,897 All agesRegions TotalsNorthern IrelandScotlandWalesEnAll agesUK Areas glandRegions TotalsNorthern IrelandScotlandWalesEnAll agesUK Areas glandTotalsNorthern IrelandScotlandWalesEnAll agesUK Areas gland PopulationPopulationFemaleFemaleCensus2021 Census 2021 East MidlandsYorkshireNorth WestNorth EastAll agesRegions TotalsNorthern IrelandScotlandWalesEnAll agesUK Areas glandYorkshireNorth WestNorth EastAll agesRegions TotalsNorthern IrelandScotlandWalesEnAll agesUK Areas glandNorth WestNorth EastAll agesRegions TotalsNorthern IrelandScotlandWalesEnAll agesUK Areas glandNorth EastAll agesRegions TotalsNorthern IrelandScotlandWalesEnAll agesUK Areas gland 1,368,3503,833,2182,516,8192,821,1491,611,486974,8973,833,2182,516,8192,821,1491,611,486974,8972,516,8192,821,1491,611,486974,897 LondonEast EnglandWest MidlandsEast MidlandsYorkshireNorth WestNorth EastAll agesRegions TotalsNorthern IrelandScotlandWalesEnAll agesUK Areas glandEast EnglandWest MidlandsEast MidlandsYorkshireNorth WestNorth EastAll agesRegions TotalsNorthern IrelandScotlandWalesEnAll agesUK Areas glandWest MidlandsEast MidlandsYorkshireNorth WestNorth EastAll agesRegions TotalsNorthern IrelandScotlandWalesEnAll agesUK Areas gland 4,521,7521,368,3503,833,2182,516,8192,821,1491,611,486974,897 South EastLondonEast EnglandWest MidlandsEast MidlandsYorkshireNorth WestNorth EastAll agesRegions TotalsNorthern IrelandScotlandWalesEnAll agesUK Areas gland 34,814,7812,826,0433,263,2333,071,0434,783,7154,521,7521,368,3503,833,2182,516,8192,821,1491,611,486974,8972,826,0433,263,2333,071,0434,783,7154,521,7521,368,3503,833,2182,516,8192,821,1491,611,486974,8973,263,2333,071,0434,783,7154,521,7521,368,3503,833,2182,516,8192,821,1491,611,486974,8973,071,0434,783,7154,521,7521,368,3503,833,2182,516,8192,821,1491,611,486974,8974,783,7154,521,7521,368,3503,833,2182,516,8192,821,1491,611,486974,897 South WestSouth EastLondonEast EnglandWest MidlandsEast MidlandsYorkshireNorth WestNorth EastAll agesRegions TotalsNorthern IrelandScotlandWalesEnAll agesUK Areas gland 2,940,08929,407,249

Annual Conference

We were back at Yarnfield for the second time and we had learned a number of valuable lessons from our first conference there. Some of the ideas from our first conference worked and some didn’t.

There were a number of tweaks and one of the main ones was the relocation of the registration desk. This in addition to the movement of the stalls and free information enabled a more centralised area which helped their visibility through the conference.

Due to some issues with the loop system and noise overflow from adjacent rooms in the first year we ensured

this was not repeated in the schedule. The overall feedback was still positive on the venue, the facilities, food, accommodation and the conference, which was a great relief.

As well as the sessions on the Saturday and Sunday, the award presentations started on the Saturday morning and continued into the evening. Starting with the Emma Woods Memorial Butterfly in the morning, followed by Ambassadors & the Masters award in the evening. Well done to all the worthy winners.

The evening show then came front and centre, which from its humble beginnings 15 years ago, is now a full-on production taking months of planning for the theme, music choices and choreography.

As always, the show was a hit with the girls & ladies with parents, partners and some volunteers closing the show in the usual dramatic and “it will be alright on the night” attitude.

We will continue to review feedback after each conference for ways to ensure the conference fits the needs of the members attending.

Turner Syndrome Support Society

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Aspects: Our Beloved Newsletter

Our newsletter remains one of the AspecTS® Society’s most cherished ways of staying connected – and we couldn’t be prouder of it. Thanks to the thoughtful leadership of our editor, Phil Hatcher, it continues to grow and evolve with each edition. Phil’s dedication and eye for detail have kept the newsletter informative,

AspecTS®

engaging, and beautifully put AspecTS@ together. As the Society continues to flourish, we’re excited to see how the newsletter will grow alongside it – bringing stories, updates, and inspiration to everyone involved.

Open Days & Events

Open Days are a way for members to connect and find information and the Society is as always extremely grateful to the health professionals who are willing to speak at these events. Thanks also go to all those committee members and volunteers who help out during the day ensuring the smooth running of these events. It is encouraging to welcome so many new families to TSSS gatherings. Very often close bonds are formed, and friendships develop that will last a lifetime. We also had the Turner Syndrome Awareness Football Festival in Glasgow on 20th July 24 which was made possible through the Emma Woods Memorial Fund. This raised media attention as well as being a fundraising success.

On Friday 7th March and Saturday 8th March we held a Meet the Expert Day followed by a Seminar day. This was where many talented expert speakers from Endocrinology, Cardiology, Fertility and Genetics attended. Members shared their experiences so both sides could see the journey.

Online Media

When people first want to learn about Turner Syndrome (TS), they often turn to online media – and we know how important it is to make that first impression count. That’s why we put so much care into making sure the information on our website is clear, balanced, and trustworthy. But it’s more than just facts – it’s a welcoming space that shows there’s a supportive community here in the UK for anyone affected by TS.

We’re genuinely delighted that so many individuals and families have discovered the Society through our website. It’s regularly updated to keep things fresh and accurate, and we’re always exploring new ways to make our content even more helpful and accessible.

Spreading Awareness on Social Media

We’re also active on platforms like Facebook and Instagram, using them to raise awareness, share updates, and offer support. Whether it’s pointing people to reliable resources or simply being there to listen, we understand how powerful these spaces can be – especially in recent years, when staying connected online has become more important than ever.

Celebrating Community Voices

One of our wonderful committee members, Emily Seymour, has taken things a step further by launching her own podcast: Turner Syndrome, Talk and Tea. It’s a heartfelt and <a insightful series where guests share their experiences with TS – not just those living with it, TEA but also siblings,

parents, and loved ones. It’s a beautiful reflection of the richness and diversity of our community.

We’re incredibly proud of Emily and truly admire the care, professionalism, and passion she brings to every episode. incredibly proud of Emily and deeply impressed by the care, professionalism, and passion she brings to every episode. There are now over 200 episodes which is an incredible achievement.

Annual Report & Financial Statement 2024-2025

9

International Turner Syndrome Committee

Arlene, as Chair of the committee, has worked tirelessly to ensure that this moves forward. This is updated on a continual basis and Societies around the world are being added on an on-going basis and now has 24 countries connected.

Friendship Groups

It is important that area-based groups continue to thrive as they play an important part supporting girls and women with TS and their families within different regions. The Society’s role is to encourage and facilitate additional groups once an interest in setting one up has been expressed. We currently have Friendship groups in Scotland, Central England, Wales, Northern Ireland, Northeast England, Northwest England, London, Southwest England, and they continue to go from strength to strength. Ex Chair Hayley Cleaver has taken over the co-ordination of these groups and they have made great advances under her guidance. It is hoped that more Friendship groups will start in all regions of the country. Friendship packs have been created to assist in the setting up and running of Friendship groups. Whilst unable to do face to face meets during the pandemic, several groups had virtual meet ups.

Medical Conferences

The Society continues to develop and foster relations within the medical profession by attending conferences. Whilst occasional meetings are online the majority are in person so this means that there is significant time on the road for Arlene as shown by the main conferences attended in person below.

European project on registries (EuRRECa) Milan • 21st April 2024

Endo ERN General Assembly Milan • 23 – 24th April 2024

ECE Stockholm • 11 – 14th May 2024

Endocrine Academy 3rd July 2024

BSPED Glasgow • 7th – 9th October 2024 ESPE Liverpool • 16th – 18th November 2024

Scottish Paediatrics Endocrine Group Stirling • 28th Jan 2025

TS Meet the Expert Day for Health Care Professionals Glasgow • 7th March 2025 TS Seminar Day Glasgow • 8th March 2025 BES Harrogate • 10th – 12th March 2025

As can be seen, having a presence at these conferences and meetings enables the Society to raise awareness and help educate those within the medical profession. It also enables us to gain valuable help and support in ensuring that all girls and women with TS are correctly looked after.

Arlene also represents the TSSS by being on the board of the Office for Rare Conditions in Glasgow and The Scottish Paediatric Endocrine Group (SPEG). European Registries for Rare Endocrine Conditions (EuRRECa) and Endocrine European Reference Network (ERN). All these projects bring together expertise to improve treatment and build rare condition registries.

All the above allows the society to work collaboratively to improve awareness, diagnosis, treatment, and overall care of those who have TS. We are proud to play our part in the worldwide TS community.

Conclusion

The Society continues to grow and develop, and its positive approach is fuelled by the wonderful girls and women with TS that we strive to serve. In what was another challenging year for all, we adjusted to the new normal and whilst there was still an issue with some face-to-face meetings, we could still be there for each other, in the good and the not so good times.

Special thanks are extended firstly to all our members as without whose support we would be unable to continue and to the Trustees, Committee Members, Executive Officer, Admin Assistant and all the volunteers for their support, loyalty and sheer hard work in shaping the future of the Society.

By order of the Trustees • Mrs S Wall & Mr S Wall • Co-Chairs • 20th September 2025

Turner Syndrome Support Society

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Trustees’ —— a — Responsibilities

Charity law requires the Trustees to prepare accounts for each financial year which give a true and fair view of the situation of the Trust and of the surplus or deficit of the Trust for that period. In preparing those accounts, the Trustees are required to:

The Trustees are also responsible for maintaining proper accounting records that disclose, with reasonable accuracy at any time, the financial position of the Trust and enable them to ensure that the financial statements comply with the Charities Act 2006. Furthermore, the Trustees are responsible for safeguarding the assets of the Trust and for taking reasonable steps to prevent and detect fraud and other irregularities.

Approved by the Trustees on 20th Sept 2025 and signed on their behalf by:

Susan Wall • Trustee

Annual Report & Financial Statement 2024-2025

11

Treasurer’s Report

The Charity Commission requires the Trustees to prepare financial statements for each financial year which give a true and fair view of the situation of the Turner Syndrome Support Society for that period. In preparing those financial statements, the Trustees are required to:

• Make judgements and estimates that are reasonable and prudent.

To simplify membership administration, a single joining date of the 1st of June every year is used.

Overall, the Treasurer and Trustees realise that there is no guarantee of future income and therefore need to be mindful of this when planning. Additionally, whilst grants have never been a significant income stream for the society, due to the heavy administrative burden in producing them, we realise that this is an income stream that we cannot ignore and will therefore put more emphasis on in the future. The on-going aim is to continue to ensure that value for money is achieved within all areas of expenditure and that the Society continues to seek to attract additional corporate benefactors, as well as increased membership and fundraising income.

Mrs J O’Keeffe

Treasurer • 20th September 2025

Turner Syndrome Support Society

VA 12

Turner Syndrome Support Society (UK)
Receipts and Payments Accounts• 1st April 2024 - 31st March 2025		 Turner Syndrome Support Society (UK)
Receipts and Payments Accounts• 1st April 2024 - 31st March 2025		 Turner Syndrome Support Society (UK)
Receipts and Payments Accounts• 1st April 2024 - 31st March 2025		 Turner Syndrome Support Society (UK)
Receipts and Payments Accounts• 1st April 2024 - 31st March 2025		 Turner Syndrome Support Society (UK)
Receipts and Payments Accounts• 1st April 2024 - 31st March 2025
Receipts 2024/202501/04/24-31/03/25 2023/202401/04/23-31/03/24
Memberships £17,005.00 £15,818.50
Donations & Fundraising £85,952.21 £69,715.56
Gift Aid £9,399.38 £6,189.17
Conference & Open Days £53,305.16 £33,492.44
Benefactors/Restricted Funds £39,115.31 £258,614.48
TS International Conference £0.00 £0.00
Shop £3,682.65 £3,498.65
Consult Fee/Expenses Received £828.74 £4,579.59
Miscellaneous £713.84 £0.00
Bank Interest Received £9,937.12 £8,904.74
Sub Total £219,939.41 £400,813.13
Opening Bank Balance At 1st April
2023		 £636,172.74 At 1st April
2023		 £417,369.79
Total £856,112.15 £818,182.92
Payments 2024/202501/04/24-31/03/25 2023/202401/04/23-31/03/24
Rent & Rates £19,433.55 £12,908.56
Heat, Light, Insurance £6,544.40 £3,874.08
Printing, Stationery, Postage £14,136.34 £12,212.58
Conference & Open Days £57,599.08 £50,032.67
Wages, Salaries & Employers NIC £56,233.16 £52,790.20
Telephone £1,509.07 £653.97
Computer/Database £10,014.92 £12,208.58
Professional Fees £2,880.00 £2,305.20
Processing Credit Fees £5,474.18 £4,219.15
Bank Charges £1,037.80 £1,012.89
Equipment Hire & Maintenance £1,263.40 £885.39
Literature & Brochures £1,203.71 £25.98
TSSS Merchandise £4,360.23 £8,033.55
General Expenses £1,084.32 £1,891.70
Travel & Governance Expenses £5,803.52 £4,455.68
Training Courses £2,425.00 £4,500.00
Projects £1,267.98 £10,000.00
Advertising £8,419.04 £0.00
Sub Total £200,689.70 £182,010.18
Closing Bank Balance At 31st
March 2025		 £200,689.70 At 31st
March 2024		 £636,172.74
Total £856,112.15 £818,182.92
Surplus/Defcit for the year £19,249.71 £218,802.95

Annual Report & Financial Statement 2024-2025

13

TURNER SYNDROME SUPPORT SOCIETY

INDEPENDENT EXAMINER'S REPORT TO THE TRUSTEES OF TURNER SYNDROME SUPPORT SOCIETY

PERIOD FROM 1 APRIL 2024 TO 31 MARCH 2025

I report on the accounts of the charity for the period from 1 April 2024 to 31 March 2025 which is set out on the accompanying pages.

RESPECTIVE RESPONSIBILITIES OF TRUSTEES AND EXAMINER

The charity's trustees are responsible for the preparation of the accounts. The charity's trustees consider that an audit is not required for this period under section 144(2) of the Charities Act 2011 (the 2011 Act) or under Regulation 10(1)(a) to (c) of the Charities Accounts (Scotland) Regulations 2006 (the 2006 Regulations) and that an independent examination is needed.

It is my responsibility to:

BASIS OF INDEPENDENT EXAMINER'S REPORT

My examination was carried out in accordance with the general Directions given by the Charity Commission and is in accordance with Regulation 11 of the Charities Accounts (Scotland) Regulations 2006. An examination includes a review of the accounting records kept by the charity and a comparison of the accounts presented with those records. It also includes consideration of any unusual items or disclosures in the accounts, and seeking explanations from you as trustees concerning any such matters. The procedures undertaken do not provide all the evidence that would be required in an audit and consequently no opinion is given as to whether the accounts present a 'true and fair view' and the report is limited to those matters set out in the statement below.

INDEPENDENT EXAMINER'S STATEMENT

In the course of my examination, no matter has come to my attention:

(1) which gives me reasonable cause to believe that in any material respect the requirements:

have not been met; or

Nicola Jane Cadwallader FCCA

For and on Behalf of

David Cadwallader & Co Limited • Independent Examiner • Chartered Certified Accountants Suite 3 Bignell Park Barns • Chesterton • Bicester • Oxon OX26 1TD

21st September 2025

Turner Syndrome Support Society

14

Annual Report & Financial Statement 2024-2025 15

Registered Office:

4 Overbury • Carterton • Oxon OX18 1HQ

12 Simpson Court • 11 South Avenue Clydebank Business Park • Clydebank G81 2NR

Registered Charity (England & Wales) : 1080507 Registered Charity (Scotland) : SC037932