2025-10-31-accounts - Shwachman Diamond Syndrome UK

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SDS UK Trustees’ Annual Report

For the year ended 31 October 2025

1 CHARITY DETAILS

Charity name: Shwachman Diamond Syndrome UK (SDS UK) Registered in England and Wales: Charity No. 1164269 (Charity Commission for England and Wales)

Principal office / correspondence address: 5 Lincoln Road, Washingborough, Lincoln, LN4 1EQ

Legal form: Charitable Incorporated Organisation (“CIO”)

Charity trustees during the year:

Julia Hawkins – Chairperson
Andrew Olding
Heather Couch
Kapil Gotecha

The Charity had no full time employees during the year and benefitted from the services of a fractional assistant, Suzanne Lloyd.

Following the year end, Julia Hawkins and Heather Couch retired as trustees with effect from 12[th] December 2025 and 8th May 2026 respectively. Rebecca Cuffe joined as a trustee with effect from 7th November 2025.

No trustee received any remuneration for work completed during the year.

2 ABOUT SHWACHMAN DIAMOND SYNDROME

Our mission is to support UK patients and families affected by SDS.

Shwachman Diamond Syndrome (SDS) is a rare genetic disorder that causes problems with the skeleton, digestion, and with the blood / immune system. Research studies have estimated that it occurs in approximately 1 in 75,000 births. Patients with SDS can have problems growing, with the absorption of food, will have an impaired immune system from time to time and may have more frequent infections and fevers. In a minority of cases, patients may go on to develop blood cancers such as myelodysplastic syndrome and leukaemia.

3 STRUCTURE, GOVERNANCE AND MANAGEMENT

During the year, Shwachman Diamond Syndrome UK (“SDSUK”) was governed by its constitution, adopted on 5 November 2015. The charity operated under the oversight of its Board of Trustees, all of whom serve on a voluntary basis.

Trustees are appointed in accordance with the governing document and bring relevant skills and experience to the Charity to enable it to deliver its charitable objectives. The trustees meet regularly to oversee the charity’s work, finances, and strategic direction.

The charity works collaboratively with the Aplastic Anaemia Trust and benefits from funding and support from the National Lottery-funded ‘Better Together for Healthy Bone Marrow Project,’ as well as other rare disease organisations, clinicians, and patient families to collaborate on shared objectives across the UK.

4 CHARITABLE PURPOSES

The charity’s purposes, as set out in its governing document, are:

To provide relief to patients and families in the UK who are affected by Shwachman Diamond Syndrome in particular but not exclusively by: Promoting access to health and education services for affected patients throughout the UK; Supporting research into the pathophysiology of SDS and its current and potential treatment and the public dissemination of the useful results thereof; Providing and encouraging others to provide educational resources and activities about SDS for the benefit of families, professionals and the public, both nationally and internationally.

5 OBJECTIVES AND ACTIVITIES

During the year, the trustees focused on:

Main activities:

Providing information, advice, and emotional support to families affected by SDS.
Promoting awareness of the condition among healthcare professionals.
Supporting and disseminating research findings to improve diagnosis and treatment.
Engaging in fundraising and awareness events to sustain the charity’s work.

Achievements:

Contributed to SDS’s research support and awareness programmes.
Organised online information sessions and outreach to newly diagnosed families.
Developed plans for a 2026 family support day.
Appointed a fractional assistant to make the operations of the Charity more efficient.

6 PUBLIC BENEFIT STATEMENT

In planning and carrying out the charity’s activities, the trustees have had due regard to the guidance on public benefit issued by the Charity Commission for England and Wales.

SDS provides clear public benefit by:

Offering free access to reliable, evidence-based information and peer support.
Enabling families to connect with others affected by SDS.
Funding and promoting medical research aimed at improving outcomes.
Raising awareness among clinicians and the general public to encourage early diagnosis.

All activities are open to anyone affected by SDS, regardless of location, background, or means.

The trustees recognise their responsibility to safeguard the wellbeing of the families, children, and vulnerable adults who engage with the charity's activities, including online support sessions, information events, and the planned family support day. The charity has a safeguarding policy in place, which is reviewed annually by the trustees, and any concerns raised would be addressed in line with this policy and reported to the Charity Commission where required. Given the charity's size and voluntary structure, day-to-day safeguarding oversight rests with the trustees, who ensure that any third parties or freelancers engaged to support events are appropriately briefed on the charity's expectations.

7 FINANCIAL REVIEW

For the period 1 November 2024 to 31 October 2025:

Total income: £ 56,700
Total expenditure: £ 25,719
Net surplus/(deficit): £ 30,981

Income was derived primarily from individual donations, online fundraising, and grants. Many of the wider SDS communities have held and participated in fund raising activities and continue to enable the Charity to continue its work. The Trustees would like to thank everyone who has donated and who have held fund-raising events to support Shwachman Diamond Syndrome UK this year.

Expenditure focused on awareness materials, support resources, and administrative costs. The Charity made a substantial payment to support SDS Research led by Professor Warren in Cambridge and further payments to support fund raising activities and to bring the SDS community together for a family day.

Reserves of £9,500 were retained as at 31 October 2025 to support ongoing activities and provide a small buffer against funding fluctuations. The Charity retains its commitment to the University of Cambridge to fund a SDS registry hosted by the UK Biobank in Cambridge. This will support

Professor Warren’s current projects and lay the foundation for future research into SDS by established research teams.

These accounts have been prepared by Suzanne Lloyd, on a receipts and payments basis in accordance with section 133 of the Charities Act 2011.

The accounts were independently examined by Luke Howson, Finansure Ltd

8 RESERVES AND RISK MANAGEMENT

The trustees maintain modest reserves to ensure continuity of operations and to cover essential costs for at least three months of activity.

Key risks include dependency on voluntary income and the small size of the trustee team. These are mitigated through collaborative working within the Better Together Alliance, transparent financial monitoring, and efforts to broaden fundraising and volunteer support.

9 FUTURE PLANS

For the coming year (November 2025 – October 2026), the trustees aim to:

Deliver an SDS Adult & Family Day to bring together families, clinicians, and researchers.
Continue to engage with healthcare professionals across the UK.
Strengthen online support and communications, including new digital resources.
Continue to work closely with the Better Together Alliance to improve efficiency.

10 DECLARATION

The trustees declare that they have approved this report.

Signed on behalf of the trustees:

Signature: _________

Name: Andrew Olding

Position: Chairman

Date 24 July 2026

STATEMENT OF ACCOUNTS FOR THE YEAR

ENDED 31 OCTOBER 2025

Charity Commission: 1164269

Shwachman-Diamond Syndrome UK Income & Expenditure

November 2024 - October 2025

	2025 2024
Opening Balance	101,234 112,110
Income
Bank Interest/Investment Income Better Together Alliance/Grants Gift Aid Unrestricted Donations Total Income Expenditures	2,214 46 5,806 - - - 48,680 54,714 56,700 54,760
Total Admin Expenses Total Charitable Activity Total Fundraising Costs Total Governance Total Expenditures Surplus/(Deficit)	21,902 65,322 1,876 - 1,941 314 25,719 65,636 30,981 (10,876)
Closing Balance	132,215 101,234
Represented by:
Unrestricted Funds	126,944 95,174
Restricted Funds	5,271 6,060

These financial statements were approved by the Trustees and are signed on their behalf by:

Andy Olding Chair of Trustees

SCHWACHMAN DIAMOND SYNDROME UK

INDEPENDENT EXAMINER’S REPORT TO THE TRUSTEES

I report on the accounts of the above-named charity for the year ended 31 October 2025.

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 year under section 144 of the Charities Act 2011 (the Charities Act) and that an independent examination is needed.

It is my responsibility to:

examine the accounts under section 145 of the Charities Act;
to follow the procedures laid down in the general Directions given by the Charity Commission under section 145(5)(b) of the Charities Act; and
to state whether particular matters have come to my attention.

Basis of independent examiner’s report

My examination was carried out in accordance with the general Directions given by the Charity Commission. 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 connection with my examination, no matter has come to my attention:

which gives me reasonable cause to believe that in any material respect the requirements:
to keep accounting records in accordance with section 130 of the Charities Act; and
• to prepare accounts which accord with the accounting records and comply with the accounting requirements of the Charities Act

have not been met; or

to which, in my opinion, attention should be drawn in order to enable a proper understanding of the accounts to be reached.

……………………………………… Dated: ……………………………………. 24th July 2026 Luke Howson MAAT

Finansure Ltd, 2 Sheppard Street, Brymbo, Wrexham, LL11 5FF