## Shwachman Diamond Syndrome UK Annual report for the period 1 November 2023 to 31 October 2024 ## 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 between 1 in 75,000 and 1 in 350,000 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. ## THE CHARITY Shwachman Diamond Syndrome UK is a charity that was formed as a Charitable Incorporated Organisation on 5 November 2015 with registered number 1164269. The Charity has been formed to support patients and families in the UK affected by SDS by: - promoting access to health and educational services for affected patients throughout the UK, - supporting research into the pathophysiology of SDS and its current and potential treatment, - and providing educational resources and activities about SDS for the benefit of families, professionals and the public. ## REVIEW OF THE PERIOD During the period the charity was focused on developing its activities and continuing to gather funds for future distribution. The following individuals served as Trustees during the period: - Julia Hawkins, - Heather Couch, - Kapil Gotecha, - Andrew Olding. ## FUND RAISING The Charity raised £54,714 in donations from a variety of individual and corporate sources. 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 AND COMMITMENTS In 2024, we 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. In addition, 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. The Trustees have set aside a small reserve for the limited ongoing costs of the Charity. ## OUR PLANS FOR 2025 The Trustees will continue to prioritise the following activities: - Support of the UK patient registry and furthering the Charity’s research objectives, - Supporting families including hosting days for families to come together and share their experiences. Board of Trustees 27 August 2025 2 **----- Start of picture text -----**
Shwachman Diamond Syndrome UK 1164269
Receipts and payments accounts CC16a
For the period 01-Nov-23 31-Oct-24
To
from
Section A Receipts and payments
Unrestricted Restricted Endowment
Total funds Last year
funds funds funds
to the nearest £ to the nearest £ to the nearest £ to the nearest £ to the nearest £
A1 Receipts
Donations 54,714 - - 54,714 61,691
Interest on cash balances 46 - - 46 -
Prof Warren fundraising - - - - -
- - - - -
- - - - -
- - - - -
- - - - -
- - - - -
Sub total (Gross income for AR) 54,760 - - 54,760 61,691
A2 Asset and investment sales, (see
table).
- - - - -
- - - - -
Sub total - - - - -
Total receipts 54,760 - - 54,760 61,691
A3 Payments
Scientific conferences and research 54,777 5,223 - 60,000 6,204
Payments to support fund raising activities 480 - - 480 2,175
Travel expenses 117 - - 117 162
Family day, Website and public engagement 4,726 - - 4,726 1,498
Support of patient clinics - - - - 150
Marketing materials - - - - 803
Other expense 314 - - 314 812
- - - - -
- - - - -
Sub total [ 60,413 ] 5,223 - 65,637 11,804
A4 Asset and investment purchases, (see
table)
- - - - -
- - - - -
Sub total [ - ] - - - -
Total payments 60,413 5,223 - 65,637 11,804
Net of receipts/(payments) - 5,653 - 5,223 - - 10,876 49,887
A5 Transfers between funds - - - - -
A6 Cash funds last year end 100,827 11,283 - 112,110 62,223
Cash funds this year end 95,174 6,060 - 101,234 112,110
**----- End of picture text -----**
09/05/2025 CCXX R1 accounts (SS) 1 |**Section B Statement of assets and liabilities at the end of the period**|**Section B Statement of assets and liabilities at the end of the period**|**Section B Statement of assets and liabilities at the end of the period**|| |---|---|---|---| |**Categories**
Signed by one or two trustees on behalf of all
the trustees
**B1 Cash funds**
**B2 Other monetary assets**
**B3 Investment assets**
**B4 Assets retained for the charity’s**
**own use**
**B5 Liabilities**|(agree balances with receipts and payments
account(s))
**Details**
Cash at bank
Short term investments
**_Total cash funds_**
**Details**
**Details**
**Details**
**Details**
University of Cambridge
Other
Signature|**Unrestricted**
**funds**
**Restricted**
**funds**
**to nearest £**
**to nearest £**
**45,127**
**6,060**
**50,046**
**-**
**-**
**-**
**95,174**
**6,060**
OK
OK
**Unrestricted**
**funds**
**Restricted**
**funds**
**to nearest £**
**to nearest £**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**Fund to which**
**asset belongs**
**Cost (optional)**
**-**
**-**
**-**
**-**
**-**
**Fund to which**
**asset belongs**
**Cost (optional)**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**Fund to which**
**liability relates**
**Amount due**
**(optional)**
Restricted
**29,969**
Restricted
**2,500**
**-**
**-**
**-**
Print Name
Andrew Olding|**Endowment**
**funds**
**to nearest £**
**-**
**-**
**-**| ||||**-**| ||||OK| ||||**Endowment**
**funds**
**to nearest £**
**-**
**-**
**-**
**-**
**-**
**-**
**Current value**
**(optional)**
**-**
**-**
**-**
**-**
**-**
**Current value**
**(optional)**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**When due**
**(optional)**
Date of
approval
27 August 25| 09/05/2025 CCXX R2 accounts (SS) 2 ## ## ## ## ##