## Shwachman Diamond Syndrome UK
## Annual report for the period 1 November 2021 to 31 October 2022
## 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 £8,294 in donations from a variety of individual and corporate sources. The financial year spanned the period impacted by the COVID-19 pandemic which reduced the ability of the Charity and Fundraisers to organise events in support of the Charity. 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
The Charity has continued to support the work of the Adult clinic in Cambridge. 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 and has committed to support the International Shwachman Diamond Congress which, following its postponement, is now intended to be hosted in Cambridge in April 2023.
## OUR PLANS FOR 2023
The Trustees will continue to prioritise the following activities:
- Support of the UK patient registry and furthering the Charity’s research objectives,
- Formation and commissioning of a UK Adult patient clinic,
- Continuing to host family days when pandemic conditions allow,
- Hosting family days and supporting the International Shwachman Diamond Congress in Cambridge, and
- Developing the Charity’s fund raising capacity.
The trustees remain committed to advancing the cause of SDS in the UK and are open to suggestions from the family and patient community on areas that would help the Charity achieve its objective of assisting those who are impacted by this disorder.
Board of Trustees
3 January 2023
2
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Shwachman Diamond Syndrome UK 1164269
Receipts and payments accounts CC16a
For the period 01-Nov-21 31-Oct-22
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 7,270 24 - 7,294 28,969
Interest on cash balances - - - - -
Prof Warren fundraising - 1,000 - 1,000 -
- - - - -
- - - - -
- - - - -
- - - - -
- - - - -
Sub total (Gross income for AR) 7,270 1,024 - 8,294 28,969
A2 Asset and investment sales, (see
table).
- - - - -
- - - - -
Sub total - - - - -
Total receipts 7,270 1,024 - 8,294 28,969
A3 Payments
Scientific conferences and research - - - - -
Payments to support fund raising activities - - - -
Travel expenses - - - - -
Family day, Website and public engagement - - - - -
Support of patient clinics - - - -
Legal fees - - - -
Literature review - - - - 2,500
Cure roadmap - - - - 12,901
- - - - -
Sub total - - - - 15,401
A4 Asset and investment purchases, (see
table)
- - - - -
- - - - -
Sub total - - - - -
Total payments - - - -
Net of receipts/(payments) 7,270 1,024 - 8,294
A5 Transfers between funds - - - - -
A6 Cash funds last year end 42,887 11,042 - 53,929
Cash funds this year end 50,157 12,066 - 62,223
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03/01/2023
CCXX R1 accounts (SS)
1
## **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
**B5 Liabilities**
**B4 Assets retained for the charity’s**
**own use**
**B3 Investment assets**
**B2 Other monetary assets**
**B1 Cash funds**|Signature
University of Cambridge
Other
**Details**
**Details**
**Details**
**Details**
Cash at bank
**_Total cash funds_**
(agree balances with receipts and payments
account(s))
**Details**|**Unrestricted**
**funds**
**Restricted**
**funds**
**to nearest £**
**to nearest £**
**50,157**
**12,066**
**-**
**-**
**-**
**-**
**50,157**
**12,066**
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
3 Jan 23|
03/01/2023
CCXX R2 accounts (SS)
2