## Shwachman Diamond Syndrome UK ## Annual report for the period 1 November 2020 to 31 October 2021 ## 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, - Kim Wright (retired 30 September 2021), - Heather Couch, - Kapil Gotecha, - Andrew Olding. ## FUND RAISING The Charity raised £28,969 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’s expenditure in the year constituted funds raised specifically for projects that support the Charity’s focus on developing a roadmap that sets out a path to finding a cure for Shwachman Diamond Syndrome. 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 financial commitment is over five years, and is now fully funded. 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 2023. ## OUR PLANS FOR 2022 The Trustees will continue to prioritise the following activities: - Support of the UK patient registry, - Formation and commissioning of a UK Adult patient clinic, - Continuing to host family days when pandemic conditions allow, - Supporting the International Shwachman Diamond Congress in Cambridge, and - Raising funds to support the work of the charity. 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 16 August 2022 2 **----- Start of picture text -----**
Shwachman Diamond Syndrome UK 1164269
Receipts and payments accounts CC16a
For the period 01-Nov-20 31-Oct-21
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 15,829 13,140 - 28,969 10,645
Interest on cash balances - - - - -
- - - - -
- - - - -
- - - - -
- - - - -
- - - - -
- - - - -
Sub total (Gross income for AR) 15,829 13,140 - 28,969 10,645
A2 Asset and investment sales, (see
table).
- - - - -
- - - - -
Sub total - - - - -
Total receipts 15,829 13,140 - 28,969 10,645
A3 Payments
Scientific conferences and research - - - - -
Payments to support fund raising activities - - - - 355
Travel expenses - - - - -
Family day, Website and public engagement - - - - -
Support of patient clinics - - - - 300
Legal fees - - - - 1,410
Literature review - 2,500 - 2,500 -
Cure roadmap 4,451 8,449 - 12,901 -
- - - - -
Sub total [ 4,451 ] 10,949 - 15,401 2,065
A4 Asset and investment purchases, (see
table)
- - - - -
- - - - -
Sub total [ - ] - - - -
Total payments 4,451 10,949 - 15,401 1,703
Net of receipts/(payments) 11,378 2,190 - 13,568 21,667
A5 Transfers between funds - - - - -
A6 Cash funds last year end 31,509 8,851 - 40,361 10,114
Cash funds this year end 42,887 11,042 - 53,929 40,361
**----- End of picture text -----**
30/08/2022 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
**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 £**
**42,887**
**11,042**
**-**
**-**
**-**
**-**
**42,887**
**11,042**
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
16 August 2022| 30/08/2022 CCXX R2 accounts (SS) 2 ## **Independent examiner's report on the accounts** ## **Section A Independent Examiner’s Report** **Report to the trustees/** Charity name Shwachman Diamond UK **members of** **On accounts for the year** 31 October 2021 **Charity no** 1164269 **ended (if any) Set out on pages** 1-2 (remember to include the page numbers of additional sheets) I report to the trustees on my examination of the accounts of the above charity (“the Trust”) for the year ended **31 / 10 / 2021** . **Responsibilities and** As the charity's trustees, you are responsible for the preparation of the **basis of report** accounts in accordance with the requirements of the Charities Act 2011 (“the Act”). I report in respect of my examination of the Trust’s accounts carried out under section 145 of the 2011 Act and in carrying out my examination, I have followed all the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act. **Independent** I have completed my examination. I confirm that no material matters have **examiner's statement** come to my attention in connection with the examination (other than that disclosed below *) which gives me cause to believe that in, any material respect: - the accounting records were not kept in accordance with section 130 of the Charities Act; or - the accounts did not accord with the accounting records; or - the accounts did not comply with the applicable requirements concerning the form and 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 have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached. * _Please delete the words in the brackets if they do not apply._ **Date:** 30/08/2022 **Signed: Name:** Michael Legge **Relevant professional** Diploma in Corporate Governance, Corporate Governance Institute **qualification(s) or body (if any):** > 1 **2018** **Oct** **IER** ## **Address:** Greenleigh Farm Chew Magna Bristol, BS40 8QR ## **Section B Disclosure** Only complete if the examiner needs to highlight material matters of concern (see CC32, Independent examination of charity accounts: directions and guidance for examiners). **Give here brief details of any items that the examiner wishes to disclose** . > 2 **2018** **Oct** **IER** **----- Start of picture text -----**
Shwachman Diamond Syndrome UK 1164269
Receipts and payments accounts CC16a
For the period 01-Nov-20 31-Oct-21
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 15,829 13,140 - 28,969 10,645
Interest on cash balances - - - - -
- - - - -
- - - - -
- - - - -
- - - - -
- - - - -
- - - - -
Sub total (Gross income for AR) 15,829 13,140 - 28,969 10,645
A2 Asset and investment sales, (see
table).
- - - - -
- - - - -
Sub total - - - - -
Total receipts 15,829 13,140 - 28,969 10,645
A3 Payments
Scientific conferences and research - - - - -
Payments to support fund raising activities - - - - 355
Travel expenses - - - - -
Family day, Website and public engagement - - - - -
Support of patient clinics - - - - 300
Legal fees - - - - 1,410
Literature review - 2,500 - 2,500 -
Cure roadmap 4,451 8,449 - 12,901 -
- - - - -
Sub total [ 4,451 ] 10,949 - 15,401 2,065
A4 Asset and investment purchases, (see
table)
- - - - -
- - - - -
Sub total [ - ] - - - -
Total payments 4,451 10,949 - 15,401 1,703
Net of receipts/(payments) 11,378 2,190 - 13,568 21,667
A5 Transfers between funds - - - - -
A6 Cash funds last year end 31,509 8,851 - 40,361 10,114
Cash funds this year end 42,887 11,042 - 53,929 40,361
**----- End of picture text -----**
30/08/2022 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
**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 £**
**42,887**
**11,042**
**-**
**-**
**-**
**-**
**42,887**
**11,042**
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
16 August 2022| 30/08/2022 CCXX R2 accounts (SS) 2