## **Trustees’ annual report (including Directors’ report) for the period** **From: 14/12/23** **To: 5/4/25** **Charity name: FSHD UK CHARITY** ## **Charity registration number: 1206212** **Company number: CE034632** ## **Objectives and activities** ||SORP reference|| |---|---|---| |Summary of the purposes of
the charity as set out in its
governing document|Para 1.17|**To preserve and protect good health**
**among, and relieve the needs of, people**
**living with FSHD, their**
**families and carers, in particular but not**
**exclusively by:**
**(a) providing information, help and**
**support to such people and their families**
**and carers;**
**(b) making financial donations to support**
**organisations and individuals carrying**
**out research into FSHD,**
**the useful results of which will be**
**published for public benefit; and**
**(c) raising awareness of FSHD within the**
**general public, medical and scientific**
**communities.**
**(d) support medical and scientific**
**organisations or individuals with**
**activities and projects to further the**
**Charity’s overall objective of helping to**
**relieve the burden on, and improve**
**quality of life for, people living**
**with FSHD.**| |Summary of the main
activities in relation to those
purposes for the public
benefit, in particular, the
activities, projects or services
identified in the accounts.|Para 1.17 and
1.19|**As this is the first year of operation, the**
**focus has been on establishing**
**governance policies, bank accounts, and**
**recruiting volunteers as well as setting**
**up a website and social media accounts**
**for beneficiaries to stay updated on FSHD**
**research and support developments.**
**In addition, our Chair of Trustees has**
**continued to organise and lead a network**
**of clinical researchers and healthcare**
**professionals to bring more clinical trials**
**to the UK, support trial and site readiness**
**plus development of patient engagement**
**and education in the UK.**| |Statement confirming
whether the trustees have
had regard to the guidance
issued by the Charity
Commission on public
benefit|Para 1.18|**The trustees have paid due regard to**
**guidance issued by the Charity**
**Commission in deciding what activities**
**the charity should undertake.**| |---|---|---| ## **Achievements and performance** |Summary of the main
achievements of the charity,
identifying the difference the
charity’s work has made to
the circumstances of its
beneficiaries and any wider
benefits to society as a
whole.|Para 1.20|**During our first year, our achievements**
**have been:**
-
**Setting up the governance, risk**
**management and financial**
**infrastructure for the charity.**
-
**Successfully launched our website**
**and social media accounts**
-
**Supported over 50 patients at a**
**patient information day at UCL**
-
**Supported the development of the**
**FSHD UK Registry and promotion**
**to FSHD patients to register.**
-
**Secured funding to support our**
**activities and mission.**| |---|---|---| ## **Financial review** |**Financial review**||| |---|---|---| |Review of the charity’s
financial position at the end
of the period|Para 1.21|**Total incoming resources for the period**
**were £3,666 of which £0 was restricted for**
**expenditure on specific items of running**
**costs. Total resources expended in the**
**period were £2,562 resulting**
**in a net movement in funds of £1,104. The**
**fund balances at 5 April 2025 were £1,104**
**of which £1,104**
**was unrestricted and £0 was restricted**| |Statement explaining the
policy for holding reserves
stating why they are held|Para 1.22|**It is the policy of the charity that**
**unrestricted funds which have not been**
**designated for a specific use should**
**be maintained at a level equivalent to**
**between three and six month’s**
**expenditure. The trustees consider that**
**reserves at this level will ensure that, in**
**the event of a significant drop in funding,**
**they will be able to continue**
**the charity’s current activities while**
**consideration is given to ways in which**
**additional funds may be raised.**
**This level of reserves has been maintained**
**throughout the period.**| |Amount of reserves held|Para 1.22|**£500**| |Reasons for holding zero
reserves|Para 1.22|**N/A**| |Details of fund materially in
deficit|Para 1.24|**N/A**| |---|---|---| |Explanation of any
uncertainties about the
charity continuing as a going
concern|Para 1.23|**N/A**| |The charity’s principal
sources of funds (including
any fundraising)|Para 1.47|**The principal sources of funds during this**
**initial reporting period is unrestricted**
**grant funding from The Healey Family**
**Charitable Trust (HFCT) towards the core**
**costs of FSHD UK and from individual**
**donors. The trustees would like to**
**acknowledge and thank the HFCT and**
**donors for their critical support to enable**
**the establishment of our charity and**
**development of FSHD clinical trial**
**infrastructure and patient engagement.**| |Investment policy and
objectives including any
social investment policy
adopted|Para 1.46|**Our investment objectives are to achieve**
**growth and income. We aim to generate**
**sustainable returns that allow us to**
**achieve our charitable objectives while**
**protecting the capital value of our**
**investments.**
**We will ensure that our charity has**
**sufficient liquidity to meet our financial**
**commitments, including grants and other**
**charitable activities. We will invest in**
**liquid assets and maintain an appropriate**
**level of cash reserves to ensure that we**
**can access our money when we need it.**
**For this initial period, any interim excess**
**funds have been held in an instant access**
**savings account.**| ## **Structure, governance and management** |Description of charity’s
trusts:||**The charity was registered on 14/12/23**
**and is governed by the following**
**Trustees:**
**Ms. Rajeshri Badiani**
**Mr. Andrew Graham**
**Ms. Ruth Hereford**| |---|---|---| |Type of governing document:|Para 1.25|**The charity is governed by its**
**Constitution for the Charitable**
**Incorporated Organisation**| |How is the charity
constituted?|Para 1.25|**Charitable Incorporated Organisation**| |Trustee selection methods
including details of any
constitutional provisions e.g.
election to post or name of
any person or body entitled
to appoint one or more
trustees|Para 1.25|**New Trustees may be recruited to the**
**Board at any time by the Trustees. In**
**selecting individuals for appointment as**
**Trustees, the Trustees must have regard**
**to the skills, knowledge and experience**
**needed for the effective administration of**
**the CID. The Trustees may, by and from**
**their number and from time to time, elect**| **such officers (chair, secretary, treasurer) as they see fit.** ## **Reference and administrative details** |Charity name|**FSHD UK CHARITY**| |---|---| |Other name the charity uses|| |Registered charity number|**1206212**| |Charity’s principal address|**19 LANGLEY ROAD, LONDON SW19 3NZ**| **Names of the charity trustees who manage the charity** |1
2
3
4|**Trustee name**|**Office (if any)**|**Dates acted if not for whole**
**year**|**Name of person (or body) entitled**
**to appoint trustee (if any)**| |---|---|---|---|---| ||RAJESHRI
BADIANI|CHAIR||| ||ANDREW
GRAHAM|SECRETARY||| ||RUTH HEREFORD|TREASURER||| |||||| ## **Declarations** **The company has taken advantage of the small companies’ exemption in preparing the report above.** **The trustees declare that they have approved the trustees’ report (including directors’ report) above.** **Signed on behalf of the charity’s trustees/directors** **----- Start of picture text -----**
Signature(s)
RAJESHRI BADIANI
Full name(s)
Position Chair
Date
2/2/2026
**----- End of picture text -----**
|**FSHD**|**UK CHARITY**|||**1206212**||| |---|---|---|---|---|---|---| ||**Receipts andpayments accounts**|||||**CC16a**| |**For**|**the period**
**from**|14/12/2023|**To**|05/04/2025||| |**Section A Receipts and payments**|**Section A Receipts and payments**|**Section A Receipts and payments**|||||||| |---|---|---|---|---|---|---|---|---|---| |**A1 Receipts**|**Unrestricted**
**funds**
**to the nearest £**||**Restricted**
**funds**
**to the nearest £**||**Endowment**
**funds**
**to the nearest £**||**Total funds**
**to the nearest £**||**Last year**
**to the nearest £**| |
Donations|**644**||**-**||**-**||**644**||**-**| |Grants|**3,000**||**-**||**-**||**3,000**||**-**| ||**-**||**-**||**-**||**-**||**-**| ||**-**||**-**||**-**||**-**||**-**| ||**-**||**-**||**-**||**-**||**-**| ||**-**||**-**||**-**||**-**||**-**| ||**-**||**-**||**-**||**-**||**-**| ||**-**||**-**||**-**||**-**||**-**| |**_Sub total_**_(Gross income for AR)_|**3,644**||**-**||**-**||**3,644**||**-**| ||||||||||| |**A2 Asset and investment sales,**
**(see table).**|||||||||| |
**Interest income**|**22**||||||||| ||**-**||||||||**-**| |**_Sub total_**|**22**||||||||**-**| |**_Total receipts_**
**A3 Payments**|||||||||| ||||||||||**-**| ||||||||||| |
Patient engagement events|**549**||**-**||**-**||**549**||**-**| |Insurance|**561**||**-**||**-**||**561**||**-**| |IT and wesbite expenses|**1,038**||**-**||**-**||**1,038**||**-**| |Memberships|**86**||**-**||**-**||**86**||**-**| |Printingand Stationery|**18**||**-**||**-**||**18**||**-**| |Consultant expense|**310**||**-**||**-**||**310**||**-**| ||**-**||**-**||**-**||**-**||**-**| ||**-**||**-**||**-**||**-**||**-**| ||**-**||**-**||**-**||**-**||**-**| |**_Sub total_ **|**2,562**||**-**||**-**||**2,562**||**-**| ||||||||||| |**A4 Asset and investment**
**purchases, (see table)**|||||||||| ||**-**||||||||| ||**-**||||||||| |**_Sub total_ **|**-**||||||||**-**| |**_Total payments_**
**_Net of receipts/(payments)_**
**A5 Transfers between funds**
**A6 Cash funds last year end**
**_Cash funds this year end_**|||||||||| ||||||||||**-**| ||||||||||| ||**1,104**||||||||**-**| ||**-**||||||||**-**| ||**-**||||||||**-**| ||**1,104**||||||||**-**| R&P Accounts Page 1 |**Section B Statement of assets and liabilities at the end of the**|**Section B Statement of assets and liabilities at the end of the**|**Section B Statement of assets and liabilities at the end of the**|**Section B Statement of assets and liabilities at the end of the**|**Section B Statement of assets and liabilities at the end of the**|**period**|**period**|| |---|---|---|---|---|---|---|---| |**Categories**
Signed by one or two trustees on
behalf of all the trustees
**B5 Liabilities**
**B3 Investment assets**
**B2 Other monetary assets**
**B4 Assets retained for the**
**charity’s own use**
**B1 Cash funds**|**Details**
**_Total cash funds_**
(agree balances with receipts and payments
account(s))
Checking
Savings
**Details**||**Unrestricted**
**funds**
**to nearest £**
**565**
**539**
**-**
**1,104**
OK
**Unrestricted**
**funds**
**to nearest £**||**Restricted**
**funds**
**to nearest £**
**-**
**-**
**-**
**-**
OK
**Restricted**
**funds**
**to nearest £**||**Endowment**
**funds**
**to nearest £**| ||||||||**-**| ||||||||**-**| ||||||||**-**| ||||||||**-**| ||||||||OK| ||||||||**Endowment**
**funds**
**to nearest £**| ||||**-**||**-**||**-**| ||||**-**||**-**||**-**| ||**Details**||**Fund to which**
**asset belongs**||**Cost (optional)**||**Current value**
**(optional)**| ||||||**-**||**-**| ||||||**-**||**-**| ||**Details**||**Fund to which**
**asset belongs**||**Cost (optional)**||**Current value**
**(optional)**| ||||||**-**||**-**| ||||||**-**||**-**| ||||||**-**||**-**| ||**Details**
Signature||**Fund to which**
**liability relates**
Print||||**When due**
**(optional)**| ||||||||| ||||||||| ||||||||| ||||||||Date of
approval| ||||Ruth Hereford||||02/02/2026| ||||||||| R&P Accounts Page 2