2022-10-26-accounts - Lipodystrophy UK

This text was generated using OCR and may contain errors. Check the original PDF to see the document submitted to the regulator.

Trustees’ Annual Report for the period

From 31 Oct 2021 Period start date To 30 Oct 2022 Period end date

Charity name: Lipodystrophy UK

Charity registration number: 1175462

Objectives and Activities

	SORP reference
Summary of the purposes of the charity as set out in its governing document	Para 1.17	The objects of the CIO are: i. To raise awareness of Lipodystrophy conditions, both within the medical profession and the general public; ii. To provide information and support to people with Lipodystrophy and those affected by it; iii. To advocate for excellent care and improved treatment options for people with Lipodystrophy; To encourage research addressing the concerns of people with Lipodystrophy
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	- Patient pathways survey for patients and formal presentation of findings - Patient support activities online - Raising awareness (World Lipodystrophy Day, conferences, publications, social media, focus groups) - Developed a ‘Charity Strategic Plan’ - Fatigue project with PLRH started recruiting patients - New website launched
Statement confirming whether the trustees have had regard to the guidance issued by the Charity Commission on public benefit	Para 1.18	All trustees have had regard to the Charity Commission’s guidance on public benefit.

Additional information (optional)

You may choose to include further statements where relevant about:

	SORP reference
Policy on grant making	Para 1.38	Lipodystrophy UK does not have a policy on grant making, since we don’t currently offer grants
Policy on social investment	Para 1.38	Lipodystrophy UK does not have a policy on social investment

including program related investment
Contribution made by volunteers	Para 1.38	Lipodystrophy UK does not have a policy on contributions made by volunteers
Other

Achievements and Performance

	SORP reference
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	1) Ongoing virtual support for community through COVID - live chats, community check-ins, etc. 2) Ongoing awareness activities – World Lipodystrophy Day. Applying for funding to organise a Patient Support Day for WLD 2023 3) Patient Pathways survey launched for patients. Data combined with Clinician data and findings formally presented at the annual ECLip conference 4) New website launched. PO Box set up. 5) Fatigue project (in collaboration with the Patient Lead Research Hub, PLRH, and Addenbrookes Hospital): LiFE study focus group conducted and REC approval received. Patient interviews started 6) FaceBook charity donations/fundraising set up 7) Collaboration with Physicians and Pharma on development of a ‘Lipodystrophy scoring tool’ for clinicians 8) Chair gave several awareness talks at different conferences and participated in focus groups with stakeholders 9) Ongoing relationship with National Centre of Excellence in Lipodystrophy (Addenbrookes Hospital) 10) Ongoing patient representative on ECLip Board (re-elected) 11) Ongoing relationship with the Centre of Appearance Research (CAR) 12) Note: several activities delayed/postponed due to COVID

Additional information (optional) You may choose to include further statements where relevant about: Ongoing objectives to 1) raise awareness of Lipodystrophy conditions; 2) provide

Achievements against objectives set	Para 1.41	information and support to people affected by Lipodystrophy; advocate for excellent care and improved treatment options; encourage research addressing the concerns of people with Lipodystrophy
Performance of fundraising activities against objectives set	Para 1.41	N/A
Investment performance against objectives	Para 1.41	N/A
Other

Financial Review

Financial Review
Review of the charity’s financial position at the end of the period	Para 1.21	Low fundraising income, although sufficient to cover charity expenditure
Statement explaining the policy for holding reserves stating why they are held	Para 1.22	Lipodystrophy UK does not have a reserves policy
Amount of reserves held	Para 1.22	N/A
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

Additional information (optional) You may choose to include further statements where relevant about:	Additional information (optional) You may choose to include further statements where relevant about:	Additional information (optional) You may choose to include further statements where relevant about:
The charity’s principal sources of funds (including any fundraising)	Para 1.47	Funds exclusively from fundraising activities
Investment policy and objectives including any social investment policy adopted	Para 1.46	Lipodystrophy UK does not have an investments policy
A description of the principal risks facing the charity	Para 1.46	More fundraising activities will be needed to fund more ambitious projects in the future. Actively recruiting a volunteer Fundraising Officer (although little interest in the role so far).
Other

Structure, Governance and Management

Description of charity’s trusts:
Type of governing document (trust deed, royal charter)	Para 1.25	Constitution
How is the charity constituted? (e.g unincorporated association, CIO)	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	Apart from the first charity trustees, every trustee must be appointed by a resolution passed at a properly convened meeting of the charity trustees

Additional information (optional)

You may choose to include further statements where relevant about:

Policies and procedures adopted for the induction and training of trustees	Para 1.51	N/A
The charity’s organisational structure and any wider network with which the charity works	Para 1.51	N/A
Relationship with any related parties	Para 1.51	Working in partnership with The Centre for Appearance Research (CAR) as a member of the Appearance Collective (AC) - supporting people living with visible differences.
Other

Reference and Administrative details

Charity name	Lipodystrophy UK
Other name the charity uses	LDUK-although almost phased out
Registered charity number	1175462
Charity’s principal address	29 Collington Way, Kingston Bagpuize, Abingdon OX13 5GP

Names of the charity trustees who manage the charity

Trustee name	Office (if any)	Dates acted if not for whole year	Name of person (or body) entitled to appoint trustee (ifany)
Rebecca Sanders	Chair	N/A	Rebecca Sanders(Founder)
Rachel Sanders	Treasurer	N/A	Rebecca Sanders(Founder)
BeckySmith	N/A	N/A	Board majorityvote
Siobhan Dunn	N/A	N/A	Board majorityvote
Claire Adams	N/A	N/A	Board majorityvote

– Corporate trustees names of the directors at the date the report was approved Director name N/A

Name of trustees holding title to property belonging to the charity

Trustee name	Dates acted if not for whole year
N/A

Funds held as custodian trustees on behalf of others

Description of the assets N/A held in this capacity Name and objects of the N/A charity on whose behalf the assets are held and how this falls within the custodian charity’s objects Details of arrangements for N/A safe custody and segregation of such assets from the charity’s own assets

Additional information (optional)

Names and addresses of advisers (Optional information)

Type of adviser	Name Address	Name Address
N/A

Name of chief executive or names of senior staff members (Optional information)

N/A

Exemptions from disclosure

Reason for non-disclosure of key personnel details

N/A

Other optional information

Declarations

The trustees declare that they have approved the trustees’ report above.

Signed on behalf of the charity’s trustees

Signature(s)

Full name(s) Rebecca Sanders

Position (eg Secretary, Chair Chair, etc)

Date

31/08/2023

	Lipodystrophy UK	Lipodystrophy UK	Lipodystrophy UK	Lipodystrophy UK	CC16a
	For the period from	Period start date Oct-21	To

Section A Receipts and payments
A1 Receipts Donations 918 - - - - - - - 918 - - Sub total - Total receipts 918 A3 Payments Insurance 169 Invoices 1,318 - - - - - - - Sub total 1,487 - - Sub total - Total payments 1,487 Net of receipts/(payments) - 569 A5 Transfers between funds - A6 Cash funds last year end 7,387 Cash funds this year end 6,818 Unrestricted funds to the nearest £ *Sub total*(Gross income for AR) A2 Asset and investment sales, (see table). A4 Asset and investment purchases, (see table)		to the nearest £ Restricted funds	to the nearest £ Endowment funds	Total funds to the nearest £	Last year to the nearest £
		- - - - - - - - -	- - - - - - - - -	918 - - - - - - - 918	-
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		- - - - - - - - - -	- - - - - - - - - -	169 1,318 - - - - - - - 1,487	-
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		- - - -	- - - -	- 569 - 7,387 6,818	-
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Section B Statement of assets and liabilities at the end of the period

Categories B1 Cash funds B2 Other monetary assets B3 Investment assets B5 Liabilities B4 Assets retained for the charity’s own use Signed by one or two trustees on behalf of all the trustees	Details Bank account Details Details Details Details Signature *Total cash funds* (agree balances with receipts and payments account(s))	to nearest £ to nearest £ 6,818 - - - - - 6,818 - OK OK to nearest £ to nearest £ - - - - - - - - - - - - Cost (optional) - - - - - Cost (optional) - - - - - - - - - - - - - - Print Name REBECCA SANDERS Unrestricted funds Restricted funds Unrestricted funds Restricted funds Fund to which asset belongs Fund to which asset belongs Fund to which liability relates Amount due (optional)	to nearest £ Endowment funds
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			Date of approval
		REBECCA SANDERS	8/31/2023