2023-05-31-accounts - Leber's Hereditary Optic Neuropathy Society

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

Period start date Period end date 01 06 2022 31 05 2023

From

Section A Reference and administration details

Charity name Leber’s Hereditary Optic Neuropathy Society Other names charity is known by LHON Society Registered charity number (if any) 1157206

Charity's principal address The Hayloft, Pury Hill Business Park, Alderton Northamptonshire Postcode NN12 7LS

Names of the charity trustees who manage the charity

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20	Trustee name	Office (if any)	Dates acted if not for whole year	Name of person (or body) entitled to appoint trustee (ifany)
	Mark Leverington
	Russell Wheeler
	James Ferguson
	Charlotte McMillan
	Andrew Mumford		From 18thApril 2023

Names of the trustees for the charity, if any, (for example, any custodian trustees)

Name Dates acted if not for whole year

TAR

March 2012

Names and addresses of advisers (Optional information) Type of adviser Name Address	Names and addresses of advisers (Optional information) Type of adviser Name Address	Names and addresses of advisers (Optional information) Type of adviser Name Address

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

Section B Structure, governance and management

Description of the charity’s trusts

Type of governing document

Constitution, dated 16 Jan 2017

(eg. trust deed, constitution)

Charitable Incorporated Organisation – registered 28 May 2014 How the charity is constituted (eg. trust, association, company) By existing trustees. Minimum of three, maximum of twelve trustees Trustee selection methods

(eg. appointed by, elected by)

Additional governance issues (Optional information)

You may choose to include additional information, where relevant, about:

policies and procedures adopted for the induction and training of trustees;
the charity’s organisational structure and any wider network with which the charity works;
relationship with any related parties;
trustees’ consideration of major risks and the system and procedures to manage them.

Section C Objectives and activities

Our aims:

To provide support and information to those impacted by LHON; patients, their family, friends and healthcare providers.

Summary of the objects of the Provide guidance and representation on issues that affect the LHON charity set out in its community. governing document

Promote up-to-date knowledge and understanding of LHON in the welfare, medical and scientific communities.

TAR

March 2012

Facilitate research into understanding and seeking ways of preventing and ultimately reversing sight loss in LHON affected patients.

Summary of the main activities undertaken for the public benefit in relation to these objects (include within this section the statutory declaration that trustees have had regard to the guidance issued by the Charity Commission on public benefit)

Additional details of objectives and activities (Optional information)

TAR

March 2012

You may choose to include further statements, where relevant, about:

policy on grantmaking;
policy programme related investment;
contribution made by volunteers.

Section D Achievements and performance

TAR

March 2012

Section D Achievements and erformance p

June 2022 to May 2023 Summary of the main achievements of the charity Patient Day 2022 during the year On the 8th of October 2022, we held a Patient & Family Engagement Event in Birmingham, drawing an audience of 40 individuals. The event featured insightful speakers, including those directly impacted by LHON, discussions on market access, an overview of qualitative research projects for LHON, and an update on gene therapy and treatment strategies for the condition. Notably, sessions from the event were recorded and are now accessible on our website, serving as a valuable resource for further reference and dissemination of knowledge. Outreach programme We used funding from the National Lottery’s Community Fund to host five regional events in 2023. Our aim was to build stronger links within the LHON community by facilitating a series of social afternoons. These are the details from the events; York; Saturday 28th January 2023. We had lunch at Pizza Express and then visited the Jorvik Viking Centre, eighteen people attended Wolverhampton, Saturday 22nd April 2023. Seven of us enjoyed lunch at The Bluebrick pub and restaurant. Cambridge, Saturday 24th June 2023, five people had lunch at Chill2 Cafe Manchester, 1st July 2023. Twelve enjoyed lunch at the Cosy Club in Manchester Cardiff, 11th November 2023, ten of us had lunch at the Cosy Club in Cardiff. The LHON Society covered the cost of each event. Advocacy As reported in last year's TAR the society engaged as stakeholders with NICE’s early scoping work in readiness for the technology appraisal of Lumevoq®, the gene therapy developed by French company Gensight for the treatment of the ND4 (11778) mutation of LHON. This appraisal was expected to take place after the treatment had been approved by the European Medicines Agency (EMA) and whilst the MHRA were in a mutual recognition procedure as selected by the company as the route for marketing authorisation in the United Kingdom. Unfortunately, however, in April 2023 the company met with EMA and following that meeting, they elected to withdraw their application for marketing authorisation. Given the company’s decision to withdraw it’s marketing authorisation application, NICE confirmed that the appraisal had been suspended pending termination. It is unknown if this product will be made available in the United Kingdom at any time soon.

TAR

March 2012

Section E Financial review

Considering its relatively low levels of income and Brief statement of the expenditure (see below), the trustees do not require any charity’s policy on reserves reserves to be held by the charity

Details of any funds materially in deficit

None

Further financial review details (Optional information)

You may choose to include additional information, where relevant about:

the charity’s principal sources of funds (including any fundraising);

Financial Report as of 1/6/2023

Opening balance brought forward: £31,940

Income during the year: £4,247

Expenditure: £13,826

how expenditure has Closing balance: £30,583
supported the key objectives of the charity;
investment policy and objectives including any ethical investment policy adopted.

Section F Other optional information

Section G Declaration

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

Signed on behalf of the charity’s trustees

Signature(s)

Full name(s) Joanne Mumford

Position (eg Secretary, Chair, Secretary etc)

Date 28th March 2024

TAR

March 2012

----- Start of picture text -----
Charity Name No (if any)
Leber's Hereditary Optic Neuropathy Society 1157206
Receipts and payments accounts CC16a
For the period Period start date Period end date
To
from 01/06/2022 31/05/2023
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 and interest 4,247 - 4,247 3,448
- - - - -
- - - - 5,000
- - - - -
- - - - -
- - - - -
- - - - -
- - - - -
Sub total (Gross income for
AR) [ 4,247 ] - - 4,247 8,448
A2 Asset and investment sales,
(see table).
- - - -
- - - - -
Sub total - - - - -
Total receipts 4,247 - - 4,247 8,448
A3 Payments
Patient day 11,777 - - 11,777 102
Bank fees 61 - - 61 -
Website expenses 1,038 - - 1,038 -
Outreach programme 195 - - 195 50
Other conference attendance 756 - - 756 -
- - - - -
- - - - -
- - - - -
- - - - -
Sub total [ 13,827 ] - - 13,827 152
A4 Asset and investment
purchases, (see table)
- - - -
- - - -
Sub total [ - ] - - - -
Total payments 13,827 - - 13,827 152
Net of receipts/(payments) - 9,579 - - - 9,579 8,296
A5 Transfers between funds - - - - -
A6 Cash funds last year end 28,519 13,000 - 41,519 985
Cash funds this year end 18,940 13,000 - 31,940 9,281
----- End of picture text -----

CCXX R1 accounts (SS)

28/03/2024

Section B Statement of assets and liabilities at	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 B4 Assets retained for the charity’s own use B5 Liabilities B3 Investment assets	Signature Details Details *Total cash funds* (agree balances with receipts and payments account(s)) Details Details Details	Unrestricted funds Restricted funds to nearest £ to nearest £ - - - - - - 31,940 Agreement Error Agreement Error 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) - - - - - Print Name Joanne Mumford	Endowment funds to nearest £ - - -
			-
			OK
			Endowment funds to nearest £ - - - - - - Current value (optional) - - - - - Current value (optional) - - - - - - - - - When due (optional) Date of approval 28th March 2024

CCXX R2 accounts (SS)

28/03/2024