**To**
## **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**
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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||
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## **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**
1
|**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**|
|---|---|---|
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## **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**
2
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**
3
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**
4
## 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**
5
## **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**
6
**----- 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
1
|**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
2