## **Trustees' Annual Report for the period**
Period start date Period end date Day Month Year Day Month Year **From** 01 06 2024 **To** 31 05 2025
Section A Reference and administration details
**Charity name** Leber’s Hereditary Optic Neuropathy Society
**Other names charity is known by** LHON Society
|**Trustee name**|**Office (if any)**|**Dates acted if not for whole**
**year **|**Name of person (or body) entitled**
**to appoint trustee (ifany)**|
|---|---|---|---|
|Diane Louise
Watson||||
|Russell Wheeler||||
|James Ferguson||Until 30 April 2025||
|Charlotte McMillan||||
|Andrew Mumford||Until 24 February2025||
|6||||
|7||||
|8||||
|9||||
|10||||
|11||||
|12||||
|13||||
|14||||
|15||||
|16||||
|17||||
|18||||
|19||||
|20
~~=~~|~~=~~|~~=~~|~~=~~|
March **2026**
**TAR**
1
## **Names and addresses of advisers (Optional information)**
|**Names and addresses of advisers (Optional information)**|**Names and addresses of advisers (Optional information)**|**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**
Constitution, dated 16 Jan 2017 Type of governing document
(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. trust, association, company)
(eg. appointed by, elected by)
## **Additional governance issues (Optional information)**
At a trustees meeting on 11 March 2025 the draft wording of a conflict of You **may choose** to include interest party was agreed and, subject to final ratification, a copy will be additional information, where posted to the society’s website as soon as is practicable. 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. Facilitate research into understanding and seeking ways of preventing and ultimately reversing sight loss in LHON affected patients.
March **2026**
**TAR**
2
**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)**
You **may choose** to include further statements, where relevant, about:
- policy on grantmaking;
- policy programme related investment;
- contribution made by volunteers.
March **2026**
**TAR**
3
Section D Achievements and performance
**Summary of the main achievements of the charity during the year**
The society once again hosted a patient and family day in July 2024, this time in Manchester, following previous similar events in the past in London, Cambridge and Birmingham. The society’s policy is wherever possible to widen access to our activities and events to as large a geographic area as possible, within the resources available to us.
In the previous year we received funding from the National Lottery Community Fund which allowed us to mount a number of smaller outreach events in several regions of England and Wales, the last of these being held in June 2024 in Cambridge.
Unfortunately this year we did not receive either grant monies or the corporate sponsorship we had hoped for to support these activities and as a result the patient day in July was funded entirely from society funds, supplemented by receipts from ticket sales and contributions towards accommodation costs. This led to a substantial outflow of funds during the year, which all trustees agreed was a legitimate use of donated funds and in line with our society objectives. Hopefully we will return to our normal pattern for funding events in the future, or if that proves impossible then we will consider ways to reduce the cost of events without restricting access.
During the year under review the society made representations to NICE assessment panels, which were reviewing access to Raxone in England (it has been approved some years now in Scotland, Wales and Northern Ireland). At the time of the year end those representations were still ongoing after two applications had been rejected, but we are pleased to report that in August 2025 (ie after the end date of this report) Raxone was finally approved for prescription in England, some 10 years after its approval by the European Medicines Agency. Thanks to all those involved in this great effort on behalf of the LHON community in England.
The year has been one of considerable change for the society, with two trustees stepping down during the period, including co-founder and chairman James Ferguson, after 11 years’ service and we would like to record our thanks and appreciation to James for all he has done on behalf of those affected by LHON in the UK over that time.
The remaining trustees are currently conducting a full review of the society’s activities following these changes and we aim to provide an update and report on this at our next AGM in July (exact date to be confirmed).
March **2026**
**TAR**
4
## **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)**
Financial Report as of 1/6/2025 You **may choose** to include additional information, where Opening balance brought forward: £38,705.94 relevant about: the charity’s principal Income during the year: £2,264.96 sources of funds (including any fundraising); Expenditure: £15,724.40
- how expenditure has Closing balance: £25,243.50
- 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)**
||**s trustees**||
|---|---|---|
||||
|**Full name(s)**
**Position (eg Secretary, Chair,**
**etc)**
**Date**|Charlotte Macmillan|Russell Wheeler|
||
Trustee|Trustee|
||30 March 2026||
||30 March 2026||
March **2026**
**TAR**
5
||||**Charity Name**|||||**No (if any)**|**No (if any)**||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|
||||**Leber's Hereditary Optic Neuropathy Society**|||||**1157206**|||||
||||**Receipts andpayments accounts**||||||||**CC16a**||
|||**For the period**
**from**
~~**e**e ~~|||Period start date
Period end date
**To**
01/06/2024
31/05/2025
~~eeee~~||||||||
||**Section A Receipts and payments**|**Section A Receipts and payments**|||||||||||
||||**Unrestricted**
**funds**||**Restricted**
**funds**||**Endowment**
**funds**||**Total funds**||**Last year**||
||||**to the nearest £**||**to the nearest £**||**to the nearest £**||**to the nearest £**||**to the nearest £**||
||**A1 Receipts**||||||||||||
||Donations and interest||**357**||**-**||**-**||**357**||**11,062**||
||Patient Dayreceipts||**1,874**||**-**||**-**||**1,874**||**-**||
||||**-**||**-**||**-**||**-**||**-**||
||||**-**||**-**||**-**||**-**||**-**||
||||**-**||**-**||**-**||**-**||**-**||
||||**-**||**-**||**-**||**-**||**-**||
||||**-**||**-**||**-**||**-**||**-**||
||||**-**||**-**||**-**||**-**||**-**||
||**_Sub total_**_(Gross income for_||_(Gross income for_||||||||||
|||_AR)_|_AR)_**2,231**||**-**||**-**||**2,231**||**11,062**||
|**A2 Asset and investment sales,**
**(see table).**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**_Sub total_ -**
**-**
**-**
**-**
**-**
**_Total receipts_**
**2,231**
**-**
**-**
**2,231**
**11,062**
~~=———~~|||||||||||||
||**A3 Payments**||||||||||||
||Bank fees(net)||**32**||**-**||**-**||**32**||**74**||
||Conference attendance||**-**||**-**||**-**||**-**||**617**||
||Insurance||**-**||**-**||**-**||**-**||**115**||
||Mailchimp||**146**||**-**||**-**||**146**||**177**||
||Outreach programme||**-**||**-**||**-**||**-**||**1,156**||
||Patient daycosts||**14,270**||**-**||**-**||**14,270**||**28**||
||Website expenses||**1,195**||**-**||**-**||**1,195**||**749**||
||Subscriptions||**50**||**-**||**-**||**50**||**-**||
||||**-**||**-**||**-**||**-**||**-**||
||**_Sub total_ **||**15,693**||**-**||**-**||**15,693**||**2,916**||
|**A4 Asset and investment**
**purchases, (see table)**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**_Sub total_ -**
**-**
**-**
**-**
**-**
**_Total payments_**
**15,693**
**-**
**-**
**15,693**
**2,916**
~~———=———~~|||||||||||||
||**_Net of receipts/(payments)_**
**- 13,462**
**-**
**- - 13,462**
**8,146**
**A5 Transfers between funds**
**-**
**- -**
**-**
**-**
**A6 Cash funds last year end**
**38,706**
**- -**
**38,706**
**30,584**
**_Cash funds this year end_**
**25,244**
**-**
**- 25,244**
**38,730**
~~——=S==>=>~~||||||||||||
CCXX R1 accounts (SS)
28/03/2026
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**
**B3 Investment assets**
**B2 Other monetary assets**
**B4 Assets retained for the**
**charity’s own use**
**B1 Cash funds**|**Details**
**Details**
**_Total cash funds_**
(agree balances with receipts and payments
account(s))
Bank Balance CAF Bank
**Details**
**Details**
**Details**
Signature|**Unrestricted**
**funds**
**Restricted**
**funds**
**to nearest £**
**to nearest £**
**25,244**
**-**
**-**
**-**
**-**
**-**
**25,244**
**-**
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)**
**-**
**-**
**-**
**-**
**-**
Print Name
Charlotte Macmillan
Russell Wheeler|**Endowment**
**funds**
**to nearest £**|
||||**-**|
||||**-**|
||||**-**|
||||**-**|
||||OK|
||||**Endowment**
**funds**
**to nearest £**|
||||**-**|
||||**-**|
||||**-**|
||||**-**|
||||**-**|
||||**-**|
||||**Current value**
**(optional)**|
||||**-**|
||||**-**|
||||**-**|
||||**-**|
||||**-**|
||||**Current value**
**(optional)**|
||||**-**|
||||**-**|
||||**-**|
||||**-**|
||||**-**|
||||**-**|
||||**-**|
||||**-**|
||||**-**|
||||**When due**
**(optional)**|
|||||
|||||
|||||
|||||
|||||
|||||
||||Date of
approval|
|||Charlotte Macmillan|30th March 2026|
|||Russell Wheeler|30th March 2026|
CCXX R2 accounts (SS)
28/03/2026
2