OpenCharities

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

← Leber's Hereditary Optic Neuropathy Society

2025-05-31-accounts

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. 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:

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:

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

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

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
~~ee ~~		 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