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Trustees’ Annual Report
for the period
From (start date) 0 D 1 D 1 0 M 6 M 2 Y 1 Y to (end date) 3 D 1 D 0 M 5 M 2 Y 2 Y
Section A Reference and administration details
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|||||||||||||||||||||||||| |---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---| ||||Charity name|Leber’s Hereditary||||||||Optic NeuropathySociety||||||||||||| |||||||||||||||||||||||||| |||Other names the charity is known by||LHON Society||||||||||||||||||||| |||||||||||||||||||||||||| |||Registered charity number (if any)||1||1|5|7||2|0|6||||||||||||| |||||||||||||||||||||||||| |||Charity’s principal address||8|Hill Lane|||||||||||||||||||| |||||Hockley||||||||||||||||||||| |||||Essex||||||||||||||||||||| |||||||||||||||Postcode|S||S|5|4|H|L|||| |||Names of the charity trustees who manage the charity||||||||||||||||||||||| |||**Trustee Name**||||**Offce**||**(if**|**any)**|||||**Dates acted if not for**
**whole year**||**Name of person (or body)**
**entitled to appoint**
**trustee(if any)**||||||||| |1||Mark Leverington||||||||||||||||||||||| |2||Russell Wheeler||||||||||||||||||||||| |3||James Ferguson||||||||||||||||||||||| |4||Charlotte McMillan||||||||||||||||||||||| |5||||||||||||||||||||||||| |6||||||||||||||||||||||||| |7||||||||||||||||||||||||| |8||||||||||||||||||||||||| |9||||||||||||||||||||||||| |10||||||||||||||||||||||||| |11||||||||||||||||||||||||| |12||||||||||||||||||||||||| |13||||||||||||||||||||||||| |14||||||||||||||||||||||||| |15||||||||||||||||||||||||| |16||||||||||||||||||||||||| |17||||||||||||||||||||||||| |18||||||||||||||||||||||||| |19||||||||||||||||||||||||| |20||||||||||||||||||||||||| ||Names of the trustees for the||charity, if any(for example, any|||||custodian trustees)||||||||||||||||| ||||**Name**|||||||||||**Dates acted if not for whole year**||||||||||| |||||||||||||||||||||||||| |||||||||||||||||||||||||| |||||||||||||||||||||||||| |||||||||||||||||||||||||| **March 2012** **TAR** 1 **Reference and administration details (continued)** **Section A** 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 (eg trust deed, constitution Constitution, dated 16 Jan 2017 How the charity is constituted Charitable Incorporated Organisation – registered 28 May 2014 (eg trust, association, company) Trustee selection methods By existing trustees. Minimum of three, maximum of twelve trustees (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.|The society is a full and active member of EURORDIS, a
non-governmental patient-driven alliance of patient
organisations representing 724 rare disease patient
organisations in 64 countries covering over 4000 diseases
(www.eurordis.org). Through this membership the society
aims to be kept informed of policy changes and
developments throughout Europe which affect rare disease
patients and in conjunction with EURORDIS to influence
those policies wherever possible for the benefit of our
members and rare disease patients in general.
The society continues to hold discussions with other LHON
patient representatives from other countries in Europe, with a
view to establishing more formal links between us in order to
collaborate on research and understanding of the disease.
The society continues to participate in the European
Reference Network for rare eye diseases (“ERN-EYE”) a
European Union initiative which brings together leading
specialists from 28 different specialist ophthalmic centres
from 13 different member states in order to collaborate on
research and treatment of rare eye diseases.| |---|---| **March 2012** **TAR** 2 **Objectives and activities** ## **Section C** |Summary of the objects of the charity set
out in its governing document|1. To relieve the charitable needs of people affected by
LHON, their families and carers by the provision of support,
advocacy, advice and information
2. To carry out, or to provide funds to support, research in all
aspects of LHON: its causes, treatment and cure. To publish
the useful results of such research| |---|---| ||| |Summary of the main activities
undertaken for the public beneft 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 beneft)|We are a self-help support group for families affected by
LHON across the British Isles. Through our membership we
aim to identify as many affected families as possible and
build a register of people willing to take part in medical
research. We provide up-to-date information on LHON and
current research topics.| |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.|| |**Section C**
**Objectives and activities**
Summary of the objects of the charity set
out in its governing document
Summary of the main activities
undertaken for the public beneft 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 beneft)
Additional details of objectives and activities (optional information)
1. To relieve the charitable needs of people affected by
LHON, their families and carers by the provision of support,
advocacy, advice and information
2. To carry out, or to provide funds to support, research in all
aspects of LHON: its causes, treatment and cure. To publish
the useful results of such research
We are a self-help support group for families affected by
LHON across the British Isles. Through our membership we
aim to identify as many affected families as possible and
build a register of people willing to take part in medical
research. We provide up-to-date information on LHON and
current research topics.|**Section C**
**Objectives and activities**
Summary of the objects of the charity set
out in its governing document
Summary of the main activities
undertaken for the public beneft 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 beneft)
Additional details of objectives and activities (optional information)
1. To relieve the charitable needs of people affected by
LHON, their families and carers by the provision of support,
advocacy, advice and information
2. To carry out, or to provide funds to support, research in all
aspects of LHON: its causes, treatment and cure. To publish
the useful results of such research
We are a self-help support group for families affected by
LHON across the British Isles. Through our membership we
aim to identify as many affected families as possible and
build a register of people willing to take part in medical
research. We provide up-to-date information on LHON and
current research topics.|**Section C**
**Objectives and activities**
Summary of the objects of the charity set
out in its governing document
Summary of the main activities
undertaken for the public beneft 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 beneft)
Additional details of objectives and activities (optional information)
1. To relieve the charitable needs of people affected by
LHON, their families and carers by the provision of support,
advocacy, advice and information
2. To carry out, or to provide funds to support, research in all
aspects of LHON: its causes, treatment and cure. To publish
the useful results of such research
We are a self-help support group for families affected by
LHON across the British Isles. Through our membership we
aim to identify as many affected families as possible and
build a register of people willing to take part in medical
research. We provide up-to-date information on LHON and
current research topics.|**Section C**
**Objectives and activities**
Summary of the objects of the charity set
out in its governing document
Summary of the main activities
undertaken for the public beneft 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 beneft)
Additional details of objectives and activities (optional information)
1. To relieve the charitable needs of people affected by
LHON, their families and carers by the provision of support,
advocacy, advice and information
2. To carry out, or to provide funds to support, research in all
aspects of LHON: its causes, treatment and cure. To publish
the useful results of such research
We are a self-help support group for families affected by
LHON across the British Isles. Through our membership we
aim to identify as many affected families as possible and
build a register of people willing to take part in medical
research. We provide up-to-date information on LHON and
current research topics.| |---|---|---|---| ||Summary of the objects of the charity set
out in its governing document
Summary of the main activities
undertaken for the public beneft 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 beneft)
Additional details of objectives and activities (optional information)
1. To relieve the charitable needs of people affected by
LHON, their families and carers by the provision of support,
advocacy, advice and information
2. To carry out, or to provide funds to support, research in all
aspects of LHON: its causes, treatment and cure. To publish
the useful results of such research
We are a self-help support group for families affected by
LHON across the British Isles. Through our membership we
aim to identify as many affected families as possible and
build a register of people willing to take part in medical
research. We provide up-to-date information on LHON and
current research topics.|1. To relieve the charitable needs of people affected by
LHON, their families and carers by the provision of support,
advocacy, advice and information
2. To carry out, or to provide funds to support, research in all
aspects of LHON: its causes, treatment and cure. To publish
the useful results of such research|| ||||| |||We are a self-help support group for families affected by
LHON across the British Isles. Through our membership we
aim to identify as many affected families as possible and
build a register of people willing to take part in medical
research. We provide up-to-date information on LHON and
current research topics.|| |You**may choose**to include further
statements, where relevant, about:
• policy on grantmaking;
• policy programme related investment;
• contribution made by volunteers.|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**|| |Summary of the main achievements of the
charity during the year||The year from May 2020-21 took in the most difficult period of the pandemic and the
majority of the society’s plans and activities were curtailed during that time. We returned
to face to face meetings with a patient day held in Birmingham in October 2022, which
will be reported on in next year’s report. However a substantial amount of time was
spent planning for this during the year under review and sponsorship monies for hosting
the event was received in the amount of £5,000 each from corporate sponsors Chiesi
and Gensight, for which we are very grateful. The purpose of our events is to inform our
membership of important developments in research and to help them to find ways of
supporting each other, especially those new members for whom this is a strange and
traumatic event in their lives.
This last year we were successful in bidding for a National Lottery grant to fund an
outreach programme to support our membership. The majority of the grant will fund a
series of events up and down the country so that those members who find it difficult to
attend an event held centrally have more opportunity for a local meeting.
Raxone is the only approved therapy for treatment of LHON and has been available in
Scotland since early 2017 and in Wales since early 2021 but has been rejected by NHS
England for reimbursement on prescription in England. The active ingredient, Idebenone,
is, however, readily available over the counter (“OTC”) in the USA and in several other
countries, leaving many patients in England to effectively “self-medicate” by purchasing
their own supplies of generic Idebenone. This leaves patients to the mercy of the
marketplace regarding both the cost and the purity of the treatment. The LHON Society
has raised this issue several times with the appropriate authorities and will continue to do
so until fairness is established.
It had been anticipated that by the time of writing this report there might have been a
decision by EMA on regulatory approval in Europe for Gensight's gene therapy treatment
(Lumevoq). However, due to manufacturing issues at the company’s main supplier, the
decision is not expected before early 2024. The LHON society has been cooperating
with researchers in Cambridge under Dr Patrick Yu Wai Man in the refining of patient
reported outcome measures (“PROMs”) which might help in better evaluating the
effectiveness of this, or indeed any other treatment for the condition.
The society has also taken part in early “scoping exercises” by the UK health technology
assessment agency NICE to assist them in understanding the patient view and reaction
to the prospect of Lumevoq becoming available in the UK and in support of an eventual
determination by the NHS on reimbursement of this very expensive (but likely one-off)
cost of this advanced therapy.|| **March 2012** **TAR** 3 **----- Start of picture text -----**
Section E Financial review
Brief statement of the
charity’s policy on reserves Considering its relatively low levels of income and
expenditure (see below), the trustees do not require any
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: Financial Report as at 31/05/2022
• the charity’s principal sources of funds
(including any fundraising); Opening balance brought forward: £20223
• how expenditure has supported the key
Income during the year:
objectives of the charity;
£21448
• investment policy and objectives including
any ethical investment policy adopted. Expenditure:
£152
Closing balance: £41519
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) Mark Leverington
Position (eg Secretary, Chair, etc) Secretary
Date D 2 1 D 0 M 3 M 2 Y 3 Y
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**March 2012** **TAR** 4 **----- 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 01/06/2021 31/05/2022
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
Exclusively from donations 3,448 - - 3,448 1,108
Gensight Biologics - 5,000 - 5,000 -
Chiesi UK 5,000 - - 5,000 -
National Lottery Community Fund - 8,000 - 8,000 -
- - - - -
- - - - -
- - - - -
- - - - -
Sub total (Gross income for 8,448 13,000 - 21,448 1,108
AR)
A2 Asset and investment sales,
(see table).
- - - - -
- - - - -
Sub total - - - - -
Total receipts 8,448 13,000 - 21,448 1,108
A3 Payments
- - - - -
- - - - -
Bank account fees 102 - - 102 80
- - - - -
- - - - -
EURORDIS membership fee 50 - - 50 43
- - - - -
- - - - -
- - - - -
Sub total 152 - - 152 123
A4 Asset and investment
purchases, (see table)
- - - - -
- - - - -
Sub total - - - - -
Total payments 152 - - 152 123
Net of receipts/(payments) 8,296 13,000 - 21,296 985
A5 Transfers between funds - - - - -
A6 Cash funds last year end 20,223 - - 20,223 -
Cash funds this year end 28,519 13,000 - 41,519 985
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||||||||||| |---|---|---|---|---|---|---|---|---|---| |**Section B Statement of assets and liabilities at the end of**||||||**the period**|||| |**Categories**|**Details**||||**Unrestricted**
**funds**||**Restricted**
**funds**||**Endowment**
**funds**| ||||||**to nearest £**||**to nearest £**||**to nearest £**| |**B1 Cash funds**|||||**-**
**--**||**-**
**--**||**-**
**--**| **----- Start of picture text -----**
- - -
- - -
Total cash funds 28,519 13,000 -
(agree balances with receipts and payments
account(s)) OK OK OK
Unrestricted Restricted Endowment
funds funds funds
Details to nearest £ to nearest £ to nearest £
B2 Other monetary assets - - -
- - -
- - -
- - -
- - -
- - -
Fund to which Current value
Cost (optional)
Details asset belongs (optional)
B3 Investment assets - -
- -
- -
- -
- -
Fund to which Current value
Cost (optional)
Details asset belongs (optional)
B4 Assets retained for the - -
charity’s own use - -
- -
- -
- -
- -
- -
- -
- -
Fund to which Amount due When due
Details liability relates (optional) (optional)
B5 Liabilities -
-
-
-
-
Signed by one or two trustees on Date of
behalf of all the trustees Signature Print Name approval
Mark Leverington 21/03/23
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