## **Trustees’ Annual Report for the period**
**From:** 01/10/20 **Period start date To:** 30/09/21 **Period end date**
**Charity name:** The Silent Bleed
## **Charity registration number: 1169340**
## **Objectives and Activities**
||SORP reference||
|---|---|---|
|Summary of the purposes of
the charity as set out in its
governing document|Para 1.17|For the public benefit, to advance education
of everyone about the rare disease
Superficial Siderosis – specifically suffers of
the disease, their carers, and their
physicians. To help fund ongoing,
established and new medical and scientific
research into Superficial Siderosis, by
providing grants and establishing networks
of professionals and patients through our
website and social media.
To advance health and safe lives through:
information dissemination to Superficial
Siderosis suffers, carers and their
physicians; in order to support suffers in
getting access to the medical care and
treatments they need. We will do this
through our website, printed leaflets and
other material and by organising social and
virtual events using social media.
The relief of those in need by reason of
disability by providing advice and emotional
support to sufferers, their carers and
physicians. We will do this through our
website, printed leaflets and other material
and by organising social and virtual events
using social media.
The charity is for the benefit of Superficial
Siderosis sufferers, their carers and their
physicians worldwide, not just in the UK.|
|Summary of the main
activities in relation to those
purposes for the public
benefit, in particular, the
activities, projects or services
identified in the accounts.|Para 1.17 and
1.19|Education: the charity continues to push for
greater awareness by printing written
materials and publishing articles and hosting
a webinar on its website. It also links with
other writers, researchers and bloggers
concerned with Superficial Siderosis. A
worldwide readership has access to the
specialist, Dr Levy at Massachusetts
General in the US through the charity’s Q&A
pages on the website. The charity also
works with other organisations such as
Superficial Siderosis Research Alliance, a|
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research and fundraising group in Texas,
US.
Research: the charity organises events
throughout the year to raise money for
research. It also serves as a base for others’
fundraising efforts, providing support and
charity branded paraphernalia.
Support: a number of volunteers work with
both those who have Superficial Siderosis
and their carers and family. Via email,
personal message, telephone and
occasionally face-to-face, the charity helps
people to come to terms with the illness, how
to cope with work/study, how to get their
doctor on board and guidance with where to
turn to for treatment and specialist help.
Community: through social media and
organising events, the charity has helped to
build a strong, valid and enriched community
of individuals. Superficial Siderosis is
exceptionally rare and without the Silent
Bleed, it is likely that this support network
would not exist.
Note: Our usual face-to-face activity has
been hampered this year due to Covid-19
restrictions. As things open up, we should be
able to resume.
Statement confirming Para 1.18 The trustees have reviewed the latest
whether the trustees have available guidance for trustees from the
had regard to the guidance Charities Commission and have confirmed
issued by the Charity that they work within it.
Commission on public
benefit
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## **Additional information (optional)** You may choose to include further statements where relevant about:
SORP reference Para 1.38 Policy on grant making Para 1.38 Policy on social investment including program related investment Para 1.38 Contribution made by volunteers Other
## **Achievements and Performance**
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SORP reference
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|**Achievements and Performance**|**Achievements and Performance**|**Achievements and Performance**|
|---|---|---|
|SORP reference|||
||||
|Summary of the main
achievements of the charity,
identifying the difference the
charity’s work has made to
the circumstances of its
beneficiaries and any wider
benefits to society as a
whole.|Para 1.20|**Specifics:**
Education & awareness: Website constantly
updated with up-to-date Q&A advice from Dr
Levy. Fundraising wristbands and
information leaflets dispatched around the
world.
Research: Funds given to Dr Levy’s
research programme into Superficial
Siderosis.
The leaflet is available to download for free
on the website and it is updated regularly.
Support: 165 members supported in a
closed social media group for carers and
family as well as hundreds of individual
private conversations with people affected
by Superficial Siderosis. 503 people
supported in a group for patients with a
similar number of private conversations,
often on a 24/7 basis. A number of questions
fielded between members and Dr Levy at
Massachusetts General regarding complex
and often personal issues regarding
symptoms and medication.
Community: No meets this year due to Covid
19
**The future**
The charity was established in September
2016.
This year, the charity wants to:
Raise more money for research.
Raise more awareness.
Expand our use of social media to do
the above.
We aim to achieve these points by working
towards:
Continuing to establish better links
with other organisations and
interested persons, so that the
charity can share the work.
Establishing better links with and
joining in with the wider rare-disease
community as a whole.
Securing funding for a part-time
member of staff to help with general,
everyday handling of the charity,
freeing up the trustees to manage
and expand the charity’s work.
Building a network of fundraisers.|
- Expanding the website and its connections and cooperation with other Superficial Siderosis and raredisease organisations.
## **Additional information (optional)** You may choose to include further statements where relevant about:
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Achievements against Para 1.41
objectives set
Performance of fundraising
activities against objectives Para 1.41
set
Investment performance Para 1.41
against objectives
Other
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## **Financial Review**
|**Financial Review**|||
|---|---|---|
|Review of the charity’s
financial position at the end
of the period|Para 1.21|The charity account is in credit|
|Statement explaining the
policy for holding reserves
stating why they are held|Para 1.22|The charity keeps a small amount in reserve
every year. This is to cover modest, regular
running costs such as printing leaflets and
paying for the website hosting.|
|Amount of reserves held|Para 1.22||
|Reasons for holding zero
reserves|Para 1.22|**n/a**|
|Details of fund materially in
deficit|Para 1.24|**n/a**|
|Explanation of any
uncertainties about the
charity continuing as a going
concern|Para 1.23|**n/a**|
**Additional information (optional)** You may choose to include further statements where relevant about:
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The charity’s principal
sources of funds (including Para 1.47
any fundraising)
Investment policy and
objectives including any Para 1.46
social investment policy
adopted
A description of the principal Para 1.46
risks facing the charity
Other
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## **Structure, Governance and Management**
|Description of charity’s
trusts:|||
|---|---|---|
|Type of governing document
(trust deed, royal charter)|Para 1.25|Foundation model constitution|
|How is the charity
constituted?
(e.g unincorporated
association, CIO)|Para 1.25|CIO|
|Trustee selection methods
including details of any
constitutional provisions e.g.
election to post or name of
any person or body entitled
to appoint one or more
trustees|Para 1.25|Every trustee must be appointed by a
resolution passed at a properly convened
meeting of the charity trustees.|
**Additional information (optional)** You may choose to include further statements where relevant about:
|**Additional information (optional)**
You may choose to include further statements where relevant about:|**Additional information (optional)**
You may choose to include further statements where relevant about:|**Additional information (optional)**
You may choose to include further statements where relevant about:|
|---|---|---|
||||
|Policies and procedures
adopted for the induction and
training of trustees|Para 1.51||
|The charity’s organisational
structure and any wider
network with which the
charity works|Para 1.51||
|Relationship with any related
parties|Para 1.51||
|Other|||
## **Reference and Administrative details**
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Charity name The Silent Bleed
Other name the charity uses n/a
Registered charity number 1169340
Charity’s principal address 1 Laburnam Close, Aldershot, GU11 3DX
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**Names of the charity trustees who manage the charity**
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Dates acted if not for whole Name of person (or body) entitled
Trustee name Office (if any)
year to appoint trustee (if any)
1 Jason Roberts Founder
2 Amanda Fearn Senior Officer
Sydney Fearn- Trustee
3
Roberts
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
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– Corporate trustees names of the directors at the date the report was approved
**Director name**
Name of trustees holding title to property belonging to the charity
**Trustee name Dates acted if not for whole year**
## **Funds held as custodian trustees on behalf of others**
Description of the assets None held in this capacity
Name and objects of the charity on whose behalf the assets are held and how this falls within the custodian charity’s objects
Details of arrangements for safe custody and segregation of such assets from the charity’s own assets
## **Additional information (optional)**
## **Names and addresses of advisers (Optional information)**
**Type of Name Address adviser**
## **Name of chief executive or names of senior staff members (Optional information)**
## **Exemptions from disclosure**
Reason for non-disclosure of key personnel details
**None**
## **Other optional information**
**None**
## **Declarations**
**The trustees declare that they have approved the trustees’ report above.**
**Signed on behalf of the charity’s trustees**
|**Signature(s)**
**Full name(s)**
**Position (eg Secretary,**
**Chair, etc)**
**Date**||
|---|---|
||
J Roberts|
||Jason Roberts
Amanda Fearn|
||
CEO
Senior officer|
||28/07/22|
||28/07/22|
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