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
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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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