## **Trustees’ annual report (including Directors’ report) for the period** **From: Period start date 01/01/2023 To: Period end date 31/12/2023 Charity name: Hypermobility Syndromes Association (working name: HMSA) Charity registration number:** 1186735 **Company number: n/a** ## **Objectives and activities** ||SORP reference|| |---|---|---| |Summary of the purposes of
the charity as set out in its
governing document|Para 1.17|We support all hypermobile people and the
professionals who work with them.
The object of the Hypermobility Syndromes Association,
as set out in our governing document, is to preserve
and protect good health among, and relieve the needs
of, people affected by Hypermobility Syndromes, in
particular by:
• Providing validation, education, rehabilitation
and positive self-management advice for people
with hypermobility related disorders and their
entire support network, including their families,
teachers, friends and colleagues. Encouraging a
culture of support while raising awareness,
knowledge and self-determination.
• Improving the quality of life, and enabling
effective self-management for affected
individuals through a variety of resources,
including (but not limited to): self-management
programs, support groups, social media,
publications, helpline and support from our
expert patient volunteers.
• Working with and educating the relevant
medical, social and health professionals in
developing awareness and understanding of the
biopsychosocial impact of hypermobility related
disorders for individuals and their entire support
network.
• Supporting and encouraging individuals in their
pursuit of diagnosis and treatment,via| |||signposting to appropriate services where
necessary.
• Providing an environment which enables people
affected by a hypermobility syndrome to
volunteer, furthering the charity’s aims whilst
developing their own workplace skills and
confidence.
• Working with other organisations to undertake
and promote research into hypermobility
related disorders, the useful results of which will
be published for the public benefit. To seek to
be the patient partner and to disseminate
research, surveys and investigations whilst
maintaining our high standard of information.
• h. Collaborating with other organisations on
policies, strategies and projects, which are
synergistic with the CIO’s own strategy and
values.| |---|---|---| |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|The HMSA’s main activities include:
• Provision of evidence-based resources,
information and support to anyone affected by
hypermobility and the professionals and that
support them.
• Free support given via helpline, email and social
media feeds to anyone that needs it.
• Running our membership scheme to provide
extra, tailored support for the hypermobile
community.
• Local groups providing additional peer to peer
support for members.
• Bi-annual production of journal for members.
• Organising and leading regular events for both
professionals and those affected by
hypermobility.
• Running thriving social media feeds to raise
awareness of hypermobility and the HMSA and
to provide timely information and support.
• Working closely with our group of Clinical
Advisors.
• Delivering the HMSA Professional Educational
Model and wider professional education.
• Contributing to and keeping abreast of the latest
research and supporting multiple research
projects - assisting researchers in finding
participants and disseminatingresults.| |||•
Liaising with, working in partnership or
alongside other relevant partners such as ARMA,
Mast Cell Action,EDS UK or PoTS UK.| |---|---|---| |Statement confirming
whether the trustees have
had regard to the guidance
issued by the Charity
Commission on public
benefit|Para 1.18|The Hypermobility Syndromes Association’s board takes
seriously the Charity Commission’s guidance on public
benefit. All our activities are relevant to improving
health outcomes, wellbeing, and support for people
with hypermobility in line with our charitable purposes
stated above.| ## **Additional information (optional)** You may choose to include further statements where relevant about: ||SORP reference|| |---|---|---| |Policy on grant making|Para 1.38|n/a| |Policy on social investment
including program related
investment|Para 1.38|n/a| |Contribution made by
volunteers|Para 1.38|Our team of around 40 volunteers make a vital
contribution to the work of the Hypermobility
Syndromes Association (HMSA). Almost all our
volunteers live with hypermobility, and we see it as
essential that the charity is truly led by people from
within our community of need. Our volunteers
genuinely understand hypermobility syndromes and
have daily lived experience and are empowered to
shape the support, advice and solutions we provide.
Their lived experience and insight, combined with an
ethos of practical self-management, enables the HMSA
to provide validation, support, and practical advice that
cannot come from theoretical understanding alone.
The composition of our trustee board, staff and wider
volunteer team all demonstrate the value we place on
being led by lived experience.
We do a huge amount with very limited resources
thanks to our amazing volunteers who cover a wide
range of roles from social media, to fundraising, to
running local groups providing peer-led support, to
editing our journal, to supporting and leading our work
with professionals.
“I absolutely adore volunteering for them, and I hope to
continue to do so for many more years to come... I am
passionate about empowering the audience with
knowledge to self-manage better”
“I believe it's vital for the voices of people who have
hypermobility to be heard and valued - in everything
the HMSA does and in its own board and
organisation. I've metpeople with a wide range of| backgrounds and experiences since becoming a Trustee. Hearing their stories and seeing how these stories can support and improve other people's lives is one of the best parts about being a Trustee” We are also extremely lucky to have a voluntary group of Clinical Advisors, led by Dr Philip Bull, who bring expertise, skills and knowledge across a range of specialist fields relevant to hypermobility ensuring that the information we provide is up to date, rigorously checked and comprehensive. The HMSA is run by 2 paid, part-time staff whose total Other hours do not equate to 1 full-time role. Both paid members of staff also live with hypermobility. All other work is carried out by volunteers. ## **Achievements and performance** |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||The HMSA is here to support_everyone_with
symptomatic hypermobility – whatever the cause – and
however mildly or severely they may be affected.
We promote a holistic, solution-focussed approach to
living well, providing self-management tools and
support including:
• Patient Support Groups
• Education Programmes
• Information and Advice for hypermobile people
• Evidence-based information and advice for
healthcare professionals
Our Mission:To improve the support and access to
treatment for anyone affected by hypermobility so they
can live well.
Our Values:Empowering, inclusive, collaborative,
community-led, trustworthy.
“The Hypermobility Syndromes Association … works
so hard to support individuals and families
struggling to cope with the various related syndromes
that can be profoundly life-impacting but are still not
widely understood.” (member)
While the NHS continuing to be under extreme
pressure, with waiting lists still growing, we help to
reduce the burden on statutory services by delivering
support when it was not available elsewhere. This is
especially important as on average it takes 10 years for
hypermobility syndromes to be diagnosed.
As a small charity led by people with lived experience,
we are able to be very agile and quickly pivot our
services toprovide the expert,specialist services our| |---|---|---|---| members, the professionals who support them and the wider hypermobile community need. We have continued to build on the wide range of patient events we offer on a wide range of topics from nutrition to exercise to pain management to help people with hypermobility self-manage their condition better, so they are able to live well. Session content was shaped by feedback from members and volunteers. This series of events has been extremely well attended and received with over 1000 people attending live events – and many more watching them on playback. A threefold increase on attendance from last year, showing the growing need and demand for these sessions. “I would also like to say a very big thank you to HMSA. I became a member last Autumn and as a consequence I have learnt a huge amount about Hypermobility. I was diagnosed in 2015, however at the time of diagnosis I did not fully understand the significance of the diagnosis. No guidance or advice was given to me on how to live well with hypermobility. HMSA has helped me to do that so thank you very much..” (Post event feedback) For a charity staffed mainly by volunteers, many with their own health needs, this level of service provision when services are so stretched is vital and is a major achievement. “ It's good to know we are not alone. I'm learning all the time and since I joined the organization I feel more confident .” (Feedback about our support.) The ‘Living Well with Hypermobility 5 week course for members at the start of the year was also a great success again and was extremely well attended with excellent feedback. The sessions included: Anxiety and mental health; Pain management; Sleep management; Weight management and an open Q&A session. Feedback given from participants post sessions told us: • 100% of were more now confident managing their condition • 92% would now make changes to how their manage their condition. “Nuggets of information of everywhere.” We also run a helpline and deliver online support. • “Thank you. That’s the best help I’ve ever had.” (Helpline feedback) • “Thank you so much. It’s so helpful to talk to someone who actually understands.” (Helpline feedback) As well as offering support via a wide range of sessions and events including weekly online relaxation classes to support wellbeing, we also run monthly online ‘ask the Occupational Therapist’ sessions which are free and open to all. Feedback after ‘Ask the OT’ session: “ I have learned so much. . Just a little message to say how reassuring it is to be in a room with such well-informed, understanding and compassionate hosts. So much .” gratitude for you and all HMSA does, thank you.” Additionally, our local regional groups successfully continued their transition to hybrid delivery providing much needed support, connection and information for our members with regionally groups regularly running. In response to feedback, we have also started to offer national online support groups that focus on specific issues. Feedback: “It’s so lovely to pop into any of the local groups and meet people all over the country and hear their stories and share support hints and tips.” “The group was so nice tonight. Thank you for being so welcoming! I’m quite isolated so it’s really nice to join a group with similar people.” Our social media team continued to be very active providing information not only about hypermobility but also a wide range of related conditions. Over 500 individuals were directly supported with 1:1 advice via Facebook, in addition to the very high levels of public engagement with our posts. For a small charity, our reach on social media which continues to grow (c.46k on Facebook, c. 12k on twitter and 3k on Instagram) continues to be impressive. Additional help was provided by our trained helpline team led by volunteers helping to support over 800 more people via email, online and phone. During 2023, we continued to work closely in partnership with relevant charities in the field. Together we worked hard behind the scenes to ensure that key hypermobility services remain open and that more healthcare professionals are better informed about hypermobility. This important work is necessary so that patients can access earlier diagnosis as well as better support in their local area in the future. We liaised with a wide range of clinicians and attended some key events such as the British Society of Rheumatologists’ Annual Conference in Liverpool attended by over 2000 professionals. Supported by volunteers and our Lead Clinical Advisor, Dr Philip Bull, we spoke directly to hundreds of professionals, delivered a very well-attended presentation and shared new resources. Many of the key achievements in 2023 were ensuring that the HMSA was continuing to build the foundations for future growth and development. The board and CEO reviewed the charity’s strategy and future plans. The key priority for the short-term remains focussing on strengthening and stabilising the organisation and raising vital funds so that the charity can extend and further develop its work. Key changes: The HMSA was delighted to welcome a new trustee during the course of 2023 – Tia Cheang. Tia brings a wealth of experience and a deep personal connection to her role at the HMSA. As someone who has lived with Ehlers-Danlos Syndrome, she joined to bring her own experience and understanding to help guide our mission. Tia has had a long career in IT, mainly in the NHS, where her involvement in Genomics UK and the 100k Genome Programme aimed to unravel the complexities of genetic conditions, much like EDS, offering hope and potential pathways for better treatments. Tia draws upon her own experience of living with EDS to advocate for Hypermobile individuals and improve inclusivity, disability rights, and greater awareness through her lobbying work at Parliament. Tia is passionate about supporting disabled individuals in the workplace. She coaches and mentors disabled individuals to overcome barriers and achieve their professional goals, demonstrating her commitment to improving employment opportunities for those with long-term conditions. We are lucky to have a strong trustee board and the varied skills and very extensive experience that they jointly bring means that the charity is fully able to meet any challenges ahead while continuing to shape and develop the HMSA’s future strategy. ## **Financial review** |**Financial review**||| |---|---|---| |Review of the charity’s
financial position at the end
of the period|Para 1.21|See financial information attached.
Income for period: £34,495
Expenditure for period: £35,265 Unrestricted funds at
year end: £13,122.
Total funds atyear end: £13,122| |Statement explaining the
policy for holding reserves
stating why they are held|Para 1.22|The charity aims to keep at least 3 months in reserves
up to a maximum of 6 months. In 2023 we held £13,122
which falls within this range and allows us to manage
smoothly any month on month income/expenditure
and cash flow variations as these can have a greater
impact on a small charity. In determining appropriate
reserves levels, our reserves policy takes into account
the size of the charity and its sources of funding and
also follows the Charity Commission Guidance that
recommends we consider the following when
determining reserves levels:
•
“plans for the maintenance of essential services
for beneficiaries”
•
“the risks of unplanned closure associated with
the charity’s business model, spending
commitments, potential liabilities and financial
forecasts”
•
“addresses the risks of unplanned closure on
their beneficiaries (in particular, vulnerable
beneficiaries), staff and volunteers”
We review reserve levels annually as part of our
planning, budgetary and financial control processes and
also monitor levels monthly. In this way, trustees can
ensure that we prevent the build-up of excess reserves
or of reserves beingunexpectedlyor rapidlydepleted.| |Amount of reserves held|Para 1.22|£13,122| |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**| |Explanation of any
uncertainties about the
charity continuing as a going
concern
Para 1.23
**n/a**|Explanation of any
uncertainties about the
charity continuing as a going
concern
Para 1.23
**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:||| |The charity’s principal
sources of funds (including
any fundraising)|Para 1.47|The HMSA’s principal sources of income are fundraising,
membership, sponsorship and grant income.
We would like to thank everyone who supported the
HMSA in 2023.| ||Para 1.46|**n/a**| |Investment policy and
objectives including any
social investment policy
adopted||| |---|---|---| |A description of the principal
risks facing the charity|Para 1.46|The trustees review a detailed, and regularly updated,
risk register regularly at trustee meetings. The risk
register outlines key risks and ensures that any action
needed to ameliorate risks is taken quickly and on the
basis of full information.| |Other||| ## **Structure, governance and management** |Description of charity’s
trusts:||**n/a**| |---|---|---| |Type of governing document:
for example,trust deed,
memorandum and articles of
association etc|Para 1.25|Constitution| |How is the charity
constituted?
for example limited company,
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|Elected by other trustees| |||| ## **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|References, and detailed checks are provided before
trustees start. The HMSA has an induction procedure
including provision of all relevant documents, a trustee
Handbook, code of conduct and relevant policies and
can offer additional support for new trustees, as
required.| |---|---|---| |The charity’s organisational
structure and any wider
network with which the
charity works|Para 1.51|**n/a**| |Relationship with any related
parties|Para 1.51|**n/a**| **n/a** Other ## **Reference and administrative details** |Charity name|**The Hypermobility Syndromes Association**| |---|---| |Other name the charity uses|**HMSA**| |Registered charity number|**CIO 19863**| |Charity’s principal address|**49 Greek Street, London W1D 4EG**| ## **Names of the charity trustees who manage the charity** |1
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20|**Trustee name**|**Office (if any)**|**Dates acted if not for whole year**|**Name of person (or**
**body) entitled to**
**appoint trustee (if**
**any)**| |---|---|---|---|---| ||Rachel King|Trustee|From December 2020 -present|| ||Gil Hilleard|Trustee|From June 2021 -present|| ||Nichola Gardner|Trustee|From May2021 -present|| ||Zoe Lomax|Trustee|From May2021 -present|| ||Mark Austin|Trustee(Chair)|From December 2021 -present|| ||Zoe Walker|Trustee|From March 2022 -present|| ||Tia Cheang|Trustee|From August 2023 -present|| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| – Corporate trustees names of the directors at the date the report was approved **Director name n/a** Name of trustees holding title to property belonging to the charity |**Trustee name**|**Dates acted if not for whole year**| |---|---| |**n/a**|| ||| ||| ## **Funds held as custodian trustees on behalf of others** Description of the assets held in this capacity n/a Name and objects of the charity on whose behalf the n/a assets are held and how this falls within the custodian charity’s objects Details of arrangements for safe custody and segregation n/a 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)** Lisa Bone, CEO **Exemptions from disclosure** Reason for non-disclosure of key personnel details **N/A** ## **Other optional information** ## **Declarations** **The company has taken advantage of the small companies’ exemption in preparing the report above.** **The trustees declare that they have approved the trustees’ report (including directors’ report) above.** **Signed on behalf of the charity’s trustees/directors** **Signature(s) Full name(s)** Mark Austin **Position (for example** Chair **Secretary, Chair, etc) Date** 30/7/24 **Independent examiner's report on the accounts** ## **Section A Independent Examiner’s Report** ## **Report to the trustees/** Hypermobility Syndromes Association **members of** **On accounts for the year** 31 December 2023 **Charity no** 1186735 **ended (if any) Set out on pages** 16-17 (remember to include the page numbers of additional sheets) I report to the trustees on my examination of the accounts of the above charity (“the Trust”) for the year ended **31/12/2023** . - **Responsibilities and** As the charity trustees of the Trust, you are responsible for the preparation **basis of report** of the accounts in accordance with the requirements of the Charities Act 2011 (“the Act”). I report in respect of my examination of the Trust’s accounts carried out under section 145 of the 2011 Act and in carrying out my examination, I have followed the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act. **Independent** I have completed my examination. I confirm that no material matters have **examiner's statement** come to my attention in connection with the examination which gives me cause to believe that in, any material respect: - accounting records were not kept in accordance with section 130 of the Act or - the accounts do not accord with the accounting records I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in order to enable a proper understanding of the accounts to be reached. **Signed: Date:** 12/8/24 **Name:** Virginia Santer **Relevant professional** ACCA **qualification(s) or body (if any):** **Address:** Monetaire Accountants Limited, Sovereign House 22 Shelley Road, Worthing, BN11 1TU ## **Section B Disclosure** Only complete if the examiner needs to highlight matters of concern (see CC32, Independent examination of charity accounts: directions and guidance for examiners). 1 **October 2018** **IER** **Give here brief details of any items that the examiner wishes to disclose** . 2 **October 2018** **IER** |**Hypermobility Syndromes Association**|**Hypermobility Syndromes Association**|**Hypermobility Syndromes Association**|**1186735**| |---|---|---|---| |**Receipts andpayments accounts**|||| |**For the period**
**from**|01/01/2023|**To**|31/12/2023| ## **CC16a** |**Section A Receipts and payments**|**Section A Receipts and payments**|**Section A Receipts and payments**|||||||| |---|---|---|---|---|---|---|---|---|---| |**A1 Receipts**|**Unrestricted**
**funds**
**to the nearest £**
**9,265**
**1,000**
**19,760**
**4,243**
**227**
**-**
**-**
**-**

**34,495**
**-**
**-**
**-**
**34,495**||**Restricted**
**funds**
**to the nearest £**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**||**Endowment**
**funds**
**to the nearest £**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**||**Total funds**
**to the nearest £**
**9,265**
**1,000**
**19,760**
**4,243**
**227**
**-**
**-**
**-**
**34,495**
**-**
**-**
**-**
**34,495**||**Last year**
**to the nearest £**| |Donations and Legacies|**9,265**||||||||**10,021**| |Grants|**1,000**||||||||**-**| |Charitable Activities|**19,760**||||||||**16,092**| |Sales and Trading|**4,243**||||||||**3,053**| |Bank Interest|**227**||||||||**62**| ||**-**||||||||**-**| ||**-**||||||||**-**| ||**-**||||||||**-**| |**_Sub total_**_(Gross income for_
_AR)_|
**34,495**||||||||**29,228**| ||||||||||| |**A2 Asset and investment sales,**
**(see table).**|||||||||| ||**-**||||||||| ||**-**||||||||**-**| |**_Sub total_**|**-**||||||||**-**| |**_Total receipts_**
**A3 Payments**|||||||||| ||||||||||**29,228**| ||||||||||| |Charitable Activities|**34,750**||**2,642**||**-**||**37,392**||**38,265**| |Governance Costs|**515**||**-**||**-**||**515**||**1,276**| ||**-**||**-**||**-**||**-**||**-**| ||**-**||**-**||**-**||**-**||**-**| ||**-**||**-**||**-**||**-**||**-**| ||**-**||**-**||**-**||**-**||**-**| ||**-**||**-**||**-**||**-**||**-**| ||**-**||**-**||**-**||**-**||**-**| ||**-**||**-**||**-**||**-**||**-**| |**_Sub total_ **|**35,265**||**2,642**||**-**||**37,907**||**39,541**| ||||||||||| |**A4 Asset and investment**
**purchases, (see table)**|||||||||| ||**-**||||||||| ||**-**||||||||| |**_Sub total_ **|**-**||||||||**-**| |**_Total payments_**
**_Net of receipts/(payments)_**
**A5 Transfers between funds**
**A6 Cash funds last year end**
**_Cash funds this year end_**|||||||||| ||||||||||**39,541**| ||||||||||| ||**- 770**||||||||**- 10,313**| ||**-**||||||||**-**| ||**13,892**||||||||**26,847**| ||**13,122**||||||||**16,534**| CCXX R1 accounts (SS) 14/08/2024 1 ## **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**
CCXX R2 accounts (SS)|**Details**
**_Total cash funds_**
(agree balances with receipts and payments
account(s))
**Details**
Bank
Paypal
Go Cardless|**Details**
**_Total cash funds_**
(agree balances with receipts and payments
account(s))
**Details**
Bank
Paypal
Go Cardless|**Unrestricted**
**funds**
**to nearest £**
**11,844**
**1,237**
**41**
**13,122**
OK
**Unrestricted**
**funds**
**to nearest £**|**Unrestricted**
**funds**
**to nearest £**
**11,844**
**1,237**
**41**
**13,122**
OK
**Unrestricted**
**funds**
**to nearest £**|**Restricted**
**funds**
**to nearest £**
**-**
**-**
**-**
**-**
OK
**Restricted**
**funds**
**to nearest £**|**Restricted**
**funds**
**to nearest £**
**-**
**-**
**-**
**-**
OK
**Restricted**
**funds**
**to nearest £**|**Endowment**
**funds**
**to nearest £**| |---|---|---|---|---|---|---|---| ||||||||**-**| ||||||||**-**| ||||||||**-**| ||||||||**-**| ||||||||OK| ||||||||**Endowment**
**funds**
**to nearest £**| ||||**-**||**-**||**-**| ||||**-**||**-**||**-**| ||||**-**||**-**||**-**| ||||**-**||**-**||**-**| ||||**-**||**-**||**-**| ||||**-**||**-**||**-**| ||**Details**
**Details**||**Fund to which**
**asset belongs**
**Fund to which**
**asset belongs**||**Cost (optional)**
**-**
**-**
**-**
**-**
**-**
**Cost (optional)**||**Current value**
**(optional)**| ||||||||**-**| ||||||||**-**| ||||||||**-**| ||||||||**-**| ||||||||**-**| ||||||||**Current value**
**(optional)**| ||||||**-**||**-**| ||||||**-**||**-**| ||||||**-**||**-**| ||||||**-**||**-**| ||||||**-**||**-**| ||||||**-**||**-**| ||||||**-**||**-**| ||||||**-**||**-**| ||||||**-**||**-**| ||**Details**||**Fund to which**
**liability relates**||**Amount due**
**(optional)**||**When due**
**(optional)**| ||Accountancy||
Unrestricted||**-**||| ||||||**-**||| ||||||**-**||| ||||||**-**||| ||||||**-**||| ||Signature
~~2~~||Print Name
Rachel King||||| ||||||||Date of
approval| ||||||||30/07/2024| ||||||||| ||||||||~~14/08/2024~~| CCXX R2 accounts (SS)