## **Trustees’ annual report (including Directors’ report) for the period** **From: Period start date 01/01/2022 To: Period end date 31/12/2022 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:
a. 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.
b. 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.
c. 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.
d. Supporting and encouraging individuals in their
pursuit of diagnosis and treatment, via signposting to
appropriate services where necessary.| |||e. 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.
f. Maintaining the Information Standard, as was
accredited by NHS England, so as to ensure the high
standard of all HMSA publications in whichever format
deemed suitable.
g. 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 strategyand 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 Medical
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 disseminating results.
•
Liaising with, working in partnership or
alongside other relevant partners such as ARMA,
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). 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. Almost all our
volunteers have personal experience of hypermobility
and 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.
“I volunteer because I want to make a difference. If I
can use my experience to help one person to feel
supported and that they are not alone, then it is all
worth it!”
“Volunteering for the HMSA has meant that I can help
others who have had similar experiences AND help
people to actually manage their conditions like I have
now learnt to. 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.”
We are also extremely lucky to have a voluntary group
of Medical 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.| |Other||The HMSA is run by 2 paid, part-time staff whose total
hours do not equate to 1 full-time role. All other work
is carried out byvolunteers.| ## **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)
In a year where the long-term effects of COVID-19 still
continued to be felt, especially by many in the
hypermobile community who were especially
vulnerable, we continued to provide responsive
community-led support.
While the NHS was under extreme pressure, with
waiting lists growing, we helped to reduce the burden
on statutory services by delivering support when it was
not available elsewhere. Our medical advisors have
been at the forefront of research in this area and have
conducted research into the links between
hypermobility and Long Covid – for publication in 2023.
Our lead Medical Advisor also led an extremely useful
session on Long Covid and hypermobility and other
related conditions with tips and advice for treatment
and management of symptoms.
As a small charity led by people with lived experience,
we are able to be very agile and quickly pivot our
services to provide the expert, specialist services our
members, the professionals who support them and the
wider hypermobile communityneed.| |---|---|---|---| In April 2022, we initiated a new series of monthly patient events on a wide range of topics from nutrition to exercise to help people with hypermobility selfmanage 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 330 people attending live events – and many more watching them on playback. “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.” (Post event feedback) For a charity staffed mainly by volunteers, many with their own health needs, this level of service provision, at a time when people needed it most, was a major achievement. “ You guys have always been my favourite source of information in the last 24 years of being diagnosed. Your [message board] page saved my life .” (Feedback about our online 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. We also run a helpline and deliver online support. • “So much of a relief to speak to someone who has it and knows how I feel. So helpful, answers lots of questions that I had.” (Helpline feedback) • “I wanted you to know how empowered I feel talking to you. You’ve understood completely.” (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. Feedback after ‘Ask the OT’ session: “ Thank you that was the most informative, helpful support session I've ever attended! All the answers were multi-faceted, and I learned something from each one, not just the .” response to my question Additionally, our local regional groups successfully continued their transition to hybrid delivery providing much needed support, connection and information for our members with 7 groups regularly running with 2 new groups starting soon. Feedback: “ I find all of the information and resources that you provide useful. It also helps to remind me that no matter how hard living with hypermobility can be – I am not going through it alone.” Our social media team continued to be very active providing information not only about hypermobility but also a wide range of related conditions. Over 150 individuals were directly supported with confidential 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 (c.42k on Facebook, c. 11k 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 300 more people via email, online and phone. During 2022, 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. Many of the key achievements in 2022 were around maintaining stability and ensuring that the HMSA was building 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 2022 – Zoe Walker. Zoe brings experience of working in both the civil service and the charitable sector. Zoe was diagnosed with Joint Hypermobility Syndrome in her mid-20s. Having a diagnosis helped to explain the chronic pain and fatigue she had over the years. Our helpline was incredibly helpful when she needed someone to speak to who would understand. Zoe told us: “ The HMSA was the first charity I came across that provided vital information .” Mark Austin, an existing trustee, took over as Chair with the unanimous support of the board. Mark has a track record of delivering commercial success for a range of financial and payment related companies. His expertise includes business development, marketing and product management. Mark’s daughter lives with hypermobility. 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. The HMSA was pleased to appoint a new CEO in 2021. Lisa Bone brings experience from both the commercial and charitable sector and started in January 2022. Lisa has been able to build on the excellent work achieved in 2021 and is actively working on the future growth and reach of the charity. ## **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: £29,228
Expenditure for period: £39,541 Unrestricted funds at
year end: £13,892 Restricted funds at year end: £2,642
Total funds atyear end: £16,534| |Statement explaining the
policy for holding reserves
stating why they are held|Para 1.22|The charity aims to keep 3-6 months in reserves. In
2022 the charity aimed to keep £6000 for essential
expenditure and emergency or closure costs, plus a
£5000 buffer that can be used to cover temporary
income reduction or to provide initial funds for setting
up new projects.| |Amount of reserves held|Para 1.22|£11,000| |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: |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 2022.| |---|---|---| |Investment policy and
objectives including any
social investment policy
adopted|Para 1.46|**n/a**| |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:|**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|References, and detailed checks are provided before
trustees start. The HMSA has an induction procedure
including provision of all relevant documents and
policies and can offer additional support for new
trustees, as required.| |The charity’s organisational
structure and any wider|Para 1.51|**n/a**| |network with which the
charity works||| |---|---|---| |Relationship with any related
parties|Para 1.51|**n/a**| |Other||**n/a**| |**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**||| |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
November 2022)|From December 2021 -
present|| ||Zoe Walker|Trustee|From March 2022 -
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 wholeyear**| |---|---| |**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
assets are held and how this
falls within the custodian
charity’s objects|n/a| |Details of arrangements for
safe custody and
segregation of such assets
fromthe charity’s ownassets|n/a| ## **Additional information (optional)** ## **Names and addresses of advisers (optional information)** |**ional information (optional)**
**Names and addresses of advisers (optional information)**|**ional information (optional)**
**Names and addresses of advisers (optional information)**|**ional information (optional)**
**Names and addresses of advisers (optional information)**| |---|---|---| |**Type of**
**adviser **
**Name**
**Address**||| |||| |||| |||| |||| |**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** 24/7/23 CHARITY COMMISSION FOR ENGLAND AND WALES Independent examiner's report on the accounts Section A ndgpendent Examiner's Report Report to the trusteesl mgmbers of Hypemiobilily Syndrornes Association On accounts forthe year 9nded 31 December 2022 Charlty no lif any 1186735 Set out on pages 14-15 I report lo the trustees on my examination of the accounts of the above charity I'the Trust") lor the year ended 31 De￿mber 2022. Responsibilities and As the charity trustees of the Trust. you are responsibk for the preparation bas18 of report of the acwunls In accordance wth the requirements of the Charities Act 2011 1.the Acl'l 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 8pplicable Direc110115 given by the Charity Commission under section 14515llbl of the Act. I have completed my examination I confirm that no material matters have come lo my attention (other than that disclosed telow'l In connection with the examination which gives me cause to believe that in, any material respect. accounting reeords were not kept in accordance with section 130 of the Act or the accounts do not accord wth the accounting records Independent examiner's 5tatgment I have no cOn￿rn$ and have come across no other matters In connection with the examination to which attention should L* drawn in order lo enable a proper understanding ol the accounts to be reached. Please delete the words the brackets rfthey do not apply. Signed.. Date: 14107123 Name: Virginia Sanler Relovant professlonal qualificatlonlsl or body Ilf any): FCCA Addrets8.' Monetaire Accountants Limited. Sovefeign House, 22 Shelley Road Worthing, Wesl Sussex, BN11 1TU Sèction B Disc105ure Only complete If the examiner needs to highlight matters of concern Isee CC32, Independent examination of charity accounts.. directions and guidance for examinersl. IER October 2018 Givg here brlel delai18 of any Item8 that the examlner wl8hg8 to dls¢lose. IER October 2018 |**Hypermobility Syndromes Association**|**Hypermobility Syndromes Association**|**Hypermobility Syndromes Association**|**1186735**| |---|---|---|---| |**Receipts andpayments accounts**|||| |**For the period**
**from**|01/01/2022|**To**|31/12/2022| ## **CC16a** |**For**|**the period**
**from**|01/01/2022|**To**|31/12/2022| |---|---|---|---|---| |**Section A Receipts and payments**|**Section A Receipts and payments**|||||| |---|---|---|---|---|---|---| |**A1 Receipts**|**Unrestricted**
**funds**
**to the nearest £**
**10,021**
**16,092**
**3,053**
**62**
**-**
**-**
**-**
**-**
**29,228**
**-**
**-**
**-**
**29,228**
**34,690**
**1,276**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**35,966**
**-**
**-**
**-**
**35,966**
**- 6,738**
**-**
**20,630**
**13,892**|**Restricted**
**funds**
**to the nearest £**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**3,575**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**3,575**
**-**
**-**
**-**
**3,575**
**- 3,575**
**-**
**6,217**
**2,642**|**Endowment**
**funds**
**to the nearest £**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**|**Total funds**
**to the nearest £**
**10,021**
**16,092**
**3,053**
**62**
**-**
**-**
**-**
**-**
**29,228**
**-**
**-**
**-**
**29,228**
**38,265**
**1,276**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**39,541**
**-**
**-**
**-**
**39,541**
**- 10,313**||**Last year**
**to the nearest £**| |Donations and Legacies|**10,021**|||||**11,686**| |Charitable Activities|**16,092**|||||**19,712**| |Trading|**3,053**|||||**2,911**| |Other Income|**62**|||||**816**| ||**-**|||||**-**| ||**-**|||||**-**| ||**-**|||||**-**| ||**-**|||||**-**| |**_Sub total_**_(Gross income for_
_AR)_|**29,228**|||||**35,125**| |||||||| |**A2 Asset and investment sales,**
**(see table).**||||||| ||**-**|||||| ||**-**|||||**-**| |**_Sub total_**|**-**|||||**-**| |**_Total receipts_**
**A3 Payments**||||||| |||||||**35,125**| |||||||| |Charitable Activities|**34,690**|||||**32,976**| |Governance Costs|**1,276**|||||**1,776**| ||**-**|||||**-**| ||**-**|||||**-**| ||**-**|||||**-**| ||**-**|||||**-**| ||**-**|||||**-**| ||**-**|||||**-**| ||**-**|||||**-**| |**_Sub total_ **|**35,966**|||||**34,752**| |||||||| |**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_**||||||| |||||||**34,752**| |||||||| ||**- 6,738**|**- 3,575**|**-**|**- 10,313**||**373**| ||**-**|**-**|**-**|**-**||**-**| ||**20,630**|**6,217**|**-**|**26,847**||**26,474**| ||**13,892**|**2,642**|**-**|**16,534**||**26,847**| CCXX R1 accounts (SS) 27/07/2023 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**|**Details**
**Details**
**Details**
**_Total cash funds_**
(agree balances with receipts and payments
account(s))
**Details**
Bank
Paypal
**Details**
Signature
December payroll costs
December payroll costs|**Unrestricted**
**funds**
**Restricted**
**funds**
**to nearest £**
**to nearest £**
**13,631**
**2,642**
**261**
**-**
**-**
**-**
**13,892**
**2,642**
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)**
General
**1,668**
Restricted
**325**
**-**
**-**
**-**
Print Name|**Endowment**
**funds**
**to nearest £**| |---|---|---|---| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||OK| ||||**Endowment**
**funds**
**to nearest £**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**Current value**
**(optional)**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**Current value**
**(optional)**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**When due**
**(optional)**| ||||**03/01/23**| ||||**03/01/23**| ||||| ||||| ||||| ||||| ||||Date of
approval| ||||| ||||| CCXX R2 accounts (SS) 27/07/2023 2