Dyston7a
UK
The Dystonia Society
A company limited by guarantee
Trustees Report & Financial Statements for the
year ended 31 March 2024

The Dystonia Society
Report of the Trustees for the year ended 31 March
2024 (Incorporating the Directors, Report)
Dyston7a
UK
Contents
Reference and administrative infomation
Report of the trustees
3-15
Independent examiner's report
16
Statement of financial activities
17
Balonce sheet
18-19
Statement of cash flows
20
Notes to the financial statements
21-29

The Dystonia Society
Report of the Trustees for the year ended 31 March
2024 {Incorporating the Directors, Report)
Dyston7'a
UK
Reference and administrative information
Charity registration number
1062595 (England and Wales) and SC042127 (Scotland)
Compony registration number
03309777
Patron
Tully Keamey MBE
Trustees and Directors
Amit Botla
From November 2023
Daniel Berry
Until September 2023
Emily Birden
From August 2023
Christopher Bradshaw (Chair) Until 31" March 2024
Timothy Gannicliffe
Ross Grant
Qamor Khan. MBE (Chair)
Antonello Macerollo
Nick Morgan
Sophie Norman
Fernanda Perez
Penny Ritchie Calder MBE
Andrew Russell
Robert Semple
Katie Wells
James Wishart
From 1st April 2024
From November 2023
Until June 2023
From August 2023
From August 2023
Until July 2023
Until January 2024
Until September 2023
Secretory
Roger Edmonds FCA
Independent Examiner
Michael Williams ACA
30 Retford Drive
Sutton Coldfield
B76 IDG
hAedical Advisers
Prof. Mark Edwards
Mr. Daniel Ezra
Ms. Lucy Hicklin
Dr Jean-Pierre Lin
Dr. Morie-Helene Marion
Dr. Kathryn Peall
Prof. Tom Wamer
Bankers
CAF Bank
Kings Hill
West Malling
Kent ME19 4TA
Registered Office
3rd Floor
89 Albert Embankment
London
SEI 7TP
Bonk of Scotland
14116 Cockspur Street
London SWIY 5B

The Dystonia Society
Report of the Trustees for the year ended 31 March
2024 (Incorporating the Directors, Report)
Dyston7'a
UK
Objectives & Activities
The trustees, who are also the directors of the company, submit their report and the
financial statements of The Dystonia Society (￿he Society") for the year ended 31 March
2024 on the basis of the accounting policies set out in Note I to the financial statements,
and comply with the requirements of Accounting ond Reporting by Charities.. Statement
of Recommended Practice applicable to charities preparing their accounts in accordance
with the Financial reporting Standard in the UK ond Republic of Ireland (FRS1021 (effective
l January 2015) (Charities SORP. FRS102). The reference and administrative information
on the previous page foms part of this report.
Principal Objective
The Society. as derived from the objects set OLrt in our Articles of Association. ore to
promote the welfare of people who living with any fonn of the neurological movement
disorder known as dystonia, or from similar or ￿lated conditions ond to advance the
education of the public about all aspects of the said conditions. Under our opercrting
name of Dystonio UK. we provide support and information for our community both
nationally and locally. We are the only national charity dedicated to supporting people
with dystonia throughout the UL
Review of Activity
Our mission is "We exist to give hope and support to those living with dystonio. Creating
UK and worldwide awareness.- During year 2023-24 we have continued in developing
the chority to meet the needs of both members and the wider dystonia community.
Our goals have been:
Reach Out. Reoch All
-Providing support and information for people living with dystonia.
Your Voice Heard
-Influencing national policies and promoting best practice to meet the needs of
the dystonia community
Ensuring Dystonia Matters
-Roising aworeness about dystonia and Dystonia UK
Dystonia Research
-supporting research ond development for improved treatment and management
of dystonio
The Annual Report of the Trustees for 2023124 is set out under our four strateglc g001s.

The Dystonia Society
Report of the Trustees for the year ended 31 March
2024 {Incorporating the Directors, Report)
Dyston7"a
UK
Reach Out. Reach All
-Providing support ond information for people living with dystonia.
Dystonia UK is committed to becoming a more equal. diverse and inclusive organisation.
We believe this commitment is key to delivering our strategy. and our organisational
mission to be there for the whole dystonia community. Our 'Reach Out. Reoch All,
programme to improve and modernise the infomation and odvice available for people
with dystonia continues to grow ond develop. We oim to make information os accessible
as possibleto people by using o variety of different channels-online. in print ond in person.
In person -
Dystonia Matters Live 2023 was the largest community event for people living with
dystonio in the UL The event brought content usually found in our Dystonia Matters
magazine to an audience live. The aim of the event was to support people living with
dystonia across the UKwith information and to provide on opportunity forthem to connect
with others.
"ExCelle￿t day, thap7k you so much for organising itl We spoke to others
who felt t17e safftel
The event was held over 2 days in Newcastle at the end of June 2023. we hosted around
200 people - a mixture of odult and children with dystonia, fomily & friends. carers. and
professionals. On our 'Main Stage. we hosted an assortment of sessions including
interactive workshops. panel discussions and presentations. Our'Acoustic Stage. was the
setting for more informol sessions including live demonstrations. film screenings and deep
dive workshops. We had 24 sessions and in total 33 patient & professional speakers.
-what a fabulous eL/ent, thank you to eVeryo￿e in ippvolved and all the
ama2ing speakers such open and honest event."
We olso included a 40th anniversary party where we celebrated with our success and
impact over the years with members of the community at an 80s themed paty.
We continued to run our local support groups across the country with the support of
volunteer group coordinators. With o mix of content. some induding more formal speaker
sessions and others more social, these small meet ups provide the opportunity for people
to share experiences. meet others with dystonia and to find out more obout dystonia. In
2023-24, we ran 24 meet ups in 6 counties.
Online-
Our website continues to serve as the primary source of information for people looking for
information about dystonio with over 209.000 views across the year. Since the launch of
our Info Hub in early 2023. we hove had 1956 views also. Through our website we were
also able to release recordings from Dystonio Matters Live 2023. with the first recording
'IOO.000 voices, receiving neady 300 views.

The Dystonia Society
Report of the Trustees for the year ended 31 March
2024 (Incorporating the Dirertors, Report)
Dyston7'a
UK
Our webinors enable people to access up to date information without the need to attend
conferences or in-person events. Where people can access these in real time there is also
an opportunity to put questions to our experts. They are also availoble on our website and
YouTube channel to view later. This yeor. we hosted o further 4 in the 'Reach Out Reach
All, series reaching 1000 views and attendees:
Get involved with research
Your Questions Answered with Dr Marie-Helene Morion
Your Questions Answered with Dr Miles Humberstone
Your Questions Answered: Dystonia and the cerebellum
-This webinar has been outstanding. I feel so much more positive. The
support out there is ama2ing!- (Attendee of 'Your Questions Answered
with Dr Miles Humberstone)
In our Dystonia Matters Podcosts. people with dystonia and their families can share their
stories in their own words os well as offering useful tips fortheir listeners. During 2023 we
released Series 3 featuring Tajana. Beccy. Katie and Claire and we began releasing Series
4 in 2024 with stories from Rebecca. Hayley. Jason and Mar
In print-
We continued our commitment to producing printed moterials to reach those in particular
who could be digitally excluded from informotion and supporL As part of this we
distributed our Dystonio bAatters magazine to members 3 times across the year with
updates on activities. reseorch and news & stories from the community. We also sent out
over 1000 of our 'What is dystonia ?' booklet which includes and overview of dystonia
symptoms, causes and the different forms and types of dystonia.
"Thank you for the amazing booklet on dystonia. My husband who doesn't
have dystonia said it was very informative and simple to understand."
Additionally. we responded to 561 support enquiries by phone. email and post.
Your Voice Heard
-Influencing national policies and promoting best practice to meet the needs of the
dystonia community.
As the only UK-wide charity representing people living with dystonia. Dystonia UK uses its
position to ensure your voice is heard. Our policy work and medical network are an
important part of helping to raise awareness of dystonio ot governmental and national
level to help you get the best possible support. care and treatment. Some of the key work
in which we have been involved is summarised below:

The Dystonia Society
Report of the Trustees for the year ended 31 March
2024 (Incorporating the Directors, Report)
Dyston7'a
UK
We joined The Neurological Alliance and other member orgonisation
representatives at the #BackThelin6 petition hand in. - The parliamentary event
was attended by 22 MPS or their representatives.
We attended The Brain Charity's parliomentory drop in event to launch their
report 'lt's all in your head.. The report focussed on the importance of early
diagnosis in neurological conditions and featured o dystonia story.
We responded to the Major health conditions strategy call for evidence. We noted
neurology has not been included in this, although few neurological conditions
such as stroke and dementia have. Our response outtined the importance of
including neurological communities particularly in the context of co-existing
mental health issues {on area that has been included in the strategy}.
We co-signed the National Voices report Vision for the Future of Primary Care.
We co-signed an open Letter to Secretory of St(rte for Health and Social Care
from Huntington's Disease Association on mental health.
NeuroLrfeNow' findings. included experiences of people with dystonia. were used
to inform neurology transfomation programmes n(rtionally. influence major
Govemment health initiatives and influence healthcare practice. 'NeuroLrfeNow' is
a social research platform owned by The Brain & Spine Foundation in
collaboration with the Neurological Alliance.
We presented to around 100 clinicions. mony of whom specialise in movement
disorders. at the British Neurotoxin Network's annual meeting. highlighting the
importance of treating non-motor symptoms of dystonio.
We were asked to contribute to the updates to the NHS inform {Scotland's
equivalent of the online NHS condition page) page on dystonia.
We took part as the patient representative in a NICE Scientific Advice project for
Tordive Dyskinesia ffD}.
Magnifying the voice of the dystonia community is of vital importance. Too often we hear
that delays in diagnosis and treatment or support in education and employment are due
to a lack of knowledge and understanding of the condition in its manyfonns. Our members
provide valuable support by responding to surrfeys and giving their personal stories to
provide evidence forthe need for change. Throughoutthe year we have publicised surveys
and policy related events to provide opportunities to magnify the voice of our community.
We are members of more than 10 organisations working together on issues that will
improve lives for people living with dystonia.

The Dystonia Society
Report of the Trustees for the year ended 3 1 March
2024 (Incorporating the Directors, Report)
Dyston7"a
UK
Ensuring Dystonia Matters
Raising owareness about dystonio and Dystonia UK
It's been 40 years since Dystonia UK was first founded. and the importance of raising
awareness of dystonia is still one of our most important goals. 'What is dystonia?. is more
than just a question on repeot for our community. It impacts the time to diagnosis, access
to treatment and increases stigma and isolation. As part of our mission to combat this
every September we run Dystonio Awareness NAonth in the UK with the aim to roise as
much awareness of dystonia in the general public and across health services. During this
month:
Our social media content was seen 75.175 times
There were 9846 views of our'what is dystonia?. mini onimation
We hod 10.000 visitors to our website
We spoke to 30 MPS or their representatives at Houses of Parliament
733.731 subscribers were reached through an article in The Telegraph
We presented to around 100 injertors at the British Neurotoxin Network meeting
Outside of this awareness raising never stops and we continuously push with the dystonio
matters movement. We were pleosed to support Alliance's ocross the country with their
'Brain Awareness Week. digital campaign. attend the Dystonia Ireland patient day and
Brain Charity's Head Matters doy. and also record an interview with the BBC to be aired
on BBC Breakfast.
For the second year running we hosted the Dystonia UK Awards. Shining a spotlight on
our community. our owards applaud outstanding individuals making a difference to the
community. We were delighted to announcethe winners of the Dystonia SuperstarAward,
Masked Hero Award and Popular Podcast Award and at an awards ceremony held during
Dystonia Awareness month where we further combined 40th anniversary celebrations.
Dystonia Research
Supporting research and development for improved treatment and manogement of
dystonia
As a small charity. our support of research is often based around patient recruitment,
general guidance and support and dissemination activities. We do this to promote
research into dystonia research and to ensure that people with dystonia have
opportunities to directly contribute to research os patients or by shoring their own
experiences. In oddition to this. when we have funds available. we will support projects
with a financial contribution. We currently hold funds for research into blepharospasm will
be reviewing how best to utilise these funds when resources allow.
Every yeor we endeavour to support o wide range of support studies thot focus on
different aspects of dystonia. Exomples of attivities we have supported this year ore:
Following o pilot study which we funded a couple of years ago. a full study is
being conducted by Manchester Metropolitan University with o commercial
sponsor. This study is developing computer mochine-leaming oided imaging of

The Dystonia Society
Report of the Trustees for the year ended 3 1 K4arch
2024 (Incorporating the Directors, Report)
Dyston7'a
UK
neck muscles to enoble greater accuracy in targeting the correct muscles for
botulinum toxin injections. Dystonia UK is supporting this study by publicising the
study to recruit the volunteer patients needed for the project.
We have partnered with the British Paediotric Neurology Association ond sit on
the steering group for o project designed to establish Consensus Standards for
the use of medications in paedi(]tric dystonia. We think that in setting these
standards. it will help to improve the quality of care for children with dystonia,
ond help reassure parents. carers and clinicians alike navigating the dystonia
journey that management is on the right track
Dystonia UK hos a history of working with students on the Cltnical Psychology
doctorol course at Lancaster University to support their research projects focused
on the psychological effects of dystonia. We continue our support with the
advertising and dissemination of several projects including most recently 'How
are coping strategies used and experienced by people with cervical {neck)
dystonia?.
We supported intemationol research in attending the Dystonia Medical Research
Foundation's ￿ Intemational Symposium.
We were also pleased to share a suNey from a group of researchers in Ireland
exomining the use and effectiveness of complementary therapies. such as
acupuncture. in focol dystonia.
Additionally. we were pleased to support Medtronic's event revealing the latest
advances in deep brain stimulation devices including the Brainsense
technology.
Feedback
In 2023 we surveyed our community on theirviews of our current services and future needs
in our 'Your Voice Heard. survey. We were pleosed to capture a broad range of responses
and to understand how our service users interact with our support. For example. when we
asked respondents how sotisfied they were with each of our services, our website and
leoflets or booklets performed best with a positive satisfaction rating for each of 82%. We
plan to use the full findings to help guide decisions about our future plans and services.
We would like to take the opportunity to thank all of the people who took part and shared
their views.

The Dystonia Society
Report of the Trustees for the year ended 31 Ivlarch
2024 (Incorporating the Directors. Report)
Dyston7'a
UK
Fundraising
Despite a challenging landscope for the sector, we have had some great successes
throughout the year. This is in part due to the increase in legacy donations os well os the
increased revenue associated with Dystonia hAatters Live 2023. Activities of note include..
The London Marathon where our runner raised £2305
The Great North Run where we had 12 runners who raised over £5990
An increase in Dystonia UK members
Raising £1020 crt The Research Club's black-tie dinner and dance
An increase in support from Trust and Foundations & Corporate sponsors through
their support of Dystonio Matters Live 2023
We would olso like to take the opportunity to thank the incredible generosity of people
remembering us in their wills through Legacy gifts.
Our Future Plans
We aim to continue building on whcrt we have achieved over the last few years with a
strategy centred on four long term goals:
Connect our Community
Dystonia UK will create a connected communrty for people living with dystonia that acts
as both a source of support and movement for change. We will do this through local
support groups. national events. and by building our community of members.
Enhance quality care & support
Dystonia UK is continually working towards ensuring that no matter who they are or
where they come from. everyone living with dystonia receives a timely diagnosis. has
access to the best possible infomiation, core. and treatment and hos the tools and support
to live a good lrfe. We will continue to deliver improved infonnation resources. support
research and collaborate with relevant organisations and networks.
Reach Out, Reach All
Dystonio UK seeks to reach the whole of the dystonia community across the UK and be an
inclusive orgonisation that is accessible to all. We wont to ensure that no one who needs
our support goes without it We will aim to achieve this through maintaining a varied
offering of support. clinical outreach and increased public events.
Ensure our future
We will endeavourto increase revenue by mobilising all communities offected by dystonia.
engaging with individuals. corporations. and organisations to accelerate our progress and
maximise the impact we make. We will strive to accomplish this through campaigns.
partnerships and increosed awareness.

The Dystonia Society
Report of the Trustees for the year ended 3 1 March
2024 (Incorporating the Directors, Report)
Dyston7'a
UK
Financial Review
Our financial position for the year ending 31st Morch 2024 was a surplus of £371.077
compared to a deficit of £8.363 in the previous year. Income was £692,353 12023:
£277,412) including £414,380 of legacy income 12023: £37.8921. These exceptionally
generous bequests have allowed the Charity to deliver our services. while investing in the
future. Expenditure totalled £321.276 (2023: £285.775). This has increased due to higher
level of activity (including Dystonia Matters Live) as well as inflation.
Fundraising continues to be challenging. but the impact that we have achieved from our
new initiatives will. we hope, demonstrate the benefit of grants ond donations. We will
continue to promote the welfare of those living with the impact of dystonia and those who
support them. To do this, we need to work to ensure that our income streams enoble us to
operate at break-even financially without reliance on legacy income. Thetrustees and staff
have agreed a budget which assumes improvement in fundraising from charitable trusts,
foundations and corporate sponsorship os well as the continued support of our many
members and supporters. They will continue to monitor this income closely and to toke
action to ensure that reserves are sufficient to ensure that the charity can meet its
obligations as they fall due.
Reserves
The trustees feel it is prudent to maintain the Society's general unrestricted reserves at a
level suffi'cient to cover commitments such as property rental. creditors and other liabilities
and to reflect the relative uncertainty of income and potentiol restrictions on its use. The
level of reserves is reviewed as part of the budget setting process and at Board meetings
in conjunction with the trustees, review of the financial position.
As the Charity benefited from significant legacy income in 2023124. the trustees reviewed
The Dystonio Society's reserves policy and designated £410.000 (total legacy income
received in the year) from unrestricted reserves. This designated fund is made up of 2
elements:
£350.000 - invested separately post yeor-end to eam additional income and to
supportfuture development of our seNices forthe dystonia community, recognising
that the Charity's non-legacy income does not currently cover all its expenditure.
£60.000-to be used as o reserve for DM Live in 2025 to be released in the 2025126
Financial Year ensure that the event can go ahead as planned.
The level of unrestricted and undesignated resenies at 31st March 2024 represented 43%
of unrestricted expenditure in the year (2023 97%}.
Certain grants and donations received by the Society are given with for specific projects
or initiotives. Restricted funds held in respect of these activities are carried forward if they
are unspent or uncommitted. At 31st March 2024. funds of £157.315 were carried forword
(2023.. £108,764).
io

The Dystonia Society
Report of the Trustees for the year ended 3 1 March
2024 {Incorporating the Directors, Report)
Dyston7'a
UK
Investment Policy
Trustees reviewed the Charity's Investment policy in October 2023. Trustees agreed that
their priorities for investing surplus funds ore to eorn a reasonable return at low risk while
being able to access funds immediately if needed.
Trustees approved using o combinotion of CCLA'S COIF Charities Deposit Fund (low-risk
money market investments vio the UK'S leoding specialist Charty Fund Manager} and
bank deposrt facilities to invest legacy income when received.
Structure. Governance and Management
The Society is a company limrted by guarantee and is registered with the Charity
Commission (Number 1062595) and with the Office of the Scottish Charity Regulator
ISC042127). It is constituted by its Memorandum and Articles of Association. In the event
of the insolvency of the Society. members can be asked to pay a maximum of £10 towards
any unpaid debt
Trustees
Control of The Dystonio Society is vested in the trustees. each of whom is a member of the
Society. All decisions ore made by the board of trustees. and at the present time no sub-
committees are in operation.
Existing trustees encourage potential trustees to stand for elettion to maintain an
appropriate balance of skills and experience. Where spectfic skills are needed the
recruitment of potential trustees moy be exponded to look beyond the current
membership. Where there ore more candidotes than vocancies, trustees are elected by
the members at an AGM or by a postal ballot Trustees serve for a three-year term and
then stand for re-election. A minimum of a third of the trustees stand for re-election each
year. If less thon a third of the trustees ore due for re-election. then those nearest to the
expiry of their term stond for re-election. Trustees serve for a maximum of three terms. A
trustee may be appointed bythe Board if a vacancy becomes available during the financial
year and the trustee would then stand for re-election ot the year end. The maximum
number of trustees is twelve and the minimum is three. All trustees are given o programme
of induction and training. Further training is ovailable when required ond relevant.
Staff
The board delegates oper(rtional planning ond day-to-day management of the charity to
the Senior Leadership Team {SLT). supported by the Chair of the Board. The SLT is formed
of the Director of Fundraising and Communications and the Director of Operations and
Developrnent. This authority is delegated within approved limits. The Chair of the Board
oversees the SLT'S performance through reports and briefings. The SLT presents reports
at board meetings and as part of the planning and budgeting process. The Chair of the
Board carries out the oppraisols forthe SLT annuolly. on behalf of the board. The chair can
involve another trustee in this appraisal work should they wish.
The SLT ore supported by a small team of st(3ff. They are a highly motivated team with
dedication to the needs of people with dystonia. We have found that hybrid working is a
viable and efficient way of working as it ollows staff to work flexibly and adapt
li

The Dystonia Society
Report of the Trustees for the year ended 31 March
2024 (Incorporating the Directors. Report)
Dyston7'a
UK
appropriately to the needs of the organisation. Some trustees are more octively involved
than their govemance duties. supporting in work in responding to enquiries. developing
information and support and finance and administration. We are very grateful for this
additional support.
Risk
The trustees identify and review the mojor risks to which the Society is exposed and have
established appropriate systems to anticipote further risks that may arise. The trustees
consider that implementation of agreed actions ond procedures will significantly reduce
the probability and impact of these risks.
Principal risks & uncertainties
The most recent review identvfied the key risks to be an Income and financial risk, namely
our ability to achieve sufficient fundraising and therefore maintain financial sustoinability
and People risk. namely our ability to avoid bumout while delivering planned activities.
It was recognised that ourfinancial risk will be mitigated by significant legacy income. The
Society undertakes coreful monitoring of its projected cash flows ond levels of reserves so
that it can meet its finoncial duties. And our people risk will be mitigated by onboarding of
new staff. We continue to review our staffing to ensure we have the right organisotion.
capacity and capabilities to deliver our ambitious plans.
Public Benefit
The trustees have referred to the Charity Commission's guidance on public benefit, and
the guidance "Meeting the Charity Test" published by the Office of the Scottish Chority
Regulator. when reviewing their oims and objectives. and planning the Society's future
attivity.
12

The Dystonia Society
Report of the Trustees for the year ended 31 March
2024 (Incorporating the Directors, Report)
Dyston7'a
UK
Statement of trustees, responsibilities
The trustees {who are also directors of the Society for the purposes of company law} are
responsible for preparing the Trustees. Report and the financial statements in accordance
with applicable low and United Kingdom Accounting Standards {UK Generally Accepted
Accounting Practice (UK GAAPII.
Company low requires the trustees to prepare financiol stotements for each financial year.
Underthat law the trustees have elected to prepare the financial statements in accordonce
with UK GAAP. Under company law. the trustees must not approve the financial
statements unless they are satisfied that they give a true and fair view of the state of
affairs of the charitable company and of the surplus or deficit of the charitable company
for that period. In preparing those financial statements, the trustees are required to:
Selett suitable accounting policies and then apply them consistendy.
Observe the methods and principles in the Statement of Recommended Practice
"Accounting and Reporbng by Charities-.
Make judgements and estimates that are reosonable and prudenL
State whether opplicable UK Accounting Standords have been followed. subject to
any material departures disclosed ond explained in the financial statements.
Prepare the financial statements on the going concem basis unless it is
inappropriate to presume that the charitoble company will continue in business.
The trustees are responsible for keeping adequ(rte accounting records which are sufficient
to show and explain the charFtable company's transactions and which disclose with
reasonoble accuracy ot any time the financial position of the charitoble company and
enable them to ensure that the financial statements comply with the Companies Act 2006.
the Charities ond Trustee Investment {Scotlandl Act 2005. the Charities Accounts
(Scotland) Regulations 2006 and the charity's constitution. They are also responsible for
safeguarding the assets of the charitable company and hence for taking reasonable steps
for the prevention and detection of fraud and other irregularities.
In so far as the trustees are aware:
There is no relevant informotion of which the charitable cornpany's independent
examiner is unaware.
The trustees have taken all steps thatthey oughtto have taken to make themselves
aware of any relevant information and to establish that the independent is aware
of that infonnation.
The trustees are responsible for the molntenance and integrity of the corporate and
financial information included on the charitable company's website. Legislation in the
United Kingdom governing the preparation and dissemination of financial statements may
differ from legislation in other jurisdictions.
Small company exemption
This report has been prepared in occordance with the special provisions for small
companies under Section 15 of the Companies Act 2006.
13

The Dystonia Society
Report of the Trustees for the year ended 31 March
2024 {Incorporating the Directors, Report)
Dyston7'a
UK
Thonks
It is sadly not possible to thank every single person or organisation who has supported us,
but we hope they are all aware of our huge gratitude. We would like to take the
opportunity to give particular thanks to our outgoing Chair. Chris Bradshaw. for the time.
dedication and commitment he made to Dystonia UK during his time as both a trustee and
Chair. Additionally. we would like to thonk:
Our Patron & Ambassadors
We're privileged to work with many individuals who help us by increasing awareness ond
encouraging others to support us. Our special thanks go to:
Tully Kearney. MBE
Gemma Stevenson
Ella Middleton
Our Staff & Volunteers
We are very grateful indeed to the Society's stcrff team and volunteers. Their loyalty ond
commitment is invaluable.
Our Medical Network
We would like to thank our medical advisory group ond other professionals who have
attended meetings during the year and supported our work. They have donated both their
time and expertise which is much appreciated by our members.
Our hAembers & Donors
Thank you to everyone who joined Team Dystonia UK or renewed their membership in
2023-24. The more members we have. the biggerthe difference we can make and we are
appreciative for all of your supporL We are also grateful to everyone who supported us
with a donation this year.
Those who remembered Dystonia UK in their Will
Once again. legacies were extremely important to our charity with the gift5 we received
representing more than half our income. We are enormously grateful to all those people
who remember Dystonio UK with a gift in their Will allowing the charity to continue its
work and support people living with dystonia.
Our Fundroisers
Thank you to all the groups and individuals across the UK and beyond for your efforts to
raise funds.
Charitoble Trusts & Foundotions
We continue to value the generous support of all the grant makers that support Dystonia
UK.
Componies and other organisations
The contribution of our corporate supporters and partnership work remains vital to our
success.
14

The Dystonia Society
Report of th
rustees for the year ended 31 March
2024 (Inco
orating the Directors, Report)
Dyston7a
UK
Approv
This re
ttsbe
rt was approved by the Boord of Trustees on 12 November 2024 and signed on
Qam
Chair
Khan. MBE
Trustees
15

The Dvstonia Societv
Independent Examinerfs Report to the trustees of
The Dystonia Society I'the Compan￿}
Dyston a
UK
I report tothe charity trustees on myexamination of the accounts of the Company forthe year ended
31 March 2024.
Re5ponslbilities and basis of report
As the charIt￿S trustees of the Company (and also its direttors for the purpose5 of company lawl you
are responsible for the preparation of the accounts in accordan￿ with the requirements of
the Companies Act 2006 {'the 2006 ACY).
Having satisfied myself that the accounts of the Company are not required to be audited under Part
16of the2006Actandare eligible forindependentexamination, I report in respect of myexamination
of yourcharivsaccountsascarried outunderthe Charities Act 2011,s145('the2011AcYI. In carry
out my examination I have followed the Directions given bythe Charity Commission under s14515)(bl
of the 2011 Art.
Independent examinerfs statement
Since the Companrfs gross income exceeded £250.OOOyour examiner must be a member of a bodv
listed in s145 of the 2011Act. I confirmthatl am qualified toundertake the examination because l am
member of the Institute of Chartered Accountants in Engknd and Wales, whith is one of the listed
bodie5.
I havecompleted my examination. I confirm that no matters have come to my attention in connection
with the examination givin8 me cause to believe that:
(11 accounting records were not kept in re5peLt of the Company as required by settion 386 of the 2(X
Act.. or
12) the accounts do not accord with those records; or
(31 theaccountsdonot complywiththe accountingrequirements of section 396 of the2006Actother
than any requirement that the accountsgive a'true and fairview which is nota mattercon5idered as
part of an independent examination; or
14) the accounts have not been p￿pared in accordance with the methods and principles of the
Statement of Recommended Practice for accounting and reporting by charities applicable to charities
preparing their accounts in accordan￿ with the Financial Reporting Standard applicable in the UKand
Republic of Ireland {FRS 102).
I have no concems and have come across no other matters in connection with the examination to
which attention should be drawn in this report in order to enable a proper understanding of the
accounts to be reached.
Michael A Williams ACA..
Chartered Accountant
30 Retford Drive. Sutton Coldfidd. West Midlands. B76 IDG
Date: I, AZ
16

r*1
tyJ
O ¢
m e4
In ffi
ID 14
m ffi Ln N
•X)
Ln
In o
ui
Ln

The Dystonia Society
Balance sheet at 31 March 2024
Dyston7'a
UK
Notes
31 M•rch 2024 31 March 2023
Non-curr•nt au•ts
Tan&4ble fixed assets
Investment in subsidiary company
Curr•nt a**•ts
Debtors
Cash at bank and in hand
100,455
636,559
737.014
46,479
306,082
352,561
Cr•dltors.' amounts falllng du• wfthln on• y•ar
io
{34,7201
121,3441
N•t ¢urr•nt •M•ts
702,294
331,217
N•t •sxts
702,295
331.218
R•prnMnt•d by
General funds
Desi8nated funds
Totsl unr•stri¢t•d funds
Restricted fvnds
134,980
410.1)Xi
544.980
157,315
222,454
222.454
108,764
14
Tot•1 fund•
12
702,295
331.218
The Trustees are satisfied that the Charitable Company is entitled to exemption from the
provisions of the Companies Act 2006 {the Act) relating to the audit of the financial
statements for the year by virtue of section 477. and that no member or members have
requested an audit pursuant to section 476 of the Act
The Trustees acknowledge their responsibilities for
ensuring that the charitable company keeps adequate accounting records which
comply with section 386 ofthe ACL and
preporing financial stcrtements which give a true and fairmew of the state of
affairs of the charitoble company os at the end of the financial yeor and of its
results for the finoncial year in occordonce with the requirements of sections 394
and 395. and which otherwise comply with the requirements of the Act relating
to financial statements. so far as applicable to the charitable company.
These financial statements have been prepared in accordance with the special provisions
for Small Componies under Port 15 of the Companies Act 2006.
18

The Dystonia Society
Bal
nce sheet at 31 March 2024
Dyston7a
ar Khan. MBE
of Trustees
Robert Semple
Treasurer
Company Registration Number. 03309777
The notes on pages 20 to 29 form port of these financial stcrtements.
19

The Dystonia Society
Statement of cash flows for the year
ended 31 March 2024
Dyston7"a
UK
2024
2023
N•t incom•/(•xp•nditur•) •# pw th• stst•m•nt of fin•net•l *ctlvrli•8
Adjustments for
Depreciation charges
Interest from investments
Ilncreasel/decrea5e in debtors
Increase/ldecreasel in creditors
N•t c•$h 8•n•r•t•d /(us•d) in opernling athitxs
371,077
(8,364)
{8,9181
153,9761
13,376
321,559
11,383)
{28,9531
1,494
(37,2061
C•$h tlows from Invutln8 aCtlvit•
Interest from investments
Purchase of equipment
Net ea¥h provid•d by/(uMd in) Inv•stin8 •¢tlvfti
8,918
1,383
8.918
Net Incr••M/(d•cr••s•) In e•¥h and c•¥h •quiv•hnts
Cash and cash equivalents at the be8innin8 of the year
C•¥h •nd u•h •quival•nts •t th• •nd ofth• yur
330,477
306,082
636,559
(35,823)
341,905
Ch•ek total
636.559
306,082
20

The Dystonia Society
Notes to the fi nancial stotements for the year
ended 31 March 2024
Dyston7'a
UK
l. Accounting policies
al Basis of preparation of financial statements
The financial statements have been prepared in accordance with Accountin9 ond Reporting
by Charities: Statement of Recommended Practice opplicable to chorities preparing their
accounts in accordance with the Financial Reporting Standard applicable in the UK and
Republic of Ireland (FRS 102} (effective l January 2015), the Companies Act 2006 and the
Charities and Trustees Investment {Scotland} Act 2005.
The Charity constitutes o public benefit entity as defined by FRS 102.
The accounts include the balances and transoctions of 30 of the Society's support groups.
The preparation of the finoncial accounts requires the Society's management to make
reasonable and prudent judgements, estimates and assumptions that affect the amounts
reported for assets and liabilities as at the balance sheet date and the amounts reported for
income and expenses during the year. These judgements are detailed in these accounting
policies.
b) Income
Income is received by way of grants. donations and subscriptions. The income from fundraising
ventures is shown gross in the period in which the event occurs. with the associated costs
included in costs of raising funds. From time to time the Society receives donations of goods and
services in kind and where there is a measuroble material value to the Society. which can be
ascertained with reliability, they are included as both income and expenditure. Equiprnent given
for use by the Society is included as a donation at estimated value when received.
Legacy income is included in the period in which it is received. or, if earlier, the period in which the
Society receives confirmation of entitlement ond amount. If there is uncertainty as to the amount
and timing of payment the legacy is not recognised as income. but disclosed as a contingent
asset
Subscriptions are included in the accounts in the year in which they are received.
Revenue gronts are credited to incoming resources on the dote they ore received or when they
ore receivable. unless they relate to a specific period, in which case they ore deferred.
c) Expenditure
Expenditure is recognised on an accruals basis and includes VAT which the charity cannot
recover.
Direct expenditure on charitable octivities is allocated to the Society's objectives in five streams
of work.
Support costs ore allocated to each of the charitable activities (and to the associated restricted
funds) based on stoff salary costs.
Costs of raising funds relate to expenditure incurred in approaching and facilitating people and
organisations to contribute financiolly to the Society's work.
Grants payable are accounted for when paid or when the Society has, by communicating o
commitment. creoted a valid expettotion that it will make future payments.
21

The Dystonia Society
Notes to the financial statements for the year
ended 31 March 2024
Dyston7"a
UK
Those costs shown as govemance relate to the manogement of the Society's assets.
orgonisationol administr(rtion and compliance with constitutional and statutory requirements.
dl Pension contributions
The Society makes contributions to defined contribution personal pension schemes held by
employees. Contributions are a percentoge of gross salary and are charged to the some restricted
or unrestricted funds. and in same the accounting periods. as the related salary costs.
e) Tangible fixed assets
Items of equipment are capitalised if their cost exceeds £l.000 and if they have an expected
useful life of more than two yeors. Depreciation is then charged crt a uniform rate over that life.
f) Operating leases
Rentals applicable to operating leases where substantially all the beneffts and risks of ownership
remoin with the lessor are reflected in the Stotement of Financiol Activities on a straight-line basis
over the period of the lease.
g) Fund accounting
Restricted funds are to be used for specific purposes as stated by the donor. Expenditure which
meets these criterio is chorged to the fund.
Designated funds are unrestricted funds earmarked by the trustees for specific purposes.
Unrestricted funds are donations and other incoming resources receivable or generated for
charitable purposes, in line with the objects of the Society. but not restricted to any specific
activity.
h) Financial instruments
The chority only hos financial assets and financial liabilities of a kind that qualrfy as basic financial
instruments. Basic financial instruments are initially recognised at transaction value and
subsequently measured at their settlement value.
Income and expenditure account
A separate income and expenditure occount has not been prepared as the figures comprising net
income for the year shown in the Statement of Financial Activities give the infomotion required
under the Companies Act 2006, together with details of other recognised gains and losses.
22

• w m w)
rl I Ill

(0 o
Ch
¢ Ln th f+j ¢ rj)
10
w) v m
u)
(rf> rri
c¢
fr o
Lri
mv
m o * f44
ck

The Dystonia Society
Notes to the financial statements for the year
ended 31 March 2024
Dyston7'a
UK
Staff costs
2024
2023
Salaries and wages
Social security costs
Pension contributions
131,880
8,662
6,808
147,350
133,537
8,957
7,11
149,594
Staff employed under service contracts
Other employment and trainin8 Costs
Total employment and training costs
16,198
163,548
10,512
149.594
The averoge number of employees during the year was 3.6 (2023: 4.1) of whom 3.1 were full-time. No
employee eamed more than £60.000 during the year {2023: nil).
The Society contributes to defined contribution personal pension schemes. The ossets of these schemes
are held separately from those of the Society in independently administered funds. At 31st March 2024.
the Society owed £891 (2023." £827) to these pension schemes.
6 Trustees. remuneration and expenses
The trustees received no remuneration for their seniices 12023: nil). Four trustees (2023: two) were
reimbursed £811 for travel expenses and other costs (2023: £249).
Non-curr•nt assots
Office equipment and fixtures
Cost at l April 2023
Additions
Cost at 31 March 2024
22,317
22,317
Depreciation at l April 2023
Chargefor the year
Depreciation at 31 March 2024
22,317
22.317
Net book value at l April 2023
Net book v•lu• at 31 March 2024
Inv•strn•nt in subsidiary
Investment in Dystonia UK Ltd
25

The Dystonia Society
Notes to the fi nancial statements for the year
ended 31 March 2024
Dyston7"a
UK
Debtors
2024
2023
Prepayments
Other debtors and accrued income
11,780
88,675
100,455
10,087
36,392
46.479
Cash at bank and In hand
2024
2023
Bank investment accounts
Other bank and building society accounts
Petty cash and groups
446,059
189,017
1,483
636,559
187,354
117,039
1,689
306,082
10
Credltors: Amounts falling du• wlthin one y•ar
2024 .
2023
Taxation and social security costs
Other creditors
Accruals 4 Deferred Income
3,805
15,046
15,869
34,720
3,122
12,426
5,796
21,344
11
Commitm•nts und•r opernting leas•s
2024
2023
Office Lease + Service Charge
12,436
21,690
26

The Dystonia Society
Notes to the financial statements for the year
ended 31 March 2024
Dyston7'a
UK
13. Contingent liabilities
No contingent liabilities exist as of 315t March 2024 and the date of this Annual Report & Accounts
14 Related party transactions
There have been no related poty transactions in the year ending 31st March 2024 (prior yeor nill.
28

•w
O Ln
Ln 40
C• rw
•• • w
r*J
rri¢