Dyston7"a
UK
The Dystonia Society
A company limited by guarantee
Trustees Report & Financial Statements for the year
ended 31 March 2025

The Dystonia Society
Report of the Trustees for the year ended 31 March 2025
(Incorporating the Directors, Report)
Dyston7"a
UK
Contents
Reference and administrative information
Report of the trustees
3-21
Independent examinerfs report
22
Ststement of financial activities
23
Balance Sheet
24-25
Statement of cash flows
26
Notes to the financial statements
27-36

The Dystonia Society
Report of the Trustees for the year ended 31 March 2025
(Incorporating the Dirertors. Report)
Dyston7"a
UK
Reference and administrative information
Charity registration number
1062595 {England and Wales) and SC042127 (Scotland)
Company registration number
03309777
Patron
Tully Kearney, OBE
Trustees and Directors
Amit Batla
Emily Birden
Timothy Gannicliffe
Ross Grant
Qamar Khan, MBE (Chair from I" April 2024}
Antonella Macerollo
Sophie Norman
Fernanda Perez
Penny Ritchie Calder, MBE
Robert Semple
Secretary
Roger Edmonds FCA
Independent Examiner
Michael Williams ACA
30 Retford Drive
Sutton Coldfield
B76 IDG
Medical Advisers
Prof. Mark Edwards
Mr. Daniel Ezra
Ms. Lucy Hicklin
Dr Jean-Pierre Lin
Dr. Marie-Helene Marion
Dr. Kathryn Peall
Prof. Tom Warner
Bankers
CAF Bank
Kings Hill
West Malling
Kent ME19 4TA
Registered Office
3 Floor
89 Albert Ernbankment
London
SEI ￿P
Bank of Scotland
14116 Cockspur Street
London SWIY 5B

The Dystonia Society
Report of the Trustees for the year ended 31 March 2025
(Incorporating the Dirertors. Report)
Dyston7'a
UK
Objectives & Artivities
The trustees, who are also the dirertors of the company. submit their report and the financial
statements of The Dystonia Society {"the Sociev) for the year ended 31 March 2025 on the basis of
the accounting policies set out in Note I to the fi'nancial statements, and comply with the
requirements of Accounting and Reporting by Charities: Statement of Recommended Practice
applicable to charities preparing their accounts in accordance with the Financial reporting Standard in
the UK and Republic of Ireland IFRS1021 {effective l January 2015) (Charities SORP. FRS1021. The
reference and administrative information on the previous page forms part of this report.
Principal Objective
The Society, as derived from the objects set out in our Articles of Association, are to promote the
welfare of people who living with any form of the neurological movement disorder known as
dystonia, or from similar or related conditions and to advance the education of the public about all
aspects of the said conditions. Under our operating name of Dystonia 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 UK.
About Dystonia UK
We are the only national charity dedicated to supporting people living with dystonia across the UK.
Dystonia is a neurological movement disorder estimated to affett at least 100,000 people in the UK.
It is the third most common movement disorder. Dystonia is caused by incorrect signals from the
brain resulting in uncontrollable muscle spasms, which can, for some, be painful. It can affert any
region of the body. Oystonia 15 a lifelong condition, which can affect both adults and children, and
currently has no cure. There are several treatments available that can help relieve the symptoms and
scientists around the world are actively pursuing research toward new therapies.
Established in 1983 as The Dystonia Society, by a small group of people living with dystonia, in 2019
we rebranded to become Dystonia UK to better reflect ourgrowing community. For over 40 years
we have worked with the dystonia community. never forgetting our founders. aim to support all
people living with dystonia. Being 3 patient led organisation is still at the heart of our ambitions
today and we currently have 13 local support groups run by volunteers from the community and a
membership of 1454 including 11 lifetime members.
We remain committed to our mission:
"We exist to give hope and support to everyone living with dystonia and to create UK and
worldwide awareness."

The Dystonia Society
Report of the Trustees for the year ended 31 March 2025
(Incorporating the Directors, Report)
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Review of Activity
During year 2024-25 we have continued to evolve to meet the needs of both members and the wider
dystonia community. Developed with and for our community, our strategy sets out what we want to
achieve. In response in particular to the 2023 Your Voice Heard survey we committed to further
development work of our Strategy. To greater serve the dystonia community, our strategic goals for
the year were adjusted and have been:
Connect our Community
Dystonia UK will create a connected community for people living with dystonia that acts as
both a source of support and movement for change.
Enhance quality care and support
Dystonia UK will ensure 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 information,
care, and treatment and has the tools and support to live a good life.
Reach Out, Reach All
Dystonia UK will reach the whole of the dystonia community across the UK and be an
inclusive organisation that is accessible to all. We will ensure that no one who needs our
support goes without it.
Ensurlng our future
We will increase revenue by mobilising all communities affected by dystonia, engaging with
individuals, corporations, and organisations to ac￿lerate our progress and maximise the
impact we make.
The Annual Report of the Trustees for 2024125 is set out under these four strategic goals.
Connect our Community
We have continued to build a connected, empowered communityfor people living with dystonia- one
that offers vital support and drives meaningful change through a wide range of activities. This year,
we:
Rebuilt connections after Covid-19 through our local support group networks
Took awareness to Parliament with an event at the House of Lords
Continued our commitments to members
Celebrated our community at The Dystonia UK Awards 2024
Delivered direct support through our new Hospital Roadshow initiative
Rebuilding and reconnecting after Covid-19
We greatly invested in our local support group network with the appointment of a new Community
Project Officer. Thanks to their efforts, several group5 that had not met since before the pandemic
resumed their activities. We also boosted group visibility through increased marketing, enhanced our
volunteer sUPPOrt resources, and reinstated regular coordinator catch-ups to further build
relationships and shared learning across our network.

The Dystonia Society
Report of the Trustees for the year ended 31 March 2025
(Incorporatfng the Dirertorf Report)
Dyston7'a
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"I really enjoy the social side of being with others with the same
copidition,. we ha ve all become friendsl
Kent group attendee
Taking awareness to Parliament
In September, during Dystonia Awarene55 Month. we gathered experts, clinicians. and advocates at
the House of Lords for a powerful discussion on how our community can raise its collective voice. This
inspiring event helped generate fresh ideas and built momentum for raising awareness as a united
community- reminding everyone in the room that dystonia must no longer be overlooked.
Championlng members
Our membership remained strong throughout the year, with 1,454 individuals standing with us. We
continued to keep members connected and informed through Dystonia Matters
our magazine
available both digitally and in print. Members also played a direct role in shaping our governance by
voting on trustee ratifications, ensuring representation and transparency at the heart of our
organisation.
Celebrating our community
We were delighted to host the Dystonia UK Awards 2024 for the third consecutive year. These awards
shine a spotlight on the exceptional individuals making a difference within our community. In front of
our largest audience yet, we proudly recognised the winners of the Dystonia Superstar Awards
(England, Wales, Scotland and Northern Ireland), the Masked Hero Award, and the Popular Podcast
Award. New categories this year included the Young Champion. Fundraiserof the Year, and Volunteer
of the Year. helping us to celebrate a wider breadth of contributions from across our network.
Delivering direct support
This year marked the exciting launch of our Hospital Roadshows - a brand-new initiative bringing
Dystonia UK into NHS hospitals across the country. Our team visited Salford Royal Hospital
(Manchester), The Walton Centre {Liverpool), and Shawbirch Medical Centre (Telford), where we
reached patients, clinicians, and the public face-to-face, raising awareness, providing trusted
information, and creating meaningful connections with those afferted by dystonia.
"You did an excellent job ipp Manchester at Salford Royal Hospital,
Dystonia a￿are￿eSS was well spread that day. A remarkable eye-
catching display and sparkling atmosphere. For some it will be the
best day of their li ves because they have discovered Dystonia UK
and that the Manchester group exists. '
Elaine, Map7chester group member
Wherever our communlty is, we're right there beside them. Together, we are building a stronger.
more connected movement for change.

The Dystonia Society
Report of the Trustees for the year ended 31 March 2025
(Incorporating the Dirertors, Report)
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Enhance quality care and support
Everyone with dystonia deserves answers, access to effective treatment, and support to live life on
theirown terms. This year, we made real progress, taking your voices to policymakers, shaping clinical
conversations, and championing research that puts your needs first. This is how we made impact
happen:
Raised awareness and visibility of dystonia at major clinical events
Drove change in national policies and promoted best practice
Supported research putting patients at the centre
Promoting the needs of the communlty
We renewed our investment in attending exhibitions and conferences to raise awareness among
medical professionals and industry leader5. Highlights included:
Presenting to around 100 clinicians, many of whom specialise in movement disorders, at the
British Neurotoxin Network's annual meetin& emphasising the importance of collaboration
with patient communities.
Guest speaking at the East Hants Primary Care Network meeting, sharing best practice with
social prescribers, pharmacists, care coordinators, and youth wellbeing coaches.
Our Director of Operations and Development attendingthe Association of British Neurologists
conference, in partnership with The Neurological Alliance, sharing early insights from the My
Neuro Sur4ey.
Exhibiting at several professional events including the annual conferences of the DBS Nurse
Association, the Association of British Neurologists Movement Disorder specialist interest
group, and the Royal College of Paediatrics and Child Health.
hanks so much for attending our meeti￿9 yesterday-l know the
teafft found it really interesting finding out about dystonia. A few
cogs tur￿l￿g regardi￿￿ patients they see and if dystonia may be
something that haS￿'t been considered."
Hannah, Digital TransformatiOP7 Lead. East Hants PCAI
Inlluencing national polities
As the only UK-wide charity representing people living with dystonia. Dystonia UK continues to use its
unique position to ensure the voices of those affected are heard at every level of decision-making.
During Dystonia Awarene55 Month, we arranged a key meeting with Dr Niran Nirmalananthan, the
National Clinical Dirertor of Neurology at NHS England. This provided an important opportunity to
discuss the most urgent priorities facing the dystonia community and to advocate for greater
recognition and resourcing.
We continued our strongsupport forThe Neurological Alliance's#BackThelin6 campaign, which called
fora dedicated Neuro Taskforce. That campaign saw a significant success in November. when the new
UK Neuro Forum was officially announced. We were proud to attend the celebration of this milestone,

The Dystonia Society
Report of the Trustees for the year ended 31 March 2025
(Incorporating the Directors. Report)
Dyston7"a
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where our Patron, Tully Kearney OBE. delivered a powerful keynote speech highlighting the lived
experience of dystonia. We were also pleased to continue the impart of this work by attending a
workshop in advance of the first UK Neuro Forum meeting providing the opportunity for us to share
deeper insights.
Throughout the year, we shared surveys and promoted policy-related events that offered
opportunities for the community to speak up and share eXperien￿S. A total of 658 people with
dystonia completed My Neum Survey. contributing powerful evidence of the need for better seniices.
We were also involved in the surrfevs steering group, helping to shape its design and inform the
communications Strategi around its findings, ensuring it reflectsthe reality of our communttvs needs.
We worked behind the scenes too. Through our membership in over ten alliances and coalitions, we
helped shape responses to national consultations, co-signed open letters, and called directly on
ministers to invest in neurological research. We also developed and Submitted our own response to
the NHS 10-Year Plan, using this as an opportunity to spotlight some of the specific challenges faced
by people with dystonia includingthe urgent need for better workforce planning, improved transitions
from paediatric to adult care, and stronger integration between seNices.
Finally, we took these messages to Parliament. In January. alongside rnernber and Neuro Alliance of
Scotland trustee, DK McPhee. we represented the dystonia community at the Neurological Alliance's
Parliamentary Neuro Reception. There. we spoke to 35 MPS or their representatives. putting the
realities of dystonia front and centre in political conversations.
Supporting dystonia research
Our research support spans prattical assistan￿ and partnership working to ensure people with
dystonia are included in shaping future treatments. We believe research should work forthe dystonia
community- and this year, we supported projects that do exactly that.
We helped recruit 201 participants for a Manchester Metropolitan Unlversity study
developing machine-learning imaging for more targeted botulinum toxin treatment.
Remained involved in the British Paediatric Neurology Assotiation's steering group to set
Standards for paediatric dystonia medication - improving confidence in care for families and
clinicians.
Continued our collaboration with students on the Clinical Psychology doctoral course at
Lancaster University, most recently promoting a study exploring the use of self-compassion
apps in people with neck dystonia.
shared a survey from a group of UCL Queen Square Institute of Neurology researchers
examining access to physiotherapy services, helping understand barriers and enablers to
treatment for our community.
We will never stop pushing for better diagnosis, better treatment, and better lives for everyone
living with dystonia.

The Dystonia Society
Report of the Trustees for the year ended 31 March 2025
(Incorporating the Dirertors. Report)
Dyston7"a
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"I felt it was afternoon well spent as the research will
ultimately lead to the trainiL7g of more clinicians who understamd
dystOk7ia ak7d are able to treat it and the ability of medical
professionals to build up a library of images of the neck for each
patient so that injections will be more efftctive."
Chris, MMIA study participant
Reach Out. Reach All
We aim to reach the entire dystonia community across the UK. making sure that whoever you are
and wherever you live, you can access our support, so no one has to face dystonia alone. This year
we took meaningFul action to expand our reach and deepen our impact.
We magnified the voices of those living with dystonia on national platforms
We expanded and improved how people access vital information and support
We ran impactful campaigns to spread the message that Dystonio Motters
Magnifying the voice of the community
People with dystonia often experience stigma and isolation. Thays why we used our platform to
increase understanding and visibility, ensuring the experiences of our community were heard and
seen on a national stage. In 2024, our Director of Fundraising and Communications appeared live on
BBCBreokfvst, bringing dystonia to millions of viewers. We were additionally featured in The Guordian
during Brain Awareness Week, and our digital reach soared with our social media content viewed
302,359 times and 109,074 visitors to our website over the year. These moments helped more people
than ever understand what dystonia is- and why support matters.
"Well done Dystonia UKI Brilliant job on awareness of dystonia. -
Lisa, Online member
Enhancing information delivery
Our Reach Out Reach All programme continued to modemise how we deliver support and advice,
ensuring that our resources remain accessible, inclusive, and available in the format that works best
for each person.
In-per50n: We met people at Disability Aworeness Day in Warrington and The Brain Charitfs
open day, Heod Matters, and continued our local support groups across the UK. These
meetups
whether strurtured or social
create essential spaces for people to share
experiences and connect. This year we ran 34 meet ups in 12 counties.
In print: We remained committed to physical resources for those who may be digitally
excluded. Our Dystonia Matter5 magazine, regular mailings, and the widely distributed What
is Dystonia? booklet helped keep the community informed and supported. We additionally

The Dy5tonia Society
Report of the Trustees for the year ended 31 March 2025
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invested more resource into clinical outreach to ensure our materials are distributed to
patients more regularly when attending clinics.
Online: Our website remained the go-to source for information, with over 109,000 views. We
were proud to launch Season 4 of our Dystonio Motters podcast. sharing the real and honest
stories from Rebecca, Emma & Gareth and their daughter Hayley, Jason, Mark, Emma, and
Lola.
Direct support." We ￿SpOnded to 561 support enquiries across phone, email, and post,
offering per50nalised guidance to people when they needed it most.
toni
UK has beep7 a massive support throughout ffty life. If
you have dystonia or know someone. I highly recon7mend e￿gagIng
with them and get on their newsletter. They offer friendly support
to helpful information about the cop7dition."
Joe. Forffter podcast guest
Amplifying our message
In September, we ran Dystonia Awareness Month 2024- a powerful reminder of what our community
can achieve when we come together with lived experience, expertFse, and shared purpose.
Before the campaign began, we launched a brand-new awareness guide packed with tools and
templates to help individuals and supporters spread the word locally, ensuring greater impact from
our collective awareness raising.
We then launched the month with a reception at the House of Lords, where clinicians, researchers,
and industry leaders gathered to explore new waysof raising awareness and improving outcomes. The
conversations held there set the tone for a month of attion.
Soon after, we joined our incredible #TeamDystoniaUK runners at the Great North Run. Despite the
rain, spirits soared as volunteers and supporters cheered them on. Every step taken and every pound
raised helped amplify our cause.
Local meetups in the North East, Oxford, Kent, and Lancashire & Fylde showed the importance of peer
support. These event5 offered safe, welcoming spaces for people to connect, share, and feel
understood.
We continued our advocacy momentum going- meetingwith Dr Niranjanan Nirmalananthan, National
Clinical Director for Neurology at NHS England, and speaking at the British Neurotoxin Network
meeting in Oxford to highlight issues of access and collaboration.
The month ended on a high note with The Dystonia UK Awards 2024, celebrating the remarkable
individuals who inspire and support our community. A standout moment was our Patron, Paralympic
Gold Medallist Tully Kearney OBE, sharing her journey to double gold in Paris 20241
Throughout the month, and every day of the year, we are proud to Stand with and for every person
Ilving with dystonia.

The Dystonia Society
Report of the Trustees for the year ended 31 March 2025
(Incorporating the Directors, Report)
Dyston7"a
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Ensuring our future
We are building a resilient, sustainable org3nisation. That means investing in people, partnerships,
and infrastructure, and working hand in hand with our community to maximise impact and accelerate
progress. This year we:
Invested in new roles and infrastrutture
Worked with our community and partners to raise vitsl funds
Advocated for greater awareness through national collaborations
Increased recognition of our organisation across sectors
Investing in our organisation
We established new roles, including our Community Project Officer, which is helping us to develop
and grow our support services, volunteer capacity and outreach work. We created a new
Communications Officer role and recruited a new Fundraising Officer bringing additional capacity to
the team.
We develop staff skills through regular training and this year updated our Induction training to ensure
new members of the team are supported in their success. Our d1￿CtorS took part in advanced
Safeguarding training and attended the Charity Times Leadership conference. Ensuring that our team
can best support our community. this yearthey attended training on Neurodiversity and to reduce the
effects of stress in the workplace we introduced new quarterly Mental Wellbeing sessions.
A remuneration review, benchmarked our current charity salaries against those in other similar sized
charities across the sector, taking into account specific roles and responsibilities and making changes
as relevant to ensure the charity is a competitor in the sector. Necessaryequipment upgrades included
updated laptops for some staff providing the team with the tools they needed to carry out their work.
We also deepened our investment in volunteering, beginning development of a volunteer strategy,
reinstating coordinatorcatch-ups, creating new event roles, and recruiting an Office Admin Volunteer.
Finally, we proudly welcomed our new Chair, Q Khan MBE, who brings deep experience and passion
following his work as a Dystonia UK Ambassador.
"I love atte￿ding events where I can get the word out about dystonia. I
rece￿tlY helped a pharmaceutical company in Chester with Dystonia IAK to
show the employees how their products affect the patients and to answer
questions about my experiences with botulinum toxin injections.-
Mdrgie. Events Volunteer
io

The Dystonia Society
Report of the Trustees for the year ended 31 March 2025
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Worklng together to fundraise
Once again, our amazing community played a huge and highly valued role in raising funds to 5UStain
our essential services. We raised a fantastic £35,451 through community fundraising and events. Our
Team Dystonia UK runners, including our patron Tully Kearney, OBE, raised all important awareness
at the TCS London Marathon. 10 runners also took to the streets of Newcastle. raising £5,579 through
the Great North Run. Our 3 runners. the winner of the Dystonia Superstar Award (England). Manoli,
alongside Ryan and Mark in memory of Ryan's son Bailey, also took on the Royal Parks Half Marathon
raising £3019.
Members of the community also took on some of their own incredible fundraising challenges including
the K2B walk raising £2600. Our Fundraiserof the Year, Lola. ventured into the Peak district and having
complete a rather impressive 16 miles of walking also raised £710.16
Encouragingly, we have seen strong growth across several other income streams
Facebook
fundraising has increased by 233%, donations by 59%, and money raised by groups by 43%. We
continued to raise funds through sales of eye-catching merchandise and were pleased to achieve sales
of £2041.
Our Spring raffle raised over £1.140 and we were encouraged to see so much engagement from our
community. We are grateful to our corporate partners for their sUPPOrt with prizes. We loved joinin8
The Research Club's final networking night of the year, raising awareness and all important funds for
Dystonia UK. Huge thanks to Tara and Bob in particular for their supportl
Our members continue to extend support to the wider community, raising £34,240 through their
generous subscriptions and donations. We are especially grateful too to those who chose to
remember us in their wills through legacy gifts.
"Dysto￿la UK helped me in so ways. from telling me that my
family and l aren't alone, to supporting me with setting up ffty
fundraising event. the 7th of August 2024, 1 left my house and
my plan was to do a 15 mile walk 7 hours. but it ended up 16.41
miles in S hours 6 minutes.-
Lola, Dystonia UK Fundraiser of the Year 2024
Collaborating for success
We continued to build strong partnerships across national networks including The Neurological
Alllance, The Neurological Alliance of Scotland, Wales Neurological Alliance. Northern Ireland
Neurological Charities Alliance, National Voices, The Alliance Scotland, Medical Technology Group.
5pecialised Health Care Alliance and Disability Benefits Consortium to champion the needs of the
dystonia community and influence decision makers.
We deepened our relationships With Phamiaceutical and Medical Tech companies to further advance
outcomes for the dystonia community. We were delighted to attend Medtronic's annual conference
and welcomed the opportunity for our Director of Fundraising and Communications along with
Dystonia UK member, Margie, to speak at Ipsen Phamiaceutical's annual conference on improving
access to botulinum toxin services.
We also worked with a number of leading specialist clinical groups including the Association of British
Neurologists Movement Disorder specialist group, DBS Nurse Association and British Neurotoxin
li

The Dystonia Society
Report of the Trustees for the year ended 31 March 2025
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network - we are thankful to all of the professionals supporting our involvement in these groups for
helping to further our cause. As well, we greatly appreciate the support of our medical advisorygroup
and wider medical networks.
We continued to work with our Patron and Ambassadors and are grateful for their ongoing
commitment to use their platforms to improve awareness of dystonia. We were especially grateful to
Tully Kearney OBE, who spoke at both The Neurological Alliance AGM and our Awards ceremony,
sharing her story of double gold in Paris.
Special thanks to Teresa for sharing her story during our BBC Breakfast appearance, and to all who
used our Awareness Raising Guide to support our message: Dystonia Matters.
Strengthening our visibility
We expanded our presence at professional events and exhibitions, invested in clinical outreach, and
deepened connections through the launch of our Hospital Roadshow initiative. Additionally we sent
out monthly e-new51etters and used our social media platforms and website to share updates on our
work. These activities strengthened our visibility and reinforced our role as a trusted advocate for the
dystonia community.
Dystonia UK has stood beside the community for over 40 years - and we're building the future to
stand strong for decades to come.
Impact
Our Year in Numbers".
We estimate 340 people attended one of our meet ups, accessing direct support local to
them.
We reached 141 people through the launch of our Hospital Roadshows initiative.
9 winners were celebrated at The Dystonia UK Awards 20241
We reached over 400 professionals and members of the public through exhibition stands at
conferences and events raising vital awareness.
658 people living with dystonia took part in My Neuro Survey.
We reached at least 29,449 people through our BBC Breakfast interviewl
Our Dystonia Awareness Raising guide was viewed 426 times.
Our Info Hub, a digital source of information resources received 1,685 visits.
30 volunteers supported our work!
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Activlties mapped against Dystonla UK'S objectlves
Enhance
quality care
and support
Activity
Connect our
community
Reach Out,
Reach All
Ensure our
future
Local 8UPPOrt
group meet ups
The Dystonia
UKAwards 2024
Hospital
Roadshow
initiative
Dystonia
Matters
magazlne
Dystonla
Matters
podcast
Dlgital &
printed Info
resources
Dystonla UK
Membership
Dystonia
Awareness
Month
Parliamentary
afternoon tea
Attending
exhibitions &
conferenc8S
Promoting My
Neuro survey
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Report of the Trustees for the year ended 31 March 2025
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Activities mapped against Dystonia UK'S objectives
Enhance
quality care
and support
Activity
Connect our
community
Rea¢h Out,
Reach
' Ensure our
future
Partnerships
with alliances
Consultatlon
responses &
lobbyingwork
Supporting
research
projects
Press & medla
work
Responding to
enquiries
Awareness
raislng guide
Clinical outreach
E-news and
social media
presence
Investments In
staff and
Infrastructure
Supporting
fundraislng
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The Dystonia Society
Report of the Trustees for the year ended 31 March 2025
(Incorporating the Directors, Report)
Dyston7a
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Activities mapped against Dystonia UK'S objectives
Enhance
quality care
and support
Activity
Connect our
community
Reach Out.
Reach All
Ensure our
future
Collaborating
with medical
groups
Partnershlps
with pharma
and med techs
Engagement
with Patrons &
Ambassadors
Our Future Plans
Together with our community, we will continue to build on the progress we have already made. As
the only national charity supporting people living with dystonia, we recognise the need to prioritise
carefully how our limited resources are used. Our focus will remain on the services and activities that
deliver the greatest impatt for the dystonia community.
We will amplify our service delivery through targeted investrnent and new projects. By designing and
delivering information resources across a variety of formats {including print, digital and in-person) we
will ensure our materials are relevant, inclusive and accessible to the whole dystonia community. We
will continue to grow our network of support groups, and by increasing volunteer recruitment and
strengthening volunteer resources, we airn to expand our influence and impact in local communities.
We will focus on core operations to ensure people living with dystonia, health professionals and the
public receive timely, high-quality 5UPPOrt. This indudes investment in our infrastrurture and IT
Systems to increase resilience and responsiveness.
Through our Hospital Roadshow initiative we will extend our reach. deepen our understanding of the
needs of the dystonia community across the UK. and ensure our information and 5UPPQrt services are
delivered where they are most needed. At the same time, we will continue to build our medical
network and enhance our clinical outreach via events and partnerships.
In research, we will develop our strategy further and create more opportunities for people living with
dystonia to become involved. Partnering with universities and through our new Research Network.
we will sUPPOrt research that matters to our community.
We will continue to 'Reach Out, Reach All, through targeted activities including those developed to
better support people recently diagnosed with dystonia. We will continue to support our members
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through Dystonio Motters magazine, listen to their feedback and ensure their insights shape our
services. People's stories will remain atthe heartof our communications, and we will use our plafform
to magnify their voice5.
We will increase public awareness and understanding of dystonia through trusted information and
national campaigns, including Dystonia Awareness Month. We will continue to work strategically with
our lobbying work. Through collaboration with coalition organisations such as The Neurological
Alliances. we will harness the strength of the wider neurological community to ensure dystonia is
recognised and understood by policymakers.
We will celebrate our community and supporters, enhancing how we thank. involve and engage them,
while focusing on increased income generation to sustain and expand our work. Above all, we will
continue to be there for everyone in the dystonia community.
Financial Review
Reserves
The trustees feel it is prudent to maintain the Sociews general unrestricted reserves at a level
sufficient to cover commitments such a5 property rental, creditors and other liabilities and to reflett
the relative uncertainty of income and potential restrictions on its use. The level of resenies 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 2023/24 and 2024/25, the trustees reviewed
The Dystonia Socievs reserves policy and designated £410,OIJ) from unrestrirted reserves in 2024.
The Board have reviewed this designated reserve and judge that it is appropriate to maintain it in
2024125.
The level of unrestritted and undesignated reserves at 31st March 2025 represented 45% of
unrestritted expenditure in the year {2024 43%}.
Certain grants and donations received by the Society are given with for specific projetts or initiatives.
Restricted funds held in respect of these activities are carried forward if they are unspent or
uncommitted. At 31st March 2025, funds of £144,216 were carried forward {2024: £157.315).
Investment Policy
Trustees reviewed the Charitys Investment policy in October 2023. Trustees agreed that their
priorities for investing surplus funds are to earn a reasonable return at low risk while being able to
access funds immediately if needed.
Trustees approved using a combination of CCLA'S COIF Charitres Deposit Fund Ilow-risk money market
investments via the UK'S leading specialist Charity Fund Manager) and bank deposit facilities to invest
legacy income when received.
16

The Dystonia Society
Report of the Trustees for the year ended 31 March 2025
(Incorporating the Directois. Report)
Dyston7'a
UK
Structure. Governance and Management
The Society is a company limited byguarantee and is registered with the Chartty Commission (Number
10625951 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 Dystonia Society is vested in the trustees. each of whom is a member of the Society. All
decisions are made by the board of trustees, and at the present time no sub-committees are in
operation.
Existing trustees encourage potential trustees to standforelection to maintain an appropriate balance
of skills and experience. Where specific skills are needed the recruitment of potential trustee5 may be
expanded to look beyond the current membership. Where there are more candidates than vacancies,
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*lettion each year. If lessthan a third of thetrustees are due for re-election, then
those nearest to the expiry of their term stand for re-election. Trustees serve for a maximum of three
terms.
A trustee may be appointed by the Board if a vacancy becomes available during the financial year and
the trustee would then stand for re-election at the year end. The maximum number of trustees is
twelve and the minimum is three. All trustees are given a programme of induction and training.
Further training is available when required and relevant.
Staff
The board delegates operational planning and day-ttrday 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 Development. This authority is
delegated within approved limit5. The Chair of the Board oversees the SLT'S performance through
reports and briefings. The SLT presents report5 at board meetings and as part of the planning and
budgeting process. The Chair of the Board carries out the appraisals forthe SLT annually, on behalf of
the board. The chair can involve another trustee in this appraisal work should they wish.
The SLT are supported by a small team of staff. They are a highly motivated team, dedicated to the
needs of people with dystonia. We have found that hybrid working is a viable and efficient way of
working as it allows staff to work flexibly and adapt appropriately to the needs of the organisation.
Some trustees are more actively involved than their8overnance duties, supporting additional working
groups, developing information and support and finance and administration. We are very grateful for
this additional 5UPPOrt.
Remuneration policy
The trustees have responsibility for setting the pay and remuneration of the charitvs key personnel
and this is done on an annual basis, including a formal cost of living review. Salaries are benchmarked
with other similar organisations acr05S the settor.
17

The Dystonia Society
Report of the Trustees for the year ended 31 March 2025
(Incorporating the Dirertors. Report)
Dyston7'a
UK
Membership
Membership of the organisation is governed by our Articles of Association. Subscribers to the
Memorandum and individuals or organisations admitted by the Board of Trustees in accordance with
the Articles are recognised as members of the Company and are recorded in the register of members.
Full Membership
Individuals and organisations may apply for full membership using the form prescribed by the Board
of Trustees. The Board has full discretion to accept or decline membership applications and is not
required to provide reasons for its decisions. The Board may also establish criteria for membership,
though meeting such criteria does not automatically entitle an applicant to membership.
Where a member represents an unincorporated association or body, the register will reflert this
representation. The association or body may nominate a replacement representative at any time bv
notifying the Company. without requiring a new application form or notice from the outgoing
representative.
Corporate members must appoint an individual to rep￿sent them at meetings of the Company.
They may change their representative at any time by notifying the Company.
Associate Membership
The Board of Trustees may also establish classes of associate membership. Associate members are not
members of the Company for the purposes of the Articles or the Companies Acts. The Board
determines the rights, obligations, and subscription requirements for each class of associate
membership and has discretion to admit or remove associate members in line with agreed regulations.
Membership Records
We comply with the requirements of the Companies Acts and the Charities Art 1993 in maintaining a
registerof members and keeping accurate membership records. In accordance with these obligation5,
we also ensure proper maintenance of financial records. the audit or independent examination of our
accounts, and the timely preparation and submission of annual reports, annual returns, and
statements of account to both the Registrar of Companies and the Charity Commission.
Risk
The trustees identify and review the major risks to which the Society is exposed and have established
appropriate systems to anticipate further risks that may arise. The trustees consider that
implementation of agreed actions and procedures will significantly reduce the probability and impart
of these risks.
Principal risks & uncertainties
The most recent review identified the key risks to be financial and external. Financial risks relate to
our ability to achieve sufficient income to maintain financial sustainability and meet our
commitments. External risks centre on our ability to meet seniice needs, particularly where these
are influenced by factors beyond our control.
It was recognised that our financial risks are largely mitigated by expected legacy income. The Society
undertakes careful monitorine of projected cash flows and reserve levels to ensure it can meet its
financial responsibilities. External risks are mitigated through detailed strategic planning and informed
decision-making. We continue to review our staffing strurture to ensure we have the right
organisation, capacity, and capabilities in place to deliver our ambitious plans.
18

The Dystonia Society
Report of the Trustees for the year ended 31 March 2025
(Incorporating the Dlrertors. Report)
Dyston7"a
UK
Public Benefft
The trustees have referred to the Charity Commission's guidance on public benefit, and the Euidance
"Meeting the Charity Test" published by the Office of the Scottish Charity Regulator, when reviewing
their aims and objectives, and planning the Sociews future activity.
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 law and
United Kingdom Accounting Standards (UK Generally Accepted Accounting PrattFce {UK GAAP)}.
Company law requires the trustees to prepare financial statements for each financial year. Under that
law the trustees have elected to prepare the financial statements in accordance 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:
Select suitable accounting policies and then apply them consistently.
Observe the methods and princtples in the Staternent of Recommended Practice"Accounting
and Reporting by Charities-.
Make judgements and estimates that are reasonable and prudent.
State whether applicable UK Accounting Standards have been followed, subject to any
material departures disclosed and explained in the financial statements.
Prepare the financial statements on the going concern basis unless it 15 inappropriate to
presume that the charitable company will continue in business.
The trustees are responsible for keeping adequate accounting records which are sufficient to show
and explain the charitable compan￿5 transaciions and which disclose with reasonable accuracy at any
time the financial position of the charitable company and enable them to ensure that the financial
statements comply with the Companies Act 2006. the Charities and Trustee Investment (Scotland) Act
2005, the Charities Accounts (Scotlandl Regulations 2006 and the charitys constitution. They are also
responsible for safeguarding the assets of the charitable company and hen￿ 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 information of which the charitable companvs independent examiner is
unaware.
The trustees have taken all steps that they ought to have taken to make themselves aware of
any relevant information and to establish that the independent is aware of that infomiation.
The trustees are responsible for the maintenance and integrity of the corporate and financial
information included on the charitable companvs 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 accordance with the special provisions for small companies under
Section IS of the Companies Act 2006.
19

The Dystonia Society
Report of the Trustees for the year ended 31 March 2025
(Incorporating the Dirertors, Report)
Dyston7'a
UK
Thanks
While it's impossible to name every individual and organisation who has contributed to our work this
year, we want to express our sincere appreciation to all who have supported us. We are so grateful
for your commitment. In particular, we would like to recognise:
Our Patron & Ambassadors
We are incredibly fortunate to work alongside a group of dedicated individuals who help raise
awareness of dystonia and inspire others to get involved. Special thanks to:
Tully Kearney, OBE
• Gemma Stevenson
Ella Middleton
Our Staff & Volunteers
A sincere thank you to the Socievs staff team and volunteers. Their dedication, loyalty and
commitment to our cause continues to drive our progress and impact.
Our Medlcal Network
We're especially grateful to our medical advisory group and the wider network of professionals who
have generouslygiven theirtime and expertise throughout the year. Yoursupport remains a vital part
of our work.
Our Members & Donors
Thank you to everyone whojoined or renewed their membership with Dystonia UK in 2024-25. Every
member helps us amplify our voice and extend our reach. We're also truly thankful to all those who
have made a donation - your generosity fuels our mission.
Those who remernbe￿d Dystonia UK in thelr Will
Legacy gifts have once again made a transformative difference, accounting for more than half of our
income. We are deeply grateful to everyone who chose to leave a gift in their Will, helping to ensure
we can continue supporting those affected by dystonia for years to come.
Our Fundraisers
A huge thank you to the individuals and groups across the UK and beyond who have taken on
fundraising challenges and activities. Your creativity and enthusiasm bring both vital funds and
awareness to our cause.
Charitable Trusts & Foundations
We remain grateful for the continued support of the charitable trusts and foundations who fund our
work. Your backing is invaluable.
Companies and other organisations
Our thanks also go to our corporate supporters and partner organisations. Your contributions and
collaborative efforts play a crucial role in helping us deliver our goals.
20

The Dystonia Society
Report of the Trustees for the year ended 31 March 2025
(Incorporatlng the Directors, Report)
Dyston7'a
UK
Approval
This report was approved by the Board of Trustees on 12 November 2025 and signed on its behalf
by..
Qamar Khan, MBE
Chair of Trustees
21

The Dy5tonia Society
Independent Examinerfs Report to the trustees of
The Dystonia Society ('the Compan￿)
Dyston-'a
I report to the charity trustees on my examination of the accounts of the Company for the year ended
31 March 2025.
Responsibilities and basls of report
As the charivs trustees of the Company land also its directors for the purposes of company law) you
are responsible for the preparation of the accounts in accordance 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
16 of the 2￿6 Act and are eligible for independentexamination, I report in respect of my examination
of your charitys accounts as carried out underthe Charities Act 2011, s1451'the 2011 ACYI. In carrying
out my examination I have followed the Direcbons given by the Charity Commission under s145151{b)
of the 2011 Art.
Independent examinerf$ statement
Since the CoMpan￿S gross incorne exceeded £250.LXX) your examiner must be a member of a body
listed in s145 of the 2011 Act. I confirm that l am qualified to undertake the examination because l am
member of the Institute of Chartered Accountants in England and Wales, which is one of the listed
bodies.
I have cornpleted my examination. I confirm that no matters have come to my attention in connection
with the examination giving me cause to believe that:
11) accounting records were not kept in respect of the Company as reqUI￿d by section 386 of the 2tK)6
Act; or
12> the accounts do not accord with those records. or
131 the accounts do not comply with the accounting requirements of section 396 of the 2(Ki6 Act other
than any requirement that the accounts give a 'true and fair view which is not a matter considered as
part of an independent examination: or
141 the accounts have not been prepared 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 accordance with the Financial Repornng Standard applicable in the UK and
Republic of Ireland IFRS 102).
I have no concerns and have come across no other matters in connect?on with the examination to
which attention should be drawn in thTs report in order to enable a proper understanding of the
accounts to be reached.
Michael A Williams ACA.,
Chartered Accountant
30 Rerford Drive, Sutton Coldfield. West Midlands, B76 IDG
Date:
22

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The Dystonia Society
Balance sheet at 31 March 2025
Dyston7'a
UK
Notes
31 Matth 2025 31 March 2024
Non-curr•nt ass•ts
Tangible fixed assets
Investment in subsidiary company
Current •sxts
Debtors
Cash at bank and in hand
233,557
540,928
774,485
l(Kl,455
636,559
737,014
Cr•ditorJ: arnounts falhng du• wlthin on• y•ar
io
152.421)
(34,720)
Net ¢urr•nt as•ets
722,064
702,294
N•t •M•ts
722.065
702,295
R•pr•Mnted by
General funds
Designated funds
Total unrnstrictod funds
Restricted funds
167,849
410,IM)
577,849
IH,216
134,980
410,C
14
157.315
Total fund•
12
722.065
702.295
The Trustees are satisfied that the Charitable Company is entitled to exemption from the provisions
of the Companies Art 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 sectron
476 of the Act.
The Trustees acknowledge their responsibilities for
ensuring that the charitable company keeps adequate accounting records which comply
with section 386 of the Art, and
preparing financial statements which give a true and fair view of the state of affairs of the
charitable company as at the end of the financial year and of its results forthe financial year
in accordance with the requirements of settions 394 and 395. and which othenhiise 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
Companies under Part 15 of the Companies Art 2￿)6.
24

The Dystonia Society
Balance sheet at 31 March 2025
Dyston7'a
UK
Qamar Khan, MBE
Chair of Trustees
Robert Semple
Treasurer
Company Registration Number: 03309777
The notes on pages 27- 36 form part of these financial statements.
25

The Dystonia Society
Statement of cash flows for the year
ended 31 March 2025
Dyston7'a
UK
2024
N•t incom•/{•xp•nditur•) u p•rth• st•t•m•nt of finandal •thits•s
Adjustments for
Depreciation char8es
Interest f rom investments
Ilncrease)/decrease in debtors
Increaselldecrease) in creditors
N•t c•sh 8•n•r•t•d l(uMd) in op•rntinz acllvlt
19.770
371.071
{14,668)
(133,1021
17,701
{110.299)
18,918)
153,976)
13,376
32L559
Ca¥h tlow¥ from InvestlnK •ctlviti•s
Interest from investments
Net eash provided by/lus•d in) Inv•*llng acllvlll•#
14.668
8,918
8.918
N•t 1ncr•a*e/{d•cre￿•j In ¢a8h and ¢•*h •qulvthnts
Cash and cash equivalents at the be8inning of the year
Calh •nd ¢•Jh •quival•nts at the •nd of th• year
(95.631)
636559
540.928
330.4n
306,082
636,559
Ch•ck total
540.928
636,559
26

The Dystonia Society
Notes to the financial statements for the year
ended 31 March 2025
Dyston7'a
UK
l. Accounting policles
a) Basis of preparation of financial statements
The financial statements have been prepared in accordance with Accounting and Reporting by Charities:
Statement of Recommended Practice applicable to charities preparing their accounts in accordance with
the Financial Reporttngstandard applicable in the UK and Republic of Ireland IFRS 102) (effective l January
20151, the Companies Act 2fX)6 and the Charities and Trustees Investment (Scotland) Act 2005.
The Charity constitutes a public benefit entity as defined by FRS 102.
The accounts include the balances and transactrons of 30 of the SocietVs support groups.
The preparation of the financial accounts requires the Societvs management to make reasonable and
prudent judgements, estimates and assumptions that affett 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) Intome
Income is received by way of grants. donations and subscriptions. The income from fundraisin8 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 receNes donations of goods and serrfices in kind and where there is a
measurable material value to the Society, which can be ascertained with reliability, they are included as both
income and expenditure. Equipment given for use by the Society is included as a donation at estimated value
when received.
Legacy income 15 included in the period in which it is received. or, if earlier, the period in which the Society
receives confirmation of entitlement and arnount. 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 grants are credited to incoming resources on the date they are received orwhen they are receivable,
unless they relate to a specific period, in which case they are deferred.
c) Expenditure
Expenditure is recognised on an accruals basis and includes VAT whlch the charity cannot recover.
Direct expenditure on charitable activities is allocated to the Socievs objectives in five streams of work.
Support costs are allocated to each of the charitable activities (and to the associated restricted funds) based
on staff salary costs.
Costs of raising funds relate to expenditure incurred in approaching and facilitating people and organisations
to contribute financially to the SOCIe￿s work.
Grants payable are accounted for when paid or when the Society has, by communicating a commitment,
created a valid expectation that it will make future payments.
Those costs shown as governance relate to the management of the Socievs assets, organisational
administration and compliance with constitutional and statutory requirements.
27

The Dystonia Society
Notes to the financial statements for the year
ended 31 March 2025
d) Pension contributfons
The Society makes contributions to defined contribution personal pension schemes held by employees.
Contributions are a percentage of gross salary and are charged to the same restricted or unrestricted funds,
and in same the accounting periods. as the related salary costs.
Dyston7a
UK
e) Tanglble fixed assets
Items of equipment are capitalised if their cost exceeds £l,tKKI and if they have an expected useful life of more
than two years. Depreciation is then charged at a uniform rate over that life.
fj Operating leases
Rentals applicable to operating leases where substantially all the benefits and risks of ownership remain with
the lessor are reflected in the Statement of Financial Attivities on a straight-line basis over the period of the
lease.
g) Fund accountlng
Restricted funds are to be used for specific purposes as stated by the donor. Expenditure which meets these
criteria is charged 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 restrirted to any specific activity.
h) Flnancial instruments
The charity On￿ has financial assets and financial liabilities of a kind that qualify 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 account has not been prepared as the figures comprising net income for
the year shown in the Statement of Financial Activities give the information required under the Companies Act
2(KJ6, together with details of other recognised gains and losses.
28

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The Dystonia Society
Notes to the financial statements for the year
ended 31 March 2025
Dyston7'a
UK
stsff costs
2025
2024
Salaries and wages
Social security costs
Pension contributions
205,430
15,941
8,743
230.114
131,880
8,662
6,808
147,350
Staff employed under service contracts
Volunteers
Other employment and training costs
Total employment and training costs
1,838
16,793
248.745
16,198
163.548
The average number of employees during the year was 5.612024: 3.61 of whom 4.812024: 3.11 were full-time. No
employee earned more than £60,000 during the year (2024: nil).
The Society contributes to defined contribution personal pension schemes. The assets of these schemes are held
separately from those of the Society in independently administered funds. At 31 March 2025. the Society owed
£1,404 (2024". £891) to these pension schemes.
Trustees, remuneration arKI expenses
The trustee5 received no remuneration fortheir service$12024". nil). Three trustees (2023.. four} were reimbursed £826
for travel expenses and other costs (2024: £811).
31

The Dystonia Society
Notes to the financial statements for the year
ended 31 March 2025
Dyston7a
UK
Non-currnnt asMts
Office equipment and fixtures
Cost at l April 2024
Additions
Cost at 31 March 2025
22,317
22.317
Depreciation at l April 2024
Chargefor the year
Depreciation at 31 March 2025
22,317
22,317
Net book value at l April 2024
Net book valu• at 31 March 2025
Inv•stm•nt in subsidiary
Investment in Dystonia UK Ltd
32

The Dystonia Society
Notes to the financial statements for the year
ended 31 March 2025
Dyston7'a
UK
Debtors
2025 .
2024
Prepayments
Other debtors and accrued income
28,574
204,983
233.557
11,780
88,675
100.455
Cash at bank and in hand
2025
2024
Bank investment accounts
Other bank and building society accounts
Petty cash and groups
417,885
122,215
828
540.928
446,059
189,017
1,483
636.559
10
Crnditors: Amounts falling du• within on• y•ar
2025
2024
Taxation and social security costs
Other creditors
Accruals + Deferred Income
5,013
18,507
28.901
52,421
3,805
15,046
15,869
34,720
11
Commitments under operating l•aMs
2025
2024
Office Lease + Service Charge
14,289
12,436
33

Dyston7'a
UK
13. Contingent liabilities
No contingent liabilities exist as of 31st March 2025 and the date of this Annual Report &
Accounts
14. Related party transactions
There have been no related partytransactions in the year ending 31 st March 2025 (prior year nil)
35

Dyston7'a
UK
Dystonia UK is kids and adults with dystonia, carers
and clinicians, fundraisers and families, medical
professionals and our amazing members and
supporters, all working side by side.
Dystonia UK
89 Albert Embankment
London
SEI 7TP
020 7793 3651
www.d stonia.or
Dystonia UK is the operating name of The Dystonia Society. The Dystonia Society is registered
as a charity in England and Wales (1062595) and in Scotland (SC042127).
36