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2024-03-31-accounts

MUSCULAR DYSTROPHY UK OUR MUSCLES MATTER Annual Report 2023124 Togetherwe are stronger i¥

Muscular Dystrophy UK Annual Report | 3

Contents

1 in 600

people in the UK live with a muscle wasting and weakening condition. We’re here for everyone, from the point of diagnosis to living the best life possible.

Contents
A message from our
Chair and Chief Executive 4
Naomi’s story 6
About us 7
The year in numbers 8
Looking back on what we achieved 9
Our research advances 12
Driving change for access
to specialist care and support 16
Living well 20
Our work in Scotland 24
The difference your support made 27
RHS Chelsea Flower Show 30
Our President’s Award winners 32
Our finances 34
Our future plans 36
Thank you 38
Our policies 42
Structure, governance
and management 46
Independent auditor’s report 48
Financial statements and notes 52

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P12
Our research
advances
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P20
Living
well
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P27
The
difference
your
support
made
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Photographer: Rebekah Kennington

Front cover photographer: Rose Dedman

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A message from our Chair and Chief Executive

Welcome to our annual Impact Report. A year in which research for our community advanced at pace, the demand on our services increased and we planned for our appearance at the RHS Chelsea Flower Show in May 2024.

In 2023/24, the community and our charity became even more creative in delivering our work. Helping us move towards a future where everyone living with a muscle wasting and weakening condition can get the healthcare, support and treatments needed to feel stronger, both physically and mentally.

of fundraisers and donors and the £1.2m investment we’ve been able to make in the centre during this time.

These incredible donations and fundraising efforts have also enabled us to plan for a strategic grant call, which went live in Spring 2024 for projects worth up to £1m, allowing us to drive research further and faster. This was in addition to our over £1m commitment to the LifeArc Centre for Rare Mitochondrial Diseases.

The new grants we awarded for research this year brought our total portfolio of live grants to 43.

After research and clinical trials comes access to treatments, and this too has accelerated at pace since the first treatment for a muscle wasting and weakening condition became available in the UK in 2016. This year alone we were involved in 10 NHS treatment appraisals that could potentially benefit our community.

This year we celebrated our successful five-year partnership with Oxford University in the MDUK Oxford Neuromuscular Centre, set up in 2019. During the past five years our partnership has transformed the clinical trial landscape in Oxford from almost no trials in 2019 to over 20 either in progress or being set up by end of 2023. This is all thanks to our community

It’s vital that NHS services for our community support access to new treatments and provide necessary wider care and support. This year we concluded our first Neuromuscular Centres of Excellence audit since the pandemic, awarding 24 neuromuscular services with a Centre of Excellence or Centre Pursuing Excellence Award. This helps us to identify best practice in provision and the challenges services face that we can help overcome.

reminds us that December, particularly Christmas, can be a time to gather with loved ones and remember those we’ve lost. Thank you for This is why we appreciate the work of the Northern Ireland your support, Council, who continue to lead our Belfast annual Spirit of your involvement, Christmas event. your stories, Throughout the year, our work your requests and was positively impacted by our brand refresh which we your continued successfully rolled out – making us more accessible, bolder, passion to make brighter than before, but still orange. During this period our our charity website visits went up by a third matter, because on the previous year and our reach on Facebook by 140%. we all know We finish this year once how much our again proud of our wonderful muscles matter. community. Our research partners, support services and funders, volunteers, fundraisers, staff and trustees. Thank you for your support, your involvement, your stories, your requests and your continued passion to make our charity matter, because we all know how much our muscles matter.

We were delighted to see an estimated 80% of the neuromuscular care advisor and clinical nurse specialist UK workforce attend our annual Neuromuscular Care Advisor Conference this year. This is just one area where our partnership with the NHS continues to drive improvements in support, advice, and care.

This year, our direct activities expanded to include targeted mental health support, with both psychological and counselling programmes for people living with a condition. Our GriefChat support function

Wojtek Trzcinski Chief Operating Officer and Interim Chief Executive

Professor Michael Hanna Chair

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Naomi’s story

Naomi was pregnant when she found out she had muscular dystrophy at age 23. Her two sons also have the condition. Our helpline team has supported Naomi in getting Disability Living Allowance for her children, and appropriate housing for all their needs.

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Photographer: Rose Dedman
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“I was told for most of my life that I just had severe scoliosis (curvature of the spine). But when I fell pregnant, I was referred to a specialist maternity unit. They told me they thought I had more than just scoliosis and, shortly after, I was diagnosed with Bethlem myopathy.

“A couple of years after

my second son, Freddie, was born and diagnosed with the same condition, I got back in touch when my partner and I were struggling. The support team has been phenomenal in helping us fight for a better house and Disability Living Allowance (DLA) for the boys.

I don’t think we’d be where we are now without Muscular Dystrophy UK. Thank you from the bottom of our hearts for improving my family’s life.”

“Frankie’s DLA got taken away a few months ago due to a processing issue. I had to reapply for his DLA from scratch, which was really stressful and time consuming. Thankfully, the team at Muscular Dystrophy UK was great in helping me with the paperwork and providing advice. We’ve now be granted Frankie’s full entitlement again, which is a huge relief.”

“It’s shocking to be diagnosed with a condition. But to be pregnant at the same time − I was terrified. When Frankie was born and they confirmed he had the condition, I found out about Muscular Dystrophy UK shortly after and contacted the helpline team to get information. I read stories of people who had similar conditions on the charity website, and they gave me so much hope.

“We received the news we’d all been waiting for recently: a property that will suit both my children’s needs has finally been found for us. For years, we’d been refused mobility equipment for the boys because the house was too small. Moving in and seeing the boys have plenty of space for their mobility needs and their own bedrooms has been amazing.

About us

We’re the leading charity for over 110,000 people in the UK living with one of over 60 muscle wasting and weakening conditions.

We connect people living with muscle wasting and weakening conditions, and all the people around them, friends and family, healthcare professionals and scientists. So that everyone can get the healthcare, support and treatments needed to feel good, both mentally and physically.

We support people through every stage of their life, from the point of diagnosis to living the best life possible.

Objects of Muscular Dystrophy UK for the Public Benefit

Our mission

The Charity is established to promote awareness and care for those affected by muscular dystrophy and allied neuromuscular conditions.

We work:

Our values

Public Benefit

The charity Trustees consider that they have complied with their duty in section 17 of the Charities Act 2011 to have due regard to Public Benefit guidance published by the Charity Commission and that the benefits that the charity provides are not unreasonably restricted.

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The year in numbers

We funded 11 new research projects totalling £1.3m.

Over 150 people were supported through our advocacy service.

More than 160 people attended our Information Days across the UK.

Our reach on Facebook was 3.2m, up 140% on the previous year.

Nearly 500 healthcare professionals attended our six upskilling webinars.

Nearly 3,000 people were supported through our helpline.

We raised £9.5m. A 16% increase on the previous year.

There were nearly 530,000 visits to our website, up one third on the previous year.

Nearly 500 people were provided with a cost-of-living grant by us.

We had nearly 1,500 pieces of media coverage with a potential reach of 356m. A 23% increase in volume of coverage year-on-year.

Looking back on what we achieved

This year’s achievements and performance measured against our 2023/24 objectives.

Performance indicator Our achievements Award successful grants • We awarded joint funded grants in our £1m joint fund with with LifeArc and will be making a LifeArc to accelerate formal announcement when projects to develop new contracts have been signed. treatments for congenital muscular dystrophy. Launch a new £1.15m • We agreed to contribute £1.15m over programme to pump- five years in a partnership with the prime strategic research. LifeArc Centre for Rare Mitochondrial Diseases. This followed LifeArc’s £40m grant call for Translational Rare Disease Centres in which we announced we would contribute this sum to any successful centres addressing muscle wasting and weakening conditions. Invest £500k into the • We invested over £500k into 2023/24 new research new research grants. grants programme. Launch a £90k three-year • We finalised the work for this in programme to drive 2023/24 and the programme was innovative research into officially launched April 2024. enhancing the quality of life for people living with muscle wasting and weakening conditions. Engage in a range of • We’re actively involved in the partnerships to begin Next-generation models and genetic new projects, including therapies for rare neuromuscular Horizon Europe and diseases (the MAGIC consortium). UKRI funded grant • The nemaline myopathy natural Next-generation models history study is in its final stages and genetic therapies for rare neuromuscular of approval with the regulatory diseases , the nemaline authorities and should begin recruiting patients in 2024. myopathy natural history study at the University • We’ve committed to providing of Oxford, and a jointly up to £60k towards a three-year funded project with partnership with the Myotubular the Myotubular Trust. Trust to fund a project to understand

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This year’s achievements and performance measured against our 2023/24 objectives - continued

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Performance indicator Our achievements
Engage with the largest number of • We engaged with 27 centres through our audit of
neuromuscular centres and patient viewpoints neuromuscular services and Centres of Excellence
through our neuromuscular services audit Awards process and awarded 24 Centres of
and Centres of Excellence Awards. Excellence and Pursing Excellence awards.
Continue to ensure that neuromuscular • We provided health professionals with e-learning
services and the needs of our community modules and upskilling webinars.
are represented in decisions about future • We carried out our role as a member of the NHSE
provision as commissioning reforms
Specialised Services Stakeholder Forum and a core
continue, new treatments become available
member of the England Rare Disease Action Plan
and the needs of our community evolve.
Patient Advisory Group.
Launch two new initiatives through our Mental • Our Mental Health Matters steering group, chaired
Health Matters work to provide psychological by a neuromuscular clinical psychologist, met twice
support to our community, with the aim of this year to shape support for our community.
providing increased access to support from
• We launched four therapeutic support groups,
a specialist neuromuscular psychiatrist or
facilitated by a counsellor with lived experience
receiving targeted counselling support.
of a muscle wasting and weakening condition.
Contribute to virtual and physical support • We held Information Days in Northern Ireland
events for both people living with muscle and England, a Scottish Conference, and
wasting and weakening conditions and accessible golf day, along with seven virtual
professionals who support them. information webinars.
Provide support to neuromuscular services • We managed and facilitated five Muscular
and fellow charities at their events. Dystrophy UK Regional Neuromuscular Networks.
• We attended seven external events supporting
other charities and neuromuscular services.
Deliver an Allied Health Professionals • We held two health professional conferences,
conference, a Care Adviser conference and two Information Days and a Scottish Conference.
two Information Days in England and Northern
Ireland, before the return of the Scottish
Conference in March 2024.
Continue to evolve our local Muscle Groups, • We held 33 Muscle Group meetings and delivered
with virtual events providing condition seven virtual information webinars.
specific information and support.
Continue to fight for access to treatments • We took part in 10 treatment appraisal processes.
and for support services to be resourced Two culminated in recommendations the treatment
for their roll-out. Engaging in the NICE and should be made available as an NHS treatment
SMC appraisal processes for new treatments option; one was withdrawn part way through the
through to campaigning for SMA to be added appraisal process by the manufacturer; and seven
to the NHS newborn screening programme continue into 2024/25.
on the newborn screening list.
• We continued our role as co-secretariat of the UK
SMA Newborn Screening Alliance, the work of which
contributed to the securing of ‘in-service evaluation’
(pilot) of newborn screening by the NHS Newborn
Screening Committee.
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This year’s achievements and performance measured against our 2023/24 objectives - continued

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Performance indicator Our achievements
Complete our role in supporting the roll-out of • We successfully helped register a total of
the Department for Levelling Up, Housing and 324 Changing places toilets under the Changing
Communities (DLUHC) £30m Changing Places Places scheme this year. 252 of these were part
fund and the Department for Transport (DfT) of the DLUHC and DfT programmes.
Motorway Service Area Changing Places
programme.
Deliver £6.6m gross budget through active • Delivered a gross budget of £9.5m through active
fundraising (£4.2m), legacies (£1.6m) and other fundraising (£5.3m), legacies, (£2.9m) and other
income (£772k), which will result in net figure of income (£1.3m), which has resulted in a net figure of
£4.4m available for our charitable activities. £6.9m available for our charitable activities. Work is
Invest in our legacy team to maximise the being done on a new legacy proposition to ensure
potential of this long-term income stream. we maximise on the potential of this long-term
income stream.
Maximise return on our investment through • We have continued to maintain a fundraising
effective deployment of resources and cost to income ratio above 2.7. In 2023/24 for
continued monitoring and improvement every £1 we spent on fundraising we raised £3.70.
where possible of return on investment,
maintaining at least 2.7 ratio or above.
Work towards our Patient Information Forum • We were successfully awarded PIF Tick accreditation.
(PIF) accreditation - a signal that we are a
trusted information creator through our
updated factsheets and alerts cards.
A standard our community requires.
Reduce our overhead costs to 15% of total costs • Our support costs in 2023/24 financial year
as a result of moving to smaller office. were £812k, which represents 10% of our total
expenditure of £8,042k.
Launch our refreshed brand to reach more • We launched our new brand in July 2023 and
of the 110,000 people living with one of 60 continued to roll it out throughout 2023/24.
muscle wasting and weakening conditions.
Continue working on reducing our surplus • We have designated £2.1m of our free funds for
reserves though careful investment planning the two strategic research calls. Both of which
alongside the existing strategy. were announced in early 2024/25.
Remain committed to responsible leadership • We continued to focus on our team’s wellbeing, our
in the sector, with a continued focus on impact on the environment, and equality, diversity,
our team’s wellbeing, our impact on the and inclusion for the whole community by carrying
environment, and equality, diversity, out various initiatives. These included: wellbeing
and inclusion for the whole community. champion mental health first aiders group, financial
wellbeing webinars and wellbeing resources, our EDI
working group, and offsetting the carbon emissions
from the 2023 Oxford 10k, making it our first carbon
neutral Town and Gown event.
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Our research advances

High-quality research continues to play a key role in our ambition to improve the lives of people living with a muscle wasting and weakening condition, helping us to better understand these conditions and maximise treatment improvements.

Our research strategy, Transforming lives through research, remains the driving force for our research activity.

Teams based in London, led by Professors Saverio Tedesco and Peter Zammit, have developed a way to transform cells donated from people with laminopathies into ‘mini muscles’ complete with fibres, blood vessels and nerve cell. This could hugely impact our understanding of what drives muscle wasting and weakening conditions and aid the development of more effective treatments.”

Photographer: Teri Pengilley

Our 2023 grant awards

We awarded 11 new grants worth over £1.3m to research projects this year. These projects aim to improve diagnosis, monitor progression, and test potential new treatments for muscle wasting and weakening conditions. This brings the total number of research projects we fund to 43. Our new grants cover conditions such as ADSSL1 myopathy, Becker muscular dystrophy, Charcot-Marie-Tooth disease, Duchenne muscular dystrophy, mitochondrial myopathy, myasthenia gravis, myotonic dystrophy type 1, and spinal muscular atrophy.

The European Neuromuscular Centre

We’re proud to have been an executive member of The European Neuromuscular Centre (ENMC) since it first began, and this year it celebrated its 30th anniversary. Through its network of European neuromuscular research charities, it has the important role of bringing together experts in the field of muscle wasting and weakening conditions to tackle challenges in this area.

Our Research Line

Through our research line, we continued to ensure patients and families could

access information about new research studies, treatments, and clinical trials for muscle wasting and weakening conditions.

Five years working in partnership to change the landscape for clinical trials

In January 2019, we partnered with the University of Oxford to form the MDUK Oxford Neuromuscular Centre to drive forward the development of new therapies and increase clinical trial capacity for muscle wasting and weakening conditions. This year we celebrated the fifth anniversary of the Centre with its Director

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Medical Research Charities Early-Career Researcher Fund

Professor Matthew Wood and co-Directors Professors Kevin Talbot and Dame Kay Davies. The Centre is now the third hub for muscular dystrophy research in the UK − along with London and Newcastle. In 2019, almost no clinical trials for muscle wasting and weakening conditions took place in Oxford, and we’re proud to say that in 2024 over 20 clinical trials are either in progress or being set up. We’ve invested £1.2m into the MDUK Oxford Neuromuscular Centre over the past five years.

The Medical Research Charities Early-Career Researcher Fund was set up in 2021 by Government departments to provide financial help and security to medical research charities amid the Covid pandemic. We received a further £382,000 from the fund this year, bringing the total we’ve received over the past three years to almost £1m, for which we are very grateful. This has helped us regrow our grant portfolio and help fund young scientists to become future leaders in the field of muscle wasting and weakening conditions.

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Highlights of our research funding

Research projects take time to deliver impact. Here are some of the highlights we published in 2023/24 from our grants awarded in previous years.

£1.2m

The role of periostin in Duchenne muscular dystrophy

scientists researching skeletal

invested into the MDUK Oxford Neuromuscular Centre over the past five years

muscles and muscle wasting and weakening conditions. Teams based in London, led by Professors Saverio Tedesco and Peter Zammit, have developed a way to transform cells donated from people with laminopathies into ‘mini muscles’ complete with fibres, blood vessels and nerve cells. Harnessing laboratory-engineered muscles could hugely impact our understanding of what drives muscle wasting and weakening conditions and aid the development of more effective treatments.

Duchenne muscular dystrophy (DMD) is a condition caused by genetic changes in the dystrophin gene that result in blocked production of dystrophin protein. Without dystrophin the muscle breaks down and is replaced by fatty and scar tissue − a process called fibrosis. Professor Linda Popplewell, Dr Alberto Malerba, and their team revealed high levels of periostin in mice with DMD. These results suggest periostin could be linked with muscle fibrosis in DMD. Knowing how periostin contributes to muscle damage could lead to new ways to stop or ease the progression of DMD.

£382,000

received this year from the Medical Research Charities Early-Career Researcher Fund

11

new grants worth over £1.3m awarded this year

43

Successful use of a

self-management support programme in neuromuscular specialist centres

active research projects

Making ‘muscles in a dish’ to study laminopathies and other muscle wasting conditions

We funded research looking at whether a self-management support programme called Neuromuscular Bridges could successfully be used in neuromuscular specialist centres. The programme focuses on building patients’ confidence and includes special training for healthcare

professionals. As part of his PhD studies, Dr Laurence Lee, supervised by Dr Gita Ramdharry, found the programme was helpful to clinicians and people living with muscle wasting and weakening conditions.

We use skeletal muscles to move our bodies. They are made up of long fibres supported by an intricate range of other cells. Recreating this intricate system in the laboratory is invaluable to

As an academic group leader, I continue to benefit from funding from Muscular Dystrophy UK. For me, this funding enables the bench science required as a first step for the development of potential gene therapies for Duchenne and Becker muscular dystrophy.”

Professor Linda Popplewell, Professor of Genetic Medicine at Teesside University

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Driving change for access to specialist care and support

We’ve worked successfully to secure access to treatments for muscle wasting and weakening conditions this year. At the same time, we’ve continued to support health professionals in the care of our community, providing upskilling and networking opportunities, while ensuring NHS neuromuscular services receive appropriate attention from commissioners and decision makers.

Our role in treatment recommendations and appraisals

of our community is fully represented, submitting evidence on their behalf and supporting people to deliver in-person evidence in appraisal committee meetings. This year we were selected as the formal Patient Expert for the NICE appraisal of Duchenne muscular dystrophy treatment vamorolone, which meant we also took part in an appraisal committee meeting.

This year we continued to be active in 10 muscle wasting or weakening treatment appraisal processes with the National Institute for Health and Care Excellence (NICE) and Scottish Medicines Consortium (SMC). These appraisals result in recommendations as to whether a treatment should be made available on the NHS. As a formal stakeholder, we ensure the experience

10

treatment appraisal processes participated in

80%

of the neuromuscular care advisor workforce attended our Care Advisor Conference

155

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attendees at our Allied Health Professional virtual conference

507

enrolments on our e-learning modules

465

attendees for our six health professional upskilling webinars

Photographer: Jo Ritchie

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Connecting and upskilling health professionals

Our health professional conferences

multidisciplinary care of people living with muscle wasting and weakening conditions. The event was very well attended, with 155 participants hearing about a wide range of topics, including transition, pregnancy care, speech and language therapy strategies, and practical case studies.

We continued to support our health professional community, organising conferences for two key groups involved in the care and support of people living with muscle wasting and weakening conditions, providing them with the opportunity to upskill, share best practice, and network.

24 Centres of Excellence or Pursuing Excellence awarded

In January 2024 we awarded 24 neuromuscular services with a Centre of Excellence or Centre Pursuing Excellence Award. This followed the culmination of our national audit of neuromuscular services through our Centres of Excellence Awards programme. This programme is one of the main ways we identify and promote best practice in service delivery, and also the national challenges facing neuromuscular services.

Our Neuromuscular Care Advisor Conference

Our Allied Health Professionals Conference

Our Neuromuscular Care Advisor Conference was attended by an estimated 80% of the care advisor and clinical nurse specialist workforce in the UK. This year’s focus was on social care, assistive technology, psychological upskilling, and palliative care.

We expanded our traditional Physiotherapy Conference into an Allied Health Professionals Conference, responding to requests from health professionals in other disciplines wishing to deepen their understanding of the

The children’s neuromuscular team are honoured to receive the Muscular Dystrophy UK Centre of Excellence Award. This recognises the ongoing care and support provided to children with neuromuscular conditions in Greater Manchester and beyond, and acknowledges the efforts of the team and the support from other speciality teams in the hospital in providing an excellent standard of care to children and families living with neuromuscular conditions.”

Dr Imelda Hughes, Consultant Paediatric Neurologist at Royal Manchester Children’s Hospital

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Photo: Manchester University NHS Foundation Trust
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I enjoyed all the content and variation of those presenting. It was useful to network and share best practice with others from around the UK and hear about different approaches to interventions. The upskilling session was particularly useful.”

Neuromuscular Care Advisor Conference attendee.

Our virtual upskilling and networking opportunities

We continued to provide virtual upskilling opportunities to health professionals, expanding our range of webinars to include learning opportunities for non-neuromuscular specialist health professionals. Running a series of six webinars, with a total of 465 health professional attendees, with a further 562 professionals subsequently receiving recordings of the webinars. Across the year, 507 people enrolled on our e-learning modules.

Our regional neuromuscular networks

Regional neuromuscular networks are a critical way in which our community of health professionals and people who use neuromuscular services can be brought together to identify service gaps and challenges in service provision. This ensures specialist and community neuromuscular services are strengthened in local areas. This year we continued to facilitate the work of our five neuromuscular networks and engaged with five NHS-funded neuromuscular networks, supporting in navigating changes to the commissioning system for specialised services and undertaking service scoping exercises, upskilling events, patient information days and network meetings.

Our parliamentary and policy work

Providing support to muscular dystrophy parliamentary groups

We continued to support cross-party groups on muscular dystrophy in the Houses of Parliament, the Scottish Parliament, the Welsh Parliament, and since the restoration of devolved government in Northern Ireland we’ve worked to reconstitute our Stormont group. Our work with these groups helps to ensure issues affecting people with muscle wasting and weakening conditions are on the political agenda and that they receive the political attention they deserve. We delivered a number of meetings across these groups this year, including launching our All-Party Parliamentary Group on Muscular Dystrophy inquiry report into newborn screening for rare conditions.

Consultation responses

We engaged in a number of Government consultations on issues of importance to our community, including housing and welfare, the closure of railway ticket offices, and disability and mental health strategies. These responses have played a significant role in achieving meaningful change, impacting on the overall quality and outcomes for people living with muscle wasting and weakening conditions.

Our community survey

A central part of our mission is to campaign for people’s rights, better understanding, and accessibility. To guide our policy priorities this year we launched a community survey, which received almost 700 responses from people living with a muscle wasting and weakening condition, their family and carers. These responses allowed us to discover more about what our community wants us to prioritise in our campaigning work and to identify the key policy areas in which our community need us to be actively engaged.

We began incorporating these findings into our work this year and will publish a report on the insights gained in 2024/25.

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Living well

We understand that living with a muscle wasting and weakening condition can be overwhelming and isolating for individuals and their families. This is especially true if people don’t have access to the right information and support to help them live well. We’re here to listen and provide information and advice about all aspects of living with a muscle wasting and weakening condition.

Our helpline service

Our advocacy service

This year 2,752 people contacted our helpline. Our team provided tailored information and emotional support to people living with a condition, their family, carers and friends. Delivering advice and support by phone, email, face-to-face, or through a referral from NHS neuromuscular clinics. The five topics people most contacted us about were alert cards, welfare information requests, emotional support, housing and adaptations advice, and peer support.

Through our advocacy service we supported 152 people to express their views and wishes and to challenge decisions made about them in relation to things like access to care, equipment, benefits and education. We supported them to develop self-advocacy skills in the face of these challenges, to communicate their needs and rights. The most support we provided was on Personal Independence Payment (PIP), housing and adaptations, and care packages.

I was elated when I found out I’d been accepted for the grant. It feels like a real blessing to live in a society that has funds available for people that need it.”

Sam, who lives with spinal muscular atrophy, received a grant through a partnership between our grant giving arm the Joseph Patrick Trust and SMArt Moves.

Supporting people through grants

partnership with the Teapot Trust, a mental health charity providing art therapy for children and families living with long term health conditions, to pilot a support programme for primary school aged children living with muscle wasting and weakening conditions. Alongside these new groups, we continue to offer one-to-one peer support from our trained peer support volunteers with lived experience.

2,752

people contacted our helpline

We continued to provide grants for the cost of mobility equipment through our grant giving arm the Joseph Patrick Trust, with 53 people receiving grants this year. We also provided cost-of-living grants to 470 people.

470

people received a cost-of-living grant

459

Our tailored therapeutic support groups

people requested our alert cards

This year we successfully partnered with Louise Halling, a professional counsellor and psychotherapist living with limb girdle muscular dystrophy, to run virtual therapeutic support groups. These sessions provided a confidential, supportive space to foster open discussions and build connections. Four therapeutic groups took place over the year.

315

Muscle Groups –

keeping people updated and connected

people attended our regional Muscle Group meetings

Our regional Muscle Group meetings provide a safe, welcoming space where people affected by muscle 162 wasting and weakening conditions can share experiences, meet other people in their local community, and learn more about the services we offer. We ran 33 Muscle Group meetings this year across 10 regions of England, and in Scotland, Wales and Northern 152 Ireland. In the past year 315 people have attended their local meeting.

attendees joined our Scottish Conference, Information Days in Birmingham and Belfast, and our Accessible Golf Day

Our tailored peer support

Our peer support groups continue to flourish. In the past year we’ve facilitated support groups based on condition, age or circumstances, such as recently receiving a condition diagnosis. We’ve also worked in

people supported by our advocacy service

108

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people joined our tailored support WhatsApp groups

We ran 33 Muscle Group meetings this year across 10 regions of England, and in Scotland, Wales and Northern Ireland.

53

people received a Joseph Patrick Trust equipment grant

65

people received peer support from our volunteers

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Our virtual information webinars

We held seven virtual information webinars this year, providing condition-specific information and practical and lifestyle talks to help people live well with their condition. Condition management topics included cardiac management, physiotherapy, emotional support, speech and language therapy, and diet and nutrition. Our webinar sessions focused on Becker muscular dystrophy, Charcot-Marie-Tooth disease, Pompe disease, Myasthenia Gravis, Collagen VI, a SMA treatment update, and palliative care.

Our Information Days

We held three in-person Information Days/conferences in England, Northern Ireland and Scotland as well as our first Accessible Golf Day, bringing together a total of 162 people living with muscle wasting and weakening conditions for our Information Days and our Accessible Golf Day. These events provide an opportunity for people to connect with others in the muscle wasting community, share stories, hear from experts to help them live well, meet our team, and to find out more about the advice and support we offer.

Becoming PIF accredited for trusted health information

Following an assessment with the Patient Information Forum (PIF), we were proud to successfully obtain the PIF TICK Quality Mark for Health Information as a producer of trusted information. The PIF TICK logo will feature on our health information going forwards providing assurance that our content is evidence-based, accessible, and produced to the best possible standard.

Our Employability Programme

Our Employability Programme provided individual support to 16 people over the year. This included support in CV and application writing, interview preparation, and guidance in finding suitable jobs, volunteering placements and training opportunities. We also gave talks focusing on employment rights and applying for jobs.

Changing Places toilets

We’re proud to continue in our role as co-chair of the Changing Places Consortium, the home of the Changing Places toilet campaign in the UK. This year we continued our partnership work with the Department for Transport (DfT) and the Department for Levelling Up, Housing and Communities (DLUHC) to support the delivery of programmes to install Changing Places toilets (CPts) across England, with a significant commitment from Local Authorities, motorway services operators and train operating companies.

As the Changing Places Consortium approaches its 20th anniversary in 2025, we launched the Changing Places Conversation to help us identify a sustainable future for the continued growth in provision of Changing Places toilets.

In total we registered 324 new toilets in 2023/24.

I started getting strange feelings in my hands in 2010. After being referred to a specialist, they told me I had a protruding disk in my neck. Getting surgery took several years, but I still continued having the same problems. After going back to the consultant, he didn’t think the disc had been the problem and referred me for other tests.

Shortly after, we saw that Muscular Dystrophy UK were holding an Information Day. My wife and I attended with the hope of finding out more about the condition as nobody seemed to be able to tell us anything.

Eventually, I had a muscle biopsy and received a letter saying I had a type of muscular dystrophy called inclusion body myositis (IBM). This was six years after my symptoms had started.

Stewart attended our Wales Information day once more this year, many years after he first went to one. He said: “I’ve found it very relevant. One or two of the sessions have been absolutely excellent.”

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Our work in Scotland

We work in each of the four countries of the UK. We’re required to provide a report on our activities in Scotland by the Office of the Scottish Charity Regulator.

Scottish Disability Sports

We continue to provide comprehensive and holistic support to individuals and families living with a muscle wasting and weakening condition in Scotland. To ensure they have access to the right information, care and equipment at the right time to allow them to live well and independently. Our Head of Regional Support, Outreach, and Information who is based in Scotland is the local point of contact for individuals and families in providing advice, information and support. This year we responded to 316 requests for support in Scotland, of which 35 were advocacy cases.

In April 2023, we worked in partnership with Scottish Disability Sports, Scottish Swimming, Scottish Powerchair Football Association and Scottish Curling to offer a fun-filled afternoon of sport for children afternoon of sport for children living with a muscle wasting and weakening condition. Seventeen families attended.

Disability Sports, Scottish I attended Swimming, Scottish Powerchair Football Association and Scottish Muscular

Curling to offer a fun-filled afternoon of sport for children Dystrophy

living with a muscle wasting UK’s Scottish and weakening condition.

Seventeen families attended. conference Scottish Council today; the Our work in Scotland continues sessions were to be developed and guided by

our Scottish Council. Scottish all so informative Council members are people and valuable living with muscle wasting and

weakening conditions, family for me; nothing members and professionals. Their role is to represent the is ever quite views of people affected by as valuable muscle wasting and weakening

conditions in Scotland. They met three times over the past as connecting

year and provided extensive with others and support in shaping the content and delivery of our Scottish feeling less alone conference. as we navigate Fundraising this journey.”

Our Scottish Conference

In March this year, we held our first conference in Scotland since 2018. It took place in Stirling with 65 people from the muscle wasting community attending, along with 13 external speakers. We were also joined by six external organisations who provided information stands. Topics covered included emotional wellbeing and mental health, exercise and fatigue management, self-directed support, housing adaptations, equipment and postural care. As well as sessions on inclusive education and attending university.

Fundraising update

Scottish Conference attendee

Our Family Funds

Our six Family Funds from Scotland raised a tremendous £10,600 from a variety of innovative fundraising activities this year. This included £6,065 from Team Thomas who had a number of junior and adult runners in events at the Edinburgh Marathon Festival.

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Photographer: Julie Broadfoot
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Community

fundraising activities

The Spirit of Christmas continues to be our stand-out supporter led event, raising £4,800 this year, and a total of £35,000 since it started. There has been an array of supporter led activity that has contributed to our fundraising total, including colour runs, dancing marathons, wedding favours and walking challenges from Ben Nevis to the West Highland Way. Two people from Scotland completed a trek to Everest Base Camp this year raising over £3,000, and a knitting fundraiser raised over £2,000 for our work.

A growth in runs and walks

Our total fundraising in Scotland

The biggest growth to our regional fundraising in Scotland came from running and walking, with people taking on events such as the Edinburgh Marathon Festival and Kiltwalks. A fantastic £29,000 was raised, with many fundraisers doubling or tripling their fundraising targets. We continue to promote the Kiltwalk events as our main focus, with an exclusive charity pitstop secured and a drive to increase participation from local community promotion, including free newspaper adverts kindly provided by London Classified.

Our total fundraising in Regional Development for Scotland was £136,622 – an increase of £19,622 from 2022/23. We received

£719,622

total funds raised to support our work in Scotland

£583,000 in legacies specifically for our work in Scotland.

65

Research

people attended our Scottish Conference

We continued to support Scottish Conference research in Scotland. As part of the 2023 grant round, we’re now funding Professor Tom £10,600 Gillingwater at the University raised by our Family of Edinburgh. Our funding Funds in Scotland support to Dr Lyndsay Murray of the University of Edinburgh continues, while our grant to 316 Professor Judith Sleeman at the University of St Andrews requests for support ended this year. responded to

raised by our Family Funds in Scotland

requests for support responded to

Muscular Dystrophy UK Annual Report | 27

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The difference your support made

Thanks to your amazing generosity, income from donations, gifts, grants, sponsorship, events and campaigns totalled £5.3m this year.

Highlights of this year’s fundraising

Our fundraising

Our Bidwells 10k Town and Gown running series

friend sports presenter and TV personality Kirsty Gallacher. Sporting greats who attended to support us included Jessica Ennis-Hill, Sir Geoffrey Boycott, Monty Panesar and Robin Cousins. Guests on the night enjoyed quizzing with our sports celebrities and raised £88,000.

This year we welcomed property consultants Bidwells as our title partner for our Oxford and Cambridge running event series. Through this partnership we not only managed to successfully grow the event to attract over 7,500 participants across the two races, and raise over £360,000, the series also became carbon neutral as Bidwells committed to offset the full impact of the event.

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Photographer: Ikin Yum
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Our Celebrity Sports Quiz

For the first time since the Covid pandemic we returned to the prestigious Long Room at Lord’s Cricket Ground for our Celebrity Sports Quiz – hosted by our charity President Gabby Logan MBE and her good

Our challenge events

Pedal Paddle Peak 2023

London Marathon 2023

This eighth year of our triple challenge event in the stunning Lake District saw a record 139 participants take part in the 30-mile cycle ride, two-mile canoe paddle, and climb of Helvellyn mountain. Members of our Family Funds, corporate supporters, and people new to the charity, came together to complete the challenge and raise a total of £122,000.

We had 126 runners in the London Marathon 2023, who between them raised a fantastic £323,368. Throughout this reporting period, we also recruited 173 runners, our largest team to date, for London Marathon 2024, which will go on to be our biggest year for fundraising at this event.

year in numbers:

£39,500

raised at the BGC Charity Day thanks to the appearance of our President Gabby Logan MBE, football manager David Moyes and comedian Russell Howard, alongside families from our community

£90,000

raised from our inaugural Double Your Donation campaign that ran for a week in December

£2.9m

raised from 75 individual legacies

£835,373

raised from 7,853 participants signing up to 43 different running events around the country

£427,000

raised at our annual Microscope Ball thanks to the support of the property industry

Photographer: Vincent White

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Supporter led events

I want to tell you that without these weekends we would not have these friendships or this wonderful support network, thank you to Muscular Dystrophy UK and the team that support us all weekend.”

Family Fund weekend participant

Our Family Funds

Our Family Funds are a special way people in the muscle wasting community can support both those closest to them and a much wider group of people living with muscle wasting and weakening conditions. Our Family Funds are an important part of our community and over the past year they raised an incredible £75,000 by organising their own events and taking part in our challenge events and national fundraising campaigns and appeals.

Congratulations to George’s Journey who entered their tenth year as a Family Fund and approached raising over £250,000; a landmark figure also reached by the Hywood’s Heroes Family Fund this year.

In 2023, we once more received funding to host a Family Fund Weekend at the fully inclusive Calvert Trust in the Lake District, bringing together our families for a memorable weekend of activity, relaxation, and an opportunity to connect with each other.

Throughout the UK people from all over the community support our work to change the future of muscle wasting and weakening conditions by fundraising in their own way. Our supporters took part in a huge variety of fundraising campaigns this year, from dress down days as part of our Go Bright campaign to bake sales for Bake a Difference.

We’re always blown away by the innovation from the community in finding new ways to fundraise and create their own events throughout the year. Highlights include:

The Taylor family from Cumbria, IronWill, delivered a three-day triathlon style event in the Lake District with over 40 people taking part, raising over £50,000 for the Duchenne Breakthrough Research Fund.

to raise funds, including our Property Golf Day at Centurion Club, Rollits Golf Day in East Yorkshire, the tenth David Salt Golf Day in Staffordshire, Fighting Back For Jack Golf Day and the Evans Family Golf Day in the West Midlands. Combined these raised more than £110,000.

Scott Mitchell, also from Cumbria, cycled through every county in England to set a new Guinness World Record, raising over £7,000.

The twice postponed Source to Sea event spearheaded by Andy Davies from West Sussex took place in April 2023 along the Thames path. An incredible 95 people took part in this accessible event, raising over £26,000.

Roger Longshaw from Oxfordshire created My Fee for MD, mowing lawns in his community in return for donations. This idea grew to friends and family completing jobs and taking donations for the charity and has now gone on to raise thousands of pounds.

Fifteen people around the UK jumped out of planes this year to raise an incredible £25,000, including researchers from the John Walton Muscular Dystrophy Research Centre who raised over £4,000.

Up and down the country, supporters organised golf days

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Photography: Supporter
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Team Jed’s 24-hour work out

Our longstanding supporter, and this year’s President’s Award winner for fundraiser of the year, Jed Thirkettle who lives with Ullrich congenital muscular dystrophy (UCMD), completed a hugely impressive 24-hour gym workout. He secured corporate sponsors and partners, extensive press coverage, and raised awareness about UCMD. In total, raising an amazing £20,000 of funds for our work. All at the age of 24.

Over the years, everything has been trial and error. However, falling in love with the gym, I wanted to challenge myself. With Mum and Dad fundraising when I was growing up, I knew that when it came to organising my own event, I had to aim big. And the idea snowballed – celebrating 24 years of life with 24 hours in the gym!” Jed Thirkettle

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RHS Chelsea Flower Show

proven mental and physical health benefits. Living with a muscle wasting condition can add to the mental load and the garden set out to create an accessible space that would benefit the muscle wasting community.

Muscular Dystrophy UK Forest Bathing Garden

Our Garden

We were introduced to our brilliant garden designer Ula Maria by our Vice President Alex Wellesley Wesley. Ula grew up in Lithuania and spent long summers in the countryside, which heavily influences her work. She was passionate about our community from the start. She spoke to Martin Hywood, living with limb girdle muscular dystrophy, who told her how lonely he felt after his diagnosis as he sat in his car wondering how his life might change. Ula set about creating a calm and inclusive space bathed in nature to contradict the cold medical spaces that our community so often need to visit.

In September 2022, we entered the first stage of applying to Project Giving Back (PGB) to have a fully funded garden at the RHS Chelsea Flower Show in 2024.

The final design included a flint wall reminiscent of muscle cells affected by muscular dystrophy and smooth accessible paths and wheelchair height planting for our visitors. This is with over 50 trees to create a forest atmosphere.

PGB is a charitable organisation that supports gardens for good causes at the Show. We knew that having a garden would provide us with a unique opportunity to elevate our brand and raise awareness about muscle wasting and weakening conditions by reaching new people.

After being selected from over 200 charity applicants to the short list, in February 2023 we made our pitch with garden designer UIa Maria to the PGB Trustees. In early spring we learnt the exciting news that we’d been selected to have one of nine show gardens.

Being in Ula researched the theme the forest has of Forest Bathing, inspired by the ancient Japanese practice of Shinrin-yoku, immersing proven mental yourself in nature away from the and physical stresses and strains of everyday life. Being in the forest has health benefits.

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Photographer: Rebekah Kennington
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Illustration: Ula Maria
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Photographer: Teri Pengilley
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Our President’s Award winners

These annual awards recognise outstanding people doing remarkable things to make muscles matter. This year’s winners are:

Fundraiser of the Year Award

Peter and Nancy Andrews Community Achievement Award

Jed Thirkettle

Bryan Gould

Jed is a truly inspirational fundraiser whose connection to our charity goes back to his childhood as a Family Fund raising money for our work. Jed astounded us this year with his determination to achieve, completing a 24-hour gym workout raising £20,000 for the charity. He is also a valued spokesperson at our fundraising events.

Bryan is a phenomenal fundraiser and greatly active campaigner. He founded and chairs the Oculopharyngeal muscular dystrophy group and has been a tireless co-chair of the West Midlands Regional Neuromuscular network, as well as leading the way with his independent campaigning against the closure of staffed rail ticket offices.

Early Scientist of the Year Award

Volunteer of the Year Award

Meredith James

Amanda Hayes

Meredith has been a considerable influence on the limb girdle muscular dystrophy field and beyond. The work from her PhD, the Development of the North Star for LGMD type muscular dystrophies (NSAD), which she completed in 2023, is currently being used in 12 clinical trials across five individual diseases.

Amanda passionately provides support to so many in the Myasthenia Gravis community, successfully running an online support group for people living with Myasthenia Gravis, speaking at virtual information seminars, and as a Peer Support volunteer. She has also worked with us as a patient expert voice for NICE.

Alexander and Valerie Patrick Award for Carer of the Year

Richard Attenborough Award for Outstanding Achievement

William Jackson

Professor

Francesco Muntoni

William, when younger, wanted to be a genetic scientist so he could find a cure for his younger brother Louis. Now aged 16 William selflessly takes on a role of providing care and support for his sibling and family.

Professor Muntoni has made an incredible contribution to the lives of many families within the muscle wasting and weakening community, either directly through his clinic and the numerous presentations he delivers at family-facing events, or indirectly through the hope the research he undertakes brings to people.

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Our finances How we raised our funds

£1 For every we spent:

is invested in fundraising to ensure we maintain a diverse portfolio to 32p support our community is spent on our charitable activities 68p £1 £3.70 For every we invested in fundraising we raised £1 70p £1 £1 £1

Total income

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13% (£1,726k)
18%
(£824k)
(£1,106k)
31% £9.5m 9% Trusts
(£894k)
12% (£768k)
Legacy
8% 9% (£2,920k)
Other income
(£1,270k)
27%
Fundraising
(£2,596k)
32%
£8m
(£1,233k)
(£2,037k)
25%
16%
(£2,176k)
Total funds
Restricted
(£4,838k)
41% 35%
Endowment
£13.8m (£419k)
Designated
(£2,876k)
General
(£5,688k)
21% 3%
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Events and promotions

Direct marketing (£824k)

Major Donors and Corporate (£1,106k)

Regional development (£768k)

Other income (£1,270k)

Total expenditure

Fundraising (£2,596k)

Access to specialist care and support (£1,233k)

Independent living (£2,037k)

Medical research (£2,176k)

Endowment (£419k)

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Our future plans

Going forwards in 2024/25, we will:

• Map and understand the provision of specialist neuromuscular services across the UK, seek to protect the provision of specialist NHS neuromuscular services and secure additional NHS resource, recognise and disseminate best practice and support neuromuscular services to navigate ongoing healthcare commissioning and delivery reforms

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Photographer: Kavi Shah
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Thank you

Our President

Honorary Life Presidents

Our Patrons

Research Vice Presidents

Vice Presidents

Our Trustees

Senior Leadership Team

• Catherine Woodhead, Chief Executive (until June 2024)

• Wojtek B Trzcinski, Chief Operating Officer / Interim Chief Executive (June 2024-November 2024)

• Dr Kate Adcock, Director of Research and Innovation

Director of Care, Communications and Support

Key Donors

Corporate Support

Sports Quiz Committee

• Diligencia Group

Microscope Ball Committee

Trusts and Foundations

• The True Colours Trust (supporting Changing Places Toilets)

The Q Trust Committee

Golf Day Committee

Clay Pigeon Shoot Committee

Joseph Patrick Trust Grants Panel

The Welfare Fund of Muscular Dystrophy UK

Finance Committee

Appointments and Remuneration Committee

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Medical Research Committee

Lay Research Panel

Services Development Committee

Northern Ireland Council

Scottish Council

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Muscular Dystrophy UK Annual Report | 41
Photographer: Rebekah Kennington
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Our policies

Fundraising statement

Our supporters are key to changing the future of muscle wasting and weakening conditions, and in observing and promoting a consistently high standard of fundraising. We regularly monitor our practices to identify training requirements and set policy priorities for our fundraising. We work to ensure a culture of honesty, integrity and respect with the public, as well as transparency of process to our donors about our cause and the way that their donation will be used. We also recognise how important it is to manage our supporters’ data compliantly, with both care and integrity. Our statement of fundraising best practice, underlies our commitment to the following personal information practices:

These actions enable us to protect vulnerable people and all other members of the public from any behaviour that could be deemed:

We offer many different opportunities for our fundraisers and donors to engage with us to allow us to fulfil our charitable objectives. These include special and challenge events; corporate partnerships; trusts and foundations; regional and community fundraising activities, including Family Funds; fundraising groups, branches and events; individual giving, which includes regular giving, major gifts, appeals, raffles and a weekly lottery, membership scheme; Christmas cards and online shop sales; legacy and in-memory programmes.

We conduct the following through commercial participation agreements - payroll giving, our gaming programme, legacy administration, the shop fulfilment, print and mailing houses for external mailings, and most of our regional and national challenge events. We monitor our third-party providers and operate due diligence checks to ensure best practice. We also carry out internal analysis to ensure the work delivered by these agencies provides best value to the charity, its supporters and users.

We are paid-up members of the Fundraising Regulator and subscribe to the Fundraising Codes of Practice. We have ensured staff remain up to date in all areas of fundraising, governance and training through mandatory online

training as well as seminars and events by relevant providers.

We received 11 complaints in total in 2023/24. These are included in the following: 0 from 34,222 mailings about our raffles to both warm and cold supporters; 0 complaints from 1,559 guests at our series of special events; 0 complaints from 398 participants at our National Third Party Challenge Events; 9 complaints from 7,671 participants at our own running events (Town & Gown and Pedal, Paddle, Peak), 0 from 403 volunteer fundraising events; 0 from 46,424 pieces of direct mail sent out; 1 complaint from 8,867 pieces of mail sent out about Gifts in Wills; 1 complaint about changes to financial processes in fundraising groups. We have worked together with the individuals who made the last two complaints mentioned to ensure we will learn from our mistakes for the future.

Financial review and policies

Our total income for 2023/24 was £9,508k (2023: £8,221k). The 16% increase in total income this year is a result of rises across the active fundraising income, other income and investment income. Active fundraising income from donations, gifts, grants, and other fundraising activities increased by 37%. The majority of that increase (over £500k) related to the funding received for the RHS Chelsea Flower Show as restricted funds, fully utilised in 2024/25. Legacies income for 2023/24 remained stable at £2,920k (2022: £2,944k), this includes £1.7m legacies accrual based on our best estimates. Investment income was £340k (2023: £169k).

Total other income, including investment and trading, amounted to £1,270k (2023: £863k). The total of £1,228k (2023: £941k) was received in government grants. These included:£382k (2023:£274k) from UK Government Covid Medical Research Charity Support Fund, £740k (2023: £450k) from the Department of Transport and £106k (2023: £217k) from the Department for Leveling Up, Housing and Communities (see Note 2).

Expenditure on charitable activities was in respect of medical research, access to specialist NHS care and support, and the provision of information, support, and opportunities to enable independent living. The total charitable expenditure has increased by over £600k (13%) from that of the previous year to £5,446k (2023: £4,826k). This increase was reflected across all charitable activities.

Medical research comprised 40% (2023: 41%) of the total charitable expenditure. Access to specialist NHS care and support comprised 23% (2023: 23%), and provision of information, support and opportunities to enable independent living comprised 37% (2023: 36%) of our charitable costs.

The charity ended 2023/24 with a surplus of £1,908k (2023: £1,084k), including £442k net gains (2023: £281k net loss) on investment assets. The surplus included £1.7m estimated accrual for legacy income, which we are expecting to receive in the future years when the legal matters relating to the estates are finalised.

Reserves policy

Free reserves available to the charity exclude restricted, endowment and designated funds, and the tangible fixed assets held as unrestricted funds. It is considered that the charity should hold free reserves to provide sufficient protection to cover core costs, including salaries and central overheads, to meet its forward unrestricted commitments should it suffer an immediate or unforeseen drop in income.

The recommended free reserves level is revised annually as part of the budget process, assessing the financial impact of the current risks facing the charity. The reserves policy is reviewed annually by the Trustees. The charity seeks to maintain free reserves to manage the risks to which the charity is exposed in the course of its business, including but not limited to safeguarding against volatile voluntary income. The Trustees consider that to meet these needs, and to operate effectively, the charity needs to maintain free reserves between £1.65m to £2.2m, based on the current analysis of risk. This has been reviewed in line with 2024/25 budget and the reserves requirement was not increased in the 2023/24.

The free reserves funds balance at 31 March 2024 was £5.7m. It continues to be higher than the target level agreed by the Trustees, partly as a result of high legacy income recognised at the year end. Due to legacy income recognition accounting requirements, we often recognise the income before the actual cash is received. Our legacy accrual (income recognised

but not yet received) was £1.7m at 31 March 2024. The timing differences between recognition and receipt of the legacy income creates a challenge for the charity in planning for expending these funds, as we cannot commit them to projects until the funds clear. The legacy accrual represents 50% of the reserves surplus of £3.5m.

In the next two years it is intended that the surplus reserves will be used to accelerate our charitable work in support of those with neuromuscular conditions, by funding a planned two years of deficit budgets, which will enable the charity to increase its investment in research and in development of its charitable activities. It will also allow us to enter the next strategic planning cycle with funds freely available to support our planning for the new strategy which will start early in the 2025/26 financial year, as the current strategy takes us to the end of the 2025 calendar year.

In line with our planning to reduce the surplus on reserves, disclosed in last year’s Impact Report, we have made the following commitments totalling £2.5m:

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The Charity does not invest directly in tobacco, armaments, high interest rate lending, gambling, adult entertainment, thermal coal and tar sands (defined by companies which derive >10% of their revenue from these).

The remaining designated funds balance represents the residual balance on the IT investment fund, to support some improvements to the information services and the CRM system.

Having reviewed the strategic risks facing the charity and the 2024/25 budget projections, the Board of Trustees considers there are sufficient reserves held on 31 March 2024 to manage those risks effectively. Accordingly, they continue to adopt the ‘going concern’ basis in preparing the Annual Report and Accounts.

In 2023/24, Trustees have reviewed the approach of the fund manager towards avoiding offenders in greenhouse gas emissions. It is felt their approach continues to be sufficient. Trustees reserve the right to exclude companies or industry sectors that carry out activities contrary to the aims of the charity, or from holding particular investments that damage the charity’s reputation. Trustees expect the fund manager to have considered the suitability of investments of the same kind as any particular investment proposed or retained.

Investment policy

The overall objectives are to create sufficient income and capital growth to enable the charity to carry out its purposes consistently year by year with due and proper consideration for future needs and the maintenance of, and if possible, the enhancement of, the value of the invested funds while they are retained. Both capital and income may be used at any time for the furtherance of the charity’s aims. The objectives are to be achieved by investing prudently in a broad range of fixed interest securities and equities, which are quoted on a Recognised Investment Exchange, and Unit Trusts and OEICs (open-ended investment companies), which are authorised under the Financial Services and Markets Act 2023. There should be no direct investment in the following: derivative contracts, including futures and options; commodities and derivatives thereof, contracts for differences or structured products. The investment policy and the investment managers’

In 2023/24, Trustees and the Senior Leadership Team (SLT) confirmed that the fund

manager was not investing in Russian businesses following the Russian invasion of Ukraine in February 2022.

Renumeration policy

Salaries of the Chief Executive and the SLT are set by the Board’s Appointments and Remuneration Committee, taking into account the performance of the charity overall, external comparisons, and the needs of the charity in the longer term. The Board’s Appointments and Remunerations Committee reviews the performance of the CEO and the SLT annually. The charity pays above the London Living Wage for all posts. We advertise vacancies on our website and seek applicants

from both our current staff and externally. No member of the SLT has a car supplied by the charity, and all staff members (and Trustees) travel on standard fares on charity business. None of the Trustees are paid any remuneration or receive other benefits from their charity work. Details of reimbursed expenses to Trustees can be found in Note 18.

Risk management

The Trustees continue to support formal risk management procedures, to assess business risks and implement strategies to minimise risk. Risks have been identified and classified in terms of their potential impact and likelihood, and the processes in place to manage them. The comprehensive risk management strategy is based upon a detailed risk register, which is subject to regular scrutiny and review. Risks are reviewed against the strategic aims of the charity and evaluated against controls in place. Action plans to minimise or remove risk where possible are in place and kept under review. A detailed risk approach review was last conducted in 2022/23 with support of an external expert and training provided to Trustees and SLT. The following risks have been identified in 2023/24 as the most significant for the charity’s financial sustainability:

a. Maintaining income levels – the charity continues to monitor the risks associated with its diverse voluntary income streams using close budget controls, clear marketing plans and monthly reviews of management accounts against targets.

b. Needing to hold a sufficient level of unrestricted funds to provide protection against loss of income, unplanned expenditure and to support

strategic growth, as well as enable the organisation to be flexible to respond to the community needs when/if required. This includes plans for spending any surplus unrestricted reserves, implemented in 2023/24 with a two to three year ambition to reduce reserves closer to the agreed minimum levels though investments in charitable activities. This has been reflected in the 2024/25 budget and the decision to designate some funds in the 2023/24 financial year.

In 2022/23 the cost-of-living crisis was a key concern for our community; the JPT Committee agreed to offer a one-off costof-living grant to people living with muscular dystrophy and associated conditions we support. These grants were approved in March 2023 and paid out from April 2023. The volume of demand for the grants created technical and administrative challenges that resulted in two complaints being received and handled.

audiences’ needs. We

continue to diversify our communication channels to ensure we increase our outreach outside our community of over 110,000 people living with a muscle wasting and weakening condition. As a result of this we launched our new refreshed brand in June 2023 and new website in May 2024.

The Muscular Dystrophy Group of Great Britain and Northern Ireland (Muscular Dystrophy UK) is a charitable company limited by guarantee registered with Companies House (Reg. 705357). It is also registered with the Charity Commission (Reg. 205395) and Office of the Scottish Charity Regulator (Reg.SC039445). The group also includes a trading subsidiarity, Muscular Dystrophy Group (Trading) Limited, registered with the Companies House (Reg. 893086) and unincorporated charitable subsidiary, Joseph Patrick Trust, registered with the Charity Commission (Reg. 294475).

Our prudent approach to risk management proved effective during the Covid-19 pandemic and in 2022/23 during the cost-of-living crisis, the biggest threats to the sector in recent years. We continue to regularly review our approach to risk to ensure it is well balanced and the interests of the Charity are protected.

Grant-making policies

Principal office: 32 Ufford Street, London, SE1 8QD.

We provide grants for research. We carry out grant calls to attract grant applications. These are peer-reviewed, and then recommended to the Trustees by the Medical Research Committee and members of the Lay Research Panel. Once a grant is approved, it is monitored annually to ensure objectives are being met.

Bankers: HSBC, 28 Borough High Street, London SE1 1YB and Royal Bank of Scotland, 40 Islington Road, London N1 8XJ.

Investment Managers: Investec, 2 Gresham Street, London EC2V 7QN.

Auditors: Moore Kingston Smith LLP, 9 Appold Street, London EC2A 2AP.

The details of the President, Patrons, Honorary Life Presidents, Vice Presidents, Trustees, Committees, SLT and advisors are set out on pages 38 to 40.

We also makes grants for equipment though the Joseph Patrick Trust (JPT) subsidiary. The JPT committee considers applications against approved criteria before approving grants.

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Structure, governance and management

(Services Development Committee, SDC), finance and fundraising (Finance Committee), Marketing (Content Advisory Group, CAG) and appointments (Appointments and Remuneration Committee). A Chief Executive, with delegated authority, is appointed by and is accountable to the Trustees for managing the day-to-day operations of MDUK and the delivery of operational plans.

Governing document

Members with a majority vote at the AGM in October 2023. Two Trustees who have served more than nine years (Professor Hanna, Chair and Ian Gordon, Senior Independent Trustee) were re-elected for a further term in October 2023, within the requirements of the Memorandum and Articles of Association. This decision was approved by more than 70% of all Trustees and supported by Company Members majority at the AGM in 2022. It was

The Muscular Dystrophy Group of Great Britain and Northern Ireland, operating as Muscular Dystrophy UK, is a company limited by guarantee governed by its Memorandum and Articles of Association, dated 2 September 1961 and as amended on 12 October 2019, to allow for current arrangements and charity law best practice. Muscular Dystrophy UK is registered as a charity with the Charity Commission and the Office of the Scottish Charity Regulator. Anybody over the age of 18 who supports and promotes the objectives of the charity can become a member, excluding current staff. Muscular Dystrophy UK has a wholly owned trading subsidiary, Muscular Dystrophy Group (Trading) Ltd. and not-for-profit grants giving subsidiary, Joseph Patrick Trust.

Members

In January 2024, we wrote to 265 charity members to ask for their confirmation as charity members, appreciating the breadth of ways people can engage with the charity and their changing needs. We now have a body of 87 charity members, who carefully monitor the charity’s progress. The charity members are volunteers drawn from the various

considered important to provide strategic leadership continuity following the turbulent years of the Covid pandemic and the cost-of-living crisis. As such, the decision to re-appoint these two Trustees was taken in the best interest of the Charity.

Trustee induction and training

New Trustees receive an induction pack of documents and attend briefings that cover Muscular Dystrophy UK’s operating plans, recent financial performance, and organisational structure. During the induction, and over time, they meet and form working relationships with staff. Development opportunities include ongoing training, briefings, and the annual Board Away Day.

stakeholder groups the charity represents: individuals, family members, scientists, doctors, MPs, Lords and others. Trustees are members. If you are keen on following the charity’s work and would be interested in becoming a member, please contact the charity.

Appointment of Trustees

Muscular Dystrophy UK has between seven and 17 Trustees. The selection, appointment, retirement and duties of Trustees are described in detail in the Memorandum and Articles of Association (article 29-44 et al). During the year, three Trustees stepped down completing their terms, one Trustee was re-elected for a second term and three new Trustees were elected. Their appointment was subject to a rigorous review by the Appointment and Remuneration Committee and Board of Trustees, bearing in mind the need for progressive refreshing of the Board’s skills and experience. All appointments and resignations were approved by the Company

Volunteers

Volunteers are central to our work. We rely on voluntary help in all aspects of the work of the charity. Volunteers work in the office, get involved in fundraising, provide their advice and guidance on many committees, provide support to individuals and families with muscle wasting and weakening conditions, and get involved with campaigning and media work. All these efforts help the

Organisation

The Board of Trustees is ultimately responsible for the management of MDUK. The Board meets quarterly, and there are standing committees covering key areas of activity: research (Medical Research Committee, MRC, and Lay Research Panel, LRP), care

charity achieve its aims and objectives and we would like to thank them all for their hard work and support.

Charity Governance Code

This code is a practical tool to help charities and their trustees develop high standards of governance. The Board is reminded of the code, and we continually work together on how we should apply these principles and practices during updates in the Board meetings, CEO reports and at the annual Board Away Day. In 2024/25 the Trustees engaged in workshops about the organisational purpose, vision, and values; were regularly updated on the culture of the organisation; supported on the updated risk management plans; and engaged in committees. These committees and the Board of Trustees are annually reviewed and updated to ensure they are an effective team with a balance of skills, experience, and backgrounds to make informed decisions, and to ensure that no one individual has undue power or influence.

Related parties

The Joseph Patrick Trust (JPT), an unincorporated charity, (Reg. 294475), is our welfare arm, which is its sole corporate Trustee. Constituted on 30 April 1986, with the support of the Patrick family, it provides direct financial assistance in the form of welfare grants to individuals and families living with muscle wasting and weakening conditions, throughout the UK. The consolidated financial statements also include the trading subsidiary, Muscular Dystrophy Group (Trading) Limited (Reg. 893086). We maintain extremely close working relationships with partner charities that also assist those living with muscle wasting conditions.

Statement of Trustees’ responsibilities

concern basis unless it is inappropriate to presume that the charitable company will continue in operation.

The Trustees, who are also directors of the charitable company, are responsible for preparing the Report of the Trustees and the financial statements in accordance with applicable law and regulations. Company law requires the directors to prepare financial statements for each financial year. Under company law, the directors have elected to prepare the financial statements in accordance with United Kingdom Generally Accepted Accounting Practice (United Kingdom Accounting Standards and applicable law). Under company law, the directors 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 company and the group and the profit or loss of the group for that period.

The directors are responsible for keeping adequate accounting records that are sufficient to show and explain the charitable company’s transactions and disclose with reasonable accuracy at any time the financial position of the charity and group enabling them to ensure that the financial statements comply with the Companies Act 2006. They are also responsible for safeguarding the assets of the company and group and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

Provision of information to auditors

In preparing these financial statements, the directors are required to:

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Independent auditor’s report

Opinion

We have audited the financial statements of Muscular Dystrophy Group of Great Britain and Northern Ireland (the ‘parent charitable company’) and its subsidiaries (the ‘group’) for the year ended 31 March 2024 which comprise the Consolidated Statement of Financial Activities (incorporating an Income and Expenditure Account), the Group and Parent Charitable Company Balance Sheets, the Statement of Group Cash Flows and notes to the financial statements, including significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including Financial Reporting Standard 102 The Financial Reporting Standard applicable in the UK and Republic of Ireland (United Kingdom Generally Accepted Accounting Practice).

In our opinion the financial statements:

(Scotland) Regulations 2006 (as amended).

Basis for opinion

We conducted our audit in accordance with International Standards on Auditing (UK) (ISAs (UK)) and applicable law. Our responsibilities under those standards are further described in the Auditor’s Responsibilities for the audit of the financial statements section of our report. We are independent of the charitable company in accordance with the ethical requirements that are relevant to our audit of the financial statements in the UK, including the FRC’s Ethical Standard, and we have fulfilled our other ethical responsibilities in accordance with these requirements. We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our opinion.

Conclusions relating to going concern

In auditing the financial statements, we have concluded that the trustees’ use of the going concern basis of accounting in the preparation of the financial statements is appropriate.

Based on the work we have performed, we have not identified any material uncertainties relating to events

or conditions that, individually or collectively, may cast significant doubt on the group’s and parent charitable company’s ability to continue as a going concern for a period of at least twelve months from when the financial statements are authorised for issue.

Our responsibilities and the responsibilities of the trustees with respect to going concern are described in the relevant sections of this report.

Other Information

The other information comprises the information included in the annual report, other than the financial statements and our auditor’s report thereon. The trustees are responsible for the other information contained in the annual report. Our opinion on the financial statements does not cover the other information and, except to the extent otherwise explicitly stated in our report, we do not express any form of assurance conclusion thereon.

Our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements, or our knowledge obtained in the course of the audit or otherwise appears to be materially misstated. If we identify such material inconsistencies or apparent material misstatements, we are required to determine whether there is a material misstatement in the financial statements themselves.

If, based on the work we have performed, we conclude that there is a material misstatement of this other information, we are required to report that fact.

We have nothing to report in this regard.

• the parent charitable company’s financial statements are not in agreement with the accounting records and returns; or

Opinions on other matters prescribed by the Companies Act 2006

In our opinion, based on the work undertaken in the course of the audit:

financial statements; and As explained more fully in the trustees’ responsibilities • trustees’ annual report statement, the trustees (who (which includes the strategic are also the directors of the report) has been prepared in charitable company for the accordance with applicable purposes of company law) are legal requirements. responsible for the preparation of the financial statements and Matters on which we are for being satisfied that they give required to report by exception a true and fair view, and for such In the light of the knowledge internal control as the trustees and understanding of the group determine is necessary to and parent charitable company enable the preparation of and their environment obtained financial statements that in the course of the audit, we are free from material have not identified material misstatement, whether misstatements in the trustees’ due to fraud or error.

In the light of the knowledge and understanding of the group and parent charitable company and their environment obtained in the course of the audit, we have not identified material misstatements in the trustees’ annual report (which includes the strategic report).

In preparing the financial statements, the trustees are responsible for assessing the group and parent charitable company’s ability to continue as a going concern, disclosing, as applicable, matters related to going concern and using the going concern basis of

We have nothing to report in respect of the following matters where the Companies Act 2006 or the Charities Accounts (Scotland) Regulations 2006 (as amended) require us to report to you if, in our opinion:

accounting unless the trustees either intend to liquidate the group or parent charitable company or to cease operations, or have no realistic alternative but to do so.

Auditor’s Responsibilities for the audit of the financial statements

We have been appointed as auditor under Section 44(1)(c) of the Charities and Trustee Investment (Scotland) Act 2005 and under the Companies Act 2006 and report to you in accordance with regulations made under those Acts.

Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue an auditor’s report that includes our opinion. Reasonable assurance is a high level of assurance but is not a guarantee that an audit conducted in accordance with ISAs (UK) will always detect a material misstatement when it exists. Misstatements can arise from fraud or error and are considered material if, individually or in aggregate, they could reasonably be expected to influence the economic decisions of users taken on the basis of these financial statements.

As part of an audit in accordance with ISAs (UK) we exercise professional judgement and maintain professional scepticism throughout the audit.

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We also:

of irregularities, including fraud. The extent to which our procedures are capable of detecting irregularities, including fraud is detailed below.

the financial statements or, if such disclosures are inadequate, to modify our opinion. Our conclusions are based on the audit evidence obtained up to the date of our auditor’s report. However, future events or conditions may cause the group or parent charitable company to cease to continue as a going concern.

The objectives of our audit in auditor’s report. However, future events or conditions respect of fraud, are to identify and assess the risks of material may cause the group or misstatement of the financial parent charitable company to cease to continue as a statements due to fraud; to obtain sufficient appropriate going concern. audit evidence regarding the • Evaluate the overall assessed risks of material presentation, structure and misstatement due to fraud, content of the financial through designing and statements, including the implementing appropriate disclosures, and whether the responses to those assessed financial statements represent risks; and to respond the underlying transactions appropriately to instances and events in a manner that of fraud or suspected fraud achieves fair presentation. identified during the audit. However, the primary • Obtain sufficient appropriate responsibility for the prevention audit evidence regarding the and detection of fraud rests financial information of the with both management and entities or business activities those charged with governance within the group to express an of the charitable company. opinion on the consolidated financial statements. We are Our approach was as follows: responsible for the direction, supervision and performance • We obtained an of the group audit. We remain understanding of the legal solely responsible for our and regulatory requirements audit report.

understanding of the legal and regulatory requirements applicable to the charitable company and considered that the most significant are the Companies Act 2006, the Charities and Trustee Investment (Scotland) Act 2005 (as amended), regulations 6 and 8 of the Charities Accounts (Scotland) Regulations 2006 (as amended), the Charity SORP, and UK financial reporting standards as issued by the Financial Reporting Council

We communicate with those charged with governance regarding, among other matters, the planned scope and timing of the audit and significant audit findings, including any significant deficiencies in internal control that we identify during our audit.

Explanation as to what extent the audit was considered capable of detecting irregularities, including fraud.

understanding of how the charitable company complies with these requirements by discussions with management and those charged with governance.

Irregularities, including fraud, are instances of non-compliance with laws and regulations. We design procedures in line with our responsibilities, outlined above, to detect material misstatements in respect

There are inherent limitations in the audit procedures described above. We are less likely to become aware of instances of non-compliance with laws and regulations that are not closely related to events and transactions reflected in the financial statements. Also, the risk of not detecting a material misstatement due to fraud is higher than the risk of not detecting one resulting from error, as fraud may involve deliberate concealment by, for example, forgery or intentional misrepresentations, or through collusion.

Use of our report

This report is made solely to the charitable company’s members, as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006 and to the charitable company’s trustees, as a body, in accordance with Section 44(1) (c) of the Charities and Trustee Investment (Scotland) Act 2005. Our audit work has been undertaken so that we might state to the charitable company’s members and trustees those matters which we are required to state to them in an auditor’s report addressed to them and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to any party other than the charitable company and charitable company’s members as a body, and the charity’s trustees, as a body, for our audit work, for this report, or for the opinions we have formed.

Andrew Stickland

Senior Statutory Auditor

for and on behalf of Moore Kingston Smith LLP, Statutory Auditor

9 Appold Street, London EC2A 2AP

Moore Kingston Smith LLP is eligible to act as auditor in terms of Section 1212 of the Companies Act 2006.

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Financial statements and notes

Consolidated Statement of Financial Activities (Incorporating an Income and Expenditure Account)

For the year ended 31 March 2024

----- Start of picture text -----
Notes Unrestricted Restricted and Total Unrestricted Restricted and Total
Funds Endowment 2024 Funds Endowment 2023
£000 Funds £000 £000 Funds £000
£000 £000
Income
Income from
charitable activities
Donations, gifts 2 3,340 1,131 4,471 2,971 296 3,267
and grants
Government grants 2 - 847 847 - 941 941
Legacies 2 2,219 701 2,920 2,949 (5) 2,944
Income from other
11 67 - 67 206 - 206
trading activities
Investment income 2, 10 340 - 340 169 - 169
Other income 2 5 858 863 19 675 694
Total income 5,971 3,537 9,508 6,314 1,907 8,221
Expenditure
Expenditure on 3 2,135 347 2,482 1,921 13 1,934
raising funds
Costs from other
3 114 - 114 96 - 96
trading activities
2,249 347 2,596 2,017 13 2,030
Charitable activities
Medical research 3, 5 523 1,653 2,176 999 998 1,997
Access to specialist 3 1,180 53 1,233 901 209 1,110
care and support
Independent living 3 813 1,224 2,037 565 1,154 1,719
Total – charitable
2,516 2,930 5,446 2,465 2,361 4,826
activities
Total expenditure 4,765 3,277 8,042 4,482 2,374 6,856
Net gain/(loss) on 9 410 32 442 (262) (19) (281)
investment assets
Net movement
1,616 292 1,908 1,570 (486) 1,084
in funds
Reconciliation of funds
Total funds
15 6,948 4,965 11,913 5,378 5,451 10,829
brought forward
Total funds
15 8,564 5,257 13,821 6,948 4,965 11,913
carried forward
----- End of picture text -----

There are no recognised gains or losses other than those disclosed above. All results are derived from continuing activities. The accompanying notes on pages 56 to 67 form an integral part of the financial statements.

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Balance Sheets

As at 31 March 2024

Statement of Group Cashflows

Year Ended 31 March 2024

Company Registration Number: 205395

----- Start of picture text -----
Notes Group Group Charity Charity
2024 2023 2024 2023
£000 £000 £000 £000
Fixed Assets
Tangible Assets 8 370 401 370 401
Investments 9 6,013 5,399 5,767 5,168
Total Fixed Assets 6,383 5,800 6,137 5,569
Current Assets
Stock 12 14 16 - -
Debtors 13 2,458 1,498 2,517 1,620
Short term investments 1,000 - 1,000 -
Cash at Bank 7,608 8,641 7,494 8,296
Total Current Assets 11,080 10,155 11,011 9,916
Creditors falling due within one year 14 (3,642) (4,042) (3,417) (3,796)
Net Current Assets 7,438 6,113 7,594 6,120
Total Assets less current liabilities 13,821 11,913 13,731 11,689
Net Assets 13,821 11,913 13,731 11,689
The funds of the Charity
Unrestricted
- Designated 15 2,876 437 2,876 437
- General 15 5,688 6,511 5,598 6,336
8,564 6,948 8,474 6,773
Restricted 15 4,838 4,578 4,838 4,529
Endowment 15 419 387 419 387
Total Charity Funds 13,821 11,913 13,731 11,689
----- End of picture text -----

The Statement of Financial Activities for the year ended 31 March 2024 for the parent charitable company only was a surplus of £2,041K (2023: £996K).

Approved and authorised for issue by the Board of Trustees on 17 October 2024 and signed on its behalf by:

Professor Michael Hanna Chairman

Joseph Gordon Treasurer

----- Start of picture text -----
2024 2023
£000 £000
Net cash inflow/(outflow) from operating activities (note a) (182) 1,069
- -
Net Cash flow from investing activities
Dividends from investments 407 159
Purchase of Tangible Fixed Assets (86) (196)
Proceeds of sale of Investments 976 3,006
Purchase of Investment (2,148) (2,904)
Net Cash provided by investing activities (851) 65
Increase/(decrease) in cash and cash equivalents in the year (1,033) 1,134
Reconciliation of net cash inflow to movement in net funds
Increase/(decrease) in cash and cash equivalents in the year (note b) (1,033) 1,134
Cash and cash equivalents at the beginning of the year 8,641 7,507
Cash and cash equivalents at the end of the year 7,608 8,641
Notes to cash flow statement
(a) Reconciliation of net movement in funds to net cash flow
from operating activities:
Net movement in funds 1,908 1,084
Dividends from investments (407) (159)
Investment (gains) / losses (442) 281
Depreciation 117 117
Decrease / (Increase) in debtors / stock 958 (620)
Increase / (Decrease) in all creditors (400) 366
Net cash provided by/(used in) operating activities 182 1,069
01-Apr-23 Cashflows 31-Mar-24
£000 £000 £000
(b) Analysis of changes in net cash funds:
Cash and cash equivalents 8,641 (1,035) 7,608
Total cash and cash equivalents 8,641 (1,035) 7,608
----- End of picture text -----

The accompanying notes on pages 56 to 67 form an integral part of the financial statements.

The accompanying notes on pages 56 to 67 form an integral part of the financial statements.

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Notes to the financial statements

For the year ended 31 March 2024

Policies

1. Accounting policies

• The Joseph Patrick Trust (JPT), an unincorporated charity, (registered charity number 294475).

Accounting convention

The financial statements have been prepared in accordance with Accounting and Reporting by Charities: Statement of Recommended Practice for Charities (SORP 2015) (Second Edition, effective 1 January 2019) applicable to charities preparing accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS102) and the Companies Act 2006. The financial statements have been prepared under the historical cost convention unless otherwise stated in the relevant accounting policy note(s). Muscular Dystrophy UK meets the definition of a public benefit entity under FRS102.

Consolidation has been done

on a line-by-line basis, with all inter-company transactions eliminated. The accounting dates and policies are the same.

Income

Income is recognised in the SOFA when the effect of the transaction results in an increase in the charity’s assets. This will be dependent on three factors:

i. Entitlement – when Muscular

Dystrophy UK has control over the rights to the resource, enabling it to receive the economic benefit.

The principal accounting policies adopted in the preparation of the financial statements are set out below.

ii. Probability – when it is probable, more likely than not that the economic benefit will be received.

Going concern accounting policies

iii. Measurement – when the monetary value can be measured with sufficient reliability.

The charitable company’s level of free reserves available at the year end, were considered adequate resources to continue in operational existence for the foreseeable future, even with continuous impact of the cost-of-living crisis. The budgets and cash flows for 2023/24 were reviewed in September 2023 and the Trustees have considered cash forecasts covering the twelve month period until October 2024. Accordingly, the financial statements have been prepared on a going concern basis and the trustees do not anticipate any material uncertainties.

Income received for a specific purpose is treated as restricted funds. Where income is received subject to donorimposed conditions that specify a future time period in which the expenditure should take place, such income is deferred and recognised as a liability. It is released as income in the accounting period in which Muscular Dystrophy UK is allowed to expend the resource.

Receipt of a legacy, in whole or in part, is only considered probable when the amount can be measured reliably through estate accounts (or cash receipt) and the charity has been notified of the executor’s intention to make a distribution. Where legacies have been notified to the charity or the charity is aware of the granting of probate, and the criteria for income recognition have not been met, then the legacy is not recognised in the accounts.

Basis of consolidation

Subsidiary undertakings are fully consolidated and hence these financial statements are referred to as ‘consolidated financial statements. Non-autonomous branches are treated as part of the parent charity and are referred to as ‘charity’ financial statements. A separate Statement of Financial Activities (SOFA) for the parent charity is not presented because Muscular Dystrophy UK has taken advantage of the exemption afforded by section 408 of Companies Act 2006. The subsidiary undertakings included in these consolidated accounts include:

by section 408 of Companies Act 2006. Services in kind are valued at the The subsidiary undertakings included in lower of their market value and these consolidated accounts include: equivalent market cost were these to be purchased directly by the charity. • Muscular Dystrophy Group (Trading) The Trustees consider that all services Limited (registered company in kind received in 2023/24 do not meet number 00893086). recognition criteria outlined in module

6 of the charity SORP 2019. Therefore, no estimates for these services were included in this set of accounts.

Expenditure

All expenditure is recognised on an accruals basis and includes irrecoverable VAT where appropriate. Grants awarded are recognised as a liability when Muscular Dystrophy UK is under a legal or constructive obligation to a third party. Expenditure on raising funds includes all expenditure incurred in pursuance of Muscular Dystrophy UK’s fundraising activities.

Charitable expenditure includes all expenditure incurred in pursuance of Muscular Dystrophy UK’s objectives. The costs of these activities are divided between grants and other direct costs. Support costs including governance costs have been allocated to each activity on the basis of expenditure incurred.

Governance costs include those

costs associated with meeting the constitutional and statutory requirements of the charity and include audit fees and costs linked to the strategic management of the charity.

Muscular Dystrophy UK awards three types of grants:

  1. Grants to fund medical research.

  2. Grants for the installation of Changing Places toilets.

  3. Grants to specific beneficiaries to enable them to purchase equipment to alleviate their muscle wasting and weakening condition, and other small welfare grants dispensed to individual beneficiaries.

Taxation

Muscular Dystrophy Group of Great Britain and Northern Ireland and the Joseph Patrick Trust are registered charities with the meaning of para 1 schedule 6 Finance Act 2010. Accordingly, they are exempt from taxation in respect of income or capital gains within categories covered by Chapter 3 of Part 11 of the Corporation Tax Act 2010 or section 256 of the Taxation of Chargeable Gains Act 1992, to the extent that such income or gains

1. Accounting policies (Cont.)

are applied exclusively to charitable purposes. No tax charge arose in the period.

Muscular Dystrophy Group (Trading) Limited donates by way of Gift Aid all taxable profits to the parent charity.

Listed investments

Listed investments are shown at the bid-market value ruling at the date of the Balance Sheet and after taking into account any subsequent impairment in value. Muscular Dystrophy UK has full discretion in its investment policy.

The Statement of Financial Activities includes the aggregate of realised and unrealised gains and losses during the year.

Unlisted investments

Unlisted investments are shown at cost unless there is reason to believe that there has been a significant reduction in their value.

Financial instruments

Basic financial instruments are initially recognised at transaction value and subsequently measured at amortised cost with the exception of investments which are held at fair value. Financial assets held at amortised cost comprise cash at bank and in hand, together with trade and other debtors. A specific provision is made for debts for which recoverability is in doubt. Cash at bank and in hand is defined as all cash held in instant access bank accounts and used as working capital. Financial liabilities held at amortised cost comprise all creditors except social security and other taxes.

Intangible and tangible fixed assets and depreciation

Items or projects with a value exceeding £500, and which have a life exceeding one year, are capitalised. Improvements to leasehold property are depreciated over the full length of the lease. Depreciation is provided on all other tangible fixed assets on a straight-line basis to write off the cost as follows:

Leasehold premises: over length of lease

Motor Vehicles: over three years All other assets: over four years.

Accounting estimates and areas of significant judgment

Operating leases

The charity provides for operating leases on property on an actual cost basis. Rent-free periods on property are apportioned over the life of the lease. Any rent-free period is to offset the additional costs incurred by moving into new premises and reflects the inducement offered in that period by the landlord to let the property.

In preparing the financial statements, Trustees are required to make estimates, judgements and assumptions that affect the application of the charity’s accounting policies and the reported assets, liabilities, income and expenditure and the disclosures made in the financial statements. Estimates and judgements are continually evaluated and are based on historical experience and other factors, including expectations of future events that are believed to be reasonable under the circumstances. Actual results may differ from these estimates.

Debtors

Trade and other debtors are recognised at the settlement amount due after any trade discount offered. Prepayments are valued at the amount prepaid net of any trade discounts due.

Judgement and estimates have been applied in the accounts in the following key areas:

Cash at bank and in hand

Cash at bank and cash in hand includes cash and short term highly • liquid investments with a short maturity of three months or less from the date of acquisition or opening of the deposit • or similar account or matures within three months of the date of the balance sheet.

Creditors and provisions

• Estimating the costs of dilapidation Creditors and provisions are at the end of the current lease recognised where the charity has a present obligation resulting from a past event that will probably result Stock in the transfer of funds to a third Stock is included at the lower of cost party and the amount due to settle or net realisable value. Donated items the obligation can be measured of stock are recognised at fair value, or estimated reliably. Creditors and which is the amount the charity would provisions are normally recognised have been willing to pay for the items at their settlement amount after on the open market. allowing for any trade discounts due.

Stock is included at the lower of cost or net realisable value. Donated items of stock are recognised at fair value, which is the amount the charity would have been willing to pay for the items on the open market.

Fund accounting policies

Employee benefits

Unrestricted funds are funds received and applied to achieve the general objectives of the MDUK.

Short term benefits including holiday pay are recognised as an expense in the period in which the service is received. Employee termination benefits are accounted for on an accrual basis and in line with FRS 102.

Designated funds are unrestricted funds earmarked by the Trustees for particular purposes.

Endowment funds are represented by capital assets held as investments which generate income which in turn is applied to specific objectives of the MDUK as laid down by the donor.

Pensions

Muscular Dystrophy UK offers defined contributions to employees’ pension arrangements. The amount charged to the SOFA in respect of pensions costs is the contributions payable within the year. Differences between contributions payable and contributions actually paid are shown as accruals in the Balance Sheet.

Restricted funds are to be used for specified purposes as laid down by the donor. Expenditure which meets these criteria is identified to the fund, together with a fair allocation of support costs where applicable.

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Notes to the financial statements

For the year ended 31 March 2024

2. Income

----- Start of picture text -----
Unrestricted Restricted Total Unrestricted Restricted Total
Funds Funds 2024 Funds Funds 2023
£000 £000 £000 £000 £000 £000
Events and promotions 1,582 144 1,726 1,304 90 1,394
Direct marketing 810 14 824 756 14 770
Major Donors and Corporate 414 692 1,106 412 362 774
Trusts 50 844 894 116 591 707
Regional development 484 284 768 589 180 769
Legacy 2,219 701 2,920 2,949 (5) 2,944
Other income 412 858 1,270 188 675 863
Total income 5,971 3,537 9,508 6,314 1,907 8,221
----- End of picture text -----*

* Of this income £1,228k comes from Government Grants (2023: £941k). The government grants included £382k (2023: £274k) from UK Government Covid Medical Research Charity Support Fund included in Trust income above, and £740K (2023: £450k) from the Department of Transport and £106k (2023: £217k) from the Department for Levelling Up, Housing and Communities included in Other income figure.

3. Expenditure

----- Start of picture text -----
Grants Other Support Total
£000 £000 Costs 2024
£000 £000
----- End of picture text -----

Raising Funds
Expenditure on raising funds
Costs from other Trading Activities
Total
Charitable Expenditure
Access to care and independent living
Access to care
Independent living
Total
Pursuit of Knowledge
Medical research
Total Charitable Expenditure
Total Expenditure		 -
2,329
153
2,482
-
109
5
114
-
2,438
158
2,596
-
1,085
148
1,233
1,018
774
245
2,037
1,018
1,859
393
3,270
1,578
337
261
2,176
2,596
2,196
654
5,446
2,596
4,634
812
8,042

3. Expenditure (Cont.)

----- Start of picture text -----
2023 Comparatives Grants Other Support Total
£000 £000 Costs 2023
£000 £000
----- End of picture text -----

Raising Funds
Expenditure on raising funds
Costs from other Trading Activities
Total
Charitable Expenditure
Access to care and independent living
Access to care
Independent living
Total
Pursuit of Knowledge
Medical research
Total Charitable Expenditure
Total Expenditure		 -
1,770
164
1,934
-
89
7
96
-
1,859
171
2,030
-
930
180
1,110
630
810
279
1,719
630
1,740
459
2,829
1,294
378
325
1,997
1,924
2,118
784
4,826
1,924
3,977
955
6,856

‘Direct Costs’ include all costs incurred in delivering the relevant activity.

‘Support Costs’ comprise of the following:

----- Start of picture text -----
2024 2023
£000 £000
Chief Executive and Human Resources 134 150
Finance and insurance 263 243
Office costs 220 377
Information Technology 160 156
Governance 36 29
Total 813 955
----- End of picture text -----

These costs have been allocated across the activities on the basis of expenditure incurred for each of the activities.

4. Staff costs (Group and Parent Charity)

----- Start of picture text -----
2024 2023
£000 £000
Remuneration of Staff
Wages and Salaries 2,386 2,205
Social Security Costs 239 206
Pensions 127 122
Total 2,752 2,533
----- End of picture text -----

No redundancies were made in the year (2023: 1). The cost of the redundancy payments was nil (2023: £8k). The monthly average number of employees during the period was 70 (2023: 65), of whom there were the following higher paid employees as detailed below.

Details of the Key Management Personnel, which consists of the Senior Management Team, can be found on page 38. Their total aggregate employment benefits were £469k (2023: £444k).

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4. Staff costs (Group and Parent Charity) (Cont.)

----- Start of picture text -----
2024 2023
No. No.
Earned between the ranges
£60,000 to £70,000 1 1
£70,001 to £80,000 1 1
£80,001 to £90,000 1 1
£110,001 to £120,000 1 1
Number of staff by activity
Direct Charitable Expenditure 25 24
Fundraising and Publicity 38 35
Management and Administration 7 6
Total 70 65
----- End of picture text -----

Pension Schemes

There were no outstanding contributions (2023: £0) at the Balance Sheet date.

5. Grant expenditure

----- Start of picture text -----
Research Welfare Total Total
Grants Grants 2024 2023
£000 £000 £000 £000
Grants awarded in the year 1,785 1,089 2,874 1,957
Grants cancelled in the year (208) (71) (279) (33)
Total 1,577 1,018 2,595 1,924
----- End of picture text -----

2023 Comparatives Research
Grants
£000		 Welfare
Grants
£000		 Total
2023
£000
Grants awarded in the year
Grants cancelled in the year
Total		 1,315
642
1,957
(21)
(12)
(33)
1,294
630
1,924

With the exception of some welfare grants that are paid to individuals, all grants are paid to institutions. A list of grants to institutions is available from the registered office. The Welfare grants include Changing Places grants.

Apart from the two strategic grants at University College London (North Star Project) totaling £330k and one grant of £97k to University of Oxford (Nemaline myopathy natural history study), there were no institutions in receipt of material research grants (over £80k pa) in 2023/24.

At the balance sheet date, the charity had conditional grant commitments that had not been accrued in the accounts as all the criteria relating to payment in subsequent years had not been met, as follows:

2024
£000		 2023
£000
Payable between one and five years
1,954
3,003

5. Grant expenditure (Cont.)

Reconciliation of grant funding commitments:

2024
£000		 2023
£000
Carrying amount at start of year
Additions
Amounts charged and cancelled in year
Carrying amount at end of year		 3,003
2,888
2,874
1,345
(2,764)
(1,230)
3,113
3,003

6. Operating lease commitments

Muscular Dystrophy UK is committed to the following minimum lease commitments under a non-cancellable operating lease on its headquarters and office equipment.

----- Start of picture text -----
2024 2023
£000 £000
Expiring up to one year 90 72
Expiring between one and five years 522 486
Expiring after more than five years 540 618
----- End of picture text -----

7. Net income

Net Income is stated after charging

----- Start of picture text -----
2024 2023
£000 £000
Auditor’s remuneration 32 29
Auditor’s remuneration - non audit services 4 5
Depreciation 117 117
Operating lease rentals 129 273
----- End of picture text -----

8. Tangible fixed assets

----- Start of picture text -----
Group Leasehold Computer Motor Other Other Total
premises equipment Cars assets equipment £000
£000 £000 £000 £000 £000
----- End of picture text -----

Cost at 1 Apr 2023
Additions
Disposals
At 31 Mar 2024
Depreciation 1 Apr 2023
Disposal
Provided for year
At 31 Mar 2024
Net Book Value
At 31 Mar 2024
At 31 Mar 2024		 309
437
16
15
28
805
17
66
-
-
3
86
(200)
(3)
-
-
-
(203)
126
500
16
15
31
688
200
188
16
-
-
404
(200)
(3)
-
-
-
(203)
11
97
-
-
9
117
11
282
16
-
9
318
115
218
-
15
22
370
109
249
-
15
28
401

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8. Tangible fixed assets (Cont.)

----- Start of picture text -----
Parent Charity Leasehold Computer Motor Other Other Total
premises equipment Cars assets equipment £000
£000 £000 £000 £000 £000
----- End of picture text -----

Cost at 1 Apr 2023
Additions
Disposal
At 31 Mar 2024
Depreciation 1 Apr 2023
Disposal
Provided for year
At 31 Mar 2024
Net Book Value
At 31 Mar 2024
At 31 Mar 2023		 309
434
16
15
28
802
17
66
-
-
3
86
(200)
(3)
-
-
-
(203)
126
497
16
15
31
685
200
185
16
-
-
401
(200)
(3)
-
-
-
(203)
11
97
-
-
9
117
11
279
16
-
9
315
115
218
-
15
22
370
109
249
-
15
28
401

10. Income from investments

----- Start of picture text -----
Group Group Charity Charity
2024 2023 2024 2023
£000 £000 £000 £000
UK Equities, UK fixed interest and other 113 81 112 85
Short term Deposit and Bank interest 294 78 286 79
Total 407 159 398 164
----- End of picture text -----

11. Investments in subsidiary undertakings

Their net assets and results for the year ended 31 March 2024 are summarised below:

All tangible fixed assets are used in the promotion of Muscular Dystrophy UK’s work; none is held for investment. Included in Other Assets are three portraits especially commissioned by the charity; they are held at a cost of £15k. In the opinion of the Trustees, they are worth not less than this valuation and as such no depreciation is charged.

9. Investments

----- Start of picture text -----
Group Group Charity Charity
2024 2023 2024 2023
£000 £000 £000 £000
Market Value at beginning of year 5,399 5,781 5,169 5,387
Acquisitions 1,148 2,904 1,070 2,871
Sales proceeds (976) (3,006) (896) (2,821)
Total 5,571 5,679 5,343 5,437
Gain/(loss) on investment 442 (280) 424 (268)
Market value at end of year 6,013 5,399 5,767 5,169
Historical Cost at end of year 5,409 5,186 5,165 4,992
----- End of picture text -----

Spread of Investments

The investments of Muscular Dystrophy UK are held as follows:

----- Start of picture text -----
Group Group Charity Charity
2024 2023 2024 2023
£000 £000 £000 £000
Investments listed on a recognised
Stock Exchange and Unit Trusts
UK and Overseas equities 4,665 3,978 4,477 3,809
UK and Overseas fixed interest 757 678 725 646
Property funds 219 233 210 223
Hedge funds 310 415 293 398
Total 5,951 5,304 5,705 5,076
Cash on Deposit awaiting investment 33 30
Unlisted equities 62 62 62 62
Total 6,013 5,399 5,767 5,168
----- End of picture text -----

Investment management costs for the year were £27k (2023: £26k).

There was no individual investment that constituted more than five percent of the total investment portfolio (at market value) as at the year end. (2023: £nil)

----- Start of picture text -----
Muscular Dystrophy Joseph Patrick Trust
Group (Trading) Ltd £000
£000
----- End of picture text -----

Fixed Assets
Current Assets
Current Liabilities
Total Net Assets
Represented by:
Total Funds
Total income
Total expenditure
Investment gains/losses and other B/S movements
Surplus for the year*
Country of Registration
Number of fully paid £1 ordinary shares
Voting rights owned by Muscular Dystrophy UK		 -
247
97
68
(141)
(181)
(44)
134
(44)
134
67
11
(114)
(116)
-
18
(47)
(87)
England
England
100
-
100%
100%

12. Stock

The stock held in Muscular Dystrophy Group (Trading) Ltd represents new goods available for sale valued at £14k (2023: £16k).

13. Debtors

----- Start of picture text -----
Group Group Charity Charity
2024 2023 2024 2023
£000 £000 £000 £000
Trade debtors 32 - - -
Amount due from subsidiary undertakings (1) - 97 21
Prepayments and accrued income 2,425 1,491 2,418 1,598
Other debtors 2 7 2 1
Total 2,458 1,498 2,517 1,620
----- End of picture text -----

All amounts are due within one year, and all intra group balances are unsecured and do not bear interest.

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14. Creditors falling due within one year

----- Start of picture text -----
Group Group Charity Charity
2024 2023 2024 2023
£000 £000 £000 £000
Accruals for grant commitments 3,113 3,003 2,939 2,789
Accruals and Deferred Income 350 573 344 568
Taxation and Social Security 6 58 - 54
Other Creditors 173 408 134 385
Total 3,642 4,042 3,417 3,796
----- End of picture text -----

15. Funds

----- Start of picture text -----
April Income Expenditure Movement Investment March
2023 £000 £000 between gains 2024
£000 funds £000 £000
£000
----- End of picture text -----

Endowment Fund
Orchid Ball
Restricted Funds
Provision of care
City Bridge Trust /
Work experience
Scotland
Psychological support
Volunteering
Joseph Patrick Trust -
Assistive Technology
Changing Places
The Garfield Weston
CCS Fund
SMA Sreening
Chelsea Flower Show
Other care
Research
The Patrick Research Fund
Congenital LMNA MD
Q Trust
FSHD Research
Duchenne Research
Ullrich Research
Nemaline Research
Congenital MD
Becker Research Fund
SMA Research
Limb Girdle research
Other research
Total Restricted Funds		 387
-
-
-
32
419
4
(4)
-
-
634
(31)
-
-
603
29
-
(20)
-
-
9
-
21
(21)
-
-
-
49
(6)
-
-
43
2,211
868
(1,194)
-
-
1,885
117
-
(117)
-
-
-
-
95
(69)
-
-
26
-
605
(321)
-
-
284
2
17
(16)
-
-
3
100
-
-
-
-
100
59
33
2
-
-
94
21
85
(9)
-
-
97
77
35
(16)
-
-
96
167
240
(287)
-
-
120
116
63
(38)
-
-
141
371
8
(97)
-
-
282
465
1
(182)
-
-
284
150
6
(82)
-
-
74
14
23
(30)
-
-
7
47
118
-
-
-
165
579
685
(739)
525
4,578
3,537
(3,277)
-
-
4,838

15. Funds (Cont.)

April
2023
£000		 Income
£000		 Expenditure
£000		 Movement
between
funds
£000		 Investment
gains
£000		 March
2024
£000
Designated Funds
IT Investment Fund
Research
Fundraising
Data Team
Tangible Assets for Charity Use
Total Designated Funds
General Fund
Total Unrestricted Funds
Total Funds		 36
-
-
-
-
36
-
-
-
2,150
-
2,150
-
-
-
170
-
170
-
-
-
150
-
150
401
86
(117)
-
-
370
437
86
(117)
2,470
-
2,876
6,511
5,885
(4,648)
(2,470)
410
5,688
6,948
5,971
4,765
-
410
8,564
11,913
9,508
8,042
-
442
13,821
2023 Comparatives April
2022
£000		 Income
£000		 Expenditure
£000		 Movement
between
funds
£000		 Investment
gains
£000		 March
2023
£000
Endowment Fund
Orchid Ball
Restricted Funds
Provision of care
City Bridge Trust /
Work experience
Scotland
Psychological support
Volunteering
Joseph Patrick Trust -
Assistive Technology
Changing Places
The Garfeld Weston
CCS Fund
Other care
Research
The Patrick Research Fund
Congenital LMNA MD
Oxford Neuromuscular Centre
Q Trust
FSHD Research
Duchenne Research
Ullrich Research
Nemaline Research
Congenital MD
Becker Research Fund
SMA Research
Limb Girdle Research
Other research
Total Restricted Funds		 406
-
-
-
(19)
387
82
-
(78)
-
-
4
19
17
(36)
-
-
-
28
30
(29)
-
-
29
60
3
(63)
-
-
-
50
-
(1)
-
-
49
2,456
695
(940)
-
-
2,211
300
4
(187)
-
-
117
6
47
(51)
-
-
2
298
-
(198)
-
-
100
31
28
-
-
-
59
219
3
(222)
-
-
-
4
17
-
-
-
21
63
32
(18)
-
-
77
104
139
(76)
-
-
167
18
53
45
-
-
116
288
83
-
-
-
371
465
-
-
-
-
465
133
17
-
-
-
150
41
-
(27)
-
-
14
45
3
(1)
-
-
47
335
736
(492)
-
-
579
5,451
1,907
(2,374)
-
(19)
4,965

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15. Funds (Cont.)

2023 Comparatives April
2022
£000		 Income
£000		 Expenditure
£000		 Movement
between
funds
£000		 Investment
gains
£000		 March
2023
£000
Designated Funds
IT Investment Fund
Tangible Assets for Charity Use
Total Designated Funds
General Fund
Total Unrestricted Funds
Total Funds		 96
-
-
(60)
-
36
323
136
(118)
60
-
401
419
136
(118)
-
-
437
4,959
6,179
(4,355)
-
(262)
6,521
5,378
6,314
(4,482)
-
(262)
6,958
10,829
8,221
(6,856)
-
(281)
11,923

to introduce newborn screening for spinal muscular atrophy (SMA) in the UK.

Endowment Fund

The Orchid Ball Fund is an endowed fund, the income from which (shown separately) is restricted in the first instance to research and welfare in Scotland. Any unused income in a financial period is then directed to funding research.

Chelsea Flower Show – this funds represent restricted income received from the Project Giving Back (PGB) to cover the costs of MDUK garden in May 2024 Chelsea Flower Show. The costs of the garden have been fully covered by this specific grant. PGB gives charitable organisations in the UK the chance to exhibit with a show garden at the RHS Chelsea Flower Show, to promote their causes.

Restricted Fund

City Bridge Trust / Work experience - this is funding received from the City Bridge Trust to support young disabled people in the London area to access work experience and develop their employability skills. This programme terminated in 2023/24.

Other Care - this includes funding for our Muscle Group activity and work to connect families from South Asian backgrounds affected by muscle wasting and weakening conditions with each other as well as general support services funding.

Scotland - this is used for activities in Scotland across support, policy and research.

Psychological Support - This is used to support our Mental Health Matters work, identifying how Muscular Dystrophy UK can best improve the mental health and wellbeing support available for people affected by muscle wasting and weakening conditions.

The Patrick Research Fund - this is a donation from the Patrick family. It is to be held for research activities relating to Duchenne muscular dystrophy.

Congenital Muscular Dystrophy - this is used to support research related to congenital muscular dystrophy condition.

Volunteering - this is funding to support our work to identify a more strategic and sustainable approach to working with volunteers to help support our community.

Oxford Neuromuscular Centre - this is used to support the funding of the MDUK Oxford Neuromuscular Centre - much of the fund has come from the Q Trust.

The Joseph Patrick Trust is a restricted trust within Muscular Dystrophy UK as explained in Note 11. Some of its assets are restricted to Assistive Technology and children (under 18) grants with remaining balance disclosed as unrestricted JPT funds.

Q Trust - this funding comes from the Q Trust. In the past these funds went to support the MDUK Oxford Neuromuscular Centre at request of the Trust. We are in a discussion with the Trust how the remaining funds will be used in the future.

MDUK currently holds six restricted funds related to our role as co-chair of the Changing Places consortium. These six funds are for:

FSHD Research - this is used to support research related to the condition FSHD (facioscapulohumeral muscular dystrophy).

Duchenne Research - this is used to support research related to the condition Duchenne muscular dystrophy.

Ullrich Research - this is used to support research related to the condition Ullrich congenital muscular dystrophy and other collagen-VI-related muscular dystrophies.

Nemaline Research - this is used to support research related to the condition nemaline myopathy. A significant proportion of these funds came via the MAP Nemaline family fund.

Congenital LMNA MD - this is used to support research related to the condition LMNA congenital muscular dystrophy.

Becker Research Fund - this is used to support research related to the condition Becker muscular dystrophy.

SMA Research - this is used to support research related to the condition spinal muscular atrophy.

The Garfield Weston CCS Fund - two year project funded by the Garfield Weston Trust to improve the reach of our support and increase our policy capacity to support NHS neuromuscular services.

Limb Girdle research - this is used to support research related into limb girdle muscular dystrophies.

Other research - this is used to support research grants for which there are no condition restrictions.

SMA Screening – this funds support MDUK involvement in the UK SMA Newborn Screening Alliance, which is working

Unrestricted Funds

Designated Fund represents IT investment in CRM and Cloud migration projects (final stage expected to be completed in 2024/25).

The designation of balances is as follows:

Fundraising (£170k) and the Data Team (£150k) funds to review our fundraising portfolio with a view to improve efficiency and products offered and enable to Data team to improve our impact reporting and data-driven decision making.

•
The Tangible Assets for Charity Use represent the amount
of unrestricted funds represented by these assets.
•
Fundraising (£170k) and the Data Team (£150k) funds to
review our fundraising portfolio with a view to improve
efficiency and products offered and enable to Data		 •
The Tangible Assets for Charity Use represent the amount
of unrestricted funds represented by these assets.
•
Fundraising (£170k) and the Data Team (£150k) funds to
review our fundraising portfolio with a view to improve
efficiency and products offered and enable to Data		 •
The Tangible Assets for Charity Use represent the amount
of unrestricted funds represented by these assets.
•
Fundraising (£170k) and the Data Team (£150k) funds to
review our fundraising portfolio with a view to improve
efficiency and products offered and enable to Data		 •
The Tangible Assets for Charity Use represent the amount
of unrestricted funds represented by these assets.
•
Fundraising (£170k) and the Data Team (£150k) funds to
review our fundraising portfolio with a view to improve
efficiency and products offered and enable to Data		 •
The Tangible Assets for Charity Use represent the amount
of unrestricted funds represented by these assets.
•
Fundraising (£170k) and the Data Team (£150k) funds to
review our fundraising portfolio with a view to improve
efficiency and products offered and enable to Data
•
The General Fund is available for the ongoing operations
of the charity.
team to improve our impact reporting and data-driven
decision making.
Represented by: 2024 Fixed Assets
£000		 Investments
£000		 Net Current Assets
£000		 Total
£000
Endowment Funds
Restricted Funds
Designated Funds
Unrestricted Funds
Total Funds		 -
419
-
419
-
-
4,838
4,838
406
-
2,470
2,876
6,013
(325)
5,688
406
6,432
6,983
13,821
Represented by: 2023 Fixed Assets
£000		 Investments
£000		 Net Current Assets
£000		 Total
£000
Endowment Funds
Restricted Funds
Designated Funds
Unrestricted Funds
Total Funds		 -
387
-
387
-
-
4,578
4,578
401
36
437
-
5,012
1,499
6,511
401
5,399
6,113
11,913

16. Legacies

The charity is entitled to a share in a number of estates which it monitors closely. The following sums have not been reflected in these financial statements in accordance with the accounting policies set out in Note 1. The potential values of these estates to the charity at the balance sheet date are as follows:

----- Start of picture text -----
2024 2023
£000 £000
Residuary 341 694
Reversionary 252 252
All sums are due to Muscular Dystrophy UK. 593 946
----- End of picture text -----

17. Status of charity

Muscular Dystrophy Group of Great Britain and Northern Ireland, operating as Muscular Dystrophy UK, is a registered charity and a company limited by guarantee. In the event of a winding up, Members are required to contribute an amount not exceeding £1. By virtue of s.30 of the Companies Act 2006, the charity does not use ‘limited’ in its name.

18. Related party transactions

During the year Trustees of Muscular Dystrophy UK made donations and received reimbursement of their expenses incurred in travelling to attend Muscular Dystrophy UK’s business, as follows:

----- Start of picture text -----
2024 2023
£000 £000
Donations 5 5
Expenses 5 1
----- End of picture text -----

No Trustee received any remuneration during the year (2023: £nil). There were no other related parties transactions.

Muscular Dystrophy Group of Great Britain and Northern Ireland. Registered charity in England and Wales (205395) and Scotland (SC039445) and a company limited by guarantee without share capital registered with Companies House (705357). Registered office address: 32 Ufford Street, London, England, SE1 8QD