MUSCULAR
DYSTROPHY
UK
OUR MUSCLES
MATTER
Annual Report 2023124
Togetherwe are stronger
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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.**
- **Here for you.** We’re here for everyone, but we know support isn’t one-sizefits-all. We take the time to listen to every individual, so we can tailor our support to you.
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.
- **Never Stop.** We’ve already made advances that would have been unthinkable just 10 years ago, and we are determined to go even further and faster.
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 share expert advice and support people to live well now.
- We fund groundbreaking research to understand the different conditions better and lead us to new treatments.
## **We work:**
- We work with the NHS towards universal access to specialist healthcare.
- to promote research
- to promote the provision of care and treatment
- Together, we campaign for people’s rights, better understanding, accessibility, and access to treatments.
- to assist those who care for persons affected by the conditions
- to provide education and training to persons affected
## **Our values**
- to raise public awareness on any matter relating to the Charity’s objects
- **Stronger together.** We believe in the power of community. That the whole is greater than the sum of its parts. Because the more of us who come together, the greater the impact we’ll make.
## **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.
- **Forward thinking.** We’re here for everyone. Whoever you are. Wherever you’re from. You are our sole focus. We set ourselves clear targets and measure our impact.
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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
- We’ve committed to providing up to £60k towards a three-year partnership with the Myotubular Trust to fund a project to understand liver disease in people with X-linked myotubular myopathy.
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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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Photographer: Teri Pengilley
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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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Photographer: Jo Ritchie
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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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Photographer: John Sanders
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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
22 | Muscular Dystrophy UK Annual Report
## **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.”**
24 | Muscular Dystrophy UK Annual Report
Muscular Dystrophy UK Annual Report | 25
## **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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26 | Muscular Dystrophy UK Annual Report
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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
28 | Muscular Dystrophy UK Annual Report
## **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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Muscular Dystrophy UK Annual Report | 31
## **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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Muscular Dystrophy UK Annual Report | 33
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32 | Muscular Dystrophy UK Annual Report
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.
34 | Muscular Dystrophy UK Annual Report
Muscular Dystrophy UK Annual Report | 35
# **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**
**----- Start of picture text -----**
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%
**----- End of picture text -----**
## **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)
36 | Muscular Dystrophy UK Annual Report
Muscular Dystrophy UK Annual Report | 37
## **Our future plans**
## **Going forwards in 2024/25, we will:**
- Provide regional networking, information and intelligence sharing, and upskilling opportunities to health professionals involved in the care of people living with muscle wasting and weakening conditions.
- Provide accurate and accessible information, support and signposting, through our national telephone and email helpline service and advocacy support where information provision is not sufficient, and empowerment is needed.
• 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
- Connect people affected by muscle wasting and weakening conditions through our national events and virtual seminars, through local groups and through our network of trained peer support volunteers.
- Provide grants to members of our community for essential powered mobility equipment.
- Deliver targeted campaigns on key areas of concern to our community and drive-up UK wide political awareness and support for muscle wasting and weakening conditions.
- Help to facilitate access to treatments for muscle wasting and weakening conditions.
- Deliver at least £6m gross fundraising budget.
- Deliver £10m charitable expenditure budget investing our reserves to cover the deficit.
- Continue as co-chair of the Changing Places Consortium and complete UK Government funded Changing Places programmes.
- Invest in a new legacy proposition to maximise the potential of this long-term income stream.
- Provide unique national physical conferences and virtual training opportunities for specialist and nonspecialist health professionals involved in the care of people living with muscle wasting and weakening conditions.
- Invest in a portfolio review of our events and campaigns, which will inform our strategic direction from 2025/26 onwards.
- Award a grant as part of • Award grants as part of our partnership with the our three-year programme LifeArc Translational Rare to drive innovative research Disease Centre. into enhancing the quality of life for people living
- • Launch a new call for with muscle wasting
- £1m strategic programmes and weakening conditions.
- grants.
- Launch our new website providing a better user experience and improved navigation.
- Deliver a successful garden at the RHS Chelsea Flower Show 2024, maximising opportunities to reach new people and raise awareness of muscle wasting and weakening conditions.
- Relaunch our partnership with
- • Invest over £500k into the the Medical Research Council 2024 new research grants to support clinical fellowships. programme.
- Continue to engage in a range of research partnerships, including the MAGIC consortium and the LifeArc programmes.
- Launch a brand campaign to reach people affected by the conditions who aren’t currently engaging with the charity.
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Photographer: Kavi Shah
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38 | Muscular Dystrophy UK Annual Report
Muscular Dystrophy UK Annual Report | 39
## **Thank you**
## **Our President**
- Gabby Logan MBE
## **Honorary Life Presidents**
- Sue Barker CBE
- Professor Martin Bobrow CBE FRS FMedSci
## **Our Patrons**
- Professor Alan E.H. Emery
- Ian Corner
- Bill Ronald
- Keith Rushton
- Michael Attenborough CBE
- Karen Lewis Attenborough
## **Research Vice Presidents**
- Professor Kate Bushby FRCP MD
- Professor Patrick Chinnery FRCP FMedSci
- Professor Dame Kay Davies DBE FRS FMedSci
- Professor George Dickson PhD
- Dr David Hilton-Jones MA MD FRCP FRCPE
- Professor Darren Monckton PhD
- Professor Francesco Muntoni FRCPCH FMedSci
- Professor Ros Quinlivan MD
- Professor Mary Reilly MD FRCP FRCPI FMedSci
- Professor Volker Straub MD PhD
- Professor Sir Douglass M Turnbull MBBS (Hons), MD, PhD, FRCP
- Professor Matthew Wood MBChB MA DPhil FMedSci
## **Vice Presidents**
- Anil Ahir
- Sophia Bergqvist
- Frances Carey
- Jeremy Champion
- Candida Crewe
- Charity Crewe
- Sebastian Crewe
- Victoria Elliston
- Sir Alex Ferguson CBE
- Andrew Graham
- Bernie Henderson
- Louisa Hill
- Tim Lumsdon
- Simon Knights
- Charles G Manby MBE
- Nicola Manby
- Andy Martin
- Ian Mathieson
- Ann McNeil
- Jeremy D Pelczer
- Julian Pritchard
- Michael A Thirkettle
- Baroness Celia Thomas of Winchester MBE
- Robert Warner
- Alex Wellesley Wesley
- Sir Guy Weston
## **Our Trustees**
- Professor Michael Hanna FMedSci, Chair
- Marcus Brown, Treasurer (until October 2023)
- Ian Gordon, Senior Independent Trustee
- Brigid Sutcliffe
- Charles Scott
- Tanvi Vyas (until October 2023)
- Martin Cardoe
- Joe Gordon, Treasurer (from October 2023)
- Clare O’Hanlon MBE
- Michael Armstrong (until October 2023)
- Michelle Anthony
- Scott Keown (until October 2024)
- Deidre Kelly CBE
- Lord Sharkey
- James Lee (from October 2023)
## **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
- Rob Burley,
Director of Care, Communications and Support
- Emma Jones-Parry, Director of Development
- Leanne Thorndyke, Director of Marketing
## **Key Donors**
- Frances Carey
- John Watson & Janis Higgie
- Jeremy and Mary Champion
- Charles and Nicky Manby
- Peter and Frances Meyer
- Mayo Marriott
- Team Jed
- The McAlister Family
- Tony and Monica Moorwood
- Bill and Jacky Ronald
- Charles and Donna Scott
- Sally Whittet and Professor Michael Joy OBE
- The Q Trust
- MAP Nemaline
- Mr & Mrs Graham Williams
## **Corporate Support**
- AirNow Technology
- Bidwells
- BGC Charity Day
- BMW North Oxford
- CeX
- Chimera
- Crocus
- DC Merrett
## **Sports Quiz Committee**
• Diligencia Group
- Forex Clear
- Martin Cardoe
- Mail Metro Media
- Rich Cumbers
- Marchmont Investment
- Rob Driver
- Management
- Lou Hill
- Nurture Landscapes
- James Pearson
- Orbis
- Ravi Seesurrun
- Premier Paper Group Ltd
- Vanessa van Blerk
- Project Giving Back
- Property Week
## **Microscope Ball Committee**
- Rosethorn Capital Partners
- Siren
- Michelle Anthony, Chair
- Tennants Consolidated
- Ula Maria Studio
- David Allen
- Matt Allen
## **Trusts and Foundations**
- Jack Beeby
- Garfield Weston Foundation
- Guy Bowring
- Hugh Fraser Foundation
- Lucy Burns
- Sir Samuel Scott of Yews Trust
- Adam Cradick
- Rhys Davies
- The Albert Gubay Charitable Foundation
- Fraser Draycott
- Abigail Francis
- The Annandale • Harry Foster Charitable Trust • Charles Howard
- The Christos Lazari Charitable Foundation
- Louise Ioannou
- Scott Keown
- The Cranbury Foundation
- Lizzie Knights
- The Frances and Augustus Newman Foundation
- Jonny Lee
- Tim Lumsdon
- The RS Macdonald Charitable Trust
- Ben Miller
- Nick Moldon
• The True Colours Trust (supporting Changing Places Toilets)
- Matt Nimmo
- Rich Oliver
- Stephen Rigby
- The Elizabeth Hardie • Simon Tann Ferguson Charitable • Mark Tatam Trust Fund • Trish Watson
- The Edinburgh Trust
- Andrew Wedderspoon
## **The Q Trust Committee**
## **Golf Day Committee**
- Sophia Bergqvist
- Stephen Rigby
- Candida Crewe
- Charity Crewe
## **Clay Pigeon Shoot Committee**
- Victoria Elliston
- Inez Gordon
- John Eaglesham
- Rebecca Jennings
- Nick Moldon
- Nicky Manby
- Simon Tann
- Alex Wellesley Wesley
## **Joseph Patrick Trust Grants Panel**
- Robert Warner, Chair
- Karen Duckmanton
- Jane Field
- Jane Freebody
- James Lee
- Patricia Lock
- Julian Pritchard
- Kirsty Read
## **The Welfare Fund of Muscular Dystrophy UK**
- Robert Warner, Chair
- Jo Becker
- Karen Duckmanton
- Jane Field
- Jane Freebody
- James Lee
- Patricia Lock
- Julian Pritchard, Vice Chair
- Kirsty Read
## **Finance Committee**
- Marcus Brown, Chair (until October 2023)
- Helene Crutzen
- Ian Mathieson (until March 2023)
- Charles Scott
- Joseph Gordon, Chair (from October 2023)
- Brigid Sutcliffe, Vice Chair (from October 2023)
- Michael Armstrong
- (resigned October 2023)
- Scott Keown James Lee (joined October 2023)
## **Appointments and Remuneration Committee**
- Professor Mike Hanna, Chair
- Ian Gordon
- Charles Scott
- Brigid Sutcliffe
- Lord Sharkey
40 | Muscular Dystrophy UK Annual Report
## **Medical Research Committee**
- Professor Patrick Chinnery FRCP FMedSci PhD, Chair (until October 2023)
- Dr Gillian Butler-Browne
- PhD, Vice Chair (until October 2023), Chair (from October 2023)
- Professor Tracey Willis MB CHB MD, Vice Chair (from October 2023)
- Dr Heidi Fuller PhD
- Professor Grainne Gorman MRCP, PhD
- Dr Meredith James PhD
- Dr Jasper Morrow MBChB PhD FRACP (until July 2023)
- Professor Ketan Patel PhD
- Professor Linda Popplewell PhD
- Professor Olivier Pourquie PhD
- Professor Frédéric Relaix PhD
- Professor Laurent Servais MD PhD
## **Lay Research Panel**
- Peter Ashley, Chair (from November 2023)
- Richard Davenport, Vice Chair (until November 2023)
- Alison Kay, Vice Chair (from November 2023)
- Graham Cloke (from December 2023)
- Tammerin du Preez
- Graham Gornall
- Alexa Gummow
- Victoria Houghton
- Corinthia Joseph
- Modupe Joshua
- Hannah Langford
- William Love
- Andy Rose
- Amber Tirimanna
- David Towler
- Roli Roberts (Scientific Advisor)
## **Services Development Committee**
- Professor Deirdre Kelly, Chair
- Dr Chiara Marini-Bettolo
- Dr Jatin Pattni
- Sheila Hawkins
- Lloyd Tingley
- Professor Francesco Muntoni
- Professor Ros Quinlivan
- Carolyn Young
- Tanvi Vyas
## **Northern Ireland Council**
- Claire O’Hanlon, Chair
- Claire Boylan, Secretary
## **Scottish Council**
- Dr Sheonad Macfarlane BSc Med Sci, MB ChB, Chair
- Lindsey Armstrong
- David Gale
- Catherine Gillies
- Allyson Townhill
- Jon Watkins
- Jodie Murphy
- Joe Moan
- Gerry McMenemy
- Elizabeth McHugh
- Fiona Neale
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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:
- To deliver best practice rather than solely compliance.
- To adhere to the guidelines of the Data Protection Act 2018 and GDPR.
- To never seek to sell supporter data.
- To always inform individuals if we are conducting research that impinges on their privacy; to apply the principle of data minimisation and only capture in our research the minimum amount of personal data required.
- To enable our audiences to choose which communications they receive and how.
These actions enable us to protect vulnerable people and all other members of the public from any behaviour that could be deemed:
- an unreasonable intrusion into a person’s privacy
- unreasonably persistent
- placing undue pressure on a person to give.
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:
- We have designated £2.15m for two strategic research grants, and we have announced research grant calls for funding starting early in the 2024/25 financial year.
- We have designated £170k
- to invest in our fundraising, to ensure we have a sustainable and diverse income portfolio and to increase our resilience to changes in external economic factors.
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- We have designated £150k performance are reviewed by towards our data and impact the Finance Committee on an analysis, to ensure our decision annual basis. making is more data based to respond better to our **Ethical considerations** community’s needs.
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.
- **c.** The impact of a stock market crash on the value of the investment portfolio, mitigated by taking the advice of professional investment managers and long-term investment strategy and maintaining higher than expected reserves to protect the charity against external economic factors.
- **d.** Data protection breach: given GDPR, fines and attacks on data, this is a very real risk to the charity; leading professionals have been advising us and we continue to work proactively to address this. We have upgraded our database and data storage environment (cloud) to ensure we take advantage of the latest available technologies. We work closely with our external IT provider to ensure we follow best industry practices to protect the charity from cyber-security threats, including staff training and 24-hour network monitoring services.
- **e.** Providing information that meets our users’ needs is essential for their continued support – the charity will continue to review all communications, publications, and the website to ensure they meet our
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.
- **f.** Staff recruitment and talent
- retention continues to pose a risk among the third sector - the charity is engaging with **Reference and**
- team members on wellbeing, **administrative details**
- sustainability and equality, The Muscular Dystrophy
- diversity and inclusion to build Group of Great Britain and
- a workplace staff are proud to Northern Ireland (Muscular
- be part of. We have relocated to a smaller office and have offered staff flexible and agile registered with Companies
- working conditions that caters for all.
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:
- In preparing these financial So far as each of the directors statements, the directors is aware at the time the are required to: report is approved, there is no relevant audit information
- • Select suitable accounting of which the company’s
- policies and then apply auditors are unaware; and
- them consistently. the directors have taken all
- • Observe the methods steps that they ought to have and principles in the taken to make themselves Charities SORP. aware of any relevant audit
- • Make judgments and information and to establish accounting estimates that the auditors are aware of that are reasonable that information. This report, and prudent. incorporating the Strategic
- • State whether applicable Report, is approved by the UK accounting standards Board and signed on its have been followed, behalf by:
- State whether applicable UK accounting standards have been followed, subject to any material departures disclosed and explained in the financial statements.
- Prepare the financial **Professor Michael Hanna** statements on the going Chair, 17 October 2024
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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:
- give a true and fair view of the state of the group’s and the parent charitable company’s affairs as of 31 March 2024 and of the group’s incoming resources and application of resources, including its income and expenditure, for the year then ended.
- have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice; and
- have been prepared in accordance with the Companies Act 2006, the Charities and Trustee Investment (Scotland) Act 2005 (as amended) and regulations 6 and 8 of the Charities Accounts
(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.
- the parent charitable company has not kept adequate and sufficient accounting records, or returns adequate for our audit have not been received from branches not visited by us; or
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:
- certain disclosures of trustees’ remuneration specified by law are not made; or
- the information given in law are not made; or the trustees’ annual report (which includes the strategic • we have not received all the report) for the financial year information and explanations for which the financial we require for our audit. statements are prepared is consistent with the **Responsibilities of the Trustees** financial statements; and
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:
- Identify and assess the risks of material misstatement of the financial statements, whether due to fraud or error, design and perform audit procedures responsive to those risks, and obtain audit evidence that is sufficient and appropriate to provide a basis for our opinion. The risk of not detecting a material misstatement resulting from fraud is higher than for one resulting from error, as fraud may involve collusion, forgery, intentional omissions, misrepresentations, or the override of internal control.
- Obtain an understanding of internal control relevant to the audit in order to design audit procedures that are appropriate in the circumstances, but not for the purposes of expressing an opinion on the effectiveness of the group and parent charitable company’s internal control.
- Evaluate the appropriateness of accounting policies used and the reasonableness of accounting estimates and related disclosures made by the trustees.
- Conclude on the
- appropriateness of the trustees’ use of the going concern basis of accounting and, based on the audit evidence obtained, whether a material uncertainty exists related to events or conditions that may cast significant doubt on the group and parent charitable company’s ability to continue as a going concern. If we conclude that a material uncertainty exists, we are required to draw attention in our auditor’s report to the related disclosures in
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.**
- We obtained an
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
- We assessed the risk of material misstatement of the financial statements, including the risk of material misstatement due to fraud and how it might occur, by holding discussions with management and those charged with governance.
- We inquired of management and those charged with governance as to any known instances of non-compliance or suspected non-compliance with laws and regulations.
- Based on this understanding, we designed specific appropriate audit procedures to identify instances of non-compliance with laws and regulations. This included making enquiries of management and those charged with governance and obtaining additional corroborative evidence as required.
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._
52 | Muscular Dystrophy UK Annual Report
Muscular Dystrophy UK Annual Report | 53
## **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.
54 | Muscular Dystrophy UK Annual Report
Muscular Dystrophy UK Annual Report | 55
## **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.
56 | Muscular Dystrophy UK Annual Report
Muscular Dystrophy UK Annual Report | 57
## **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.
- Estimating the useful economic life of tangible fixed assets
- Estimating the probability of the receipt of legacy income and the amount to be received
- Valuation of services received in kind.
-
## **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.
58 | Muscular Dystrophy UK Annual Report
Muscular Dystrophy UK Annual Report | 59
## **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.
- ‘Access to care’ includes Policy, Communications and training activities. ‘Independent living’ includes advocacy, care, equipment grants and Changing Places.
- ‘Research‘ includes the research grants and departamental running costs.
-
- ‘Governance‘ includes the annual audit fee and Trustees expenses.
## **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).
60 | Muscular Dystrophy UK Annual Report
Muscular Dystrophy UK Annual Report | 61
## **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|
62 | Muscular Dystrophy UK Annual Report
Muscular Dystrophy UK Annual Report | 63
## **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**
- The accounts of Muscular Dystrophy UK (i.e. ‘charity’ accounts) incorporate the results of the following entity on a line-by-line basis:
- Joseph Patrick Trust, a separately registered charity, 294475, which makes grants towards welfare equipment. Muscular Dystrophy UK is the sole corporate Trustee.
- Muscular Dystrophy Group (Trading) Limited, 893086, which undertakes trading activities on behalf of the charity and covenants all profits to the charity. Muscular Dystrophy UK is the sole shareholder.
-
- They are both registered at 32 Ufford Street, London, SE1 8QD.
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.
64 | Muscular Dystrophy UK Annual Report
Muscular Dystrophy UK Annual Report | 65
## **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**||||||
66 | Muscular Dystrophy UK Annual Report
Muscular Dystrophy UK Annual Report | 67
## **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.
- The provision of grants to motorway service areas in England to install Changing Places toilets.
- The provision of grants to operators of A road service areas in England to install Changing Places toilets.
- • The provision of grants to train operating companies in England to install Changing Places toilets.
- • The provision of information and advice to Local Authorities in England as they utilise c.£30m of government funding to install Changing Places toilets in existing buildings.
_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.
- Improvements to the Changing Places website and digital map.
_Becker Research Fund_ - this is used to support research related to the condition Becker muscular dystrophy.
- Support to cover the general costs associated with MDUK’s role as co-chair of the Changing Places Consortium.
_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).
-
- Muscular Dystrophy UK’s reserves policy is reviewed regularly to ensure that the charity has sufficient cash and other reserves to meet its present and future commitments in an orderly and sustainable manner.
- Strategic research fund to support two key multiyear projects (Life Arc and a new strategic research call for a multiyear project of approximately £1m) (£2.15m).
-
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.
|•
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