Impact Report and Financial
Statements 2010/11 of the
Muscular Dystrophy Campaign
With gratitude …
We rely almost entirely on voluntary
donations and legacies to fund our
work. Dedicated volunteers, companies,
trusts and foundations help us to raise
money to fund our work. Without this
valued support, we would not be able
to do any of the vital work that you will
read about in this Impact Report.
While it is impossible to list every
individual here, please know that our
most sincere thanks go to everyone
who has supported us through gifts
and donations and through their
ongoing commitment to our cause.
Albert Edward Procter Charitable Trust
Albert Hunt Trust
Sir Alex Ferguson CBE
Alexander Patrick
Allied Vehicles
Annandale Charitable Trust
Austin and Hope Pilkington
Charitable Trust
Bank of America Merrill Lynch
Baxters
Bell Fundraising
Big Lottery Fund
Carphone Warehouse Foundation
CeX
Charles and Nicky Manby
Chemring Group PLC
Chi-X Europe
City Bridge Trust
Clapp Family Charitable Trust
Clear Channel
Constance Travis Charitable Trust
Cranbury Foundation
Davis-Rubens Charitable Trust
www.muscular-dystrophy.org
Donald Forrester Trust
Duncan Lewis Solicitors
Fowler, Smith and Jones Charitable Trust
Guy Weston
Genzyme Therapeutics
Halifax Bank of Scotland Foundation
Harley Davidson
Ian Corner
IBB Trust
Imperial Tobacco
Infochem Computer Services Ltd
J K Stirrup Deceased Charitable Trust
J R Rudd Foundation
Jeremy Champion
Joseph Strong Frazer Trust
Kirby Laing Foundation
Leathersellers’ Company Charitable Fund
Lodge of Progress
Marks and Spencer Dundee
McBains Cooper Consulting Limited
Michael and Donna Thirkettle
Michael Shanly Charitable Trust
Miss Marion Broughton’s Charitable Trust
Montague Thompson Coon
Charitable Trust
Mrs Gladys Row Fogo Charitable Trust
N & P Hartley Memorial Trust
Newman’s Own Foundation
Next plc
Pamela Barlow Charitable Trust
Robert and Evelyn Maud
Hall Charitable Trust
Rosetrees Trust
Schroder Charity Trust
ShareGift
St Michael’s and All Saints Charities
Tamar Foods
Templeton Goodwill Trust
Tennants Consolidated Ltd
Thales UK
The Elizabeth Hardie Ferguson
Charitable Trust
The Garfield Weston Foundation
The John Booth Charitable Foundation
The Q Trust
The Rayne Foundation
vinvolved
Cover image: to celebrate the 25th anniversary of
the Joseph Patrick Trust in spring 2011, Alexander
Patrick – who founded the Trust – presented Libby
Smalley with a brand new powered wheelchair.
The Muscular
Dystrophy
Campaign is
the leading
UK charity
focusing on
muscle-wasting
disease. We
are dedicated
to beating
muscular
dystrophy and
improving
the lives of
all 70,000
children and
adults in the
UK affected by
muscle-wasting
disease.
page 1
Our work has five
main focuses:
•we fund world-class research to find effective treatments and cures
•we provide practical information, advice and emotional support for individuals, their carers and families
•we campaign to bring about change and vital service improvements and raise awareness of muscle-wasting disease
•we award grants towards the cost of specialist equipment, such as powered wheelchairs
•we provide specialist education and development for health professionals.
History
The Muscular Dystrophy Campaign was
established in 1959 to raise money for
research into causes of and cures for
muscular dystrophy. In the more than 50
years since then, diagnosis of the many
different forms of muscular dystrophy
and related muscle-wasting disease has
improved and we now provide support
for more than 60 different conditions.
•More than 70,000 children and adults in the UK have muscular dystrophy, a type of muscle-wasting disease or related neuromuscular condition, supported by the Muscular Dystrophy Campaign.
•About 70 percent of all people supported by the Muscular Dystrophy Campaign are affected by muscle-
wasting diseases that are inherited and about 30 percent that are acquired.
•Muscle-wasting disease does not discriminate. It affects babies, children and adults, both males and females, and all ethnic groups. While all conditions are genetic, some can be inherited or occur out of the blue where there is no family history.
•The severity of the muscle-wasting diseases varies enormously. For the most severe disorders children can die at birth or in their first year of life, while the mildest forms can have only a slight effect on elderly people and have no life-limiting impact.
Our mission is to lead
the fight against musclewasting disease in the UK.
In the following pages, read about
the impact of all the areas of our work
in the UK, none of which would be
possible without your valued support.
We rely almost entirely on voluntary
donations to fund our work.
Contents
Welcome
A note from the directors
Our year in highlights
Self-management and self-care Clinical and care services
Best practice development
The NeuroMuscular Centre
Scientific and clinical research Improving care and support
Fundraising
It’s all about our people
Get involved
Spreading the word
Joseph Patrick Trust
Financial summary Financial statements
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people are at the heart of everything we do
Welcome
Welcome to the Muscular Dystrophy
Campaign’s Impact Report for the
year ending 31 March 2011.
The last year was one of
change, challenge and
continued hard work in
vital research and towards
improvements in specialist
care, support, services
and treatment for families
affected by muscle-wasting
disease. For a relatively
small but very determined
charity, our work resulted in
some big changes despite
the difficult economic
times in which we are
living. Indeed, we drew
on our reserves last year
to maintain our progress
but we feel optimistic
next year will be a more
successful year financially.
With our continued funding of pioneering
research, we saw some very encouraging
progress. ‘Exon skipping’ technology is
moving closer to clinical trials, bringing
real hope to families affected by
Duchenne muscular dystrophy, and a
new technique was developed that can
allow families affected by mitochondrial
myopathy to have unaffected children.
Our campaigns team made great
strides ahead for individuals and
families, in securing more NHS-funded
neuromuscular care advisors in post in
the UK than ever before, and in seeing the
launch of the first national development
strategy from government, calling
for an England-wide neuromuscular
service plan. Progress was achieved
in the devolved countries too.
We provided information, support
and advice for a growing number
of individuals, families and carers
and specialist education for health
professionals. We continue to support
and develop care advisors; we reached
more individuals and families through
our local Muscle Groups, with more
people actively campaigning for better
services right across the country.
Our new online forum, TalkMD, along
with our Facebook and Twitter profiles,
engaged more individuals and got
them talking to us and to each other.
We made the headlines with the
Trailblazers’ challenge of a number of
airlines and rail companies, while news
of campaign successes and research
breakthroughs kept our fight against
muscle-wasting disease in the public eye.
Robert
Meadowcroft
Chief Executive
www.muscular-dystrophy.org
We feel enormously pleased with the
success of the Tesco partnership (we were
their Charity of the Year in 2009/10). It has
raised more than £5.2m, which so far has
helped more than 700 children access the
wheelchairs and equipment they require
to live as independently as possible.
We joined forces as the Chairman and
CEO following the Annual General
Meeting in September 2010, and we
wish to give a special thank you to
Professor Martin Bobrow CBE for his
commitment in serving the charity as
Chairman for 15 years, and giving us the
benefit of his expert knowledge and
wise counsel throughout this period.
We feel it is an honour to be leading
this charity forward, together with the
staff and the Board. These are tough
times for all organisations but we are
determined and optimistic in our quest to
defeat muscle-wasting disease through
research, better care, information and
the provision of vital equipment. It takes
a dedicated community of funders,
volunteers, families, Board members
and staff to make this happen, and
we are grateful to have such a strong
community. Our thanks to you all.
Bill Ronald
Chairman
page 2
A note from the directors
Dr Marita
Pohlschmidt
Director of Research
Identifying high-quality
research and nurturing
this research to success have been among
our key strengths in the past year. We
saw some of these investments come
to fruition last year, with promising
technology making a major leap towards
the development of treatments. We
expanded our communication service
so that our families and the public are
up to date with these advances and
understand the progress researchers
are making in the UK and worldwide.
Nic Bungay
Director of
Campaigns and Care
Thanks to our hard
work with people
living with muscle-wasting disease,
clinicians and the NHS, this year we have
more neuromuscular care advisors in
post than ever before. Backed by our
parliamentary groups across the UK,
the NHS is starting to invest in essential,
specialist neuromuscular services. Our
network of young campaigners – the
Trailblazers – also continues to grow,
having launched investigative reports and
campaigns on tourism and employment.
James Hanaway
Director of
Fundraising
The Muscular Dystrophy
Campaign continues
to rely on the generous support of
individuals, supporter groups, companies
page 3
and trusts across the UK to fund its vital
work. Our volunteer fundraising groups
have grown in strength and numbers this
year and plans have been set to engage
with new fundraising partners and
develop innovative events and campaigns.
Fiona Jackson
Director of
Marketing and
Communications
Our main priority is to
ensure we are the first port of call for
everyone at diagnosis. We are building
relationships with families, carers and
health professionals as well as with
media contacts and the government to
raise awareness with the general public
and to attract new supporters of the
Muscular Dystrophy Campaign’s brand,
its work and ways to become involved.
We share our stories and successes
through our website and publications,
the press, broadcast media, our online
forums and social network sites.
Lyn Inman
Director of Education
and Development
We are providing
support to the UKwide team of care advisors who support
individuals and families. Our regional
and national events for families and
professionals continue to be well-received
opportunities for peer support, the
sharing of best practice and hearing about
clinical and research developments. We
will continue to drive the development
of neuromuscular services through our
new Services Development Committee,
which oversees the development of
our care, information, campaigns,
education and development services.
Judith SpencerGregson
Director of Finance
We continue to
prioritise the allocation
of our resources to fund research and
provide care services and campaigning
to support those living with musclewasting disease. I am delighted to have
recently joined the charity and look
forward to contributing to its aims
and objectives in the coming year.
Matthew
Lanham
Chief Executive of
the NeuroMuscular
Centre (NMC)
We have had another highly successful
year of improvements, development
and growth at the NMC. More and more
people with neuromuscular conditions
are finding out about our services and
benefiting from them. The year ahead
is both daunting and exciting; after 21
years, NMC will now separate formally
from the Muscular Dystrophy Campaign
and become an entirely independent
charity. We will, of course, continue to
work together and, on behalf of everyone
at NMC, I would like formally to record
our thanks here for the great help and
support given to NMC over the years.
people are at the heart of everything we do
Our year in highlights
Towards treatment
The ‘exon skipping’ clinical trials for
Duchenne muscular dystrophy have
taken great strides over the past year.
Spearheaded by our research funding
over the past 20 years, these trials are
producing encouraging results and
progress towards later stage clinical
trials, bringing real hope to families.
Leading the news
The Muscular Dystrophy Campaign
was the lead story on BBC’s Newsnight
in August, in response to our 2010
Patient Survey: State of the Nation report
and the NHS’s proposed changes to
GP commissioning. All Inclusive?, the
Trailblazers’ report into the needs of
disabled travellers, was launched in
August, with media coverage in The
Guardian, The Daily Mirror and on BBC’s
London News. The young campaigners
also took on a budget airline, over their
wheelchair weight restrictions and our
media campaign led to coverage in The
Guardian and Daily Mirror, and to the
airline changing its baggage policy.
Young campaigners in
Northern Ireland
The Northern Ireland Trailblazers
group was established in April and
met for the first time in Belfast.
In the media, socially speaking
In August, we launched our online
forum, TalkMD, for adults living with
or caring for someone with a muscle-
wasting disease to communicate with
others, offering valuable peer-topeer support on a range of topics.
Trailblazers and transport
Trailblazers were expert guest speakers
at a meeting of the London Assembly
Transport Committee in June on
accessibility, speaking of challenges
faced by disabled people (as pictured
below left) and putting forward solutions
identified in the End of the Line report.
Life-changing grants
Through our Tesco partnership as
their Charity of the Year, we awarded a
further 250 grants during the year for
wheelchairs, electric beds and other
vital equipment, worth over £1.5m.
In pursuit of cures and treatments
We awarded a further seven PhD
studentships and pump-priming research
grants to find cures and treatments,
bringing our total investment into
research last year to an impressive £1m.
Growing volunteer fundraising
We established 22 new fundraising
committees across the UK, almost
doubled the funds raised by our
volunteers and supporters to over £1m
and had over 600 people register with us
to organise or participate in fundraising
events, raising over £550,000.
Encouraging research results
Professor Doug Turnbull and colleagues at
Newcastle University published fantastic
results from their Muscular Dystrophy
www.muscular-dystrophy.org
page 4
Campaign-funded research. They have
developed a technique that prevents
families affected by mitochondrial
myopathy from transmitting the
condition to their children.
Wellcome news
First-class research funded by the
Muscular Dystrophy Campaign led to
the award of a £2.5m Wellcome Trust
and Department of Health grant to
Dr Matthew Wood’s research group
at Oxford University, to conduct the
first clinical trial of next generation
‘exon skipping’ technology.
The Thomas Report
Following a nine-month review led
by Dr Dai Lloyd AM into access to
specialist neuromuscular care in Wales,
the Thomas Report was presented to
Health Minister Edwina Hart AM in July.
The Mackie Report
Over 40 families and supporters
were joined by MSPs at the launch
in the Scottish Parliament of the
Cross Party Group’s Mackie Report in
September. The report calls for major
improvements to services in Scotland.
Young disabled people have
a voice in Westminster
The All Party Parliamentary Group for
Young Disabled People launched in
February 2011 at Westminster. The
new group will tackle issues facing
young disabled people and challenge
the attitude of society towards
access for young disabled people.
page 5
Neuromuscular services
now a priority
Thanks to the hard work of our
campaigning families and parliamentary
supporters, the NHS took groundbreaking
steps to introduce a national
neuromuscular service plan in March.
Glittering sports event launched
The Long Room at Lord’s Cricket
Ground was filled with sports celebrities
and supporters of the Muscular
Dystrophy Campaign who all joined
in our inaugural Sports Quiz (pictured
above) in March 2011, hosted by
our President, Sue Barker MBE.
commitment to sharing news of
the latest advances in research with
all our supporters and families.
Professional education
In January we established an education
and development directorate designed to
improve care and support for individuals
and families affected by muscle-wasting
disease. We are providing specialist
education, development and peer
support for health professionals.
From bench to bedside
We secured cash assurances from
the NHS to ensure funding for a
total of 30 neuromuscular care
advisors around the UK.
In March 2011 we jointly organised
the fourth Translational Research
Neuromuscular Conference in partnership
with the MRC Centre for Neuromuscular
Diseases in London. Over 200 scientists
and clinicians from the UK and abroad
had an opportunity to network
and report their latest findings.
International research
Creating community
We kept in close touch with international
research developments at the
International Congress on Neuromuscular
Diseases, held every four years with
more than 1,500 international scientists
and clinicians working on musclewasting disease. This underpins our
We extended our peer-to-peer support
networks by introducing MD Links and
offering Living with MD days outside of
London. We extended our network of
campaigning Muscle Groups to Northern
Ireland as we reached all parts of the UK.
Neuromuscular care advisors
people are at the heart of everything we do
Self-management and self-care
We work hard to improve care and support for
individuals and families living with muscle-wasting
disease. We provide practical information, advice and
support for individuals, their families and carers.
MD Links
The MD Links programme was launched
in April 2010, in response to the need
for more local peer support across
the UK. We are able to help people
make a connection with someone
else with a similar condition, by email
or by phone. To date, there are 170
registered users and they say how
helpful it is to connect with people who
understand what they going through.
Living with MD
Living with MD was piloted in London in
2008 and officially launched as a national
programme in June 2010. Developed by
a steering group of adults with muscular
dystrophy, the programme content is
reviewed regularly to ensure its relevance.
The days are held in various areas
throughout the UK, and are designed to
help people with muscle-wasting disease
I have to admit, I was a
little dubious about how
it was going to go, but
it went wonderfully. We
were on the phone for
an hour, and it was just
constant chat. We talked
about muscular dystrophy
of course, but not just that.
We talked about family
and many other things.
Linda Talbot, who has oculopharyngeal
muscular dystrophy, on MD Links
www.muscular-dystrophy.org
to take control of their treatment and
manage their own condition. Nine events
were held in London last year, and we
plan to extend the programme nationally.
Care events
The care and support team ran events
for families and individuals affected
by muscle-wasting disease. The
days are designed for informationsharing and for peer support.
In December 2010, 15 children
came to our Children’s Party at the
Alder Hey Hospital in Liverpool.
In mid-March, we hosted a CMD
(congenital muscular dystrophy)
Information Day for Families in
Watford. Over 50 people attended the
day, which saw presentations from
Professor Muntoni, Dr A Rutkowski, Dr
R Foley, Dr Marion Mey and Jo Reffin.
In March 2011, we hosted an Adults’
Information Day in Cornwall, where
individuals, their partners and
carers heard presentations and
participated in workshops.
National and Scottish Conferences
More than 250 families and supporters
gathered at the Hilton Birmingham
Metropole in September 2010 for our
National Conference and Annual General
Meeting. In addition to the popular
President’s Awards, which acknowledge
the outstanding contributions of
individuals and groups, participants
heard about the latest research
developments, campaigns leading to
improved services and successes in the
areas of fundraising and marketing.
The Beardmore Hotel Conference Centre
in Clydebank, Glasgow, was the gathering
place for around 170 people attending
the Scottish Conference and Scottish
Council Annual General Meeting in
October 2010. Families and supporters
heard from Nicola Sturgeon MSP, Deputy
First Minister about latest developments
in the Cross Party Group Inquiry into
specialist services, as well as research,
campaigns and Muscle Group updates.
Physiotherapy focus
In March 2011, we supported an Adult
Neuromuscular Physiotherapy workshop
at the Centre for Neuromuscular Diseases
(NMD) in London’s National Hospital
for Neurology and Neurosurgery. The
inaugural workshop brought together 17
specialist physiotherapists from across the
UK and two from the USA. The workshop
was facilitated by Liz Dewar, a clinical
specialist physiotherapist at the hospital.
The aim of the workshop was to initiate
the development of evidence-based
best clinical practice guidelines, and to
identify physiotherapy research priorities.
Topics discussed included standardisation
of assessment and exercise advice,
page 6
from which evidence-based clinical
recommendations will be collated;
and orthotic management in adult
neuromuscular diseases including issues
around service provision and prescription
of devices. Other topics focused on fatigue
management and the assessment of
people with Inclusion Body Myositis (IBM).
Shree Pandya, guest speaker from
the USA, closed the meeting with a
comprehensive and insightful overview
of her experience and lessons learnt in
running clinical trials in muscle-wasting
diseases over the past 30 years.
Looking forward
In the year ahead, our main education
and development objectives are:
•to ensure the best possible health and social care services for people with muscle-wasting disease by leading the development and implementation of our new Education and Development service, in partnership with professional bodies and external agencies
•to develop a UK-wide conference and seminar programme for health and social care professionals, working with other agencies, and also lead on our national, Scottish and future Welsh conferences
•to ensure that doctors and other health and social care staff can increase their knowledge of muscular dystrophy and related conditions, through developing and maintaining the education and professionals’ section of our website.
We are aiming to publish the full proceedings [of this year’s
workshop] in a physiotherapy journal and plan to hold
this network meeting annually to create a core knowledge
base and highlight research opportunities. This will benefit
people with primary muscle-wasting diseases and the
knowledge can ultimately be disseminated to other
therapists in the field.
Liz Dewar
page 7
people are at the heart of everything we do
Clinical and care services
We plan to ensure that all individuals and families
affected by muscle-wasting disease receive the highest
quality care and services. To do this, we provide specialist
education and development for healthcare professionals.
Neuromuscular care advisors
Thanks to our campaigning with the
Specialised Commissioners and continued
negotiations with the NHS Trusts, the NHS
now fully funds all the neuromuscular
care advisors throughout the UK.
During 2010, more than 850 people
joined us in campaigning for more care
advisors, resulting in four new regional
appointments being made: Rachel
Salmon and Sarah Harris provide specialist
care advisory services to individuals
and families in South Wales; Margaret
Jackson takes care of the South Yorkshire
area; and Kathryn Titchen has joined
Carolyn Evans in the West Midlands.
The Muscular Dystrophy
Campaign’s awareness
raising activities have
led to an improvement
in specialist care and
access at a local level,
for example through the
promised provision of 19
NHS-funded care advisor
posts during the year
ahead, which will bring
the total number to 30.
groups for the various conditions. For
example, we provide administrative
support to the FSH (Facioscapulohumeral
muscular dystrophy) Support Group by
mailing their bi-annual newsletter for
them; we send new information, as well
as our flagship publications – Target
MD and Target Research – to them.
Where possible, we also support our
charity partners’ conferences and
events, such as the Jennifer Trust for
Spinal Muscular Atrophy, the FSH
Support Group and CMT UK (CharcotMarie-Tooth United Kingdom).
We build partnerships to
increase our reach and
engagement within the
community of individuals
and families with
muscle-wasting disease.
Supporting individuals and
families across the UK
Care advisor numbers have more than
doubled since 2009
20092011
South West
2
5
West Midlands
1
5
Scotland
22
Yorkshire and Humber 1
3
East Midlands
1
1
South Central
1
2
London
11
North West
2
2
North East
1
1
Northern Ireland 1
1
Wales
03
East of England
0
3
South East Coast 0
1
Total
1330
Creating a community
As the leading charity for all forms of
muscular dystrophy in the UK, we support
around 60 muscle-wasting conditions,
and we value the opportunity to work
closely with partner charities and support
www.muscular-dystrophy.org
page 8
Best practice development
We work closely with muscle centres and clinics across the
UK, develop new support for clinicians and professionals
and enhance their links with the Muscular Dystrophy
Campaign.
The development of the new education
and development directorate in early
2011, headed by Lyn Inman, focuses
the charity’s attention on the provision
of specialist education for health
professionals, as well as the growth of
professional networks and the promotion
of information and best practice
guidelines to professional bodies.
Factsheets and information
Our comprehensive and up-to-date
factsheets are second to none as
a useful and easy-to-understand
resource for individuals and families.
It was down to our first
meeting with the Muscular
Dystrophy Campaign in
2007 that we changed
the way we offer specialist
support to boys with
Duchenne. Before that
meeting, we had no idea
that young men with
Duchenne can live into
their 30s and even 40s with
the right medical care.
Vice-President of the Muscular Dystrophy
Association in Mauritius, Philip Wan
The database has active links with
national and international initiatives
and advocacy groups, including the
TREAT-NMD Network of Excellence;
Action Duchenne; the Myotubular Trust;
the Jennifer Trust; and Cure CMD.
Professional networks
Our professional networks offer vital
information and support to 622
physiotherapists, 1,034 occupational
therapists and 357 schools across the UK.
Find out more at
www.muscular-dystrophy.org/
forprofessionals
Neuromuscular database
Last year, we had contact with over
440 physiotherapists, occupational
therapists and schools, and our
information line dealt with 10,420 calls
for literature and 3,392 requests for
advice and support from individuals,
family members and friends.
Together with the MRC Centre
for Neuromuscular Disease, we
supported the development of the
National Neuromuscular Database,
which will contribute to national
and international initiatives in the
field of neuromuscular disorders.
We received requests for our information
from 62 countries, including Slovenia,
South Africa, Barbados, Brazil, the United
States of America, Mauritius, Oman and
China. In addition, professional bodies,
GP practices and NHS Choices access
our information for their needs. Our
factsheets relate to daily living, equipment
and adaptations, medical conditions
and medical issues, and we add to our
range of factsheets as the need arises.
Originally set up by Professor Francesco
Muntoni and Dr Adnan Manzur
(Dubowitz Neuromuscular Centre,
Great Ormond Street Hospital), the
database will aggregate data from
children with Duchenne muscular
dystrophy (DMD) and Spinal Muscular
Atrophy (SMA) followed in all the major
paediatric neuromuscular centres in
the UK. More recent developments
include the conditions Inclusion Body
page 9
Myositis (IBM), the congenital muscular
dystrophies and myopathies.
people are at the heart of everything we do
The NeuroMuscular Centre in Cheshire
Based in Winsford, Cheshire, and established in 1990,
the NeuroMuscular Centre provides a range of unique
services and specialist advice, as well as a thriving
social enterprise, all with the sole aim of improving the
quality of life for adults with muscular dystrophy.
The NeuroMuscular Centre is run for and
largely by adults with neuromuscular
conditions and, in addition to the 15
adults employed in the design+print
operation, the Centre offers specialised
physiotherapy (as pictured opposite)
for around 360 patients from the
North of England and North Wales,
and advice to health professionals
and patients all around the UK.
We work to provide
opportunities and options
for people whose disability
often means they see
little positive future.
The Centre experienced a successful year
in 2010/2011, with the overall important
achievement being the significant
building improvements we introduced.
A successful fundraising appeal gave us
the opportunity to make much needed
investments in providing better spaces
and equipment at the Centre, so that
service-users and carers can enjoy a
more relaxing and rewarding time.
Highlights of the Centre’s
2010/2011 year include:
•seeing 20 students with muscular dystrophy graduate with vocational qualifications from the NeuroMuscular Centre
•providing over 8,600 physiotherapy treatments
•encouraging progress towards the creation of other neuromuscular centres, in Birmingham in particular
•investments in new printing and leaflet and booklet-making equipment.
Looking forward
For the year ahead, we look forward to
launching the NeuroMuscular Centre as
an independent charity, facing the future
with confidence. To support this newly
independent Centre, we will recruit a new
Board of Trustees and build up financial
reserves to provide a sustainable and
viable platform for independence.
In addition, we will continue to grow
our physiotherapy services under the
leadership of our newly appointed Head
of Physiotherapy. We will work with
colleagues in the NHS to ensure that
services and funding are secured through
this unsettling period of NHS upheaval.
We will maintain our close and strong
links as a partner and friend of the
Muscular Dystrophy Campaign,
of course, in the years ahead.
•the creation of a new area for carers, and a treatment room
•the installation of a new, magnificent and fully accessible kitchen
www.muscular-dystrophy.org
page 10
page 11
people are at the heart of everything we do
Scientific and clinical research
The Muscular Dystrophy Campaign’s research programme
invests more than £1 million each year into cuttingedge research to find effective treatments and cures.
Research remains the number one priority
for the Muscular Dystrophy Campaign.
We fund world-class research from basic
science and development of therapeutic
approaches through to clinical trials and
disease management throughout the UK.
Research grants
We had 29 active research projects
underway, covering 18 muscle-wasting
diseases, at a total cost of £853,039.
We maintain a particularly strong focus
on Duchenne muscular dystrophy, of
course, and the rarer conditions too.
With valuable input from our lay panel,
we awarded four PhD studentships and
three pump-priming grants. The pumppriming grants are one-off grants of up
to £30,000 each, that give scientists
the opportunity to spend a year testing
innovative ideas to obtain proof-ofprinciple to attract further funding.
Professor David Beeson, at the
University of Oxford, was awarded a
PhD studentship that investigates the
benefit of the drug ephedrine for people
with a particular form of congenital
myasthenic syndrome. His research could
lead to an effective treatment for people
living with myasthenic syndrome.
University College London’s Professor
Michael Duchen is studying how
the genetic defect that causes core
myopathies can affect the ‘batteries’ of
www.muscular-dystrophy.org
the cell – the mitochondria. The PhD
studentship will help to understand
better the underlying biology of this
condition which then will form the
basis to develop new treatments.
Searching for new genes that cause
periodic paralysis and the myotonias is
the focus of Professor Michael Hanna and
his PhD student, at University College
London. The results will improve diagnosis
and allow clinicians to give more accurate
information about how the condition
will progress and the risk of passing
the condition on to future children.
Dr Matthew Wood and his PhD student
at the University of Oxford aim to
investigate ways to improve upon the
current exon-skipping technology.
This involves short DNA fragments –
molecular patches – and their research
particularly focuses on the delivery of
the molecular patches to the heart.
Dr Matthew Wood and his colleagues
also received a pump-priming grant
to investigate a group of genes called
microRNAs, and examine the role
that they play in Duchenne muscular
dystrophy. This research could find new
ways to monitor disease progression
and could also be used in clinical trials,
replacing painful muscle biopsies.
priming grant to gain new insight into
the disease mechanism underlying
congenital myasthenic syndromes. The
knowledge gained will help to develop
new approaches to treat this severe
form of muscle-wasting disease.
Professor Rigby at the Institute of Cancer
Research in London aims to use the
awarded pump-priming grant to develop
an animal model to shed light on the
function of a gene called ‘Mrf4’ that is
involved in muscle growth. He is hoping
that it will help to develop therapies that
promote muscle growth in individuals
affected by muscle-wasting disease.
Bringing experts together
We bring together clinicians and scientists
working in the field of neuromuscular
diseases to share their experience. This
is specifically important for conditions
that are considered rare, and essential
to bring new research advances swiftly
to the clinic. We again jointly organised
the fourth Translational Neuromuscular
Conference in partnership with the MRC
Centre for Neuromuscular Diseases.
Held in March in London, more than
200 scientists and clinicians had an
opportunity to network internationally
and report their latest findings.
We also increased our support to
the European Neuromuscular Centre
this year to £27,000, to promote and
develop international research.
Professor Dame Kay Davies, at the
University of Oxford, received a pumppage 12
Keeping our families and
supporters up to date on new
research developments
The news our families are most interested
in is the development of treatments.
During the last year we published
more than 50 research news stories
on our website, added information
about 72 clinical trials to our database
and published the third edition of
Target Research, a magazine solely
dedicated to research. We added to
our website content by celebrating
our research successes with reports
on completed grants. We also added
a section about patient registries.
The patient’s voice
Clinical trials are now emerging and it is
important that our families are involved
from the start. Individuals living with the
condition are the experts – they can set
priorities and identify gaps. We take part
in a number of international projects such
as TREAT-NMD and Bio-NMD to ensure
that the voice of those affected and their
families is heard. We also continue to
expand our relationship with our grantees
and the scientific communities through
laboratory visits and by participating
in scientific conferences, to keep our
families abreast of new developments.
This year saw further consolidation of
the involvement of patients and families
in the research activities of the charity.
Our lay research panel is growing in
strength, providing an opportunity
for our families to give their opinion
on the research projects we fund.
page 13
Research in the media
In the last year, the media reported on a
number of research advances that would
not have happened without the charity’s
support. A highlight was the successful
pioneering research on a serious
group of inherited disorders known as
mitochondrial diseases. Professor Doug
Turnbull and Dr Mary Herbert at the
University of Newcastle developed an IVF
technique involving the transfer of DNA
between two human eggs, which has
the potential to prevent the transmission
of the condition to future children.
The study was primarily funded by
the Muscular Dystrophy Campaign
and the results were published in the
prestigious scientific journal, Nature, as
well as making the headlines in leading
national newspapers and TV channels.
Looking forward
In the coming year, the research team will:
•continue funding high-quality research projects
•support translational research
•consolidate and develop lay involvement
•improve our research communication programme
•support the set-up of patient registries
•strengthen our relationships with key players in the field of neuromuscular research.
people are at the heart of everything we do
Improving care and support
We campaign to bring about improvements in specialist
healthcare and access to vital services for people with
muscle-wasting disease
Our hard-hitting campaigns for and on
behalf of people affected by musclewasting disease have led to many
improvements in services and support
in the last year. We successfully launched
a number of key reports and findings,
have made key recommendations to
government to bring about necessary
change, and encouraged our supporters
to engage with their local representatives
to ensure they have access to the services
they require. Our young Trailblazers not
only took on a commercial airline, but
were also instrumental in ensuring the
voice of young disabled people was
heard loud and clear at Westminster.
Thanks to the excellent
work of individuals and
families with musclewasting disease, our
campaigns gained much
media attention during
the past year. Read about
these on page 30.
Campaigning successes
Our hard work has borne much fruit
in the past year. The NHS has invested
significantly in the provision of specialist
healthcare services for people with
muscle-wasting disease, by agreeing to
fund 30 neuromuscular care advisors
across the UK within the next year.
Thanks to the excellent
www.muscular-dystrophy.org
page 14
We were delighted to learn in March
that the NHS had agreed to take
groundbreaking steps to develop a
national neuromuscular service plan
in England. The Director of the NHS
National Specialised Commissioning
Team told MPs and Peers at Westminster
that neuromuscular services would be a
priority in the annual work plan of each
of the ten Specialised Commissioning
Groups across England. This was a
direct result of a key recommendation
we made in our annual patient survey,
launched in August last year, where we
called on the government to develop a
national neuromuscular service plan.
Parliamentary reports
The Thomas Report: access
to specialist neuromuscular
care in Wales
This report, developed by Dr Dai Lloyd
AM and his Welsh Cross Party Group
on Muscular Dystrophy, called on the
Welsh government to recognise the
need for specialist neuromuscular
services throughout the country.
The report was named in recognition of
the work of Ray Thomas, a committed and
selfless campaigner for neuromuscular
services in Wales for over 35 years. Despite
losing two sons to Becker muscular
dystrophy, Ray has never wavered in
his determination to secure better
health services for all people in Wales.
The Mackie Report
in Scotland
This report into access to specialist
neuromuscular care and social care in
Scotland, was presented in September
2010 by the Cross Party Group in
the Scottish Parliament on muscular
dystrophy (pictured opposite).
As a result of the Thomas Report and
the Mackie Report, new investment
in specialist posts is being made
in Wales and Scotland.
Pressure in Northern Ireland
Northern Ireland assembly members
heard our call for support for individuals
and families in the province. As a
direct result, we secured vital funds
for the care advisor in Nothern Ireland.
Thank you to our campaigners!
State of the Nation: The
2010 National Survey
Our patient survey findings were
published in August 2010, highlighting
the need for a national neuromuscular
service plan to ensure that those with
muscle-wasting diseases have access
to the specialist care and support they
need. This report was the lead story on
BBC’s Newsnight and secured coverage
in The Times and Daily Telegraph.
The Cost of Living with
Muscle Disease
Our report into the Cost of Living with
Muscle Disease was launched in December
2010 and called on the government to
take action to alleviate poverty among
people with muscle-wasting disease.
Manifesto for Muscle
In the build-up to last year’s parliamentary
elections in May, we called on candidates
to sign our Manifesto for Muscle to
commit to supporting our fight against
muscle-wasting disease. As a result of
the campaign 66 newly elected MPs
pledged to work with us in the fight
against muscle-wasting disease.
Get Moving – the case for
effective wheelchair services
This report, launched in June 2010, called
for the new government to address
shortcomings in the Department of
Health’s Wheelchair Services. The report
was debated in the House of Commons
when the Health Minister announced
a new pilot study aimed at improving
access for powered wheelchairs.
page 15
people are at the heart of everything we do
Reaching more people
We have engaged more and more people
affected by muscle-wasting disease
around the UK to be involved in bringing
about change. Primarily through our
Muscle Groups around the country, many
of our supporters have campaigned for
improved services, spoken out against
inadequate services, and shared their
personal stories of woeful shortcomings
in service provision. We have enabled
people to put their concerns directly
to politicians and in the media.
Joanne Ashton, whose young son has Duchenne muscular dystrophy, is a member of
the North West Muscle Group. She said she was glad she joined the Muscle Group:
It means I’ve got all this information early on and I
won’t come up against a brick wall later – I feel I’ve
been pre-armed. It’s nice to know I’m not on my
own and it’s good to meet other people at different
stages. At the Muscle Group I met young lads with
Duchenne muscular dystrophy who are in wheelchairs
and they’re fantastic, they’re doing so well.
I definitely feel that services are improving in Sheffield
as a direct result of the Yorkshire and Humber Muscle
Group, of which I am an active member!
Rachel Wells lives in Sheffield and has myotonic dystrophy
Our young campaigners
The Trailblazers network of young
campaigners has grown to more than
360 young disabled people, and they had
major campaigning successes during last
year. In August, they took on a leading
budget airline, over their wheelchair
weight restrictions which prohibit many
disabled people from travelling with
them. A media campaign, with coverage
in The Guardian and Daily Mirror, led to
the airline changing its baggage policy.
www.muscular-dystrophy.org
page 16
In February 2011, the young campaigners
took their fight all the way to Westminster,
with the launch of the All Party
Parliamentary Group (APPG) for Young
Disabled People. Chaired by Paul Maynard
MP, and with the support of John Bercow,
Speaker of the House of Commons, the
APPG will tackle everyday issues that face
young disabled people across the UK.
Sulaiman Khan, a 25-year-old awardwinning Trailblazer from London, with
congenital muscular dystrophy, said,
“Thank you to the Trailblazers and
the Muscular Dystrophy Campaign
for giving me the platform to
campaign for an issue that is close to
my heart and my circumstances.”
Advocacy successes
Our newly relaunched advocacy
service had some notable successes
as we campaigned on behalf of
page 17
individuals and families who were not
receiving the services they needed.
Bernie Gamble, School Welfare Officer,
turned to the Muscular Dystrophy
Campaign while he was helping a young
man with Duchenne muscular dystrophy:
“At a time when I had nowhere to turn,
the support services team were there
to help. Without their support, I dread
to think what might have happened.”
Jon Hastie (pictured above) is a 30-yearold man with Duchenne muscular
dystrophy, who approached us to assist
him in his struggle to live independently:
Looking forward
Our key campaigns objectives
for the year ahead are:
•to boost NHS investment and neuromuscular care advisor support, ensuring all have access to specialist care, backed by parliamentary work
•to reach out to and work with more people affected by muscle-wasting disease
•to expand the focus of Trailblazers, with the cinema report, the work of the All Party Parliamentary Group for Young Disabled People and the Employment Report.
I would encourage anyone who is facing a similar fight
to get in touch with the Muscular Dystrophy Campaign.
Their help and expertise have proven invaluable in
allowing me to continue to enjoy my life, my work and my
independence.
Jon Hastie
people are at the heart of everything we do
www.muscular-dystrophy.org
page 18
Fundraising
We rely almost entirely on voluntary donations and
legacies to fund our vital work throughout the UK.
Dedicated volunteers, companies, trusts and foundations
help us to raise money to continue our work.
Supporting our work
You can get involved in our five main
strands of fundraising activity at the
Muscular Dystrophy Campaign:
•our volunteer fundraising managers throughout the UK support individuals and families in their areas, as well as fundraising committees and branches, who run fundraising events for us
•our events team host a range of our own events – or support individuals and teams who raise funds for us through existing events (as pictured opposite) – throughout the year
•we work together with companies to develop long-term relationships as well as charity of the year partners, raising funds through employee fundraising and cause-related marketing
•funding through trusts and foundations who support our work through key partnerships and grants is vital to our long-term plans
•we also involve our key supporters in our funding, giving individuals
the opportunity to be part of the
charity’s work.
page 19
All of these activities make a significant
impact on the services we can deliver
and enable us to continue our vital
research into treatments and cures.
We rely mostly entirely on voluntary
donations to continue our work and we
are tremendously grateful for the valued
and on-going support we receive.
Having had a successful and challenging
2010/2011, our top three fundraising
objectives for the year ahead are:
•to generate sustainable income to meet 2011/2012 targets and fund the charity’s vital work in research, care, campaigns and support
•to grow our support across the UK, by establishing new volunteer fundraising groups and building new partnerships with companies, trusts, groups and individuals
•to maintain the highest level of support and care for our supporters, new and existing, and
to ensure efficient returns on fundraising investment.
people are at the heart of everything we do
Volunteer fundraising
Our branches, volunteer fundraising committees,
individuals and groups that raise money for us across the
UK are a vital lifeline for the charity. Without their valued
support, we would not be able to continue to help all the
families living with muscle-wasting disease, and their carers.
With a team of volunteer fundraising
managers throughout the UK, managing
events and gathering support in
their regions, we offer fundraisers the
opportunity to run a series of events
for us. There is a range of options to
choose from: pre-packaged events
that we have developed, such as Come
Dine With Us (launch event pictured
right) or At The Movies; a series of
extreme challenge events, such as
skydiving, zipsliding or swimming with
sharks; and international challenges,
such as dog-sledding or mountain
climbing. We welcome new fundraising
ideas and support our volunteer
fundraisers every step of the way.
Our top three fundraising achievements
of the past year include:
•establishing 22 new fundraising committees across the UK. These committees went on to raise almost £74,000 for the charity
•a significant increase in funds raised by our volunteers and supporters over last year’s figure. They raised over £1million, which was a marked increase from the previous year’s £650,000
• an impressive total of over 600 people registering with us and going on to organise or participate in fundraising events for the charity, and raising over £550,000.
www.muscular-dystrophy.org
Doing it for Bertie
Throughout his life, Bertie
Brookman was truly
inspirational to both his
friends and family. Despite
his condition (Bertie had
muscular dystrophy, type
2 limb girdle), he would
approach things positively
and not let anything get
in his way. Sadly, Bertie
passed away in April 2010
and a group of his friends
wanted to do what they
could to help others with
the same condition.
The group felt that one or two smaller
events wouldn’t quite cut it, so they
pushed for 23 tough events in just
12 months, which seemed like a
fitting number, given that 23 was
Bertie’s age when he passed away.
‘Bertie 23’ turned into much more than
they had imagined. They haven’t only
raised funds (£12,000 so far), but also
learned so much more about the disease
that now they want to help out in more
ways than just financially. They recognise
the importance of awareness and this will
be another of their main focus areas as
they continue to run ‘Bertie 23’ past the
12 months originally planned. We’d like
to thank the team for their commitment
to supporting us in Bertie’s memory.
Scotland
Mackie’s of Scotland held their first open
farm Sunday in aid of the charity on 6
June when they welcomed 6,000 visitors.
page 20
The crowds enjoyed fantastic activities
with a charity auction, tractor trailer rides,
arboretum treasure trail, live music and
a chance to visit the cows and milking
robots. Mackie’s had created 100 new
flavours of ice cream for the day and even
hosted a vintage car rally. Following this
fantastic day, we were delighted and
grateful to receive a cheque for £45,000
from sales director Denis Emslie.
Northern Ireland
South West and South Wales
Shauna McDonald and friends from
Newtownbutler organised a sponsored
‘Facial Hair Dare’ where men were
challenged not to shave for a month.
Participants were then treated to a
‘shaving party.’ £4553 was raised to help in
the fight against muscle-wasting disease.
The newly formed Bristol and Bath
fundraising team have got off to a flying
start with their Asian Banquet dinner
in March raising £6,875 and built a
partnership with many local businesses.
The team continue to grow in supporters
and have a full calendar of events
planned throughout the coming year.
North East and Yorkshire
South East
Our big successes in 2010 were the
introduction of the Acomb, Prudhoe and
Sheffield Committees with others in the
pipeline for 2011. The backbone of the
region, in terms of both fundraising and
peer-to-peer support, are our branches
who continue to be true ambassadors
for the charity and play a huge part
in the success of the region’s work.
An amazing year for our branches who
raised over £45,000 in the South East. We
have some fantastic supporters who took
on cycling, swimming and all kinds of
daring challenges to raise nearly £64,000.
North West and North Wales
2010 saw many highlights in the
North West and North Wales, which
included continuing to build the
Great Manchester Run and seeing
a substantial growth of activity and
income from the North Manchester
fundraising group year on year.
page 21
In addition, new volunteers were
recruited to help administer some
of the core fundraising events in the
region and some major donations
were received, including those from
events organised by Christine Ogden, St
Anne’s Old Links Golf Club, Lee Webster
and Polly Edwards who undertook
an Indian cycle ride to raise funds.
London and the East of England
The South Woodham Ferrers shop for
the Muscular Dystrophy Campaign had
a fantastic year raising over £32,000.
Our outstanding individual fundraisers
also took on inspiring challenges
such as Tom Wright who trekked the
Great Wall of China in memory of his
brother and raised over £6,500.
people are at the heart of everything we do
Events
Our events team put together an outstanding calendar
full of fun and unique opportunities to engage with
different sectors of the community throughout
the UK. As always, the team focuses on raising
significant funds to help us continue our vital work,
and raising awareness of muscle-wasting disease.
Oxford Town & Gown 10k
Thank you to everyone who has
supported our events by participating,
attending, cheering and helping
us ensure they are a success.
Over 200 golfers took on this mammoth
challenge in June 2010, four times
as many as the previous year.
The events ranged from the 27th
outstanding, and always successful,
Microscope Ball, backed once again by
the property industry, to the launch
of our new Sports Quiz, hosted by our
President Sue Barker MBE at Lord’s
Cricket Ground. We had the support
of 16 sports celebrities, including
our Vice President, Sir Alex Ferguson
CBE and cricketer Freddie Flintoff.
We are grateful again to our dedicated
supporters who took on challenges
such as the BUPA Great North Run,
the Virgin London Marathon, our own
Oxford Town & Gown 10k run and Golf
Marathon, not to mention a group who
trekked The Great Wall of China (pictured
below). All rose to the challenge, raised
much-needed funds for the charity and
helped us to grow our community of
supporters throughout the country.
Virgin London Marathon 2010
130 runners took to the streets in glorious
sunshine in April and raised thousands
of pounds in sponsorship for us. Special
mention should go to Paul McIntyre, who
has Becker muscular dystrophy, who
battled against the odds to finish the
Virgin London Marathon in two days.
In our 29th Oxford Town & Gown
10k in May, we had over 3,000
supporters running through the
city to raise vital funds for us.
Four Course Classic
British 10K and Property
Week Challenge
St George’s Properties raised a record
£22,000 to win the Property Week
Challenge in July 2010. Their team was
joined by 300 other sponsored runners
who took to the streets of London in
the blistering heat to raise money for
the Muscular Dystrophy Campaign.
Summer Concert Series
A series of summer concerts was held
in some amazing settings at Harewood
House, Meridian Park, Woburn Abbey
and Beaulieu. Over 5,000 people
flocked to hear Russell Watson and
special guests at these events.
Celebrity Sports Quiz
Sue Barker MBE was joined by a host
of other sporting legends for our
inaugural celebrity Sports Quiz in March
at Lord’s Cricket Ground, raising our
profile and vital funds for the charity.
Microscope Ball
With the help of 700 top property
executives, the Circus-themed ball
was one of the most successful gala
balls the charity has ever organised.
www.muscular-dystrophy.org
page 22
Oxford Spirit of Christmas
Stars of stage and screen turned out in
great numbers to support this beautiful
Christmas concert. With help from
Sarah Kelly and the Dragon School,
this event helped to raise significant
funds to support our cause. Indeed,
our Spirit of Christmas concerts are a
highlight each year across the country.
Great North Run
Our 150 brave runners took to the
streets of Newcastle in September for
the world’s most popular half marathon.
Michael and Donna Thirkettle raised
over £12,000 for their amazing efforts!
It was all worthwhile as
we came around the bend
on the coast road near the
last 800 metres, when we
heard Jed cheering us on;
I spotted him and went
and pulled him under the
barrier. We ran the last
part all together, holding
hands in the pouring
rain, and came past the
finish line completing
the race together. What a
fantastic moment that was.
I will never forget it.
Michael Thirkettle, after completing
the BUPA Great North Run. He and his
wife, Donna, pictured (right) with son,
Jed, raised over £12,000 from friends,
family and colleagues in 2010.
page 23
people are at the heart of everything we do
Working in partnership
Corporate partnerships
Following our successful Tesco Charity of
the Year partnership in 2009, we continue
to build strong links with our existing
supporters and are now forging new
partnerships. We use our experience to
bring real value to the companies we work
with and grow long-term associations that
will see the charity funded into the future.
Next plc has committed to a three-year
partnership with the charity, starting in
2010.
Genzyme is working closely with us and
building on its support year-on-year
including sponsoring key events and
conferences.
Following the successful partnership
that Harley Davidson enjoys with the
Muscular Dystrophy Association in the
United States, Harley Davidson UK is now
one of our partners. Employees organise
sample sales in aid of the Muscular
Dystrophy Campaign, and we have great
plans for 2011/12 with our pin badges and
collection tins ready to be distributed in
every Harley Davidson retailer in the UK.
CeX buy, sell and exchange a range of
technology and entertainment products
including mobile phones, video games,
DVDs, HD films, computers, digital
electronics, vision and music CDs. When
selling any item to CeX, customers
can donate some or all of the value of
their sale to the Muscular Dystrophy
Campaign, both in-store and online.
www.muscular-dystrophy.org
Payroll giving is proving to be a reliable,
long-term source of financial support
for the Muscular Dystrophy Campaign.
Hundreds of employees are choosing to
donate to the charity in a tax-efficient way.
Trusts and
foundations
We are grateful to the more than 30 trusts
and foundations that have generously
given substantial donations to the
Muscular Dystrophy Campaign during the
past year. In addition, many more trusts
and foundations assisted us with grants
to the Joseph Patrick Trust for specialist
equipment, such as powered wheelchairs,
beds and computer equipment.
Grantmakers include the Donald
Forrester Trust, the Cranbury Foundation,
the Rayne Foundation and Montague
Thompson Coon Charitable Foundation,
all of whom provided funds for vital
research projects. The Big Lottery Fund,
including regional Awards for All grants,
helped us launch new Trailblazer projects
in Scotland and Northern Ireland.
Notable contributions came from the
Northwood Charitable Trust for our care
services in Scotland; from Rosetrees
Trust for research, and from the City
Bridge Trust for supporting our Living
Through Transition project. Two other
key partnerships for us were vinvolved,
who made a significant contribution
to our UK-wide Trailblazers network,
which helped them to recruit many
new members, and from Newman’s
Own Foundation, which assisted us
with a large donation towards specialist
equipment especially for children.
Pedal power!
Taking 11 days to cover the 781 miles from
England to Spain, Guy Weston (pictured
opposite) got on his bike and took on
storms, broken pedals and even a wall
of snow-covered rock as he passed the
Pyrenees, to raise a fantastic £120,000 for
the fight against muscle-wasting disease.
Guy was inspired to take on his epic cycle
in memory of his friend Mark Reynolds.
Key supporters
The Q Trust
It has been a great year for The Q Trust
who smashed their £1 million fundraising
target and are now well on their way to
raising £1.5 million for us. Highlights
included The Q Ball at The Saatchi Gallery
that raised a fantastic £225,000, and Guy
Weston’s epic cycle ride from London to
Mallorca, which raised an astounding
£120,000. A big thank you to everyone
who continues to support The Q Trust.
Research event
2010 saw our first annual research event,
which was held at the Royal Society of
Medicine in London. Trusts and supporters
with a particular interest in research heard
top scientists describe the latest advances
in their work. Hosted by Lord Walton,
the reception gave three researchers
the opportunity to meet the people
who help fund their work: Professor
page 24
Kate Bushby, Dr Peter Zammit and Dr
Aurelie Goyenvalle delivered impressive
reviews of their work to an audience of
both scientists and non-scientists alike.
The President’s Club
Our Vice Presidents continue to offer
the charity valuable advice, guidance
and support. We have seen an increase
in Vice Presidents organising their
own fundraising events and making
valued introductions to potential
corporate and individual supporters.
Fundraising and Development Board
In 2010 we established a new Fundraising
and Development Board. Set up with
the aim of supporting the work of
the Muscular Dystrophy Campaign’s
fundraising team, including our President,
Vice Presidents and the Chair of the Q
Trust, we expect that the Board will ensure
an effective, co-ordinated approach to
fundraising as well as contributing to the
development of the fundraising strategy.
Thank you to all the individuals and
trusts that have donated funds to the
Muscular Dystrophy Campaign from
funding the scientists of the future
to providing equipment for children,
adults and families. Your support is
not only vital, but very much valued.
Mark was a brilliant, funny and generous man who
worked tirelessly to raise awareness and support for
others with muscle disease, right up until he died in 2005
as a result of his condition. Mark’s life motivated me to
raise money to fund care for people with muscle disease
and research into effective treatments and cures.
Guy Weston (pictured right)
page 25
people are at the heart of everything we do
It’s all about our people
We rely on volunteers for a wide range of
support, and this comes from a wealth of
individuals and families, friends, scientists
and health professionals all around the
UK. At last year’s Muscular Dystrophy
Campaign National Conference, we
recognised the outstanding achievements
of these amazing supporters:
Inspiring Person of the Year
Among the Muscular Dystrophy
Campaign’s 130 London Marathon
runners in 2010, was one extra special
runner attempting the legendary 26mile route. Paul McIntyre, 20, (pictured
below) from Callander in Perthshire has
Becker muscular dystrophy and had
never previously attempted even to
walk anywhere near as far. However, he
completed his own personal challenge
by completing the course within two
days – a full day ahead of schedule!
www.muscular-dystrophy.org
Fundraiser of the Year
Roger Stewart, 59, from York turned
his love of classic cars into a business
dedicated to raising money for the
Muscular Dystrophy Campaign. Together
with close friend Chris Tindal he started
Reece Wedding Cars, a chauffeur service
for brides. Named after Roger’s fiveyear-old grandson Reece, who has
Duchenne muscular dystrophy, the
thriving company donates all profits to
the Muscular Dystrophy Campaign.
Young Person of the Year
Diagnosed with Duchenne muscular
dystrophy at the age of seven, Jonathan
Gilmour, 23, from Hampshire has
never allowed his increasing physical
difficulties to stand in the way of his
studies. With A grades all through
school, he went to the University of
Cambridge where he got a first-class
honours degree and is working towards
a PhD in Jewish philosophy. Despite
spinal fusion surgery during his studies,
Jonathan pressed on regardless, winning
academic awards and scholarships.
Campaigners of the Year
A year of incredible achievements in
our campaigning work led to Phillippa
Farrant and Ray Thomas being named
as joint winners of this category.
Phillippa’s son, Dan, has Duchenne
muscular dystrophy and she battles
constantly for the medical care he
needs. Phillippa lives in Eastbourne, is
a trustee of the Muscular Dystrophy
Campaign, chairs the South East
Coast Muscle Group, and chairs the
Duchenne Family Support Group.
page 26
Year award. Based at the Robert Jones
and Agnes Hunt Orthopaedic Hospital
in Oswestry, Shropshire, Dr Quinlivan
has fought her patients’ corners when
requests for equipment, wheelchairs and
house adaptations have gone unheeded.
Research Ambassador of the Year
An active campaigner for our charity since
the late 1960s, Ray Thomas had two sons
with Becker muscular dystrophy, both
of whom have tragically passed away.
Outraged by the lack of support and
specialist care that could have improved
his sons’ quality of life, Ray (pictured in
action on page 31) was at the core of an
in-depth inquiry by the Welsh Assembly’s
Cross Party Group for Muscular Dystrophy.
Carer of the Year
Matthew Morris is a Year 4 pupil from
Warrington. Brother Josh, four, was
diagnosed with Duchenne muscular
dystrophy at the age of two, and Matthew
helps his mum and dad look after him.
When Josh started primary school,
Matthew was devastated to hear other
children calling him names so he stood
up in front of his school to read out a
letter he’d written about Josh’s “poorly
muscles” and why it was upsetting
to hear him being called names.
Clinician of the Year
By showing huge dedication to her
patients and unparalleled levels of
commitment to providing and improving
care services, Dr Ros Quinlivan was
the recipient of our Clinician of the
page 27
Helen Stockdale is our inaugural Research
Ambassador of the Year in recognition
of her work involving patients and
members of the public in our research
work. Thanks to her efforts, families will
continue to have a greater say in the
research work that we fund. A mother of
a son with Becker muscular dystrophy,
Helen chairs our new Lay Panel.
Junior Fundraiser of the Year
Jack Franklin, 13, from East Yorkshire
became the star of one of our most
successful appeals this year, raising
in excess of £15,000. His honest and
emotional letter captured the hearts
of almost everyone who received it
as he described what it’s like to have
Duchenne muscular dystrophy.
Family of the Year
The Atkinson family Richard, Gillian,
Austin and Esther Atkinson gave an
extraordinary amount of time to our
fundraising efforts over the past year,
supporting the charity’s That Glorious
Noise classical concert series, featuring
Russell Watson. Richard and Gillian were
involved in planning and organising the
four concerts and Austin, five, who has
congenital muscular dystrophy, went
on stage at Meridian Park for Russell
Watson to sing happy birthday to him.
Support Group of the Year
The FSH-MD (facioscapulohumeral
muscular dystrophy) Support Group
had a tremendous year, celebrating
its 25th anniversary by growing its
membership, adding new groups and
introducing new events to its calendar.
Volunteer of the Year
Michael McClintock gave much time,
dedication and passion to promote
the Four Course Classic throughout
Northern Ireland. Michael, who has
FSH muscular dystrophy, volunteered
full-time for over four months, travelling
throughout the country, working with
the media and even driving a Golf
Monthly journalist across the country in
a Top Gear-style challenge, all to recruit
golfers and make sure golf courses were
signed up to the golf marathon event.
Michael also managed to convince top
professionals Rory McIlroy, Darren Clarke
and US Open winner Graeme McDowell
to give their backing to the event.
Lifetime Contribution Award
Joan Taylor is a deserving winner of
this award. She started fundraising for
us in 1961 and since then has led the
Kings Heath branch to raise a staggering
£350,000. Along with husband John,
who had Becker muscular dystrophy,
Joan has been a driving force behind
this branch. Her daughter now runs the
branch, so the Taylor dynasty continues
and Joan’s legacy will live long.
people are at the heart of everything we do
Get involved
We value the support of families, friends, scientists,
researchers, campaigners, corporate and individual
donors and supporters. Our growing community keeps us
focused on our vital work, and helps us ensure our work is
relevant. Join our community – you’ll be most welcome!
Join a Muscle Group to help
secure new services
With regular meetings all around the UK,
Muscle Groups are made up of individuals
and families affected by muscle-wasting
disease, local clinicians and MPs. (The
Northern Ireland Muscle Group was
launched in spring 2011; pictured below
right.) We co-ordinate the meetings and
each focuses on ensuring that necessary
specialist neuromuscular services are
available, accessible and relevant. Call
Jen Taylor on 020 7803 2853 or email
campaigns@muscular-dystrophy.org
Can you introduce us?
If you have links with a company,
community group, trust or foundation
that could support the charity, then please
do pass the details on to Danielle Bidos of
our fundraising team on 020 7803 4816
or fundraising@muscular-dystrophy.org
Chat with us
We have a growing and active online
community. Follow us on Twitter, join
us on Facebook, sign in to any of our
discussion forums on TalkMD or follow
our campaign and Trailblazers blogs.
We love to hear what interests and
concerns you have, and you’ll find the
community very friendly and welcoming!
www.muscular-dystrophy.org
Tell us what you like
Talk Research is a group of people
affected by muscle-wasting disease
and their families, who advise us on
research communication. A lot of this
is done by email, but the group also
meets about once a year in London to
talk about research communication in
more depth. If you’d like to be involved,
call Kristina Elvidge on 020 7803 4813 or
email research@muscular-dystrophy.org
Then read all about it!
Subscribe to our flagship publications.
Target MD now comes out four times
a year and includes Target Research
in each issue. Many of our readers
prefer to read the magazine in print,
rather than online, and then to share it
within their schools, GP practices and
community groups. Contact Ruth Martin
at targetmd@muscular-dystrophy.org
or call 020 7803 4836 or write to us at
61 Southwark Street, London SE1 0HL.
Tribute Funds for a loved one
Set up a Muscular Dystrophy Campaign
Tribute Fund online and invite friends
and family from all around the world to
support the Fund in celebration of the life
of someone special. To find out more call
our fundraising hotline on 0845 8729058
or email volunteerfundraising@musculardystrophy.org
A gift of time
We value the work of volunteers
throughout the charity. No matter where
you live in the UK, if you have some time
to spare and would like to help us raise
awareness and funds for the charity, do
call our fundraising hotline on
0845 8729058 or email
volunteerfundraising@musculardystrophy.org to find out more.
A future gift, a lasting memory
Including a gift in your Will to the
Muscular Dystrophy Campaign is
more than a donation. It sends out a
strong and very personal message of
hope for the future. To find out more
about leaving us a gift in your Will
please call Sarah Greenwood on
020 7803 4834 or email
s.greenwood@muscular-dystrophy.org
page 28
Professional networks
Peer support
We work closely with professionals,
such as physiotherapists, occupational
therapists and teachers and run networks
to help them share best practice and
to have the most relevant and current
specialist information and advice for
their clients and communities. To find out
more, contact 0800 652 6352 (freephone)
or email info@muscular-dystrophy.org
We understand the value of peer support,
and offer a number of opportunities for
adults with muscle-wasting disease to
connect with others in similar situations.
A few such examples are Living with MD
Days, MD Links and condition specific
networks. Contact 0800 652 6352
(freephone) or email info@musculardystrophy.org to find out more.
Corporate partnerships
Campaign for change
If you work for or own a company and
would be interested in working in
partnership with us or adopting us as your
Charity of the Year, please contact Nura
Makki on 020 7803 4822 or email
n.makki@muscular-dystrophy.org for
more details.
We are committed to ensuring that people
with muscle-wasting disease have access
to the specialist services they require. Add
your voice to our campaigns by getting
your local MP involved, participating in
our parliamentary events or being a media
volunteer. Contact Jonathan Kingsley at
campaigns@muscular-dystrophy.org
Be a Trailblazer
Our young campaigners’ network, the
Trailblazers, work hard to highlight
issues faced by young disabled
people particularly around access to
transport, leisure facilities, tourism
and education. Find out more at
trailblazers@muscular-dystrophy.org
or call Bobby Ancil on 020 7803 4807.
Fundraise for us anywhere in the UK
Have some fundraising ideas of your
own, or would you prefer to run one of
our fundraising events like a Question of
Support, or Come Dine With Us? Either
way, we’ll give you all the support you
need. Contact Mark Casey on 0845 8729
058 or email volunteerfundraising@
muscular-dystrophy.org
page 29
people are at the heart of everything we do
Spreading the word
We work closely with our colleagues in research, campaigns,
care, education and information teams to ensure we deliver
the right messages at the right time to our supporters,
their families, professionals and the general public
press. It was the lead story on BBC’s
Newsnight, which featured Jane and
Mark Field, and their son Murray, who
has Duchenne muscular dystrophy.
Our online presence
Looking forward
We are continually updating and
adding new information to our website
for families, health professionals,
scientists and the wider community
to ensure we are giving the best and
most up-to-date information about
muscular dystrophy and muscle-wasting
disease, and how we can help. As our
primary means of communication,
our website now receives more than
35,000 visits each month from more
than 120 countries around the world.
Social media
We launched TalkMD, on our website,
in August 2010 and have almost
1,000 registered users. The forum has
covered more than 580 topics, with
more than 4,500 posts recorded.
Our Facebook page and Twitter are
equally active and busy, with currently
over 7,000 friends on our Facebook page
and over 1,600 followers on Twitter.
Your stories
We launched Your stories section on our
website last year, as a place where you
can find supporters sharing their stories
via blogs, articles, questions and answers
and video blogs. If you’d like to share
your story and encourage others, please
email hello@muscular-dystrophy.org
Leaving a legacy
Legacies continue to be a valuable
source of income for the charity, totalling
£860,000 in the last year. Thanks to the
overwhelming kindness and generosity
of those who leave us gifts in their Wills,
we can plan long into the future.
Making our headlines
A new annual subscription for our
flagship publication, Target MD, was
introduced in May 2010 to cover
the costs of printing and mailing to
supporters. We also introduced an online
version of the magazine that utilises
page-turning software making it easy
for people with muscle weakness to
access and view it on our website.
In the year ahead, our main marketing
and communications objectives are:
•to be the first port of call for anyone diagnosed with one of the 60 conditions that we cover, the media and specialist professionals
•to place the charity as experts on muscle-wasting disease to families, media, supporters and professionals
•to increase net income by reducing expenditure and increasing return on investment on all fundraising activity
•to continue to develop our e-communications, social media and online channels to increase the number of ways we can engage with supporters and the wider community.
Leading the headlines in
areas of research, fundraising,
campaigning, advocacy and care
When our 2010 Patient Survey: State
of the Nation report was launched last
year, we received an extraordinary
amount of national media coverage
in both broadcast media and the
I have found this little corner of the web the best therapy
ever. You feel like talking, you talk. No pressure. And
everyone has or is close to the symptoms of MD.
A TalkMD member
www.muscular-dystrophy.org
page 30
page 31
people are at the heart of everything we do
Joseph Patrick Trust
The Joseph Patrick Trust (JPT), the
welfare trust of the Muscular Dystrophy
Campaign, was founded in 1986. Since
its formation, it has given over £6
million to fund over 6,000 pieces of
equipment to help promote mobility
and independence, for people with
muscle-wasting disease. Grants towards
the cost of specialist equipment, such
as powered wheelchairs, adapted
computers and electric beds, are awarded
to adults and children throughout the
UK with muscle-wasting diseases.
Awards
In 2010/2011, the JPT made 155
awards worth £89,640 towards the
cost of specialist equipment. We value
the generous donations and support
of the following donors, without
whom we would not have been
able to award these vital grants:
•Anton Jurgens Charitable Trust
•Childwick Trust
•Constance Green Foundation
•Coutts Charitable Trust
•Evan Cornish Foundation
•Francis Winham Foundation
•Keith Baker Charitable Will Trust 2007
•Maria Holland and St Joseph’s Charity
•Maud Elkington Charitable Trust
•Rothley Trust
•Rowlands Trust
•Stanley Thomas Johnson Foundation
•Woodroffe Benton Foundation
•Yorkshire Building Society Charitable Foundation
Our golf-scheme partners have
supported us again this year to help
fund wheelchairs. We would also like
to give special thanks to Spifox who
helped us to fully fund two awards.
Silver anniversary
In spring, the JPT celebrated its 25th anniversary. Mr
Alexander Patrick started the Trust in 1986 in memory of his
father, Joseph Patrick, who was a founder of the Muscular
Dystrophy Campaign. We are hugely grateful to Alexander
and all the Patrick family and we offer congratulations
on the JPT’s 25th anniversary and our thanks for their
valued and ongoing support of the JPT and our work.
www.muscular-dystrophy.org
page 32
Tesco Charity of the Year
partnership
In 2010/2011, with the funding that came
in through our 2009 Tesco Charity of the
Year partnership, we were able to make a
further 250 awards worth over £1.5 million
to help fully fund equipment for children
and young people aged 19 and under.
How to apply
Applications are only accepted from,
or on behalf of, people with muscular
dystrophy or a related condition. Each
application is reviewed on merit and
the amount awarded depends on
the number of applications and the
annual budget. Contact Pat Copcutt
to find out more and apply online at
www.muscular-dystrophy.org/JPTonline
or request an application form from
JPTgrants@muscular-dystrophy.org
or 020 7803 4814.
page 33
All terrain for Dan
Thanks to a Tesco charity partnership
grant, 11-year-old Dan Southall (pictured
below and left) got an All Terrain Extreme
8 wheelchair, designed to go where no
other chairs can go – over sand, snow,
mud, grass and steep hills. It didn’t take
Dan long to test the genuine four-wheel
drive wheelchair’s capabilities. Here’s
what his mum, Penny, said: “He’s having
a fantastic time in the chair. So far it’s
performed brilliantly on the beach, in the
woods and up on the South Downs and
it’s enabled us to do things as a family that
we couldn’t do before, thanks so much!”
people are at the heart of everything we do
Financial summary
We had a successful year in fulfilling
our charitable objectives in a very
difficult economic climate. The total
resources expended were £7,938k.
The expenditure was funded through
fundraising activities and the Tesco
Charity of the Year partnership, with
total incoming resources of £7,162k, the
remainder being funded from reserves.
Incoming Resources 2010-11
Charitable activities, £88,000
Investment income, £146,000
Other, £20,000
Government Grants, £180,000
Activities to generate funds,
£1,576,000
Donations,
£4,312,000
Legacies,
£840,000
Resources expended
Costs of activities
to generate funds,
£1,177,000
Care,
£3,323,000
Fundraising,
£1,796,000
Governance, £36,000
Communication, £331,000
Medical research,
£1,275,000
www.muscular-dystrophy.org
page 34
Financial statements
Muscular Dystrophy Group of Great Britain and
Northern Ireland
Year ended 31 March 2011
Operating as Muscular Dystrophy Campaign (MDC) (a Company limited by guarantee
705357, a Registered Charity 205395 and Registered as a Charity in Scotland SC039445)
Report of the Board of Trustees 2010/11
What the Muscular
Dystrophy Campaign does –
core purpose and activities
Vision: a world where muscle disease is
not a barrier to length or quality of life.
Mission: to lead the fight against
muscle disease.
Objects of the Muscular Dystrophy
Campaign for the Public Benefit: the
charity is established to promote
research into muscular dystrophy and
allied neuromuscular conditions; to
promote the provision of care and
treatment to those affected; to assist
those who care for persons affected by
such conditions; to provide education
and training to persons affected, and to
raise the awareness of the public on any
matter relating to the charity’s objects.
Public Benefit: the Charity Trustees
consider that they have complied
with their duty in section 4 of the
Charities Act 2006 to have due regard
to Public Benefit guidance published
by the Charities Commission and that
the benefits that the charity provides
are not unreasonably restricted.
page 35
Significant activities this year
Partnerships
Following our successful Tesco Charity
of the Year partnership in 2009, we have
continued to build strong links with
our supporters and have forged new
partnerships. These include Next plc,
Harley Davidson and Genzyme.
Campaigns
The Department of Health announced
a national neuromuscular workplan
– our first ever national development
strategy from Government.
The Mackie Report, launched in Scotland,
and the Thomas Report, launched in Wales,
followed inquiries into neuromuscular
services conducted by the Cross
Party Groups for Muscular Dystrophy,
which highlighted gaps in services.
Our patient survey – State of the Nation –
secured the lead spot on BBC’s Newsnight.
Our network of campaigning Muscle
Groups expanded across the country,
with 850 members actively campaigning
for service improvements.
Trailblazers – the charity’s award-winning
young campaigners network – took
on a budget airline over their
wheelchair restrictions and also
launched the first parliamentary
group for young disabled people.
Care, support and NHS investment
More neuromuscular care advisors
in post than ever before, with NHS
funding agreed for 30 neuromuscular
care advisors across the UK.
Advocated on behalf of 60 children
and adults to ensure their rights
for adequate service provision.
Published MD Links Service Guide and
the second edition of the Wheelchair
Guidelines for Children and Adults
with Muscular Dystrophy and other
Neuromuscular Conditions.
10,420 requests for literature and 3,392
requests for telephone and email support.
Held seven Living with MD days, one
CMD (congenital muscular dystrophy)
patient day, and delivered information
at five partner charity conferences.
people are at the heart of everything we do
NeuroMuscular Centre
Communications
Increased the number of patients being
seen at the centre, providing more than
8,600 physiotherapy treatments.
Saw 20 students with muscular
dystrophy graduate with vocational
qualifications from NMC Design+Print,
our award-winning social enterprise.
Continued to develop our plans for
other neuromuscular centres with
a focus on sustainable income to
underpin any proposed centres.
Launched our online forum
TalkMD, a peer-to-peer support
community for people living with
muscle-wasting disease.
Launched the charity’s Facebook
and Twitter profiles to engage
more in social media channels.
Introduced an annual subscription for
Target MD; and had our most successful
direct marketing appeal to date with the
Chief Executive’s letter mailing in January
2011 that raised more than £27,000.
Research
Managed 29 active research projects
covering 18 different conditions and we
also awarded four new PhD studentships
and three pump-priming grants.
Communication with our families
about news of the development of
treatments continues to be a priority.
Published and distributed our third
edition of Target Research, and on our
increasingly popular website pages
we included over 50 research news
stories, information about 72 clinical
trials, reports of completed grants and
a new section about patient registries.
Organised the fourth Neuromuscular
Translational Research Conference in
London, in partnership with the MRC
Centre for Neuromuscular Disease.
Participated in a number of
international projects, such as TREATNMD and Bio-NMD, to ensure that
the voice of our families is heard.
www.muscular-dystrophy.org
Achievements and
performance
This has been a very challenging year
and, like many organisations, we have
found it difficult to generate unrestricted
income in the current economic
climate. Although the ‘Charity of the
Year’ partnership with Tesco plc raised a
magnificent £5,200,000, these funds were
restricted to the purchase of wheelchairs
and equipment for children (helping
more than 700 children to date). We
have therefore maintained vital services
during 2010/11 by drawing on our
reserves and we are keeping all services
and activities under review in the light of
current income and future projections.
Each year the charity sets open
and transparent objectives for
service outcomes in research, care,
support, advocacy and campaigning.
Our achievements this year are
shown on pages 39 and 40.
Our future objectives for 2011/12
are set out in Section 3.
Future plans
The Muscular Dystrophy Campaign
continues to focus on five areas for which
internal performance indicators have
been set to enable performance to be
effectively monitored and evaluated:
supporting ground-breaking research into
cures and treatments and communicating
research progress to our stakeholders
providing information and support
services to families, including
advocacy support
campaigning for improved health care
and community care as well as improved
access to a wide range of services
providing grants for wheelchairs and
equipment to enable individuals
to live independently
providing specialist education and
development for health professionals.
Financial review
Reserves policy:
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 commitments should it suffer
an immediate or unforeseen drop in
income. Due to the extreme fundraising,
investment and legacy environments over
the past 12 months reserves are currently
sufficient to provide cover for one month.
While the immediate economic outlook
remains extremely demanding, it is
intended that reserves will be built up
over the next few years to provide three
months’ cover for core costs including
salaries and central overheads to meet
its forward commitments.
page 36
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, 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 2000.
There should be no direct investment
in the following: derivative contracts
including futures and options;
commodities and derivatives thereof;
contracts for differences; hedge
funds; structured products.
Ethical considerations: It has been decided
not to invest in tobacco manufacture
and distribution. 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 which 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 to be made or retained.
page 37
Structure, governance
and management
Governing document: The Muscular
Dystrophy Group of Great Britain and
Northern Ireland, operating as the
Muscular Dystrophy Campaign, is a
company limited by guarantee governed
by its Memorandum and Articles of
Association dated 2 September 1961
and as amended on 24 October 2007
to allow for current arrangements and
charity law best practice. The Muscular
Dystrophy Campaign is registered as
a charity with the Charity Commission
and the Office of the Scottish Charity
Regulator and anybody over the age of 18
who supports and promotes the objects
of the charity can become a member.
The Muscular Dystrophy Campaign
has a wholly owned trading subsidiary,
Muscular Dystrophy Group (Trading) Ltd.
Appointment of trustees: The Muscular
Dystrophy Campaign has between
7 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).
Trustee induction and training: New
trustees receive an induction pack of
documents and attend a briefing day
that covers the Muscular Dystrophy
Campaign’s Memorandum and Articles
of Association, their duties as trustees
under charity law, the Muscular Dystrophy
Campaign’s operating plans, recent
financial performance and organisational
structure. During the induction day
and over time they meet and form
working relationships with staff.
Organisation: The Board of Trustees
is ultimately responsible for the
management of the Muscular Dystrophy
Campaign. The Board meets quarterly
and there are sub-committees covering
key areas of activity – research (Medical
Research Committee, MRC), care (Services
Development Committee, SDC), finance
(Finance, General Purposes and Audit
Committee, FGP&A) and appointments
(Appointments and Remuneration
Committee). A Chief Executive, with
delegated authority, is appointed by and
accountable to the trustees for managing
the day-to-day operations of the charity
and the delivery of operational plans.
Members: The Muscular Dystrophy
Campaign has a body of around 175
shareholders who carefully monitor the
charity’s progress. They are volunteers
drawn from the various stakeholders
that the charity represents; individuals,
families, scientists, doctors, MPs, Lords
and others. Trustees are members. If
you are keen on following our work
and would be interested in becoming
a member, please contact the charity.
Related parties:
The Joseph Patrick Trust (JPT, an
unincorporated charitable committee,
registered charity number 294475) is the
welfare arm of the Muscular Dystrophy
Campaign which is its sole corporate
trustee. Constituted on 30 April 1986 it
provides direct financial assistance in the
form of welfare grants to families living
with muscular dystrophy throughout
the UK. The JPT receives most of its
income from the Muscular Dystrophy
Campaign and from its own investments.
The Neuromuscular Centre (NMC,
company number 2806607, registered
people are at the heart of everything we do
charity number 1023606), incorporated
on 1 April 1990 as a company limited
by guarantee and controlled by the
Muscular Dystrophy Campaign, which
is its sole corporate trustee, provides
employment, support, training and
physiotherapy to people affected
by muscular dystrophy. Day-to-day
management of the NMC rests with its
management committee led by its Chief
Executive. The NMC has a wholly owned
trading subsidiary, NMC Trading Limited.
The Muscular Dystrophy Campaign
maintains extremely close working
relationships with partner charities
who assist people living with muscular
dystrophy and related muscle diseases.
Risk management:
The trustees have a comprehensive risk
management strategy based upon a
detailed risk register which is subject to
constant scrutiny and regular review.
Key components include a robust
reserves policy and a plan for managing
reputational risk. Risks are reviewed
against the strategic aims of the
organisation and are evaluated against
controls in place. Action plans, to
minimise or remove risk where possible,
are in place and kept under review.
Primary risks:
•Downturn in income.
•Loss of key data – financial, marketing and operational.
•Reputational damage.
•Loss of key personnel.
www.muscular-dystrophy.org
Provision of information
to auditors
Each person who is a director at the date
of approval of this report confirms that:
so far as the director is aware there is no
relevant audit information of which the
company’s auditors are unaware; and
the director has taken all the steps that
he/she ought to have taken as a director
in order to make himself/herself aware
of any relevant audit information and to
establish that the company’s auditors
are aware of that information; and
this confirmation is given and
should be interpreted in accordance
with the provisions of Section 418
of the Companies Act 2006.
By order of the Board of Trustees
Bill Ronald
Chairman
8 September 2011
page 38
Last year we said we would…
Objectives 2010/11
To empower those living with
muscle-wasting disease
Events:
•to run Information Days and National and Scottish Conferences
•to work closely with partner charities
•to enable individuals and families to provide peer-to-peer support for each other
Welfare grants:
•to manage JPT budgets to support individuals
•to support Campaigns wheelchair provision work to obtain greater financial input from health authorities and Wheelchair services
Living with MD:
•to provide the opportunity for adults with muscle-wasting disease, living outside London, to attend self-
management courses
•to support new projects to develop NMC centres in North East and West Midlands
New family recruitment:
•With a particular emphasis on parents and children, continue to build relationships over the next five years.
To work in partnership with
healthcare professionals to ensure
those living with muscle-wasting
disease receive the highest quality
of care possible
Clinical research:
•to implement new strategy to develop clinical research and training
Communications:
•to develop and launch bi-monthly communications to professionals, page 39
partner charities and support groups
Regional care advisors:
•to continue to grow the NHS investment, working with the campaigns team
Publications:
•to ensure Duchenne ‘Standards of Care’ document is widely distributed and used to enhance services urgently
•to promote Transition Guidelines and Adult Self-Management to families and professionals
Professional networks:
•to continue to grow professional networks for physiotherapists, occupational therapists and schools
•to run professional training days for networks
National neuromuscular database:
•to expand the natural history databases to include adult conditions.
To provide employment, training
and physiotherapy services to
people with muscle-wasting
disease
Physiotherapy:
•to create a successful NMC physiotherapy social enterprise
•to achieve full cost recovery for physiotherapy service
Home workers:
•to consolidate the team of home workers into a successful productive part of NMC Design+Print
NMC North East and NMC West
Midlands:
•to continue to develop the project in Newcastle – target for this year is to launch services including physiotherapy and training – and also support new project in West Midlands
Self-advocacy and support
•to launch new user-led advocacy service
•to roll out New Options’ programme offering supported moves nearer to employment for at least 30 service-users.
To facilitate research into
cures, treatments and disease
management
Grants programme:
•to continue to award grants into basic and clinical research
•to award PhD studentships
•to award travel grants
•to develop partnerships with government bodies and other charities to fund research
•to provide platforms for scientists to share knowledge and to collaborate
•to organise a national scientific conference
•to collaborate internationally with charitable organisations (European Neuromuscular Centre and condition-
specific support groups)
Research communications:
•to grow online content
•to grow offline materials
•to improve and grow clinical trial database
•to involve service users in research communications and research
decision-making.
people are at the heart of everything we do
To educate, inform and lead the
discussion of muscle-wasting
disease in order to raise public
awareness and better inform
statutory decision-making
Policy and campaigning:
•to build parliamentary support for our campaigns to ensure access to specialist services at national and regional levels
•to ensure NHS commissioners provide access to specialised services at national and regional levels for all people living with muscle-wasting disease
•to involve people living with muscle-
wasting disease in all campaigns, including young campaigners, and ensure their voices are heard
Advocacy:
•to provide support to individuals and families in need; and to influence research policy in the UK and EU.
Marketing and communications:
•to develop an online forum for adults living with muscle-wasting disease
•to build relationships with the media to help us achieve national and regional media coverage of muscular dystrophy and related conditions, and the charity
•to give opportunity through our communications for people living with muscle-wasting disease to share their stories with one another and the wider community.
Next year…
Research:
•to continue funding high-quality research projects
•to support translational research
www.muscular-dystrophy.org
•to consolidate and develop lay involvement
•to further improve our research communication programme
•to support the set-up of patient registries
•to strengthen our relationships with key players in the field of neuromuscular research.
Policy and campaigning:
•to boost NHS investment and neuromuscular care advisor support, ensuring all have access to specialist care, backed by parliamentary work
•to reach out to and work with more people affected by muscle-wasting disease
•to expand the focus of Trailblazers, with the cinema report, the work of
the All Party Parliamentary Group for Young Disabled People and the employment report.
Education and development:
•to ensure the best possible health and social care services for people with muscle-wasting disease by working in partnership with professional bodies and external agencies
•to develop a UK-wide conference and seminar programme for health and social care professionals, and present our national, Scottish and future Welsh conferences
•to ensure that doctors and other health and social care staff can increase their knowledge of muscular dystrophy and related conditions, through developing and maintaining the education and professionals’ section of our website.
Marketing and communications:
•to be the first port of call for anyone diagnosed with one of the 60 conditions that we cover, the media and specialist professionals
•to place the charity as experts on muscle-wasting disease to families, media, supporters and professionals
•to increase net income by reducing expenditure and increasing return on investment on all fundraising activities
•to continue to develop our e-communications, social media and online channels to increase the number of ways we can engage with supporters and the wider community.
Fundraising:
•to generate sustainable income to meet 2011/2012 targets and fund the charity’s planned activities
•to grow our support across the UK, by establishing new volunteer fundraising groups and building new partnerships with companies, trusts, groups and individuals
•to maintain the highest level of support and care for our supporters, new and existing, to ensure efficient returns on fundraising investment.
page 40
Statement of Trustees’ Responsibilities
The Trustees are responsible for preparing
the Trustees’ Report and the financial
statements in accordance with applicable
law and regulations.
Company law requires the trustees to
prepare financial statements for each
financial year in accordance with United
Kingdom Generally Accepted Accounting
Practice (United Kingdom Accounting
Standards) and applicable law.
Under company law the trustees must
not approve the financial statements
unless they are satisfied that they give a
true and fair view of the state of affairs
of the charitable company and of its
net incoming/outgoing resources for
that period. In preparing these financial
statements, the trustees are required to:
• select suitable accounting policies and then apply them consistently;
• make judgments and estimates that are reasonable and prudent;
• state whether applicable accounting standards have been followed, subject to any material departures disclosed and explained in the financial statements;
• prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charity will continue to operate.
The Trustees are responsible for keeping
proper 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
charitable company and enable them
to ensure that the financial statements
comply with the Companies Act 2006.
They are also responsible for safeguarding
the assets of the charity and hence for
taking reasonable steps.
Independent Auditors’ Report to the
Members of the Muscular Dystrophy Group
of Great Britain and Northern Ireland
We have audited the financial statements
of the Muscular Dystrophy Group of Great
Britain and Northern Ireland for the year
ended 31 March 2011 which comprise the
Group Statement of Financial Activities,
the Group and Company Balance Sheets,
the Group Cash Flow Statement and the
related notes numbered 1 to 13.
The financial reporting framework that
has been applied in their preparation
is applicable law and United Kingdom
Accounting Standards (United Kingdom
Generally Accepted Accounting Practice).
This report is made solely to the charitable
page 41
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(1c) 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
those matters we are required to state
to them in an auditor’s report and for
no other purpose. To the fullest extent
permitted by law, we do not accept or
assume responsibility to anyone other
than the charitable company and the
company’s members as a body, for our
audit work, for this report, or for the
opinions we have formed.
Respective responsibilities
of trustees and auditor
As explained more fully in the Statement
of Trustees’ Responsibilities, the trustees
(who are also the directors of the
charitable company for the purpose of
company law) are responsible for the
preparation of the financial statements
and for being satisfied that they give a
true and fair view.
We have been appointed as auditor under
section 44(1c) of the Charities and Trustee
people are at the heart of everything we do
Investment (Scotland) Act 2005 and under
the Companies Act 2006 and report in
accordance with regulations made under
those Acts.
Our responsibility is to audit and express
an opinion on the financial statements
in accordance with applicable law and
International Standards on Auditing (UK
and Ireland). Those standards require us
to comply with the Auditing Practices
Board’s Ethical Standards for Auditors.
Scope of the audit of the
financial statements
An audit involves obtaining evidence
about the amounts and disclosures
in the financial statements sufficient
to give reasonable assurance that the
financial statements are free from material
misstatement, whether caused by fraud
or error. This includes an assessment
of: whether the accounting policies
are appropriate to the company’s
circumstances and have been consistently
applied and adequately disclosed; the
reasonableness of significant accounting
estimates made by the directors; and
the overall presentation of the financial
statements.
In addition, we read all the financial
and non-financial information in the
Trustees’ Impact Report to identify
material inconsistencies with the audited
financial statements. If we become aware
of any apparent material misstatements
or inconsistencies we consider the
implications for our report.
www.muscular-dystrophy.org
Opinion on financial statements
In our opinion the financial statements:
• give a true and fair view of the state of the Group’s and the charitable company’s affairs as at 31 March 2011 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 requirements of the Companies Act 2006, the Charities and Trustee Investment (Scotland) Act 2005 and Regulation 8 of the Charities Accounts (Scotland) Regulations 2006.
Opinion on other matter prescribed
by the Companies Act 2006
In our opinion the information given
in the Trustees Impact Report for the
financial year for which the financial
statements are prepared is consistent with
the financial statements.
• the parent charitable company financial statements are not in agreement with the accounting records and returns; or
• certain disclosures of trustees’ remuneration specified by law are not made; or
• we have not received all the information and explanations we require for our audit.
Michael Hicks
Senior Statutory Auditor
For and on behalf of
Crowe Clark Whitehill LLP
Statutory Auditor
London
20 September 2011
Crowe Clark Whitehill LLP is eligible to act
as an auditor in terms of section 1212 of
the Companies Act 2006.
Matters on which we are required
to report by exception
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) requires us to report to you if,
in our opinion:
• the parent charitable company has not kept adequate accounting records; or
page 42
Consolidated Statement of Financial Activities
for the year ended 31 March 2011
Notes
Incoming resources
Voluntary income
Donations
Tesco donations
Government grants
Legacies
Activities to generate funds
Investment income
Charitable activities
Other incoming resources
Gain in disposal of other fixed assets
7
Total incoming resources
Unrestricted
Funds
£000
Restricted
Funds
£000
2010-11
2009-10
£000
£000
1,910
180
729
1,673
-
2,639
1,673
180
2,323
3,309
251
840
-
840
1,400
1,576
144
88
20
-
2
-
1,576
146
88
20
-
1,444
129
412
(10)
4,758
2,404
7,162
9,258
Resources expended
Costs of generating voluntary income
Fundraising
Tesco
2
2
1,796
-
-
1,796
-
1,023
883
Cost of activities to generate funds
2
1,177
-
1,177
1,701
2,973
-
2,973
3,607
1,340
702
316
432
1,551
573
15
1,772
1,551
1,275
331
2,189
2,426
1,307
363
2,358
2,571
4,929
6,285
Charitable activities
Provision of care
Tesco care
Pursuit of knowledge
Communication
2
2
2
2
Total
36
-
36
32
Total resources expended
5,367
2,571
7,938
9,924
Net (outgoing) resources before transfers
(609)
(167)
(776)
(666)
72
(72)
-
-
(537)
(239)
(776)
(666)
7
159
15
174
792
(378)
(224)
(602)
126
Total funds brought forward
11
1,012
1,752
2,764
2,638
Total funds carried forward
11
634
1,528
2,162
2,764
Governance costs
2
Transfers between funds
Net (outgoing) resources
Other recognised gains/losses
Gain on investment assets
Net movement in funds
All income and expenditure derive from continuing operations. There are no recognised gains or losses other than those disclosed above.
page 43
people are at the heart of everything we do
Consolidated Balance Sheet at 31 March 2011
Fixed assets
Tangible assets
Investments
Notes
Group
2011
£000
Group
2010
£000
Company
2011
£000
Company
2010
£000
6
7
229
2,978
232
3,293
90
2,978
139
3,293
3,207
3,525
3,068
3,432
446
1,443
400
2,345
687
1,340
629
2,234
1,889
2,745
2,027
2,863
(2,934)
(3,506)
(2,876)
(3,447)
(1,045)
(761)
(849)
(584)
2,162
2,764
2,219
2,848
169
465
150
862
90
602
139
995
634
1,528
1,012
1,752
692
1,527
1,134
1,714
2,162
2,764
2,219
2,848
Total fixed assets
Current assets
Debtors
Cash at bank
9
Total current assets
Creditors falling due within one year
10
Net current (liabilities)
Net assets
Funds
Unrestricted
- Designated
- General
Restricted
Total funds
11
11
Approved by the Board of Trustees on 8 September 2011 and signed on its behalf by:
Bill Ronald
Chairman
www.muscular-dystrophy.org
page 44
Consolidated Cashflow Statement
for the year ended at 31 March 2011
2010-11
£000
2009-10
£000
(1,402)
607
(131)
489
358
(53)
20
18
(15)
(1,044)
592
(Decrease)/Increase in cash
Net funds at 1 April 2010
(1,044)
2,345
592
1,753
Net funds at 31 March 2011
1,301
2,345
2010-11
£000
2009-10
£000
(776)
7
127
(46)
(714)
(666)
10
178
307
778
(1,402)
607
1 Apr
2010
£000
2,256
89
Cash flow
Movement
£000
(142)
(902)
-
31 March
2011
£000
(142)
1,354
89
2,345
(1,044)
1,301
Net cash (outflow) inflow from operating activities (note a)
Capital expenditure and financial investment
Purchase of tangible fixed assets
Proceeds from sale of tangible fixed assets
Net investment disposals/additions
Net cash inflow/(outflow) from capital expenditure and financial investment
(Decrease)/ Increase in cash
Reconciliation of net cash inflow to movement in net funds (note b)
Notes to cash flow statement
(a) Reconciliation of net incoming resources to net cash inflow from operating activities
Net outgoing Resources
Loss on disposal of fixed assets
Depreciation
(Increase)/decrease in debtors
(Decrease)/increase in creditors
Net cash (outflow)/inflow from operating activities
(b) Analysis of changes in net funds
Bank overdraft
Cash at bank and in hand at Head Office
Cash at bank and in hand at branches
page 45
people are at the heart of everything we do
1. Accounting policies
Accounting convention
The financial statements have been
prepared under the historical cost
convention with the exception of
investments which are included at
market value. The financial statements
have been prepared in accordance
with the Statement of Recommended
Practice - Accounting and Reporting
by Charities (SORP 2005) issued in
March 2005, applicable UK Accounting
Standards and the Companies Act
2006. The principal accounting policies
adopted in the preparation of the
financial Statements are set out below.
Basis of consolidation
Subsidiary undertakings are fully
consolidated and hence these
financial statements are referred to as
‘consolidated financial statements’. An
unincorporated subsidiary charity (where
the Muscular Dystrophy Campaign
itself is the sole corporate Trustee) and
non-autonomous branches are treated
as part of the parent charity and are
referred to as ‘company only’ financial
statements. No Statement of Financial
Activities (SOFA) is prepared for the
Muscular Dystrophy Campaign only, as
provided by the Companies Act 2006.
Income
Incoming resources are 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:
•Entitlement - when the Muscular Dystrophy Campaign has control over the rights to the resource, enabling it to determine its future application
•Certainty - when it is virtually
certain that the incoming resource will be received
•Measurement – when the value can be measured with sufficient reliability
Income received for a specific purpose
is treated as restricted funds.
Where income is received subject to
donor imposed 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 Campaign is
allowed to expend the resource.
Fee income from services provided as
part of charitable activities and income
from commercial trading activities is
recognised as earned when the related
goods and services are provided.
Investment income is recognised
on a receivable basis.
Donations and other voluntary
income are recognised on receipt
or accrued as income as soon as it is
practicable and prudent to do so.
Income from Branches is included based
on the annual returns by Branches.
These returns are independently
examined locally in accordance
with the Branch Constitution.
Grants are not recognised as receivable
until the conditions attached to the grant
have been fulfilled. Grants receivable
in respect of expenditure on fixed
assets are treated as restricted funds.
Legacies are taken into account when
capable of financial measurement.
In the case of a pecuniary legacy
this is on notification, and in all
other cases when received.
Net investment gains and losses for the
year, both realised and unrealised, are
disclosed in the Statement of Financial
Activities under Investment Income and
Gains and Losses on Investment Assets.
www.muscular-dystrophy.org
page 46
Expenditure
Expenditure is recognised when and
to the extent a liability is incurred or
increased without a commensurate
increase in assets or a reduction in liability.
All expenditure is recognised on
an accruals basis and includes
irrecoverable VAT where appropriate.
Grants awarded are recognised as a
liability when the Muscular Dystrophy
Campaign is under a legal or constructive
obligation to a third party.
Charitable expenditure includes all
expenditure incurred in pursuance of
the Muscular Dystrophy Campaign’s
objectives. The costs of these activities
are divided between grants and other
direct costs, including staff and other
items. In addition, support costs have
been allocated to each activity on
the basis of expenditure incurred.
Taxation
The Muscular Dystrophy Campaign,
the Joseph Patrick Trust and the
NeuroMuscular Centre (NMC) are
registered charities and as such are
exempt from corporation and income tax
on their income and gains to the extent
they are applied for charitable objectives.
Listed investments
Listed investments are shown at the
mid market value ruling at the date of
the Balance Sheet and after taking into
account any subsequent impairment in
value. The Muscular Dystrophy Campaign
has full discretion in its investment policy.
Tangible fixed assets and depreciation
Improvements to leasehold property
are depreciated over the full length of
the lease. Depreciation is provided on all
other tangible fixed assets on a straightline basis to write off the cost as follows:
Leasehold premises: over length of lease
Other assets:
over 4 years
Operating leases
The charity provides for operating leases
on property on an actual cost basis. Thus
rent free periods on property are taken
in the period to which they relate rather
than be apportioned over the life of the
operating lease itself. This policy 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.
Pensions
The Muscular Dystrophy Campaign offers
defined contributions to employees’
pension arrangements. This is to an
employee’s portable scheme. The
amount charged to the SOFA in respect
of pension costs is the contributions
payable within the year. Differences
between contributions payable and
contributions actually paid are shown
as accruals in the balance sheet.
Going concern
After making enquiries, the trustees
have a reasonable expectation that
the charity has adequate resources to
continue its activities for the foreseeable
future. Accordingly, they continue
to adopt the going concern basis in
preparing the financial statements as
outlined in the Statement of Trustees
Responsibilities on page 41.
Muscular Dystrophy Group (Trading)
Ltd donates by way of Gift Aid all
profits to the parent Charity.
NMC Trading Ltd is subject to
taxation on its taxable profits.
page 47
people are at the heart of everything we do
2. Resources expended
Direct costs
Grants
Other
Support costs
2010-11
2009-10
£000
£000
£000
£000
£000
Generating funds
Voluntary income costs
Tesco fund
Generated income costs
-
1,504
986
292
191
1,796
1,177
1,023
883
1,701
Total
-
2,490
483
2,973
3,607
82
1,512
1,594
1,403
39
1,442
287
287
1,772
1,551
3,323
2,189
2,426
4,615
905
163
207
1,275
1,307
-
277
54
331
363
Charitable expenditure
Provision of care
Care
Welfare grants – Tesco
Total
Pursuit of knowledge
Medical research
Communication
2,499
1,882
548
4,929
6,285
Governance costs
Total charitable expenditure
-
-
36
36
32
Total expenditure
2,499
4,372
1,067
7,938
9,924
•‘Direct costs’ include all costs incurred in delivering the relevant activity.
•‘Support costs’ comprise the costs of the Chief Executive’s office, Finance, IT and
Support Services Directorate and the Company Secretary as well Head Office
property rental costs and other central overheads. These costs have been allocated
across the activities on the basis of expenditure incurred for each of the activities.
•Provision of care includes training and physiotherapy activities undertaken by
the NeuroMuscular Centre (NMC).
•‘Welfare grants’ includes grants made through the Joseph Patrick Trust to individuals.
•In keeping with the policy of recognition of liability on the basis of grants committed
and communicated to the recipients, the amount charged in the year covers the grant
round that took place in 2010-11 and also includes committed spend for 2011-12.
•‘Governance’ costs include audit fees of £32k (2009-10: £30k). Nine Trustees received reimbursement of their expenses incurred in travelling to attend the
Muscular Dystrophy Campaign’s business amounting to £4k. (2009-10: £4k).
No Trustee received any remuneration during the year.
www.muscular-dystrophy.org
page 48
3. Disclosure information
2010-11
2009-10
£000
£000
Remuneration of staff
Wages and salaries
Social security costs
Pensions
2,377
226
105
2,608
229
113
Total
2,708
2,950
2
-
1
1
1
35
32
7
36
32
10
74
78
The average monthly number of employees during the period was 74, of whom there were the following
higher paid employees as detailed below.
Earned between the ranges
£60,000 to £70,000
£70,000 to £80,000
£80,000 to £90,000
£90,000 to £100,000
Number of staff by activity
Direct charitable expenditure
Fundraising and publicity
Management and administration
Total
Pension Schemes
There were outstanding contributions of £13,000 (2009-10: £12,079) at the balance
sheet date.
page 49
people are at the heart of everything we do
4. Grant expenditure
The Muscular Dystrophy Campaign awards four types of grant:
•grants to fund medical research
•grants to Muscle Centres (principally for clinical research)
•grants to specific beneficiaries to enable them to purchase equipment to alleviate
their condition, and other small welfare grants to individual beneficiaries dispensed
by branches.
Pursuit of
knowledge
£000
Muscle Centres
Welfare grants
£000
Total
2010-11
£000
Total
2009-10
£000
£000
Grants awarded in the year
Grants cancelled in the year
977
(72)
73
(43)
1,601
(37)
2,651
(152)
4,371
(246)
Total
905
30
1,564
2,499
4,125
2010-11
2009-10
£000
£000
672
310
2010-11
2009-10
£000
£000
190
85
-
With the exception of 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.
At the balance sheet date the charity had conditional grant commitments that have
not been accrued in the accounts as the criteria relating to payment in subsequent
years have not been met, as follows:
Payable between two and five years
5. Operating lease commitments
The Muscular Dystrophy Campaign is committed to the following annual commitments
under a non-cancellable operating lease on its Head Office at 61 Southwark Street, London.
Payable within one year
Payable within two and five years
www.muscular-dystrophy.org
page 50
6. Tangible fixed assets
(a) Group
Leasehold
premises
£000
Other assets
Total
£000
£000
Cost or valuation at 1 April 2010
Additions
Disposals
426
50
-
569
81
(7)
995
131
(7)
At 31 March 2011
476
643
1,119
Depreciation at 1 April 2010
Provided for the year
Disposals
321
20
-
442
107
-
763
127
-
At 31 March 2011
341
549
890
Net book value
At 31 March 2011
At 31 March 2010
135
105
94
127
229
232
Leasehold
premises
£000
Other assets
Total
£000
£000
Cost or valuation at 1 April 2010
Additions
Disposals
152
-
339
37
(7)
491
37
(7)
At 31 March 2011
152
369
521
Depreciation at 1 April 2010
Provided for the year
141
11
211
68
352
79
At 31 March 2011
152
279
431
Company
Net book value
At 31 March 2011
-
90
90
At 31 March 2010
11
128
139
All tangible fixed assets are used in the promotion of the Muscular Dystrophy
Campaign’s work; none are held for investment. Included in other assets are three
portraits especially commissioned by the charity, they are held at a cost of £15,000.
In the opinion of the Trustees they are worth not less than this valuation and as such
no depreciation is charged.
page 51
people are at the heart of everything we do
7.Investments
Group
2011
£000
Group
2010
£000
Company
2011
£000
Company
2010
£000
Market value at 1 April 2010
3,293
2,519
3,293
2,519
Net disposals/additions
(489)
(18)
(489)
(18)
2,804
2,501
2,804
2,501
174
792
174
792
Market value at 31 March 2011
2,978
3,293
2,978
3,293
Historical cost at 31 March 2011
2,483
3.011
2,483
3,011
Group
2011
£000
Group
2010
£000
Company
2011
£000
Company
2010
£000
2,449
356
2,658
435
2,449
356
2,658
435
2,805
3,093
2,805
3,093
111
62
138
62
111
62
138
62
2,978
3,293
2,978
3,293
Group
2011
£000
Group
2010
£000
Company
2011
£000
Company
2010
£000
131
15
112
17
131
13
112
17
146
129
144
129
Net investment gain (loss)
Spread of Investments
The investments of the Muscular Dystrophy Campaign are held as follows:
Investments listed on a recognised Stock Exchange and
Unit Trusts
- UK Equities and other
- UK fixed interest
Cash on deposit awaiting investment
Unlisted equities
Total
The unlisted equity investment has been valued at its likely realisable value.
Income from investments
UK Equities,UK fixed interest and other
Short-term deposit and bank interest
www.muscular-dystrophy.org
page 52
8. Investment in subsidiary undertakings
The accounts of the Muscular Dystrophy Campaign (i.e. ‘company only’ accounts)
incorporate the results of the following entity on a line by line basis:
•Joseph Patrick Trust; a separately registered charity which makes grants towards
welfare equipment. The Muscular Dystrophy Campaign is the sole corporate
trustee. The Trust shares a registered office with the Muscular Dystrophy Campaign.
The consolidated accounts of the Muscular Dystrophy Campaign
incorporate the results of the following entities on a line by line basis:
•Muscular Dystrophy Group (Trading) Limited which undertakes trading activities on
behalf of the charity and covenants all profits to the charity.
•NeuroMuscular Centre (NMC) (a charitable company limited by guarantee) which
offers care and support to those with muscular dystrophy and related
neuromuscular conditions.
•NMC Trading Ltd (a subsidiary of the NeuroMuscular Centre) which undertakes
trading in support of its immediate parent.
Their net assets and results for the year ended 31 March 2011 are summarised below:
Muscular
Dystrophy
Group
(Trading) Ltd
£000
Joseph
Patrick
Trust
NeuroMuscular
Centre
NMC
Trading Ltd
£000
£000
£000
Fixed assets
Current assets
Current liabilities
38
(178)
308
145
(160)
132
148
(213)
7
59
(53)
Total net assets
(140)
293
67
13
(140)
293
67
13
(15)
15
1
-
Represented by:
Total funds
Surplus/(deficit) for the year
page 53
people are at the heart of everything we do
9.Debtors
Amount due from subsidiary undertakings
Prepayments and accrued income
Other debtors
Group
2011
£000
Group
2010
£000
Company
2011
£000
Company
2010
£000
421
25
212
188
353
319
15
408
205
16
446
400
687
629
All amounts are due within one year, and all intra group balances are unsecured and do not bear interest.
10.Creditors falling due within one year
Bank overdraft
Grants
Accruals and deferred income
Other creditors
Group
2011
£000
Group
2010
£000
Company
2011
£000
Company
2010
£000
142
1,876
777
139
2,901
117
488
142
1,876
685
173
2,912
97
438
2,934
3,506
2,876
3,447
The bank overdraft is secured on a charge on a proportion of the investment portfolio.
At balance sheet date the value of the assets charged was £170k.
www.muscular-dystrophy.org
page 54
11.Funds
(a) Statement of funds (Group)
Movements
Balance
at 01 Apr
£000
Incoming
Outgoing
Transfers
£000
£000
£000
Balance
at 31 Mar
£000
305
2
(2)
-
305
270
38
59
33
22
28
1,673
323
(1)
(47)
(1,551)
(382)
(12)
-
302
1
28
122
-
940
140
323
(110)
(463)
(60)
-
770
-
Education
-
13
(13)
-
-
Communication
-
2
(2)
-
-
1,752
2,419
(2,571)
(72)
1,528
Unrestricted funds
Designated funds
NeuroMuscular Centre
Tangible assets for charity use
11
139
56
(49)
12
-
79
90
Total designated funds
150
56
(49)
12
169
General Fund
862
4,861
(5,318)
60
465
Total unrestricted funds
1,012
4.917
(5,367)
72
634
Total funds
2,764
7,336
7,938
-
2,162
Restricted funds
Orchid Ball Endowment Fund
Provision of care
Joseph Patrick Trust
NeuroMuscular Centre NMC
NeuroMuscular Centre – West Midlands
Tesco Charity of the Year
Other care
Research
The Patrick Research Trust
Other
Total restricted funds
page 55
people are at the heart of everything we do
Restricted Funds
•The Joseph Patrick Trust is a subsidiary undertaking of the Muscular Dystrophy
Campaign as explained in Note 7. Its assets are restricted to ‘provide welfare, relief and
support to people affected by neuromuscular conditions’.
•The Orchid Ball Fund is an endowed fund the income from which (shown separately)
is restricted in the first instance to welfare in Scotland. Any unused income in a
financial period is then directed to funding research.
•The NeuroMuscular Centre represents funds held by the subsidiary undertaking that
were donated for a specific purpose and which have not yet been charged
to expenditure.
•The Trustees of the Patrick Trust previously converted a loan to the Muscular
Dystrophy Campaign into a fund to be applied towards research for a cure for
Duchenne muscular dystrophy. During the year £170,045 was awarded over a two
year period to Dame Professor Kay Davies at Oxford for the Patrick Research
Fellowship. The balance of the fund is held on special deposit and the interest
received is applied to the fund.
•In February 2009, The Tesco Group adopted Muscular Dystrophy Campaign as its
nominated Charity of the Year with effect from March 2009. The funds raised in
2009-10 will be used for funding specialist equipment for children with
muscular dystrophy.
•Other funds represent other restricted funds.
Unrestricted funds
The Muscular Dystrophy Campaign’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.
The designation of balances is as follows:
•NeuroMuscular Centre reflects the unrestricted funds of the Centre.
•‘Tangible assets for charity use’ represents the amount of unrestricted
funds represented by these assets.
•The General Fund is available for the ongoing operations of the charity.
www.muscular-dystrophy.org
page 56
11.Funds - continued
(b) Represented by:
Fixed assets
Restricted funds
Orchid Ball Endowment Fund
Joseph Patrick Trust
NeuroMuscular Centre NMC
NeuroMuscular Centre – West Midlands
Tesco Charity of the Year
The Patrick Research Trust
£000
Net current
assets
(liabilities)
£000
£000
-
305
302
1
28
122
770
305
302
1
28
122
770
1,528
1,528
Total restricted funds
Total
Unrestricted funds
Designated funds
NeuroMuscular Centre
Tangible assets for charity use
139
90
(60)
-
79
90
Total designated funds
229
(60)
169
-
465
465
Total unrestricted funds
229
405
634
Total funds
229
1,933
2,162
General Fund
page 57
people are at the heart of everything we do
12.Legacies
The Group is entitled to a share in a number of estates and these 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 Group at the balance sheet date are as follows:
Residuary
Reversionary
2011
2010
£000
£000
419
1,473
775
1,386
1,892
2,161
All sums are due to the Muscular Dystrophy Campaign.
13.Status of charity
The Muscular Dystrophy Group of Great Britain and Northern Ireland, operating
as Muscular Dystrophy Campaign, 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 one pound. By virtue of Section 30 of
the Companies Act 2006 the charity does not use ‘limited’ in its name.
www.muscular-dystrophy.org
page 58
Muscular Dystrophy Campaign is an operating name of the “Muscular Dystrophy Group
of Great Britain and Northern Ireland” (a company limited by guarantee: 705357)
Registered Charity No. 205395 and Registered Scottish Charity No. SC039445
The Board of Trustees also act as Directors
of the Company for the purposes of
Company Law.
Patron
HRH The Prince Philip, Duke of Edinburgh
KG KT OM GBE AC QSO PC
Senior management team
N Bungay (Appointed Director of
Campaigns and Care 10/01/2011)
P Butcher (Chief Executive) (Resigned
10/06/10)
R Day (Interim Director of Fundraising)
(Appointed 02/08/2010; Resigned
31/03/2011)
J Hanaway (Director of Fundraising)
(Appointed 14/03/2011)
L Inman (Director of Care and Support)
(Appointed Director of Education and
Training 10/01/2011)
F Jackson (Appointed Director of
Marketing and Communications
10/01/2011)
H Khan (Director of Finance) (Resigned
06/05/2011)
M Lanham (Director NMC)
R Meadowcroft (Acting Chief Executive)
(Appointed Chief Executive 12/10/2010)
Dr M Pohlschmidt (Director of Research)
J Spencer-Gregson (Appointed Interim
Director of Finance 17/05/2011)
President
Sue Barker MBE
Honorary Life Presidents
Lord Attenborough of Richmond-uponThames Kt CBE
Lord Walton of Detchant Kt TD MA MD
DSc FRCP FMedSci
Vice Presidents
Anil Ahir
Peter Andrews (Honorary)
Sophia Bergqvist
Jane Byam Shaw
Tony Carey
Tom Chamberlayne-Macdonald
Jeremy Champion
Roger Cooke
Ian Corner
Candida Crewe
Charity Crewe
Sebastian Crewe
Mark Disney
Professor Alan Emery FRCP Edin
Sir Alex Ferguson CBE
Andrew Graham - Trustee
Christian Hore
Tania Hore
Christine Jenkins
Matthew Kelly
Sarah Kelly
Simon Knights
Nicky Manby
Andrew Martin
page 59
Sir Bert Massie CBE
Martin Moore
Alan Noble
Alexander Patrick DL
Valerie Patrick
Jeremy Pelczer
Jemima Reynolds - Trustee
Jonathan Staniforth
Michael Thirkettle
Baroness Celia Thomas MBE - Trustee
Guy Weston
Board of Trustees
B Ronald (Chair) (Appointed 18/09/2010)
Professor M Bobrow CBE FRS FMedSci
(Chair) (Retired 18/09/2010)
C K Rushton (Vice Chair)
L Ball (Retired 18/09/2010)
G Davies
M Draeger (Resigned 18/09/2010)
P Farrant (Appointed 18/09/2010)
P Forwood LVO FCA (Treasurer) (Retired
18/09/2010)
Dr P Goodfellow DPhil FRS
I T Gordon
A Graham (Treasurer) (Appointed
18/09/2010)
Professor J Harris BPharm PhD FI Biol MPS
Professor R Hughes MD FRCP FMedSci
(Appointed 18/09/2010)
C Manby
N Overall
K Parkin (Retired 18/09/2010)
J Reynolds (Appointed 18/09/2010)
Baroness C Thomas of Winchester
(Appointed 18/09/2010)
R Warner
Bankers
HSBC
6th Floor 165 Fleet Street
London EC4A 2DY
The Royal Bank of Scotland
40 Islington High Street
London N1 8XJ
Auditors
Crowe Clark Whitehill LLP
10 Salisbury Square
London EC4Y 8EH
people are at the heart of everything we do
Solicitors
Russell-Cooke Solicitors LLP
2 Putney Hill
Putney
London SW15 6AB
A Lutley Solicitors
Springfield
Rookery Hill
Ashtead
Surrey KT21 1HY
Investment Managers
Investec Wealth and Investment Ltd
2 Gresham Street
London EC2V 7QN
Fyshe Horton Finney Ltd
Charles House
148-149 Great Charles Street
Birmingham
B3 3HT
Registered Office
61 Southwark Street
London SE1 0HL
Standing Committees
Finance, General Purposes & Audit
Committee
A Graham (Chair) (Appointed 04/10/2010)
Professor M Bobrow CBE FRS FMed Sci
(Retired 18/09/2010)
P Forwood LVO FCA (Chair) (Retired
18/09/2010)
I T Gordon (Retired 22/09/09) (Appointed
04/10/2010)
B D Jackson MBE
N Overall
J Pritchard
B Ronald (Appointed 18/09/2010)
C K Rushton
www.muscular-dystrophy.org
Appointments and Remuneration
Committee
B Ronald (Chair) (Appointed 18/09/2010)
Professor M Bobrow CBE FRS FMedSci
(Chair) (Retired 18/09/2010)
I T Gordon
C Manby
K Parkin (Retired 18/09/2010)
C K Rushton
Baroness C Thomas of Winchester
(Appointed 18/09/2010)
Medical Research Committee
Dr P Goodfellow DPhil FRS (Chair)
Professor T Braun DrMed Dr
Professor Dame K Davies CBE DBE FMed
Sci FRS
Dr J den Dunnen PhD
Professor G Dickson BSc PhD
Professor J Hewitt PhD
Dr D Hilton-Jones MA MD FRCP FRCPE
Dr S Sawcer M B ChB PhD
Dr S Tajbakhsh PhD
Professor F Walsh BSc PhD
Services Development Committee
Baroness C Thomas of Winchester (Chair)
Professor K Bushby
P Farrant
A Fischer
Professor R Hughes
Professor D Kelly
S Manning (Network Advisor non-voting
member)
Professor F Muntoni
Dr R Quinlivan
E Scott (Network Advisor non-voting
member)
C Young
Scottish Council
R Warner (Chair)
Dr S Banham (Appointed 21/05/2010)
A Couston
K Coyle
Dr J Ferrie
K Kemp (Secretary)
S McDonald (Treasurer)
Dr K Naismith (Resigned 21/05/2010)
Dr R Petty
E Stewart
E Warner
D Wight (Resigned 21/05/2010)
J Wight
Dr D Wilcox BSc MBChB FRCP (Resigned
21/05/2010)
Northern Ireland Council
O Monaghan (Chair)
F Ashe
J Bailie
A Foy
J Gamble
J Graham
M Hegarty
M Hollywood
R Kane
G McClintock
G McCollum
M McCollum
A McDonald
R McKay
A J McKnight
B McKnight
Joseph Patrick Trust Management
Committee
A Patrick (Chair)
B D Jackson MBE
J Pritchard
K Rushton
page 60
Patron
HRH The Prince
Philip, Duke of
Edinburgh
KG KT OM GBE
AC QSO PC
Prince Philip was born Prince of
Greece and Denmark in Corfu in
1921. He renounced his foreign Royal
title when he became a naturalised
British subject in 1947, the same
year he married The Queen.
Since Princess Elizabeth became Queen
in 1952, Prince Philip has provided
an immense amount of support to
The Queen in her duties. Through his
work with a wide range of charities,
The Duke of Edinburgh has played a
major national and international role
in helping the lives of other people.
Prince Philip became Patron of the
Muscular Dystrophy Campaign in 1966.
Honorary Life
Presidents
Lord Richard
Attenborough
Kt CBE
Acclaimed actor, director
and producer, Lord
Richard Attenborough is one of this
country’s most distinguished citizens. He
was appointed a CBE in 1967, knighted
in 1976 and created a life peer in 1993.
page 61
Lord Attenborough first found out about
the Muscular Dystrophy Campaign
when visiting a local hospital fete in
1962 where he was greatly affected
by the plight of the boys living with
Duchenne muscular dystrophy.
From that very day he offered his
support to the charity, contributing
greatly to raising the profile of the
charity and generating hundreds of
thousands of pounds. He served as
President for 30 years, from 1972 to 2002,
when he then became an Honorary
Life President. Lord Attenborough
remains an inspirational supporter of
the Muscular Dystrophy Campaign.
Lord John
Walton
Kt TD MA MD DSc
FRCP FMedSci
Lord Walton of
Detchant was a founder of the Muscular
Dystrophy Campaign (then called the
Muscular Dystrophy Group) in 1959.
In medical school, he specialised
in neurology and studied muscular
dystrophy, and established a new
classification system based on genetic
information. He was Professor of
Neurology and Dean of Medicine
at the University of Newcastle.
Lord Walton has held the presidencies of
several medical organisations, including
the General Medical Council (GMC),
the British Medical Association (BMA)
and the Royal Society of Medicine. He
was created a life peer in 1989 and
has contributed as a cross-bencher
to many high-profile debates.
Lord Walton served as Chairman of
the Muscular Dystrophy Campaign
from 1970 to 1994, when he became
an Honorary Life President. He has
been a loyal and constant guiding
influence on the development of
the charity for over 50 years.
President
Sue Barker
MBE
Originally from
Devon, Sue Barker is
a television presenter
and former professional tennis player.
During her tennis career, she won the
women’s singles title at the French
Open and reached a career-high
singles ranking of World No. 3.
Upon retiring from tennis in 1985, Sue
became a sports commentator and
joined the BBC to anchor the tennis
coverage at Wimbledon in 1993. Since
joining the BBC, Sue has become one of
its chief sports presenters; she fronts key
sporting events including the Olympics
and is also the presenter of the popular
quiz show, A Question of Sport.
Through a great friendship with
Lord Attenborough, Sue Barker was
delighted to follow in his footsteps by
becoming President of the Muscular
Dystrophy Campaign in 2004.
people are at the heart of everything we do
Muscular Dystrophy Campaign
61 Southwark Street
London SE1 0HL
t: 020 7803 4800
e:hello@muscular-dystrophy.org
w:www.muscular-dystrophy.org
Registered Charity No. 205395 and Registered Scottish Charity No. SC039445
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