Impact report 2015/16
Young campaigners, like Auzair Arshad (left) and Archie Hill, make a huge contribution to our work
A tribute: Lord John Walton of Detchant (1922 – 2016) "It was with great sadness that we heard of the loss of one of our founders and Honorary Life Presidents this year. John was much loved and respected, a man whose long-term vision, high standards and integrity laid the foundations for our work. We are deeply grateful for John’s huge contribution both to the individuals and families affected by muscular dystrophy and, of course, to our charity. It is right to say his contribution is unrivalled and it is difficult to imagine it can ever be equalled, let alone surpassed. “Lord Walton was an outstanding Chairman of the charity from 1970 to 1994, after which he became an Honorary Life President. He remained actively involved; a loyal and constant guiding influence on the development of the charity over the last 50 years. “As a young doctor, John Walton was moved by the impact of muscular dystrophy on the children and families in his care. In later years, he often cited with real sadness the words of the mother who had said to him, ‘I watch my son die a little every day’, as the boy’s muscles inexorably wasted. “He knew funds were desperately needed for research, and this led to his becoming a founder and driving force behind the charity. John would have been delighted to learn just weeks before the onset of his final illness, that the first treatment to target an underlying cause of Duchenne muscular dystrophy had been approved by NICE.” Robert Meadowcroft, CEO 2
Welcome This report highlights the major advances in the last year in the fight to beat musclewasting conditions through our backing for research to accelerate treatments, improved NHS care and enhanced support to individuals and families across the UK.
expertise of two ‘Muscle Networks’. Working with the professional bodies, we developed new e-learning modules to extend the knowledge and understanding of GPs and physiotherapists which in turn will help to speed up the steps to diagnosis and improve patient care.
The approval of NHS funding for Translarna, the first drug to treat an underlying cause of muscular dystrophy, is a huge step forward. It is a landmark decision and followed our highprofile campaign led by brave and determined families. We underlined our commitment to research with our award of £1.1million to fund new research, covering 13 muscle-wasting conditions. We’re very much aware that major progress through research in one condition can help to accelerate progress in other areas.
We extended our direct support and the advocacy team, for example, secured benefits payments, care packages and vital equipment. The Joseph Patrick Trust gave an increased number of grants for wheelchairs and equipment and, for the first time, awarded grants for assistive technology. The Trailblazers’ membership grew further, raising impressive awareness in the media of their campaigns. Finally, we must give our warm thanks to so many people including all our wonderful supporters and donors, as well as Sue Barker OBE, our President, for her unfailing and much valued support. We also thank our trustees for their advice and guidance, as well as our dedicated staff.
Given the very welcome increase in the number of emerging treatments, we invested a further £360k to address shortfalls in clinical trial capacity, working with a number of UK charities. This reflects our view that working with others in partnership can help us achieve more rapid progress.
In conclusion, we are keen to emphasise we are looking forward to the year ahead with confidence and renewed determination as we strive to win the fight to beat musclewasting conditions.
Despite budgetary pressures, we’re pleased to have secured additional NHS posts to support individuals and families across the UK. These posts are valued at some £3.6million and they’ve helped strengthen the care and support provided at muscle clinics. We recognised three new ‘Centres of Excellence’ and the
Bill Ronald Chairman 3
Robert Meadowcroft Chief Executive
Research • treatments • specialist services • care and support • independent living • getting involved
The road to treatments Muscular Dystrophy UK funds peer-reviewed research that leads us from identifying causes to finding effective treatments for muscle-wasting conditions. The value of early stage funding is vital and becoming more apparent, as more and more research we have funded moves into clinical trial. We are also committed to increasing access to clinical trials. Our investment in infrastructure, such as national clinical networks and databases, is leading to improvements in clinical care. It also makes it easier to access – and evaluate – clinical trials.
Leading the development of effective treatments and cures 4
#EveryDayCounts
What we achieved In helping to increase access to clinical trials in the UK, we: invested £20k in two patient registries put £70k+ into funding two clinical trial co-ordinator posts invested in two national databases (NorthStar and SMA Reach). In boosting research through UK and international collaborations, we: held two grant calls (including an international call for an ultra-rare condition – nemaline myopathy) co-funded 3 projects with other charities, the Medical Research Council (MRC) and the Chief Scientist Office in Scotland along with the MRC Centre, brought together 230 researchers from around the world for the Translational Research Conference. In engaging our supporters in shaping our work, we: involved people living with muscle-wasting conditions in reviewing 39 research grant applications.
£360k committed into increasing clinical trial capacity in the UK, as part of an overall plan to invest £1.2m, in partnership with other charities
£
almost £1.1m invested in research into 13 different muscle-wasting conditions
300+ people with muscle-wasting conditions brought together, in partnership with the MRC Neuromuscular Centre, to meet with international experts in research and learn more about cutting-edge research relevant to their conditions
£390k+ invested in 12 bright young scientists and clinicians, to build scientific capacity This vital work has been made possible with thanks to the generous support from Trusts and Foundations, Family Funds, event fundraising and condition-specific appeals, individual and corporate donations, including: Cranbury Foundation – £60k R S McDonald Charitable Trust – £43k Greendale Charitable Foundation – £20k 5
What it means “Muscular Dystrophy UK’s funding and support have had a huge impact on research. The charity has, from the outset, maintained a funding stream for basic science, which has underpinned the movement towards promising technologies that we are seeing today. “This strategic approach gives scientists the opportunity to develop novel strategies to effectively treat the disease. We are seeing the rewards of that foundational research today. “Muscular Dystrophy UK got me into Duchenne muscular dystrophy research in the first place, in the early '80s. My team and I could not have done it without MDUK." Professor Dame Kay Davies (pictured), whose research has been funded by MDUK for more than 25 years. Her work led to the characterisation of the protein utrophin, a relative of dystrophin. Her research group showed that, in mouse models, increasing utrophin levels reduced symptoms of the condition. More recently, Professor Davies has been pursuing this as an approach to treat Duchenne muscular dystrophy in humans. Unlike some existing therapeutics, effective only in a small number of patients with the condition, this strategy would be applicable to all patients.
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What next We will support research with the goal of identifying effective treatments and cures for all muscle-wasting conditions. To achieve this, we will: invest in high-quality research to develop potential treatments and improve quality of life identify strategic research areas that hold promise to bring treatments to clinic more quickly invest in order to prepare the UK for clinical trials and ensure promising technology reaches the market swiftly communicate and collaborate with the scientific community in the UK and abroad expand and enhance our communications with families and supporters develop national and international partnerships to leverage resources for ultra-rare conditions introduce new appeals for research into myotonic dystrophy, Becker muscular dystrophy, Duchenne muscular dystrophy and SMA, as well as for our work in Scotland.
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Research • treatments • specialist services • care and support • independent living • getting involved
Fast access to treatments Muscular Dystrophy UK works with Parliamentarians and governments in Westminster, Cardiff, Edinburgh and Belfast to ensure UK patients have timely access to emerging treatments, as well as specialist care. Over the past two years, along with families, we’ve made the case for Translarna, the first drug to address an underlying cause of muscular dystrophy, to be made available on the NHS. It is designed specifically for children whose Duchenne muscular dystrophy is caused by a 'nonsense' mutation. At the time of going to print, the campaign has been successful in England, Wales, Scotland and Northern Ireland. However, the fight continues with urgency in the Isle of Man.
Driving fast access to emerging treatments 8
#EveryDayCounts
What we achieved Translarna is the firstever drug that could help keep some boys living with Duchenne muscular dystrophy walking for longer. Ten-year-old Archie Hill, who was diagnosed with Duchenne muscular dystrophy at the age of three, is one of the boys eligible for this drug. We gave expert evidence to NICE and have been campaigning in Parliament and through the media for the drug to be made available on the NHS. The Hills, and other families, have appeared on national and local media, spoken in Parliament and even been to 10 Downing Street as part of
the campaign, meeting the Prime Minister to appeal to him, face-to-face, for his help. For Archie, and other boys, Translarna could simply allow them to continue playing football for longer. In Scotland, we gave expert evidence to the Scottish Medicines Consortium and, after their rejection of Translarna, we worked closely with families. Along with the Young family, we met First Minister, Nicola Sturgeon, twice to stress the urgent need for young Michael and other boys to receive the drug. Michael's campaign has now been successful.
Our campaign gained the support of 150 Parliamentarians facilitated over 100 mentions of muscular dystrophy in Parliamentary debates and questions held four meetings with government ministers secured a 90-minute debate in the House of Commons secured 578 pieces of media coverage.
England and Arsenal player, Jack Wilshere, "I want to do all I can as an Ambassador to raise agreed to become a charity ambassador after awareness of the charity’s work. I hope that one he met and befriended young fan, Archie Hill. day in the future we are able to say there is a This happened after he heard of Archie's family's cure for children and adults living with these fight for Translarna, during an interview on conditions." Jack Wilshere Good Morning Britain.
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What it means “When we were told Archie was accepted on to the Translarna trial, we were ecstatic. “Duchenne muscular dystrophy brings so many challenges into his life, and this will become even greater in the future. Yet now, for the first time, there is something in our corner. We can have real hope that, one day, there may be a drug not only to slow down the condition, but completely stop it, and our son will be strong enough to benefit.” Louisa Hill, Archie's mum
“To have our lovely quiet boy rewarded for all his brave and tireless campaigning was just amazing; for him, and our family. Knowing that we no longer have to worry about Michael receiving his medication is a tremendous relief. Any extra time Michael spends on his feet is just invaluable. "It’s so special knowing Michael will be given vital medicine and can just get on with enjoying his childhood again.” Michelle Young, mum of Michael (pictured)
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What next
We are seeing many more potential treatments entering clinical trials. In order for people with muscle-wasting conditions to gain fast access to these potential treatments, we will: focus on ensuring regulators like NICE understand the impact of muscle-wasting conditions ensure the regulatory process is streamlined so that decisions are made more quickly – we know every day counts increase the number of Parliamentarians in Westminster, Cardiff, Edinburgh and Belfast who are supporting our activity on faster access to treatments continue our Fast Forward campaign to improve the system for assessing and approving emerging treatments.
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Research • treatments • specialist services • care and support • independent living • getting involved
Access to specialist services Muscular Dystrophy UK's goal is to ensure everyone with a musclewasting condition has access to specialist NHS care from a multidisciplinary team. Our work has meant the NHS has invested more in specialist neuromuscular services, ensuring families living with muscle-wasting conditions get access to the specialist care they need, wherever they live. To do this, we bring patients and clinicians together with specialised and local decision-makers. They identify gaps in services and discuss how to plan services effectively in order to meet patients' needs. We also develop training modules to improve health professionals’ understanding of muscle-wasting conditions. Ensuring access to specialist NHS care 12
#EveryDayCounts
What we achieved In ensuring people living with muscle-wasting conditions have access to the best possible care, we: awarded Centre of Excellence status to an additional three neuromuscular centres – Cambridge, Oswestry and Southampton (bringing the total number of Centres of Excellence to 10).
£
secured £1.7m funding for 26 new NHS neuromuscular roles (bringing the total to 46 roles and £3.6m over three years)
almost 1,000 GPs and physios completed our online training modules
In providing training for healthcare professionals: 1,200 health professionals took part in 17 training events across the year.
almost 7,000 life-saving alert cards and care plans sent out to individuals and families across 11 of the conditions we support
In bringing people together to campaign for better NHS services, we: brought 50 families and Assembly Members (AMs) together in the Welsh Assembly, which has led to the investment in two additional NHS roles in Wales.
100% increase in number of visits to our online support hub: from 10k to 20k
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What it means
“This course has really helped me in my understanding of neuromuscular conditions and will help me a lot in the areas of assessment, choosing suitable outcome measures, exercise prescription and overall management of these patients.” Lucy Martin, GP from Dudley
"It’s so important that our GPs know more about muscle-wasting conditions and that’s why I want to share this great resource with as many health professionals as possible. If we can help more GPs to do the course we will improve this vital part of our healthcare.” Patricia Lock (pictured), from Milton Keynes, who has congenital muscular dystrophy
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What next We will press for further improvements and investment in NHS care and support. To do this, we will: ensure greater patient participation in regional neuromuscular forums and networks to help improve local NHS care strengthen our links with Muscle Centres and clinics by working in closer partnership with clinicians, offering better support to people with muscle-wasting conditions develop further professional education for health professionals, including online training for paediatric physiotherapists involve more Parliamentarians in supporting our work. With thanks to a new grant of £80k over two years from Comic Relief, we will be able to build on the work of neuromuscular forums once current Department of Health funding ends.
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Research • treatments • specialist services • care and support • independent living • getting involved
Here for you Muscular Dystrophy UK supports people living with muscle-wasting conditions, right from the point of diagnosis, through every stage and every age. Through understanding and practical advice, we build a community of support for people living with muscle-wasting conditions. We offer trusted services through our free helpline and Information Standard-accredited factsheets. When people ask to be put in touch with others in similar situations, we introduce them to our volunteers who are there to offer their experiences, as well as a caring, listening ear.
Providing support and building communities from the moment of diagnosis 16
#EveryDayCounts
What we achieved
As the first port of call for people with a new diagnosis, we: sent 1,000 packs of practical and helpful information out to families.
Support across the UK with a new post in Wales – this now means family support staff are on the ground in each of the countries across the UK
20% increase in our network of patientled Muscle Groups, who discuss local services and identify gaps in care, bringing our total membership to 2,284
In providing practical advice, we: supported more than 1,300 individuals and family members who approached us for the first time recruited and trained 40 new volunteers living with muscle-wasting conditions to support others in similar siutations. In reaching and supporting more people living with musclewasting conditions, we: brought 400 people together to share information about their conditions, at events across the UK.
21% increase in requests for support and information – we responded to 33,812 requests
This vital work has been made possible by support from Trusts and Foundations, Family Funds, event fundraising, individual and corporate donations, including: £59k from the Moondance Foundation to establish our first in-country advocacy and outreach role in Wales. secured £6k from the Evan Cornish Foundation and Austin and Hope Pilkington Trust for a new project where young people affected by muscle-wasting conditions use film to explore and deal with their feelings. 17
What it means
"Living with a degenerative neuromuscular condition like Duchenne affects every aspect of my life. It is basically juggling between your quality of life and your necessary medical care, which constantly changes and presents new challenges to overcome. "So to receive accurate information from the beginning allows me to take back control of my life, and access services I didn't realise I was entitled to. Knowledge is very important. "Your future should be positive not a scary unknown prospect. Medical professionals cannot necessarily tell you about day-to-day life, but MDUK can provide realistic information. "Independence is crucial to live life happily, after all it is your life. Accurate information has enabled me to live with Duchenne in the best way possible.� Vivek Gohil (26, pictured) from Leicestershire
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What next
We will invest further in our care and support services for people with muscle-wasting conditions. We will listen to those we support, and align our services to their needs. To do this, we will: develop closer links with neuromuscular clinics across the UK to offer direct support at clinics to families living with musclewasting conditions develop new resources for adults with muscle-wasting conditions build on our pro bono relationship with law firms to support more families to get services, benefits or equipment they're entitled to be here to make sure no-one has to face living with a musclewasting condition on their own.
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Research • treatments • specialist services • care and support • independent living • getting involved
Independent living Muscular Dystrophy UK provides services and promotes opportunities to support everyone living with a muscle-wasting condition to live as independently as they wish. We do this by helping people to get the benefits, services or equipment they're entitled to. We also do this through Trailblazers, our network of young campaigners. They fight social injustice and campaign on issues that are important to them. Their campaigns help boost quality of life for young people living with muscle-wasting conditions.
Improving quality of life by helping people to fight for what they are entitled to 20
#EveryDayCounts
What we achieved In campaigning for access to welfare support, we: helped force the Government to make a U-turn on proposed Personal Independence Payments (PIP) cuts. In supporting people to fight for what they are entitled to, our: advocacy service helped 279 families.
£
secured £545k worth of services, benefits or equipment families were entitled to, with the support of our advocacy team
40 work experience placements for young disabled people on our new work experience programme
In bringing together young campaigners to fight for what they believe in, we: hosted 10 regional Trailblazer events, and four Q&A sessions on social media participated in four debates in Parliament on employment, mobility, higher education and access to sports stadiums had our work highlighted in the House of Lords Select Committee report into the Equality Act.
68 blog posts from Trailblazers, sharing their opinions, comments and experiences on a range of issues
12% increase in Trailblazer membership: 82 new members (bringing our total to 735)
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What it means "My work placement has given me a huge boost in confidence. It’s been great and so beneficial to get started in the workplace. I’ve learnt lots of new skills and have really enjoyed the daily contact and responsibility that comes with the role. “A few months ago I couldn't have imagined using public transport. Working for the charity has meant using the Tube independently to get to and from work, which has been brilliant. Having a job to go to has made me feel like a proper commuter and I now use public transport in my everyday life. Through this role I’ve had huge personal growth and feel so confident travelling; it’s as if the world has opened up for me. "Working in the Advocacy team is really rewarding. It feels great to be making personal improvements, and brilliant knowing I’m making a positive difference to other people's lives as well." Jack McLellan (24, pictured) from Essex, who has an undiagnosed form of muscular dystrophy, took part in a two-month work experience placement at Muscular Dystrophy UK
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What next
We will continue our work to promote independent living. To do this, we will: reach and support more people through patient-led Muscle Groups across the UK develop the work experience programme – and employment opportunities – for young disabled people, thanks to a new three-year grant of £110k from the City Bridge Trust reach and engage with more young disabled people via clinics and a new national conference for young people living with musclewasting conditions.
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Research • treatments • specialist services • care and support • independent living • getting involved
Over £8.3m raised towards our vital work, thanks to all our dedicated and committed supporters. Individuals, families and groups who fundraise for the charity go to tremendous lengths to support the fight against muscle-wasting conditions. Without their huge efforts and kind donations we would not be able to achieve all that we do.
Thank you.
£400k
from our fantastic corporate partners, including continued support from Matalan and London Classified's employees, and our new partnership with ING
£3m in legacy
income received, through the generosity of 47 people who remembered Muscular Dystrophy UK in their Wills
£880k+
including funding for new investments in research, care and support, contributed by charitable trusts and grant-making bodies
By working together we can beat muscle-wasting conditions more quickly 24
#EveryDayCounts
£273k raised
211 participants
with the wonderful support of the property sector at our flagship special event, the Microscope Ball
in 10 regional running events raised £79k
8,927 donors
in assistive technology grants awarded
supported the charity via direct debit or cash appeals, through the raffle, online shop and Christmas catalogue
£40k donation from the BGC Charity Day, thanks to Sir Ben Kingsley, Sam Allardyce and Richard Wilson for representing the charity
£38,478
£688k raised
by 80 Branches and Family Funds
£52,734 raised by our RideLondon cyclists who took on the epic 100mile challenge
5,000+
#TeamOrange participants in Virgin Money London Marathon, our own Town and Gown 10k events in Oxford and Cambridge, and other running events UK-wide
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Hope for Harrison In November 2015, Phil and Julie Loosen were given life-changing news: their little boy, Harrison, was diagnosed with Becker muscular dystrophy. He was just four years old. After the diagnosis, they searched online to see what support was out there. They found MDUK, and made contact. They decided to create Hope4Harrison, a Family Fund, to fundraise for research into Becker muscular dystrophy. They have thrown themselves into fundraising and, in the first four months raised £10,000. That’s enough to fund over two months of research into Becker muscular dystrophy.
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High-profile supporters
We are very proud to announce two new celebrity ambassadors have joined the charity: England and Arsenal footballer, Jack Wilshere, along with former footballer and Scottish FA Chief, Gordon Smith. We give very special thanks to both of them, along with our President Sue Barker, for their valued support. We also thank the following for their support: Paralympians Ollie Hynd and Stephen McGuire, as well as elite athletes Chloe Ball-Hopkins and Freya Levy sports stars Sam Allardyce, Dame Mary Peters, Carl Fogarty, Tyrone Mings, Kelly Sotherton, Matthew Hoggard, Dereck Chisora, Ken Doherty, Martin Adams, Jamie Baulch, Lizzy Yarnold, Nicole Cooke, Andrew Castle comedian Romesh Ranganathan, and Sky News presenter, Stephen Dixon TV personalities Dr Pixie McKenna, Mr Motivator, George Gilbey actors Sir Ben Kingsley, Richard Wilson, Julie Peasgood, Oliver Milburn, James Norton, Hugh Grant, Karen Lewis-Attenborough, and director Michael Attenborough.
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Raising awareness Muscular Dystrophy UK is the charity for all people living with a muscle-wasting condition. In order to reach out to more people living with the condition we know how important it is to raise awareness and build a community.
17%+ increase in followers on Facebook, bringing our total to more than 23,500
Find us on Facebook Badge
100%+ increase in targeted newsletters, with more than 188 eNewsletters sent to people about their specific conditions
CMYK / .eps
almost 300,000
www
visitors to the website
5,500+ views of information videos relating to a range of muscle-wasting conditions 28
2,040 pieces of media coverage secured
19%+ increase in followers on Twitter, bringing our total to more than 11,300
Joseph Patrick Trust The Joseph Patrick Trust is our welfare arm that awards grants towards the cost of specialist equipment, such as electric wheelchairs, scooters, specialist chairs and beds. We are very grateful for the generous support of Alexander Patrick CBE DL and the Patrick family trust.
206 grants worth £212k
including £38,478 in new grants for assistive technology to aid communication
“The Joseph Patrick Trust has helped me fund a wheelchair to allow me to stand up, for the first time in my life. Nobody will ever understand how special this is.”
"Being able to purchase a rise and fall powered chair has ensured that Millie has been able to access university life to the full." Millie's mum, Sophie Hawes, from Cheshire
Anon
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Our financial year
Overall voluntary income £8.340m
Thanks to our individual, company and trust supporters, we ended the year with a surplus of £1.687m.
years – all to be spent on research. The Research reserve now stands at £2.5m and the Clinical reserve at £500k. We have exciting plans to invest these funds in research over the next four years.
This was achieved while increasing our level of charitable activity by more than 28 percent. A significant part of this was thanks to people remembering our charity in their Wills.
At 31 March 2016, the free unrestricted funds were £1.528m, providing a sound level of reserves for development of charitable activity in the forthcoming year.
With this, we have been able to add a further £1.2m into our designated reserves for future
Events and volunteer fundraising Regular giving and appeals Corporate giving and sponsorship Trusts Legacies Other income
3%
Access to care Independent living Medical research
28%
31% 36%
56%
16%
11% 11%
7%
The total income for 2015/16 was £8.340m Income from donations, gifts, grants and fundraising activities totalled £5.031m. In addition, £3.044m was received from legacies. Investment income and other incoming resources amounted to £265k, of which £92k was receivable from the Duchenne Forum to fund research into Duchenne muscular dystrophy.
Expenditure on charitable activities The expenditure on charitable activities was in respect of three pillars: medical research, access to care and independent living. Medical research in the search for cures and treatments for musclewasting conditions comprised 56 percent of the total expenditure on charitable activities. Access to care and support comprised 28 percent and independent living (including communication and campaigning) 16 percent of our charitable activity. 30
With gratitude We are extremely grateful to so many people and organisations for their significant support this year: Adrian J Lajtha M.A. Alan Devlin Barclays Capital Berkeley Group BGC Partners Big Lottery Fund – Reaching Communities Bruce Wake Charitable Trust CeX Department of Health Innovation Excellence & Strategic Development Fund Dr Sally Whittet Dudley and Geoffrey Cox Charitable Trust Fowler, Smith and Jones Trust Helen and Ian Barwell ING Wholesale Banking Karen Lewis-Attenborough Lloyds Bank Foundation for Northern Ireland MAP Nemaline MariaMarina Foundation Matalan Retail Limited McBains Cooper Metro/London Classified Michael and Donna Thirkettle Moondance Foundation Mr & Mrs Tony Moorwood Mr Alan Devlin Mr and Mrs J A Pye's Charitable Settlement Mr Charles G R Manby Mr David Hanrahan Mr David Hastie Mr Ian Carson Mr James Pearson Mr Jeremy Champion Mr Mansoor Ahmad Mr Marcus W R Brown Mr Michele Pucci Mr Tony A Carey Mrs Gladys Row Fogo Charitable Trust Next Professor Deidre Kelly Santander Consumer Finance Simplyhealth
St George PLC The A.M. Pilkington Charitable Trust The Albert Hunt Trust The Annandale Charitable Trust The Austin and Hope Pilkington Trust The Barbour Foundation The Barcapel Foundation The Boshier-Hinton Foundation The Brian Shaw Memorial Trust The Broughton Charitable Trust The Catherine Cookson Charitable Trust The Chapman Charitable Trust The Charles and Elsie Sykes Trust The Christopher H R Reeves Charitable Trust The City Bridge Trust The Clapp Family Charitable Trust The Constance Travis Charitable Trust The Cranbury Foundation The Evan Cornish Foundation The George A Moore Foundation The Greendale Charitable Foundation The Hayward Sanderson Trust The Hospital Saturday Fund The Hugh Fraser Foundation The IBB Trust The Inman Charity The J.K. Young Endowment Fund The Joseph and Annie Cattle Charitable Trust The Joseph Strong Frazer Trust The Kirkby Foundation The Lady Hind Trust The Leach Fourteenth Trust The Lord Belstead Charitable Trust The Mason le Page Charitable Trust The MEB Charitable Trust The Montague Thompson Coon Charitable Trust The N Smith Charitable Settlement The P F Charitable Trust The Paul Bassham Charitable Trust The Pixel Fund The R S Macdonald Charitable Trust The Rosetrees Trust 31
The Shanly Foundation The Sir Edward Lewis Foundation The Sir John Eastwood Foundation The Sir Samuel Scott of Yews Trust The Sovereign Health Care Charitable Trust The Sunrise (Sidmouth) Trust The Swire Charitable Trust The Sylvia Aitken Charitable Trust The Sylvia and Colin Shepherd Charitable Trust The Templeton Goodwill Trust The W O Street Charitable Foundation The W.A. Cargill Charitable Trust With thanks to members of the following committees, whose enthusiasm and generosity make our events possible: the Microscope Ball Committee, Sports Quiz Committee, Oxford Spirit of Christmas Committee, Q Trust Quiz Committee, Pledge Dinner Committee, the Appeal Board and the Town and Gown Committee. Our thanks to all those who tirelessly raise funds for the charity’s work through Branches, Groups and Family Funds. We highly value your support. We rely almost entirely on voluntary donations and legacies to fund our vital work. We are not able to list every individual here, but our sincere thanks go to everyone who has donated and fundraised for the charity this year. Thank you.
Patron HRH The Prince Philip, Duke of Edinburgh KG KT OM GBE ONZ QSO AK GCL CC CMM President Sue Barker OBE Honorary Life Presidents Lord Walton of Detchant Kt TD MA MD DSc FRCP FMed Sci (deceased 21 April 2016) J Alexander Patrick CBE DL Professor Martin Bobrow CBE FRS FMed Sci
Muscular Dystrophy UK 61A Great Suffolk Street London SE1 0BU 0800 652 6352 (freephone) info@musculardystrophyuk.org www.musculardystrophyuk.org Our 2015/16 Financial Statements are available upon request. Download a copy from our website or call the office and we’ll send you a hard copy. Registered Charity No. 205395 and Registered Scottish Charity No. SC039445
Vice Presidents Anil Ahir Peter Andrews MBE MC The Hon Michael J Attenborough CBE Sophia Bergqvist Professor Kate Bushby MBChB MSc MD FRCP Jane Byam Shaw Tony Carey Tom Chamberlayne-Macdonald Jeremy Champion Roger Cooke Ian Corner Candida Crewe Charity Crewe Sebastian Crewe Professor Dame Kay E Davies CBE DBE FMED Sci FRS Mark Disney Professor Alan Emery FRCP EDIN FRSE Sir Alex Ferguson CBE Andrew Graham Dr David Hilton-Jones MA MD FRCP FRCPE Christian Hore Tania Hore Christine Jenkins Matthew Kelly Sarah Kelly Simon Knights Charles Manby Nicola Manby Andrew Martin Sir Bert Massie CBE Martin Moore Professor Francesco Muntoni FRCPCH FMed Sci
Alan Noble Valerie Patrick Jeremy Pelczer Julian Pritchard Keith Rushton Jonathan Staniforth Sir Sidney Samuelson CBE Michael Thirkettle Baroness Celia Thomas of Winchester MBE Professor Sir Douglas Turnbull MBBS (Hons) MD PhD FRCP Andrew Weir Guy Weston Professor Matthew Wood MBChB MA DPhil Board of Trustees Bill Ronald (Chair) Anil Ahir Marcus Brown Gwen Davies (Retired 26/09/2015) Phillippa Farrant Ian T Gordon Andrew Graham (Treasurer) Professor Michael Hanna FRCP MD MRCP BM BCh David Hastie Sheila Hawkins Dr Sheonad Macfarlane BSc Med Sci, MB ChB Charles Manby Dr Amy Jayne McKnight PhD Robert Warner (Elected 26/09/2015 for a one-year term) Richard Price Baroness Celia Thomas of Winchester MBE Observer : Professor Veronica van Heyningen CBE FRS FMedSci Senior Management Team Robert Meadowcroft (Chief Executive) Nicholas Bungay (Director of Campaigns, Care and Information) Jenny Howard (Director of Finance) Sal Lalji (External Affairs Advisor) Dr Jenny Versnel (Director of Research and Business Innovation) Catherine Woodhead (Director of Development)
Muscular Dystrophy UK is the operating name of the ‘Muscular Dystrophy Group of Great Britain and Northern Ireland’ (a company limited by guarantee: 705357) Photo credits: Kii Studios / Roger Moody / Chris O'Donovan / Jack Lawson / Warren Media / bonilla1879/fotolia / bigpa/fotolia / kanate/fotolia / rashadashurov/fotolia