Campaign newsletter March 2014

Campaign The newsletter for our supporters

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Welcome to this issue of Campaign, with updates and news of exciting events and developments from the Muscular Dystrophy Campaign.

We are thrilled to have a huge range of running, cycling and challenge events on offer during the year, and many people have already signed up to take part. Our Make Today Count fundraising initiative will have taken place in late February/early March, and our brand new Muscular Dystrophy Campaign Town and Gown 10k in Durham will be taking place on 9 March, adding a third event to our popular Town and Gown 10k series.

The charity has also appointed a team of advocacy ambassadors who are all volunteers and affected directly or indirectly by a neuromuscular condition. They will be offering support to people across England struggling to access the benefits, services and equipment to which they are entitled.

Read about the new Duchenne Forum that we launched last year with five other charities focused on funding new groundbreaking research into Duchenne muscular dystrophy. We bring you news of the research projects we’re currently funding, as well as news of our campaigning work across the UK. I hope that by reading Campaign and seeing the impact of the charity’s work right around the country, and on so many lives, that you will know how much we value your support and the huge difference it makes.

Thank you for your support.

Sue Barker MBE President, Muscular Dystrophy Campaign

Leading research.

Supporting people. www.muscular-dystrophy.org

Campaign newsletter for supporters of the Muscular Dystrophy Campaign , written and produced entirely in-house.

Muscular Dystrophy Campaign, 61A Great Suffolk Street, London SE1 0BU t: 020 7803 4800 e: info@muscular-dystrophy.org w: www.muscular-dystrophy.org Registered Charity No. 205395 and Registered Scottish Charity No. SC039445

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News My first 10k Diagnosed with facioscapulohumeral (FSH) muscular dystrophy six years ago, Emma Peirce (33) says that until she started training for the Muscular Dystrophy Campaign Town and Gown 10k in Cambridge last October, very few people knew she had muscular dystrophy. Asking friends and colleagues to support her was her way of finally telling them.

Emma started training early for her first-ever 10k race. Continued issues with her health meant she had to avoid running for nearly three months, but she kept up her fitness through walking, swimming and Pilates.

“Crossing the finish line meant overcoming so many physical and emotional barriers.

I crossed the line with my sister and we both burst into tears. I had a personal goal to run the whole way, and I did – in less than an hour.”

Our first tailored eNewsletter

relating to FSH went out in January, and

we’ll be sending similar eNewsletters to

families affected by myotonic dystrophy,

Becker muscular dystrophy, spinal muscular

atrophy, limb girdle muscular dystrophy,

Ullrich and congenital muscular dystrophy

and Charcot-Marie-Tooth disease,

throughout the year.

If you’d like to sign up for one of these

twice-yearly eNewsletters, bringing you

condition-specific research news and

charity updates, go to www.muscular dystrophy.org/enewsletter.

Duchenne Research Breakthrough Fund

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e launched the Duchenne Research Breakthrough Fund in 2012, to accelerate the pace in development of effective treatments for Duchenne muscular dystrophy. Thanks to the generous support of families across the UK, over £1m has been raised to date,

helping us to fund 14 research projects.

In March our research team will be giving updates on the Fund’s progress in Glasgow, Newcastle, Liverpool and Bristol.

To find out more, do get in touch with us at volunteerfundraising@ muscular-dystrophy.org Leading research. Supporting people.

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New research projects In October 2013, the charity announced the award of eight new grants to move us closer to finding treatments for Duchenne muscular dystrophy, some of which may also benefit people with Becker muscular dystrophy.

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eading scientists believe a combination of different therapeutic approaches may be required to treat boys and men with Duchenne muscular dystrophy. These new grants demonstrate our commitment to investing in a diverse research programme.

The projects were selected by our Medical Research Committee, using our stringent peer review process, and were assessed by our Lay Research Panel, which consists of people affected by a neuromuscular condition. In this way we ensure only high-quality research that is relevant to our families is funded.

The total investment in these projects of £840,000 was made possible thanks to the individual donors and family fundraising for the charity’s Duchenne Research Breakthrough Fund, and to the charities in the Duchenne Forum.

We are also announcing funding of a Clinical Training and Research Fellow, Dr Lizzie Harris at Newcastle University, who aims to find a genetic diagnosis for people with limb girdle muscular dystrophies.

Summaries of the newly-funded projects can be found on our website at www.muscular-dystrophy.org/research/grants If you’d like to find out more about, or support our groundbreaking research programme, do get in touch with us at research@muscular-dystrophy.org www.muscular-dystrophy.org

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Working in partnerships The Muscular Dystrophy Campaign has over the past year joined forces with several other charities across the UK to fight muscle-wasting conditions and improve the lives of everyone affected by them.

The Duchenne Forum was launched in 2013, bringing six charities together in a funding partnership dedicated to beating the devastating muscle-wasting condition, Duchenne muscular dystrophy. The Muscular Dystrophy Campaign, Alex’s Wish, the Duchenne Children’s Trust, Duchenne Research Fund, Joining Jack and Harrison’s Fund have jointly committed £840k over four years to fund seven pioneering research projects.

In late 2013, the Scottish Public Health Minister Michael Mathieson announced a partnership between the Chief Scientist Office (Scotland), the Muscular Dystrophy Campaign and Action Duchenne to fund, together, a Clinical Training and Research Fellowship in Scotland. This Fellowship, open to young medics during speciality training, will provide an opportunity for training in clinical or laboratory research techniques related to Duchenne muscular dystrophy.

Joining forces with the other charities under the excellent management of the Muscular Dystrophy Campaign is maximising our efforts in funding only the best quality research proposals.

Dr Margaret McDonald, Chief Executive of the Duchenne Research Fund Leading research. Supporting people.

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GET ACTIVE!

GREAT NORTH RUN 2014 Thanks for making the day count Our 2014 Make Today Count fundraising initiative is set to be bigger than ever. On 28 February and 1 March 2014, over 150 of our brave supporters took on a 10,000ft skydive to raise vital funds for our Duchenne Research Breakthrough Fund. The fundraising initiative has to date helped fund over 5,016 hours of research and, in 2014 alone, has already raised more than £22,000. www.muscular-dystrophy.org

If you’d like to join #TeamOrange and run for us in this prestigious half-marathon on Sunday 7 September, you can register online for one of our guaranteed places. It costs just £35, and we’d encourage you to do this soon as our places go quickly.

Do get in touch with Hayley on 020 7803 4824 or h.gill@muscular-dystrophy.org to find out more.

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City runs We have a range of fantastic running events on offer in 2014. Choose one near you – the Great South Run, Great Manchester Run, Bupa 10,000, Great Birmingham Run, Belfast Marathon or Edinburgh Marathon.

COME AND GOLF WITH US

Go to www.muscular-dystrophy.org/ running to choose your event.

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f you’re a keen golfer and are up for playing 72 holes in one day, then please join us and play at four courses near you on Friday 13 June in our Four Course Classic 2014.

Take advantage of our ‘early birdie’ offer of just £50 per four-ball (instead of £100) for a limited time only!

If you’d like to find out more, contact Hayley on 020 7803 4824 or visit www.fourcourseclassic.co.uk

Our Town and Gown 10k series The popular Muscular Dystrophy Campaign Town and Gown 10k series is growing.

We have introduced a new event – in Durham on 9 March – and have developed the route for the Cambridge event in October. After record-breaking numbers in the Oxford Town and Gown 10k last year, the 2014 event in May is already proving popular, especially in the Junior 3k run.

Come and join us at www.townandgown10k.com Leading research. Supporting people.

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#TeamOrange in 2014

Muscular Dystrophy Campaign Durham Town and Gown 10k 9 March Registration fee – £16 Sponsorship – £50

London Marathon 13 April

Belfast Marathon

Registration fee – £100 Sponsorship – £1,600

5 May

Registration fee – Various Sponsorship – £200

Muscular Dystrophy Campaign Oxford Town and Gown 10k 11 May Registration fee –£20 Sponsorship – £50

Land’s End to John O’Groats 6-18 May, 26 Aug - 7 Sept 2014

Great Manchester Run

Registration fee – £299 Sponsorship – £2,500

18 May

Registration fee – £40 Sponsorship – £250

London 2 Brighton 24-25 May

Edinburgh Marathon 24-25 May

Registration fee – £49 Sponsorship – £375

Bupa Lo

n

don 10,0 25 May 00

Registra tion fee – £25 Sponsor ship – £1 50

Coast to Coast Cycle 12-15 June or 26 August – 7 September Registration fee – £149 Sponsorship – £1,050

Registration fee – £85 Sponsorship – £375

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RideLondon Freecycle 10 August

RideLondon100

Free

10 August

London to Paris

Registration fee – £45 Sponsorship – £550

30 July – 3 August, 2-6 September* Registration fee – £149 Sponsorship – £1,300

Pedal for Scotland 7 September

Lap the Lough

Registration fee – £26 (47 miles) Registration fee – £40 (110 miles) Sponsorship – £200

24 August

Registration fee – £30 Sponsorship – £100

Great North Run 7 September

Registration fee – £35 Sponsorship – £300

Great Birmingham Run

Great South Run

19 October

26 October

Registration fee – £20 Sponsorship – £200

Muscular Dystrophy Campaign Cambridge Town and Gown 10k

12 October Registration fee £20 Sponsorship £50

*Alternative dates available, please ask for further details.

Diary illustration: bomberclad/istock

Registration fee – £250 Sponsorship – £200

If you would like to find out more about any of these events, do get in touch with us on 0845 872 9058 or volunteerfundraising@ muscular-dystrophy.org

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All Party Group chair for Northern Ireland

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e’re delighted to welcome South Down MLA, Karen McKevitt, as the newly-elected Chair of the All Party Group on Muscular Dystrophy in the Northern Ireland Assembly.

In 2012 the All Party Group, which published the McCollum report, highlighted the alarming lack of neuromuscular care services in Northern Ireland – which was even putting lives at risk. Karen, who succeeds Conall McDevitt as Chair, will be leading calls for investment in essential support for patients and their families.

Our campaign news Clinical guidelines in the pipeline

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n December, we were delighted to hear of plans by the National Institute for Health and Care Excellence (NICE) to develop long-awaited clinical guidelines for ‘uncommon neuromuscular conditions’. The development of these guidelines will begin later this year.

This is excellent news for people affected by neuromuscular conditions and represents an important step towards the delivery of comprehensive specialist multi-disciplinary neuromuscular care by the NHS. To date, muscular dystrophy has only been included in NICE’s general standard for neurological care, which did not reflect the complexity of neuromuscular conditions and the highly specialist care required by those affected.

This development is the result of several years of the charity’s campaigning activity including parliamentary pressure, meetings with government ministers and a constructive dialogue with NICE. We now look forward to helping develop these guidelines so that patients can receive the highest standards of care.

www.muscular-dystrophy.org

Lord Walton shortlisted for health campaigner award Our Honorary Life President, Lord Walton of Detchant (right), was one of three people shortlisted for the Health Campaigner of the Year in the 2014 Dods Parliamentary Awards. The nomination recognised Lord Walton’s untiring work in the House of Lords and on the All Party Parliamentary Group for Muscular Dystrophy in campaigning for improved care and support for people living with neuromuscular conditions.

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I have found staff very helpful.

Physical access is usually good within shops, but sometimes access from street to shop is not good, as there are stairs to their entrances etc.

Benjamin James, London

Trailblazers, high streets and relationships Earlier this year, as January sales reached their peak, Trailblazers launched their report into access to the high street. Short-changed revealed that many disabled customers were struggling to access shops, cafés and restaurants, with some shoppers even saying they felt ‘invisible’ after being ignored by staff who instead addressed their companions or carers.

In response to the survey’s findings, Trailblazers put together a list of ‘top tips’ for high street businesses to provide better practical support to disabled customers. Simple adjustments such as staff at stores and eateries knowing how to locate and safely set up access ramps or offering to carry items to the checkout and inserting and removing cards from card readers, could encourage more young disabled people to make use of their local high street.

In February, Trailblazers also published It’s complicated – a report containing a collection of personal perceptions and experiences of disability and relationships. The report gave Trailblazers the opportunity to give their views – anonymously or otherwise – about this sensitive subject.

If you’d like to find out more about Trailblazers and read any of their reports, visit www.muscular-dystrophy.org/trailblazers

Muscle Groups

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ur Muscle Group meetings across the UK bring together local families to develop campaigns to improve services in their communities.

Around 250 people affected by muscle-wasting conditions came to our last series of Muscle Groups, which focused on experiences of accessing local services, revealing gaps in specialist physiotherapy, hydrotherapy and respiratory care.

Clinical Commissioning Groups came along to these meetings, and we continue to work closely with them to address these gaps.

Find a meeting in your area www.muscular-dystrophy.org/ musclegroups

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Our 2014

conferences and events The Muscular Dystrophy Campaign is committed to providing access to ongoing training and development for health professionals working with individuals and families affected by neuromuscular conditions.

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he Neuromuscular Care Advisor/Specialist Nurse Professional Development meeting will take place on 7 and 8 April, and the Annual Neuromuscular Care Conference in November (date tbc).

Do come and join us at our 2014 conferences, where you’ll get to meet other families affected by muscle-wasting conditions and hear news and updates on the charity’s research and campaigning work.

Scottish Conference Saturday 11 October Beardmore Conference Centre in Glasgow

National Conference and AGM Saturday 18 October Hilton Hotel in Coventry We’d love to see you there. Find out more at www.muscular-dystrophy.org/conference2014 www.muscular-dystrophy.org

A great warm and friendly atmosphere thanks to all involved 2013 N ational Conference delegate

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ADVOCACY

Bridging the Gap of services

In 2013 the Muscular Dystrophy Campaign received funding from the Department of Health to set up the Bridging the Gap project in England, to ensure people affected by neuromuscular conditions play a leading role in the development and commissioning of the services they use.

Bridge illustration: maximmmmum/istock

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he recently-launched neuromuscular expert forums create space for clinicians, NHS commissioners, patients and hospital trusts to identify and fill the gaps in local neuromuscular services. The creation of neuromuscular consultant and physiotherapist roles in the North West and Yorkshire and Humberside are successes we hope to replicate across the country.

In addition to developing effective training on neuromuscular conditions for physiotherapists and GPs and best practice care plans for patients, we are also developing an online map of neuromuscular services in the UK so people can find the nearest and best support available. The services will launch later this year.

The Muscular Dystrophy Campaign’s advocacy team is here to fight for anyone affected by a muscle-wasting condition who is struggling to access the services, benefits or equipment they are entitled to. In 2013, the team took on 177 cases (70 per cent more than 2012) and secured £600,000 worth of vital equipment and services.

School plans Simon contacted the advocacy team after his son, who has Duchenne muscular dystrophy, had been denied an Education, Health and Care (EHC) plan, which is a pilot for the new process of addressing children’s special education needs. We advised Simon to arrange a meeting to appeal the decision, drafted a supportive letter and discussed a strategy for the meeting. Equipped with this and the information we sent them, the family persuaded the Council to provide an EHC plan.

The advocacy team was very careful to listen to our concerns and provide clear and unbiased advice. We’re very grateful to them and would recommend that others facing similar issues contact them. said Simon Leading research. Supporting people.

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Meet John,

the sit-down comedian Our fight against muscle-wasting conditions depends on the support of people like you.

The generous response we get when we share stories of our supporters makes a huge difference to our vital work.

They made me laugh lots and it felt special having so many kind people thinking about me and the charity.

John

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ust before Christmas we introduced you to John Dickson, a ten-year-old boy with Duchenne muscular dystrophy, who is described by his dad as the UK’s first ‘sit-down comedian’.

The response to the story of his great humour, balanced with the reality of life with a severe muscle-wasting condition, made this the most successful appeal of its type in many years, raising more than £25k*.

Thank you.

We also asked you to send him jokes and gifts. You’ll see from the photo how much he enjoyed receiving these.

If you’d still like to respond to the appeal, or maybe tweet On behalf of the Dicksons us some of your favourite jokes so we can pass them on and hundreds of families like to John (he’s always happy to hear more), please go to theirs across the UK, thank you. www.muscular-dystrophy.org/jokes *£25k could fund four months of groundbreaking research to find treatments and cures for muscular dystrophy and related neuromuscular conditions. With an additional £5k we could fund a PhD studentship for a year, ensuring another young scientist specialises in the field of neuromuscular science. See p4 and p5 to read about the new research projects we are funding. www.muscular-dystrophy.org

Where would we be without you?

The truth is, we wouldn’t be able to fight muscle-wasting conditions without your support.

It was scary when our mum said we should practise for when we’d need to be in a wheelchair. We didn’t want to give up.

Dan is 17 years old. He has Duchenne muscular dystrophy. His twin brother, Sam, and younger brother, Tom, 14, also have the severe muscle-wasting condition.

All three of them use powerchairs.

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The Muscular Dystrophy Campaign funds pioneering research into Duchenne muscular dystrophy and related neuromuscular conditions giving the boys’ family hope that one day there will be an effective treatment – or indeed a cure – for their condition.

We have been able to do this work because people like you support us with voluntary donations and gifts in your Will.

You don’t have to be wealthy to leave a gift to us in your Will. When you remember the Muscular Dystrophy Campaign in your Will, you are helping to build a future for boys like Dan, Sam and Tom. None of this work, now or in the future, is possible without you.

For more information on legacies and to request an information booklet, please get in touch with us at: t: 020 7803 4834 e: legacy@muscular-dystrophy.org w: www.muscular-dystrophy.org/legacy Registered Charity No. 205395 and Registered Scottish Charity No. SC039445

Leading research. Supporting people.

Subscribe to Target magazines The Bisset family lives in Muir of Ord in Ross-shire, Inverness. This extraordinarily active and sporty family run a family business and keep up with three active and busy sons, two of whom have Becker muscular dystrophy and one of whom is a downhill mountain biking champion.

Read more about the Bisset family and other outstanding Scottish supporters in our flagship publication, Target MD Issue 1 of 4 2014, which has a focus on our work in Scotland. You’ll also meet Hope, a six-year-old Labradoodle! Future editions of the magazine will include features on our work in Wales, Northern Ireland and England, and all editions include news of research, campaigning and fundraising.

For just £18 a year, you can receive quarterly editions of both Target MD and Target Research. It’s easy to subscribe with an annual direct debit at www.musculardystrophy.org/target or call us on 020 7803 4837 to find out more.