TargetMD Spring 2011

Spring 2011

Leading the fight against muscle disease

Holiday plans Our guide to a carefree getaway

ENCOURAGING RESULTS Hope for Duchenne muscular dystrophy treatment

Trailblazers in Parliament

The voice of young campaigners in Westminster

For support Tel: 0800 652 6352 Email: info@muscular-dystrophy.org Web: www.muscular-dystrophy.org

Know your rights We’ll help you get the care you’re entitled to

LATEST RESEARCH FUNDRAISING NEWS EXPERT ADVICE REGIONAL ROUND-UP

WELCOME

Standing, Recline, Rise or Tilt

Welcome to the spring 2011 copy of Target MD, which is not only bursting with colour but also with great news of important steps in research and inspiring personal stories.

Xeno & B500 Power Wheelchairs

Our research news includes encouraging results in Duchenne muscular dystrophy research, following the exon skipping clinical trial that Dutch pharmaceutical company, Prosensa, conducted in Europe. With the required funding, we hope further research studies can progress to clinical trial here in the UK. Our newly-launched advocacy service has already brought about very positive results for individuals and families struggling with local services. We launched our hard-hitting Invest to Save report in Westminster last month with many members and supporters present, while the work of our young campaigners Trailblazers has also been recognised with the formation of the All Party Parliamentary Group for Young Disabled People. All this and our work in Scotland, Wales and Northern Ireland too!

CONTENTS

SPRING 2011

4 NEWS

20 CARE SUPPORT Find out about our 2011 conferences

Speaking up for your rights at home and in Parliament

22 FUNDRAISING

8 CAMPAIGNS

Trekking in Peru for funds

Bringing specialist healthcare into focus

32 INSPIRATION Meet Team Jed

10 Lifestyle

33 DIARY DATES

Planning a stress-free holiday

12 RESEARCH

Pinpointing the genetic cause of disease

Find out what’s happening near you in the next few months

6

All our work depends on the ongoing and generous support of people like you, our volunteers and donors, and for this we are most grateful. Our fundraising teams work hard to generate more funds and to introduce our work to more supporters and communities around the UK. With progress on many fronts, now is the time to redouble your support for our vital work.

And as you look ahead to a relaxing break or the summer sun, do enjoy reading this latest copy of Target MD and, as ever, my thanks for your valued support.

Robert Meadowcroft, Chief Executive

24

The magazine for supporters of the Muscular Dystrophy Campaign

25

The Muscular Dystrophy Group of Great Britain and Northern Ireland 61 Southwark Street, London SE1 0HL. Registered Charity No. 205395 and SC039445 Advertising enquiries: Parminder Sangha at Parminder.Sangha@tenalps.com / 020 7878 2367

HOW TO DONATE...

All other enquiries: If you would like to contribute to TargetMD or for any other enquiries, please contact us at targetmd@muscular-dystrophy.org

Otto Bock Healthcare PLC For more information call: 0845 430 1231 • www.ottobock.co.uk

UK/ADV/MOB/0333

Otto Bock Powerchairs offer more than a range of movement. Appearance, function and individual adaptations are all considered in the development of the chair with you, the user in mind.

Whether you desire the freedom of standing, recline, rise or tilt options Otto Bock has a range to satisfy most requirements.

If you want to make a donation to the Muscular Dystrophy Campaign, here’s how to contact us:

Disclaimer While every effort has been made to ensure the information contained within TargetMD is accurate, Muscular Dystrophy Campaign accepts no responsibility or liability where errors or omissions are made. The Muscular Dystrophy Campaign does not necessarily endorse the products advertised and no responsibility can be accepted for claims made by the advertisers. The views expressed in this magazine are not necessarily those of the charity. ISSN 1663-4538

Leading the fight against muscle disease in the UK

FOLLOW US ON

• Muscular Dystrophy Campaign, 61 Southwark Street, London SE1 0HL • Tel: 020 7803 4800 • Online: www.muscular-dystrophy.org • donations@muscular-dystrophy.org

www.muscular-dystrophy.org

TargetMD 3

News

News

Speak up, we’ll speak out

Call our care and campaigns team to help you fight for your rights

Are you having difficulties with your local services? Have you had to deal with the consequences of what you believe to be an unfair decision? If you need to understand your rights or need some help in speaking up for yourself so that you can get the care and support you are entitled to, our supporter services are here to help you.

Here at the Muscular Dystrophy Campaign, through our free advocacy service, we have helped a number of people overturn local authorities’ rulings to get the assistance they deserve.

Corbin, 19, who has Duchenne muscular dystrophy, was evicted from his home along with his mother and sisters. The family was re-housed by the local authority in inadequate and inaccessible emergency housing.

His school welfare officer got in touch with the Muscular Dystrophy Campaign to ask for advice as the situation was so serious that Corbin had been admitted into hospital.

We then contacted the local housing association, social services and his MP. By working closely with all parties, Corbin’s needs were better understood and he was moved to a bigger, ground floor flat, with the necessary adaptations. Our grant giving programme, the Joseph Patrick Trust, was able to arrange for Corbin to receive a set of neater eaters – arm supports that enable people to regain some use of their arms, giving Corbin a sense of independence in tasks like eating and using a computer, an independence which is so important to a young man of his age.

“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.”

Bernie Gamble, London

4 TargetMD

Jon, 30, has Duchenne muscular dystrophy.

He contacted the Muscular Dystrophy Campaign’s care and campaigns team as his local authority was refusing to provide 24 hour care in his own home, instead arguing that he should move into a residential care home. Jon is an extremely independent man: he helps to run a disability advice centre; he has a PhD and is an active member of the South East Coast Muscle Group. The proposal to move him into a care home, where his independence would be severely compromised, was unacceptable.

The care and campaigns team sought expert advice and wrote letters to his local authority and Continuing Health Care Team explaining that by not providing this support they were violating Jon’s human rights and neglecting their responsibility to vulnerable people.

By working together, the decision was reversed and Jon is now able to live independently and safely in his own home.

“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, South East Coast Danielle, 25, has limb girdle muscular dystrophy and because of her condition and muscle weakness, she currently relies on her boyfriend for all her personal care, washing and daily needs. Danielle’s local authority refused to make the required bathroom adaptations, claiming that they did not have ‘the financial resources available’. Without these adaptations, her dignity, independence and quality of life were clearly being compromised.

The care and campaigns team contacted her

For support call 0800 652 6352

local housing association and MP explaining that such adaptations were vital and that refusing to make these adaptations was unlawful. With the team supporting the family in this way, the local authority overturned their decision and agreed to provide the necessary adaptations. Danielle is now looking forward to having the facilities to enjoy her independence and her privacy.

‘The campaigns team really helped to get my daughter the adaptations she needs and deserves. They listened to our concerns and made the local authority listen. We are very grateful for all their help’ Karen Wade (Danielle’s mum), East of England.

“I feel so much better for just speaking to someone who’s on our side.”

Mrs Sharpe, Surrey.

(The Muscular Dystrophy Campaign helped her appeal her disabled facilities grant.)

“I cannot begin to explain what a difference this is going to make to my whole life.”

Patricia Locke.

(The Muscular Dystrophy Campaign supported her to get her new wheelchair.)

Jen Taylor, Policy and Campaigns Officer at the Muscular Dystrophy Campaign, said the service was designed to ensure that each person affected by muscle disease had the support to lead a full, independent life and to receive the highest quality of health and social care.

“We are here to provide support for a number of issues. We encourage people to come to us if they feel they are the victim of an unfair decision by their local statutory services, such as local authorities, schools, employers or health boards/primary care trusts. We are here not only to provide information, but also to take on board specific cases and to provide individually tailored advice, with access to legal advice,” Jen said.

If you are experiencing difficulties with social care, education, access to specialist health care services or employment rights issues, contact the Muscular Dystrophy Campaign’s care and campaigns team on 020 7803 2853 for help in fighting for your rights. * The Joseph Patrick Trust (JPT) is the welfare trust of the Muscular Dystrophy Campaign and provides partfunding towards the cost of equipment to promote mobility and independence. Since it was established in 1986, the JPT has awarded over £6 million to more than 6,000 children and adults with muscle-wasting diseases, for equipment including powered wheelchairs, adapted computers and electric beds.

Charity focuses on education and development As a result of the Muscular Dystrophy Campaign’s continuing success in campaigning for the NHS to take on the employment, funding and management of neuromuscular care advisors, the charity’s focus is shifting to the support, development and education of these health professionals.

Lyn Inman may not be new to the charity, but she is new in her role as director of its newly-formed education and development directorate. The purpose of this new structure is to develop strategies and activities to achieve long-term improvements in care and support for individuals and families living with muscular dystrophy and related neuromuscular conditions.

And these individuals and their families are set to benefit from this new focus, as Lyn will play a key role in ensuring the care advisors receive adequate and relevant specialist education, development and peer support.

Lyn Inman, Director of Education and Development

Trailblazing for young disabled people in Parliament The Muscular Dystrophy Campaigns’ Trailblazers work hard to fight inequality and exclusion. Their fight has gone all the way to Westminster, and was instrumental in the launch of an All Party Parliamentary Group (APPG) for Young Disabled People.

With the support of the Speaker of the House of Commons, John Bercow MP, and chaired by Paul Maynard MP, the APPG will tackle issues facing young disabled people across the UK in their everyday lives and challenge the attitude of society towards access for young disabled people.

At the launch in February, MPs heard short speeches from Trailblazers David Gale, Sulaiman Khan, Zoe Hallam, Hannah-Lou Blackall and Judith Merry on the issues they were setting out to investigate: poor access to public transport, leisure facilities, higher education, tourism and employment opportunities for disabled graduates.

Speaker John Bercow said he expected the new APPG to be an ‘assertive and articulate group’ and commended the issues that the APPG and the Trailblazers had identified.

Mr Maynard, who himself has cerebral palsy, said the new APPG would be a significant step forward in improving ministers’ and MPs’ understanding of the inequalities young disabled people face in day-to-day life.

“I feel proud to be chairing this group, which has been set up to tackle the uphill struggle that young disabled people face to achieve goals in life, often taken for granted by nondisabled peers. We have come a long way in how we view disability in this country, but physical and social barriers continue to be a harsh reality,” he said.

Since launching in 2008, the Trailblazers have conducted a series of investigations into shocking inequalities faced by young disabled Britons.

They have worked with organisations such as NUS, the London Assembly Transport Committee and Passenger Focus to fight for fair treatment.

Reports by the group have found that: • seventy percent of young disabled people

believe their job applications have been rejected because of how employers view their disability, and 75 percent say physical access to the workplace is a major barrier to finding a job; • on half of train journeys Trailblazers encounter a lack of basic disabled facilities both at stations and on board and Trailblazers are frequently unable to board public buses. Forty percent have been forced to pay more to use a wheelchairaccessible taxi; • eighty percent of Trailblazers experience difficulties using leisure facilities to socialise and almost all feel that employees at venues such as cinemas, restaurants, pubs, bars, music and sports venues do not understand disabled customers needs.

Trailblazer Zoe Hallam, who has limb girdle muscular dystrophy, believes young disabled people are a minority group in Britain and that their voices are often not heard on the issues that affect them.

“Important decisions are often made on our behalf by people who believe that they know what we need and want. The APPG for Young Disabled People is an opportunity for us to speak directly with parliamentarians on the subjects that really matter,” she said.

According to Bobby Ancil, Project Manager of the Muscular Dystrophy Campaign Trailblazers, the first meeting of the APPG for Young Disabled People was a landmark step forward for the campaigning group.

“For the past three years we have campaigned hard against all types of discrimination that young disabled people face. We have worked towards providing clear, tangible and realistic steps for authorities, businesses and organisations to take to help tackle inequality,” Bobby said.

For more information about Trailblazers and the new APPG for Young Disabled People, please get in touch with us at 020 7803 4807 or email trailblazers@muscular-dystrophy.org

For latest news visit www.muscular-dystrophy.org/news

TargetMD 5

News extra

Championing the fight against muscle disease

v good campaigning award for Trailblazer v, the national young volunteers’ service, recently honoured Sulaiman Khan, Trailblazers London Ambassador, for his tenacious and intelligent campaigns to bring about change and challenge decisions that have a negative impact on the lives of disabled people. v described Sulaiman as a “passionate, committed and innovative campaigner for the rights of young disabled people”.

At a gala event held at the Indigo2 in North Greenwich, London, in March, Sulaiman was presented with the v-inspired SHOUT Award for his ground-breaking, imaginative and dedicated campaigning efforts.

Sulaiman said he was elated and humbled at being awarded a national SHOUT Award.

“When my name was announced, I was – ironically enough – stuck inside a wheelchair lift on my way to the stage to accept the award.

It just shows that the work of accessibility campaigners is far from over. The v team was incredibly hospitable and accommodating, and I am grateful and ecstatic for being honoured for campaigning for an issue that is close to my heart and my circumstances,” he said.

Over 70 regional award winners attended the event, along with celebrities and special guests including Natasha Bedingfield, James Caan, Keith Lemon and Baroness Tanni Grey-Thompson.

Sulaiman was joined at the event by fellow Trailblazer, Carl Tilson, who won the North West regional SHOUT prize and was also shortlisted for a national award.

Bobby Ancil, Trailblazers project manager, said, “I’m so pleased that Sulaiman’s efforts with Trailblazers have been recognised. He is a fantastic campaigner and is determined to fight for his and other people’s rights.

Today, all Trailblazers should feel proud of the difference they are making to the lives of young disabled people.”

Trailblazers is a nationwide organisation of young disabled and non-disabled campaigners.

They are part of the Muscular Dystrophy Campaign, and they aim to fight social injustices experienced by young people living with muscle-wasting diseases or related conditions.

They have conducted surveys and published reports relating to access to education, transport, leisure facilities, employment and tourism, with the aim of ensuring they can gain access to the services they require.

Miss England going gold for us Miss England beauty Jessica Linely turned her statuesque good looks to gold and posed as an Oscar to promote our fundraising initiative, ‘At the Movies’.

The 21-year-old model, who represented England in the 60th Miss World competition, took part in the recent arty shoot to promote the film-themed fundraising campaign, which is a great way of having fun and raising money for us. There are many ways to get involved, such as organising a themed film screening and charging your friends to come along, holding a glamorous première or awards party, forming your own film club or even having a ‘Dress like a star’ day at work.

To find out more about organising your own At the Movies event, visit www.muscular-dystrophy.org/movies

6 TargetMD

For support call 0800 652 6352

Dave Anderson MP, Chair of the All Party Parliamentary Group (APPG) for Muscular Dystrophy, has been shortlisted as Health and Wellbeing Champion in the Dods Charity Champion Awards 2011.

Having lost a brother and a sister to muscular dystrophy, Dave Anderson continues to lead the parliamentary fight against muscle-wasting diseases across the UK. The APPG for Muscular Dystrophy, which Dave has chaired for over five years, has been crucial in ensuring breakthroughs in the care available through the NHS for people with musclewasting disease, particularly through the Walton Report into access to specialist neuromuscular care.

In March 2011, the National Specialised Commissioning Team within the Department of Health informed Dave Anderson and other Parliamentarians they were taking steps towards the development of a national plan for neuromuscular services.

Now in their eighth year, the Dods Charity Champion Awards portray a really positive side of politics. They provide a platform for the voluntary sector to pay tribute to parliamentarians, recognising a dedication to promoting charitable causes and campaigns in Parliament, both to constituents and across the country.

In addition, the Awards help charities to get their voices heard in the political arena and to promote their special contribution to improving places and lives.

Crelling Harnesses for Disabled Ltd

We manufacture a large range of belts and harnesses designed to provide postural support for children and adults with special needs. Many harnesses are suitable for those passengers with challenging behaviour or learning difficulties.

Our special needs belts and harnesses are suitable for use with all types of equipment including wheelchairs, scooters cars, buses, aircraft seats and bathing seats, etc.

Vehicle harnesses must be worn in conjunction with the existing safety belt unless the passenger is exempt for medical reasons.

For more information Tel: 01253 852298 Fax: 01253 821780 Email: info@crelling.com Website: www.crelling.com 12 Crescent East, Thornton-Cleveleys, Lancs. FY5 3LJ

Campaigns

Campaigns

Great news for neuromuscular care The NHS took encouraging and groundbreaking steps earlier this year when they called on all ten Specialised Commissioning Groups (SCG) in England to prioritise neuromuscular services in their annual work plans.

The neuromuscular service plan, which will benefit people with muscular dystrophy and related neuromuscular conditions, came out of discussions with members of the All Party Parliamentary Group (APPG) on Muscular Dystrophy.

Teresa Moss, Director of the National Specialised Commissioning Team, told MPs and Peers that it had been agreed that neuromuscular services would be a priority in the annual work plan of each of the ten SCGs, covering key issues such as: • specialist physiotherapy provision in the multi-disciplinary team • access to specialist equipment • an audit of unplanned emergency admissions for patients with neuromuscular conditions • making sure there are well equipped neuromuscular professionals across England • a single service specification defining specialist neuromuscular services.

The APPG on Muscular Dystrophy interrogated NHS bosses on the proposals for

NHS reforms, the impact these would have on people with neuromuscular conditions, and how services would be commissioned, planned and delivered under the new NHS Commissioning Board.

Dave Anderson MP, Chair of the APPG on Muscular Dystrophy, said the new plans followed the Walton Inquiry and the hard work led by campaigners, parliamentarians, clinicians and people living with muscle disease.

“However, it’s vital that we don’t take our foot off the accelerator. Patients and families across the country – many living with devastating, life-limiting conditions – need to see the impact of these changes, on the ground, as soon as possible,” he said.

Health Minister Earl Howe wrote to Lord Walton of Detchant in March following a meeting between the Minister, his officials and the Muscular Dystrophy Campaign. In his letter, Earl Howe states, “There are weaknesses in commissioning, which is behind the patchiness and problems accessing vital

services for those living with these dreadful conditions, their families and carers.

“A national working group has recently been set up, led by the East of England SCG, with representatives from all SCGs to identify and scope what is happening nationally in the commissioning of neuromuscular services.

It has been acknowledged that all regions are facing similar challenges in the commissioning of services for neuromuscular patients… this national group will give added support to the delivery of the recommendations arising from these regional reviews of neuromuscular services.

“A provisional work programme has been identified to be taken forward with each SCG region having responsibility for a particular service improvement area.”

Robert Meadowcroft, Chief Executive of the Muscular Dystrophy Campaign, said, “We welcome this as the first step towards a coherent, national approach to specialist neuromuscular services – thanks largely to the hard work and determination of our supporters across the country backed up by our Parliamentary supporters. ”However, there is still a long way to go, and we must increase our campaigning work now more than ever before. The economic climate and reform to the NHS must not delay progress in this vital area.”

To find out more about the national approach for neuromuscular services and the APPG for Muscular Dystrophy, contact campaigns@muscular-dystrophy.org

Investing a little to save a lot In an effort to promote proper access to specialist care and equipment for people with muscle disease, the Muscular Dystrophy Campaign launched its hard-hitting report, Invest to Save: Improving services and reducing costs, at a successful event in the Houses of Parliament last month.

Over 100 people with muscle disease from across the country joined forces with MPs and Peers, NHS commissioners and clinicians to launch the report, which reveals that the NHS wastes £31 million each year on unplanned emergency admissions to hospital for muscle disease patients that could be avoided through proper access to specialist care and equipment.

Campaigners presented the report to Health Ministers Simon Burns MP and Paul Burstow MP, as well as Equalities Minister Lynne Featherstone MP and the Speaker of the House, John Bercow MP.

8 TargetMD

Paul Burstow spoke about the compelling evidence for investment, highlighting the need for timely intervention to prevent unplanned emergency admissions to hospital.

Robert Meadowcroft, Chief Executive of the Muscular Dystrophy Campaign, said the NHS could not afford not to invest in muscle-wasting disease care.

“The cost of doing nothing is far greater.

Muscle-wasting disease care in the UK has made some progress in a short time, but in some areas patients are still being failed and we have encountered reluctance to put even minimal funding into specialist services.

We urgently need a full UK-wide NHS audit of emergency care for these patients, to uncover the full extent of this waste and to pave the way for the substantial steps needed to address it,” said Robert.

Backed by a group of leading clinicians, the Muscular Dystrophy Campaign argues

For support call 0800 652 6352

Health Minister Paul Burstow MP with young campaigning Trailblazer, Vivek Gohill.

that investing as little as £65 per patient each year, in frontline health services and equipment, would significantly reduce critical care on hospital wards. We are now calling for a full national audit of emergency care for people with muscle-wasting conditions, to address the wasted funds.

Campaigning mum fights for better services Joanne Ashton, whose six-year-old son Liam has Duchenne muscular dystrophy, has vowed to call every Primary Care Trust Chief Executive in the North West to demand better services.

“Funding for specialist care advisors, physiotherapy and an expert consultant would dramatically improve the quality of life not only for Liam, but also for the other 8,000 families in the North West living with devastating muscle-wasting diseases,” Jo said.

Jo (pictured above with Liam) has had the full support of the Muscular Dystrophy Campaign in her quest. The North West NHS currently spends £5 million each year on emergency care for people with muscle-wasting diseases. If the NHS instead invested a mere fraction of this amount, they could provide preventive specialist healthcare and services and give this patient group the chance to lead full lives.

“We have just two specialists at the moment to cover a population of 8,000, both based in Liverpool and both only seeing children. Liam’s young now, but he will need support throughout his life. I dread to think of what other parents go through when their children hit their late teens and the paediatric services they rely on suddenly drop away,” said Jo.

Summary Care Record In order to improve the safety and quality of patient care, the NHS is to introduce Summary Care Records. These electronic records will give healthcare staff faster, easier access to essential information about you, to help provide you with safe treatment when you need emergency care or when your GP practice is closed.

The Summary Care Records will be gradually introduced across England and your local NHS will send you a letter and information pack before they start making Summary Care Records in your area. We are telling you about this, so you have time to think about your choices, as you can choose not to have a Summary Care Record.

If you decide to have a Summary Care Record it will contain important information about any medicines you are taking, allergies you suffer from and any bad reactions to medicines that you have had. Giving healthcare staff access to this information can prevent mistakes being made when caring for you in an emergency.

You may want to add other details about your care to your Summary Care Record, and you can ask your GP for the additional information to be included. Suggestions would be to include: • This person has a neuromuscular condition and is at risk of various complications which may be important if they are admitted to hospital.

• There are known respiratory and cardiac complications associated with some muscle diseases and oxygen administration may reduce respiratory drive in patients with hypercapnia.

• Some muscle problems are associated with risks during anaesthetics.

• If a person with a muscle problem is immobilised due to fracture or other reasons, they may be at risk of permanent loss of mobility. Early mobilisation may be indicated.

Visit www.muscular-dystrophy.org/ nhscarerecords for more information.

Carolyn Evans

Kathryn Titchen

Specialist care in new areas Regional care advisors, who offer specialist care for people with muscle disease, provide vital practical and emotional support for people with muscle disease, and their families. Based at NHS neuromuscular clinics around the UK, the care advisors have backgrounds in nursing, social care, physiotherapy and occupational therapy. They work with statutory service providers, education authorities and other health and social care professionals in order to advise, support and meet the needs of people with muscle disease.

Some new care advisors have recently been appointed in South Wales, Hull, Birmingham and Oxford. Jane O’Connor will work alongside Sue Gallagher in Birmingham. Sarah Harris has been appointed as a neuromuscular care advisor to work alongside Rachel Salmon in South Wales, and Kathryn Titchen joins Carolyn Evans to boost the neuromuscular care advisor team in Oswestry.

Three posts are due to be advertised for the East of England, and one for North Wales, soon. Visit the care advisors section on our website to find out how you can access specialist advice and support.

Take action Find out more and get involved by talking to our Director of Care, Support and Campaigns.

Nic Bungay

020 7803 4847

campaigns@muscular-dystrophy.org

www.muscular-dystrophy.org

TargetMD 9

Lifestyle

Lifestyle

Holiday dreams...

Caring to write Transport Advisory Committee (DPTAC) is an independent body set up by the government, and they provide information about road, rail, air or sea travel, car ferries, the Euro tunnel, parking, as well as travelling with oxygen.

Visit them at http://dptac.independent. gov.uk/door-to-door/ or call them on 020 7944 8011.

Tourism for All

...and the reality We’re all going on a summer holiday. Or are we? It can be difficult for disabled people to plan carefree holidays in the same way as their non-disabled peers. Not all resorts and hotels and airlines have good access, and it can be frustrating trying to find suitable venues and means of travel.

T

he Muscular Dystrophy Campaign information service has put together a factsheet to help you plan and choose your destination to ensure your holiday is fun and trouble-free.

In addition, the young campaigning group, Trailblazers, carried out an investigation into tourism and wrote a report highlighting factors that can affect young disabled people on holiday, such as booking holidays, accessibility in hotels, air travel, accessibility at tourist attractions and disability awareness in the tourism industry. If you’d like a copy of the report – All Inclusive? – call Bobby on 020 7803 4807 or email

10 TargetMD

trailblazers@muscular-dystrophy.org For example, what equipment will you need for your holiday? Will you need a raised toilet seat, a mobile hoist, a wheelchair? Are you able to take your equipment with you, or will you need to hire or borrow some of it? The factsheet includes details of companies that hire or loan equipment that you can contact after doing an assessment.

If you are a manual wheelchair user, it is a good idea to have your wheelchair checked before you leave to lessen the chances of it breaking down. Consider taking a spare inner tube, as well as a puncture repair kit and some tools with you.

For support call 0800 652 6352

Powered wheelchairs might need different consideration: is it essential to take it with you, or can you hire one when you get there?

Can you use your charger if you travel abroad, or will you need to get a special adapter?

Check with your airline about transporting your wheelchair, and ensure that your travel or home insurance covers your powered wheelchair or other equipment while you’re on holiday. It is always worth servicing the wheelchair before you go, so it is less likely to break down while you’re away.

If you plan your trip well in advance, you can find out as much as you can about how to get there. The Disabled Persons

Tourism for All is a voluntary organisation that provides free information and advice about travel for disabled adults and children, carers, single parent families and elderly people, for travel in the UK and elsewhere in the world. Visit their website at www.tourismforall.org.uk for advice on accessible tourism.

As an additional bonus, some of the hotels and self-catering accommodation inspected and listed by Tourism for All are offered at discounted rates for members through its reservation line 0845 124 9973.

The Rough Guide to Accessible Britain, at www.accessibleguide.co.uk is another useful resource for planning your holiday in the UK. Visit their website and order a guide to accessible holidays, with all the latest, up-to-date information.

In choosing the destination for your holiday, make sure to find out about accessible

activities and how you can get out and about, before making any bookings. If you like beach holidays find out if the accommodation has beach wheelchairs or if you can rent one.

If you are travelling abroad you might find it useful to bring translated information on your condition in case of an emergency.

When arranging insurance, check that the travel insurance covers medical treatment and does not exclude “a pre-existing medical condition”. It is often worth shopping around to make sure you get best value for money.

The Equality Act 2010 makes it illegal for insurance companies to charge a disabled person more for an insurance policy without evidence that proves that the disabled person is a greater risk than a non-disabled person.

For anything further you want to know about holidays, call our Information Line on freephone 0800 652 6352 or print the factsheets from our website: www.muscular-dystrophy.org/factsheets

She might not think of herself as brave and she might consider herself to be ‘just a mum’, but Glenys Smith is now also a published author.

I’m not BRAVE, I’m just a MUM is Glenys’ first-person account of her family, her son Adam and his life with Duchenne muscular dystrophy, a genetically inherited disease. Adam, now 24, was three when he was diagnosed with the muscle-wasting condition, and the book follows Glenys’ life of caring full-time – and mainly as a single mum – for her son, while looking after an older son and daughter at the same time.

Glenys built a wonderfully strong bond with her son, and fought hard to ensure that Adam would live as normal a life as possible.

Adam, now 24, is a bright, talented artist with a clever, witty mind and has, himself, written and illustrated two books.

“Adam gave me a lot of encouragement with the book, and says it was very brave of me to bare our lives so openly and honestly to the world. He was thrilled to read the finished book, and thinks the book will inspire other disabled people to stay positive,” Glenys said.

“When I first started writing the book, it was more like a diary of things I had jotted down. Often at night, when I was unable to sleep because of all the problems and worries, I found it so helpful to write things down. Once I began to write the book, I struggled to find time to write because the story just unfolded and flowed, although parts of it were difficult to revisit. On the whole, writing the book was very enjoyable and cathartic,” she said.

ISBN: 9781452095738 PUBLISHED BY AUTHORHOUSE 2010 £9.90

www.muscular-dystrophy.org

TargetMD 11

Research

Research

Genetic mutations and the search for a diagnosis Unaffected muscle

Dystroglycanopathy muscle

Proteins located along the membrane of muscle fibres. The sugar molecules (shown in red) attached to dystroglycan (shown in yellow) are reduced or absent in patients with a dystroglycanopathy. The sugar molecules are required for dystroglycan to link effectively with proteins outside of the muscle fibre.

Mild forms of limb-girdle muscular dystrophy can be caused by mutations in the same genes previously thought only to cause severe congenital muscular dystrophies, according to research led

by Professor Francesco Muntoni at the Institute of Child Health in London. With a Muscular Dystrophy Campaign PhD studentship grant, Professor Muntoni and Dr Caroline Godfrey have been searching for the genes and their defects that can cause a dystroglycanopathy. Here’s what they found: What is dystroglycanopathy?

Dystroglycanopathies are a group of muscular dystrophies that show a variable spectrum of symptoms ranging from severe symptoms present at birth, to relatively mild symptoms that only begin to show in adulthood. It includes forms of both congenital muscular dystrophy and limb-girdle muscular dystrophy. The common feature is that they are all caused by problems with a protein called alpha-dystroglycan.

Alpha-dystroglycan forms an important structural link between the muscle cell and its surroundings and helps to give the muscles strength. In order for this link to work effectively, sugar molecules need

12 TargetMD

to be added to alpha-dystroglycan. The dystroglycanopathies arise due to defects in the process of adding sugar molecules to this protein. Defects in several genes involved in this process have already been identified as the cause of dystroglycanopathies.

Reaching a precise diagnosis Although previous research has identified genetic defects that can cause dystroglycanopathy, a large proportion of patients remained without a genetic diagnosis.

Finding a patient’s disease-causing mutation is important; it allows doctors to provide a more accurate diagnosis and to predict how the condition might progress. It also aids genetic

For support call 0800 652 6352

counselling and family planning for patients and their families as well as being vital in the development of treatments.

Before it was known that the dystroglycanopathies were caused by defects in the process of adding sugar molecules to alpha-dystroglycan, this extremely rare group of conditions was not well understood and it was hard for clinicians to make a precise diagnosis. An international approach, studying families from around the world, was needed to reveal that this diverse group of muscular dystrophies were not separate conditions but were instead all linked by a common problem with the alpha-dystroglycan protein.

The breakthrough came in 2001 when it was

found that mutations in one of these genes (known as FKRP) were associated with both a severe form of congenital muscular dystrophy as well as a relatively mild form of limb-girdle muscular dystrophy. The reason for this is that although the mutations are in the same gene, they are in different places on the gene and therefore have a different effect on how the gene functions. This led researchers to wonder if mutations in other genes (not just FKRP) might also cause both mild and severe forms of muscular dystrophy.

Researchers carried out a large study looking at the genes of over 100 people with a dystroglycanopathy. As FKRP mutations had already been carefully researched, they concentrated their study on those patients who had not been given a genetic diagnosis.

Success struck, and in about a third of the patients, they found a mutation in one of five different genes - POMT1, POMT2, POMGNT1, LARGE and FKTN. These genes each hold the instructions for a protein involved in adding the essential sugar molecules to alpha-dystroglycan.

Following these findings, they carried out a more detailed analysis to understand why a certain type of mutation could cause mild symptoms and another mutation could cause more severe symptoms. They hoped to identify a pattern and established that the range of symptoms caused by different mutations in these genes was far wider than originally thought. This provided further proof that that mild forms of limb-girdle muscular dystrophies could be caused by mutations in the same genes previously thought only to cause severe congenital muscular dystrophies. They also found that it was not possible to predict from the clinical symptoms which gene mutation causes the dystroglycanopathy. Ultimately, only a genetic test will determine this.

A new classification system As the relationships between the genes, mutations and symptoms were uncovered, a confusing naming system emerged. This included ‘old’ clinical classifications such as Walker-Warburg syndrome and muscle eye brain disease alongside the ‘new’ congenital muscular dystrophy variants such as type 1C and 1D and ‘new’ limb-girdle muscular dystrophy variants such as type 2I, type 2K. To help make diagnosis quicker, the researchers developed a simplified system comprising seven broad clinical categories: individuals were described as having either a congenital or a limb-girdle muscular dystrophy and further subdivided according to the degree of brain involvement. This

system is now widely used by clinicians around the world.

Identifying mutations in other genes One of the major outcomes was to highlight the large number of patients who remain without a genetic diagnosis. This strongly indicated that genes other than the six studied were involved.

The researchers then faced a problem: with around 26,000 individual genes in the human genome, where to start looking to search for new mutations that could be causing a dystroglycanopathy? Using existing animal models, and with the knowledge they had about the function of other genes, they were able to identify a number of genes as strong candidates and used muscle cells grown in the laboratory to investigate them further.

They looked in particular at one gene, named B3GNT1 and were able to show that if you decreased the activity of this gene, you could see a reduction in the amount of sugar molecules attached to alpha-dystroglycan.

This hallmark mirrors that seen in patients.

However, after studying the DNA of 40 patients, they could not find any mutations in this gene, but will keep this gene in mind when searching for a genetic diagnosis in other patients.

Another important discovery, when looking at the DNA of a large family with a dystroglycanopathy but with no genetic diagnosis, was finding a mutation in the dystroglycan gene itself. This study, performed in collaboration with Turkish and American researchers, demonstrated for the first time that mutations in the dystroglycan gene can also cause, in rare circumstances, dystroglycanopathy.

Looking to the future Overall, this research has allowed detailed analysis of the underlying genetic defects in individuals affected by dystroglycanopathy.

The data collected has also allowed a far larger proportion of patients to receive a precise molecular diagnosis.

With the prospect of genetic therapies, medicine is destined to become highly personalised and detailed information about a person’s genetic mutation will be required for its application. The research supported by the Muscular Dystrophy Campaign has greatly increased the understanding of disease processes underlying dystroglycanopathies and will feed into the pipeline of information for the development of new treatments and therapies.

Researcher under the microscope Dr Caroline Godfrey (pictured above) was funded by the Muscular Dystrophy Campaign to work on the three-year dystroglycanopathy research project in Professor Francesco Muntoni’s laboratory at the University College London Institute of Child Health.

How will your research funded by the Muscular Dystrophy Campaign benefit patients?

The results of this study will make diagnosis both faster and more accurate.

We now also have a better understanding of these conditions, which is important both in the identification of further defective genes and in the development of new therapies.

Now that your research project has finished, what are you working on?

I am working with Dr Matthew Wood and his team at the University of Oxford, focusing on gene therapy for conditions that affect the nervous system and muscle. My research is focussed on the development of exon skipping for Duchenne muscular dystrophy. In particular I am researching ways to enhance the delivery of the exon skipping drug to the muscles. My research aims to allow boys affected by Duchenne muscular dystrophy to benefit from this therapy as rapidly as possible.

What have been the highlights of your research so far?

I have found working in this field extremely exciting and it is especially rewarding to know that the research can have direct benefits for people affected by muscle disease. It has been satisfying to witness the rapid progress that has been made in recent years which has opened up many exciting avenues for potential new treatments.

www.muscular-dystrophy.org

TargetMD 13

President’snews Research awards

Research news from around the world Encouraging results in Duchenne muscular dystrophy research Some encouraging results have been published from the exon skipping clinical trial conducted in Europe by the Dutch pharmaceutical company, Prosensa. Exon skipping uses short strands of DNA called “antisense oligonucleotides” or “molecular patches” to restore the production of the protein, dystrophin, which is missing in boys with the condition. The molecular patch tested in the trial could potentially be used to treat about 13 percent of boys.

Most of the boys in the trial produced new dystrophin protein in their muscles after the initial five weeks of treatment and there was a small increase in their average walking ability after the 12 week extension study. Although the results of such a small study need to be interpreted with caution, they do bode well for the phase three trial that is already underway to test more thoroughly the effectiveness of this drug.

In other news, Dr Matthew Wood in Oxford has been awarded a £2.5 million grant funded by the Wellcome Trust and the Department of Health to develop the next generation of exon skipping drugs. The research team aims to improve the delivery of the molecular patches to achieve greater restoration of dystrophin in all muscle, including the heart. The Muscular Dystrophy Campaign has supported research to develop exon skipping technology from its very early stages and currently funds research in Dr Wood’s laboratory, so it is hoped that this welcome boost will get this next generation treatment into clinical trial as quickly as possible.

Translational research in the spotlight A two-day conference was held in London in March to showcase the best UK neuromuscular

14 TargetMD

science, and speed up its translation into patient benefit. This is the fourth year that the Muscular Dystrophy Campaign and the MRC Centre for Neuromuscular Diseases have hosted the UK Neuromuscular Translational Research Conference, which involved more than 200 clinical researchers, laboratory-based researchers and clinicians.

On the first day, two types of neuromuscular conditions were focused on – mitochondrial diseases and peripheral neuropathy, which includes Charcot-Marie-Tooth disease. On the second day research into non-invasive scans MRI - was highlighted. These scans may be able to monitor effectively whether a treatment is working throughout all the muscles of the body, and provide a better alternative to taking muscle biopsies. Another key topic was animal models of neuromuscular diseases which are essential for the development and testing of potential new treatments.

As well as a busy schedule of 24 talks over the two days, the latest results of over 80 research projects were also displayed. These were scrutinised during tea and lunch breaks, allowing researchers at all stages of their careers a valuable opportunity to share ideas.

New insights into myotonic dystrophy Researchers studying human embryonic stem cells have found two new genes that may be involved in causing some of the symptoms of myotonic dystrophy. The two closely related genes were found to be less active in nerve cells affected by myotonic dystrophy. The researchers showed that this may be causing symptoms that some patients experience, such as learning disabilities and daytime sleepiness, and may also reduce the ability of the nerves to communicate effectively with the muscles.

This new insight will help researchers develop treatments that can address the wide range of symptoms that patients experience.

For support call 0800 652 6352

1.6 TDi manual 5 speed - CO2 149g/km 1.6 TDi automatic 7 speed DSG - CO2 152g/km

Genetic diagnosis for rare form of CMT Research part-funded by the Muscular Dystrophy Campaign has discovered new mutations causing Charcot-MarieTooth disease (CMT). Researchers led by Professor Mary Reilly at the MRC Centre for Neuromuscular Diseases in London studied ten patients with unusual changes to the PMP22 gene that cause symptoms of either CMT or HNPP (hereditary neuropathy with liability to pressure palsies). These patients had a change to one “letter” of the DNA code at different locations along the PMP22 gene.

Changes at two of these locations had never been found before. This new information will help clinicians gain a genetic diagnosis for patients with this rare form of CMT and provide them with more accurate information on how the condition might progress.

2.2 CRDi manual 6 speed - CO2 179g/km 2.2 CRDi automatic 6 speed - CO2 199g/km

Targeting drugs Research part-funded by the Muscular Dystrophy Campaign in Dr Matthew Wood’s laboratory in Oxford has reported a new way of targeting drugs (such as molecular patches) to the brain and central nervous system. This shows promise for conditions such as spinal muscular atrophy and with further research it may also be able to efficiently target muscle.

Comparing treatments for myasthenia gravis In the biggest study of its kind, US researchers have compared plasma exchange and intravenous immunoglobulin treatments for myasthenia gravis. This study has confirmed that both treatments are equally effective at saving the lives of myasthenia gravis patients having a severe relapse and identified some factors that might help clinicians decide on one treatment over another.

2.2 CRDi manual 6 speed - CO2 179g/km 2.2 CRDi automatic 6 speed - CO2 199g/km

Peugeot Partner Tepee 1.6 HDi (Euro5) manual 5 speed - CO2 139g/km 1.6 HDi (Euro5) automatic (EGC) - CO2 125g/km

Fiat Multipla 1.9 Multijet 5 speed manual - CO2 164g/km

Care support

Care support

Changing spaces

and lighter. And we met another neighbour who had moved to one of the bungalows across the road because his son had Becker muscular dystrophy. Sadly his son had died a year earlier, aged 16, and he and his wife are still grieving for him.

Many people that the Muscular Dystrophy Campaign supports live independently and, if their mobility changes, so will the need for home adaptations.

We have developed factsheets about the practical considerations in adapting your home to suit your needs, so do visit our website or call our information line to find out more.

S

heila Hawkins has been going through the process of adapting her home, and has kindly documented her experience for us.

Meet Sheila I’ve had facioscapulohumeral dystrophy (FSH) for over twenty years. It’s been a nuisance but only in the last five years has it started to slow me down seriously. We’ve been renovating a run-down bungalow close to where we live, so as I get less mobile we can move in a more planned and considered way, rather than realising I can’t climb the stairs to the bathroom and having to move house very quickly.

We live in an Edwardian villa house, with steep stairs, long narrow corridors, and no off-road parking. I wanted to stay put. I’d already got a disabled parking permit and a disabled bus pass so we approached Leicester City Council to ask for advice on whether the house could be adapted for wheelchair use. We were told they wouldn’t do that until I needed a wheelchair as that time might never come.

Well, yes, but I know enough people with FSH whom I have seen become less mobile over the years, so there’s a strong probability that I could be in a wheelchair at some point. However, after measuring our doorways and corridors, I realised it wouldn’t be possible to adapt this house, anyway, however much I’d like to stay.

We started looking for bungalows nearby that we could renovate and make disabled-

16 TargetMD

September – October 2010

Creating more space and light as the house was adapted

friendly. I signed up to a site that alerts you to properties according to your particular requirements. We did lots of drive-by assessments where we immediately decided the property wasn’t accessible, or looked a lot smaller than in the picture, and went to see a couple of properties that were unsuitable.

Finally, in April last year we found the property we had been looking for: a three-bedroomed bungalow about a mile from where we lived.

The bungalow needed a lot of work. There were cracks at the tops of some walls and the living room was really gloomy, however it did have level access, a large bathroom, a wide front door space and lots of potential. We put together a budget to renovate the house (without any disabled adaptations) which came to £25k, so took that off the asking price and put in an offer. After a bit of haggling we got the property at the price we offered.

We invested in a full survey (at a cost of about £500) which was worth it for peace of mind, knowing the internal cracks could be repaired. We also discovered that our bank would not lend us a mortgage on a property that we were not going to move into within 28 days. This was a bit tricky as on the one hand we had a good reason in that we wanted to do it up and adapt it for my disability, but on the other hand I wanted them to think that I could continue to pay the mortgage. In the end we financed the purchase by extending the mortgage on our current house, and on 10 June 2010 it finally became ours.

My husband, Paul, immediately started

For support call 0800 652 6352

looking at the technical aspects of the building whereas I started seeking advice.

I had discovered that the Red Cross Disabled Living Advisor would give general preemptive advice, and I invited her round straight away. It transpired that the bathroom that we thought was fine wouldn’t fit in a wheelchair and she gave us some helpful advice on layout, turning circles etc, as well as loads of information about suppliers. I also decided to have a party, partly so our friends would appreciate the final result but also to encourage suggestions about what to do with the house. (Visit www.redcross.org.uk or call 0844 412 2804 to find out about the regional services the British Red Cross provides for people with disabilities.)

By late June we submitted our plans to Leicester City Building Control. Their role is to approve the fitness of building works, and they are a really useful source of impartial advice about how to do things properly, compared to a builder who is quoting for a job. Because the purpose of the renovation was to make adaptations for disabled access we didn’t have to pay a registration fee (usually about £95), and they very quickly gave us the go ahead, asking us to inform them when certain pieces of work were due to take place. We also met our neighbours who seemed pleasant and happy about access and disruption.

August 2010 We got a tree surgeon in to remove the conifers and the whole place seemed larger

Paul strengthened the roof, putting in additional bracing as a preliminary to moving internal walls. However he has been delayed.

He’s a self-employed gardener and by this time of year work has usually slowed down, but for some reason he still has a lot of work.

We wanted to widen the doorways but discovered that it was messy, disruptive and best done early on in the adaptation process.

What was more complicated was finding wider doors which were not that easily available for the domestic setting. We learnt that it’s a good idea to fit a kick-plate at the bottom of a wheelchair to prevent damage and scuffing to doors and walls, which makes panelled doors unsuitable. In the end we chose doors from a company which supplies doors to offices and shopping centres and they will supply and fit the doors, handles and frames. We had to choose what we wanted long before we were thinking about style and decorations.

We needed new windows and external doors and were keen that the front and back doors didn’t have sills that had to be stepped or tripped over. What seemed to take much longer to work out was how I wanted each door to open. Eventually the outside will be repaved with level access.

We got some quotations for installing a disabled bathroom and one for central heating and then decided we’d rather have the same plumber install both. However, disabled adaptations don’t attract VAT, whereas central heating does, so we needed to treat these as two separate jobs, with separate bills. The bathroom will be a wetroom with a walk-in shower, non-slip Altro flooring, and a higher toilet, as well as an ordinary sink and fittings.

Further information re VAT and disabled adaptations is available from www.hmrc.gov.uk/vat/sectors/builders/ disabled.htm One of my concerns was the small kitchen and I wanted some help to maximise the space so I went to B & Q as they advertised kitchen planning services. This proved quite useful. What was much harder was working out where we wanted sockets and light switches, how high they needed to be above

Strides ahead for neuromuscular data A new national database that will facilitate research, audit and standardise clinical assessment of patients with neuromuscular disorders, has been developed in the UK. Known as the National Neuromuscular Database, it will contribute to national and international initiatives in the field of neuromuscular disorders. Its development has been supported by the Muscular Dystrophy Campaign and the MRC Centre for Neuromuscular Disease.

The database was originally set up by Professor Francesco Muntoni and Dr Adnan Manzur (Dubowitz Neuromuscular Centre, Great Ormond Street Hospital) to 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 Myositis (IBM), the congenital muscular dystrophies and myopathies.

It 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; Cure CMD. The NorthStar DMD module of the database is the longest standing, with 500 individuals registered. Data has been provided to facilitate national audits in boys with Duchenne muscular dystrophy of: • glucocorticoid steroid use • prevalence of vertebral fractures • prevalence of Vitamin D deficiency • body mass index.

Data is also contributing to international developments in the field of outcome measures for clinical trials: • International meeting re Clinical Outcome Measures in Duchenne Muscular dystrophy – summary data from the North Star data set was presented at this meeting held in Washington, USA in June 2010. This was a National Institute for Health initiative organized

by TREAT-NMD and Children’s National Medical Centre and supported by CureDuchenne, the Foundation to Eradicate Duchenne and Ryan’s Quest • North Star Ambulatory Assessment (NSAA) - the NSAA was developed as part of the work of the network as a functional assessment tool for ambulant boys with Duchenne muscular dystrophy. Formal evaluation of the scale has been undertaken using Rasch methodology.1 The National Neuromuscular Database provides a powerful tool to enhance the understanding of the longitudinal history of complex neuromuscular disease; facilitating optimal standards of clinical care and offering a useful resource to research initiatives.

1. Mayhew A, Cano S, Scott E, Eagle M, Bushby K, Muntoni F, The North Star Clinical Network for Paediatric Neuromuscular Disease. Moving towards meaningful measurement: Rasch Analysis of North Star Ambulatory Assessment in Duchenne muscular dystrophy. Dev Med Child Neurol. 2011 Mar 17. doi: 10.1111/j.1469-8749.2011.03939.x. [Epub ahead of print] Further information on this project and its developments can be found on the clinical databases section of the Muscular Dystrophy Campaign website.

the floor etc, where the boiler would be and how to fit a radiator in the kitchen.

We discovered the floor was uneven and this caused problems in fitting the back door.

Once the doors and windows were fitted, there was a new job to do: levelling the kitchen floor.

The plasterer started his work at the end of January and then the plumbers came. At this point things really started to happen and everything quickly changed from a building site to something that looked like a potential home. Nevertheless, as the TV programmes say, it’s all in the finish…

Contact us If you’d like advice on where to get the support you need, contact our Information Manager.

Claire Kelleher

020 7802 4805

c.kelleher@muscular-dystrophy.org

www.muscular-dystrophy.org

TargetMD 17

Care support

The Mobility Roadshow

Northern Irish group to tackle poor levels of care

A

new group, dedicated to fighting for a fair standard of care for musclewasting disease patients, launched in Northern Ireland in April.

Made up of families affected by musclewasting diseases and with the backing of the Muscular Dystrophy Campaign, the 50-strong group of campaigners from all over Northern Ireland will dedicate their efforts initially to call on NHS leaders to tackle poor levels of care and support for the conditions, and to cut the £2.5 million spent every year on emergency hospital admissions for patients.

There are 2,000 families affected by musclewasting diseases in Northern Ireland and currently there is just one specialist care advisor. The role of the care advisor is to give emotional support to these families, to help in co-ordinating crucial healthcare services, planning hospital visits, giving guidance on adapting homes, and providing information on financial support for care and equipment.

The group said the lack of investment in ongoing treatment for the 2,000 patients with muscle-wasting diseases in Northern Ireland had left the country “lagging behind the rest of the UK”. They said the result had been both

heavy emergency treatment costs for the NHS and distress and confusion for families trying to live with debilitating and often life-limiting conditions. As a group, they launched an appeal for an urgent review by health leaders into muscle-wasting disease care.

Conall McDevitt, newly elected Member of the Legislative Assembly, is backing the campaign and has vowed to make the concerns of families heard in Stormont.

Frances Ashe (29) from Newton Abbey and her daughter both have the muscle-wasting disease, Bethlem myopathy. Frances said, “There are 2,000 families in this country that have gone through the traumatic experience of being told a family member has a progressive muscle-wasting disease.

Many of the conditions lead to the need to use a wheelchair and a number cause fatal breathing and heart problems. Good ongoing care such as specialist physiotherapy, hydrotherapy and access to ventilation equipment can make a huge difference to quality – and length – of life for people.

It keeps them active and out of hospital.

We have seen some positive improvements in care in recent years, but many families are still Martin puts Freddie on the spot

Sue Barker and Sir Alex Ferguson share a joke at the Sports Quiz

Great sports Our President, Sue Barker MBE, gathered sports celebrities and supporters of the Muscular Dystrophy Campaign together in the Long Room at Lords for the inaugural Muscular Dystrophy Campaign Sports Quiz and Dinner in March.

The night was fantastic success with over £70,000 raised towards our work supporting people with muscle-wasting diseases.

Guests at each table were joined by a sports celebrity, who helped the teams with those tricky quiz questions. Sir Alex Ferguson, Andrew ”Freddie” Flintoff, Michael Vaughan, Sajid Mahmood, Kelly Sotherton, Gail Emms, Steve Williams, Giles Long, Jason Leonard, Craig Chalmers, Neil Ruddock and John Virgo brought a superstar dimension to the evening, which was rounded off with a fabulous auction led by the entertaining guest auctioneer, Martin Bayfield.

Thank you to everyone involved, especially our supporters and our hard working committee who donated their time, to make the night such a success. See you next year!

18 TargetMD

For support call 0800 652 6352

...driving mobility forward

30th June,1st & 2nd July 2011 East of England Showground, Peterborough The UK’s original hands-on event, showcasing mobility innovation for over 25 years

Open 10am daily Free admission & parking

Be inspired - new ideas for YOUR independent lifestyle Feel the experience - test drive vehicles, wheelchairs, powerchairs and scooters, plus a wealth of ideas for home, leisure and much more just not getting the advice, support, services and information they need to manage these conditions. We need the NHS to take a closer look at Northern Ireland’s muscle-wasting disease care and we are going to work together to make sure that this happens.”

The muscle group said more specialist care advisors for muscle-wasting disease were needed. They added that the single post in the whole of Northern Ireland, which up until April had been subsidised by charitable donations, was just not adequate.

Gerry McCollum, who lost his16-year-old son Chris to Duchenne muscular dystrophy, said the care advisor was “the single most important person there is” to families living with muscle-wasting disease.

“When we first received the news that our son had Duchenne muscular dystrophy, the care advisor was on the phone within a matter of hours to help us. From the first minute we spoke to her we felt we weren’t alone. She was there all the way through to help us, making sure Chris had regular access to physiotherapy and putting us in touch with specialists who fully understood Chris’s condition. Her emotional support was vital. It’s particularly important for children and young people with a muscle-wasting disease to know that there is someone fighting their corner who they can turn to when things get really difficult.”

According to Nic Bungay, Director of Care, Support and Campaigns at the Muscular Dystrophy Campaign, if the NHS in Northern Ireland were to invest a little in the short term, they could save a great deal in the long run.

“Emergency hospital treatment is costly to the health service and causes extreme distress to patients and their families. It is so often avoidable when people are receiving the advice and day-to-day care that they need to keep in the best possible health. We will be backing Northern Irish patients every step of the way as they push this campaign forward,” Nic said.

Meet the experts - advice and information to answer your questions Join in - sports, cycling, demonstrations and activities for all the family

To register for your FREE tickets visit www.mobilityroadshow.co.uk or call 0845 241 0390 Survey results on Target Thank you to everyone who participated in our recent survey for Target MD. Your responses – of which we had over 300 – will help us to shape a new-look magazine.

Most of you were happy with the name of the magazine, Target MD, so we are not going to change that. However, as from the Summer 2011 edition, we will bring you a new-look magazine with a slightly different approach to the articles we include.

Most of you – 95.6 percent – find the current content of the magazine relevant, so the type of articles we write won’t change.

There was an overwhelming call for more stories of personal experience, as well as practical tips and advice and news of research and breakthroughs.

We value your opinion, and thank you for the interest you take in this important publication. We want Target MD to be the best magazine it can be, and we want to continue bringing you the news and information that you want to read.

More parliamentary muscle The Muscular Dystrophy Campaign has increased the number of parliamentary supporters in Northern Ireland, Scotland and Wales.

With the help of our supporters, over 50

candidates elected on 5 May from across all political parties have pledged to join the fight against muscle disease by signing up to the charity’s ‘Manifesto for Muscle’.

Newly-elected Assembly Members and Parliamentarians have pledged to join crossparty parliamentary groups on muscular dystrophy and lend their weight to our campaign for better access to specialist neuromuscular care in Northern Ireland, Scotland and Wales.

Parliamentary and Campaigns Officer Jonathan Kingsley said a new All Party Group for muscular dystrophy in the Northern Ireland Assembly would be launched this year, with the support of the Northern Ireland Muscle Group. Following the success in securing NHS funding for the Northern Ireland care advisor post, improvements in other areas were still urgently required.

“Cross Party Group activity will soon resume in the Scottish Parliament, where we will be pressing Deputy First Minister, Nicola Sturgeon MSP, to commit to the promises she made when addressing last year’s Muscular Dystrophy Campaign’s Scottish conference.

“In the Welsh Assembly, we will be pressing the new Government to ensure that the needs of people with muscle disease are at the top of the political agenda,” said Jonathan.

For more information on parliamentary activity or our ‘Manifesto for Muscle’, please

get in touch on 020 7803 4839 or email campaigns@muscular-dystrophy.org

Help us improve your hospital care Thanks to all the campaigning work of our supporters, there are now more neuromuscular care advisors in place than ever before, offering much-needed support and advice to patients and their families.

However, there is still much more work to do. And to do this, we really need your help.

In order to fight for further investment in specialist neuromuscular services, we need to gather evidence regarding the care that you or someone close to you receives in hospital.

There are only a few weeks left to fill in our Hospital Survey, which is designed to assess your experiences of the standard of care on offer in your local hospital.

By gathering your stories and experiences, we will press all hospitals to improve the care on offer to neuromuscular patients. We hope to publish the results of this survey in the summer.

It takes just five minutes to fill in our Hospital Survey, so please go to www.muscular-dystrophy.org/hospitalsurvey to do so by 20 June. If you would prefer a hard copy of the survey, do get in touch on 020 7803 2853 or email j.taylor@muscular-dystrophy.org

Fundraising

Fundraising

Shop around

Our conferences provide practical information and support

Volunteers in Haselmere, Aberystwyth and South Woodham Ferrers are working tirelessly to run three charity shops for the Muscular Dystrophy Campaign.

T

Let’s work together National conference 2011 In response to feedback from our 2010 conference, research will be a key focus of ‘Working together’, our National Conference in Nottingham on 15 October this year, with an interesting programme on offer: a research surgery, a clinical research poster session and input from our valued lay panel that help assess our research grant applications. There will also be a focus on translational research, where families will get to learn how research is being taken from the bench to the bedside, and is making a real difference to individuals with muscle-wasting disease.

They will hear from some Trailblazers, our young disabled campaigners who fight social injustices experienced by young people living with muscle-wasting diseases. In addition,

20 TargetMD

some volunteer moderators for our online forum, TalkMD, will be on hand to talk about the kinds of issues that individuals and families living with muscle disease tend to discuss. Adding to the highlights of the day will be the presentation of the President’s Awards, hosted by Sue Barker MBE, and the charity’s Annual General Meeting.

Tickets cost £10 per adult, £5 per child and a family ticket costs £25. Maureen Winslade on 020 7803 4804 can tell you more, or email 2011conference@muscular-dystrophy.org

The Scottish Conference 2011 Our annual Scottish Conference has grown to become the focal point for individuals and families all across Scotland. This year, in

For support call 0800 652 6352

addition to hearing keynote speaker, Deputy First Minister and Cabinet Secretary for Health and Wellbeing, Nicola Sturgeon MSP, families can participate in care advisor surgeries and research workshops. They will also have the opportunity to hear how they can participate in wheelchair sports.

Put Glasgow and the date of 1 October in your diary and watch our website, and your mailbox, for further information. Also start giving some thought to possible nominations for the Presidents Awards for fundraising, campaigning, caring and volunteering, which well-known Scottish actress and star of River City, Eileen McCallum, will present.

The Scottish Conference is free but delegates are required to pre-book.

Maureen Winslade on 020 7803 4804 can tell you more, or email 2011conference@muscular-dystrophy.org

he three shops raise funds for the charity and not only provide a source of income for the charity, but raise awareness and act as community focal points.

The shops were set up over ten years ago by branches and volunteers who saw them as a great way of fundraising and promoting the charity in their local community. The shops sell everything from books, clothing, shoes, bric-abrac, DVDs and furniture in each of the shops.

The success and longevity of the shops is testament to the dedication of the many volunteers who have helped out over the years. Audrey Hatcher, who has been the volunteer shop manager at the South Woodham Ferrers shop near Chelmsford for fifteen years said, “Many of the shop volunteers have been helping out here for

over ten years. Our shop has become more than just a charity shop; it’s a real community.”

Each shop has its own unique charm and character, and the Muscular Dystrophy Campaign values the hard work of the volunteers in running the shops.

Laura Watts, Volunteer Fundraising Manager for London, recently visited the South Woodham Ferrers shop and said, “It’s a real Aladdin’s cave! The shop is full to the brim with books, clothes, bric-a-brac and more. As soon as something hits the shelves it’s snapped up by one of the many passers-by.”

Laura added that the shop had a great year in 2010-2011, raising £31,000 for the charity.

The Aberystwyth shop, run by Ann Hughes and her team of volunteers, raised £9,000 last year and suffered a major setback when the shop was flooded. Despite this the shop remained open throughout due to the hard work and determination of the volunteers.

Sarah Jenner, Volunteer Fundraising Manager for the South East said, “The Haselmere shop is run by the Waverley Branch

who are a group of really hardworking, friendly volunteers and are all dedicated to raising as much as possible.”

Last year the Haselmere shop raised approximately £9,000 for the charity.

If you live locally to one of the Muscular Dystrophy Campaign charity shops, why not take along any unwanted goods and meet our fantastic volunteers?

And, if you have some time to spare, the shops would value your support.

South Woodham Ferrers Shop, 5 Warwick Parade, Chelmsford Haselmere Shop, The Stable Market, Haselmere Aberystwyth Shop, Bath Street, Aberystwyth Call our information line to find out more about our shops.

Libby Smalley is all smiles

A silver lining

A

ten-year-old girl surprised founder of the Joseph Patrick Trust, Alexander Patrick, with a gift to mark the 25th anniversary of his grantgiving fund, but found it was a double surprise when she received a brand new powered wheelchair in return.

Libby Smalley, who has spinal muscular atrophy, was caught off guard as she presented Alexander Patrick with a collage of thank you letters from some of the thousands of children and adults he has helped over the years. Alexander, 67, surprised Libby with her second, upgraded electric chair from the fund.

She received the first when she was just four and a half years old.

The Castle Vale youngster said, “I love my new wheelchair. It’s going to be great to help me get around quicker and will be

much more comfortable. Thank you Alexander and the Joseph Patrick Trust.”

Alexander, a businessman from Kings Norton, started the Muscular Dystrophy Campaign’s welfare trust in 1986. Since its formation, it has given over £6million to fund over 6,000 pieces of life-changing equipment.

Upon receiving his gift, Alexander said, “It’s been a real pleasure to see people like Libby receive much-needed equipment to live more independent lives. I can’t believe it’s been a quarter of a century since the trust was started by myself in memory of my father, Joseph Patrick, a founder of the Muscular Dystrophy Campaign. I can only hope that over the next 25 years we manage to help even more people with muscle disease.”

The trust provides vital financial support towards specialist equipment to help promote

mobility and independence for people with muscular dystrophy or a related muscle-wasting disease. The grants cover equipment that health and social services do not provide, such as wheelchairs that enable children to rise up to reach the same height as their peers and can easily negotiate rough terrain, allowing them to play on grass with their friends.

To support the Joseph Patrick Trust, or if you or a family member needs a grant for specialist equipment such as a powered wheelchair, visit www.muscular-dystrophy.org or call 020 7803 4800.

www.muscular-dystrophy.org

TargetMD 21

Fundraising

The height of commitment Stay together whatever your mobility needs... ...with a handcrafted, made-to-measure adjustable bed from Theraposture. Whether you prefer a single, double or combination, Theraposture offers an unlimited range that encompasses a variety of adjustable actions, each with a beautiful traditional or contemporary surround.

Blending effortlessly into any domestic home, your Theraposture bed will help you remain independent at home with reduced care costs whilst delivering the highest levels of comfort, style and reliability.

Tel: 0800 834654 (freephone) YOUR INDEPENDENCE, OUR COMMITMENT

TV personality Christine Hamilton is ges taking on one of the biggest challen of her life in June, facing altitude ng sickness and gruelling climbs, trekki e at 2,400 miles above sea level to rais money for the Muscular Dystrophy Campaign.

group of fundraisers Christine will be joining a 20-strong onal experience of including many people who have pers to complete Peru’s t muscle-wasting diseases in their ques Inca Trail. re a week of constant Leaving on 18 June, Christine will endu ing a day. The walk s trekking with a minimum of eight hour wilderness in the in ping group will spend the evenings cam . forts com ture sub-zero temperatures with no crea TV the , enge Speaking about the forthcoming chall ed about the trek and was broadcaster said she was really excit take on the challenge fully. training seriously hard to be able to g to Peru, but I’ve been “It might sound like a holiday, goin lot of hard work. I really a told to expect altitude sickness and help me raise as much hope that people get behind me and money as possible.”

To support Christine visit ilton www.justgiving.com/Christine-Ham

22 TargetMD

For support call 0800 652 6352

Television presente r, Sian Lloyd, is join ing Christine and the g roup on the Peru tr ek.

We asked her a few questions about th e forthcoming South American trip:

What inspired yo u to get involved with the Muscular Dystrophy Campa ign and join our P eru trek?

A friend of mine wh o works for Channe l 4 has a son with muscular dystrop hy, so I’ve seen fir sth an d what he’s gone through. As a result , I wanted to help in any way I could .

What are you mos t looking forward to?

I’m most looking fo rward to the com pa nionship in the hil we’re all in it toge ls; ther! I’m also look fo rw ard to the amazing scenery we’ll expe rience.

What do you thin k will be the bigg est challenge?

I know the biggest challenge for me will be sleeping un canvas. I am not th der e world’s most en thusiastic camper camp behaviour co (th ough mes naturally to m e!) and I know fro experience that th m e tents are tiny. I’m also terrible at ge up in the mornings tting .

What are you takin g with you that yo u can’t live withou I have to have a su t? pply of Prêt a Mang er oat bars with me. myself that they’re I kid healthy, but in tru th, they’re full of bu and sugar and prob tter ably contain thou sands of calories.

I’ll be walking som At least e of them off!

Like the other tre kkers you’ll be sh aring a tent - do have any bad ha you bits that might an no y your tent budd I’ve shared a tent wi y? th my friend, Nove llo, before. We climb Kilimanjaro last ye ed ar. And to be hone st, if we could cope horrendous dust an with the d cold of Kili, we ca n cope with anything …

Email: info@theraposture.co.uk www.theraposture.co.uk

Theraposture Limited. Kingdom Avenue, Northacre Industrial Park Westbury, Wiltshire. BA13 4WE

0153THERAdoublecombadDFT1.indd 1

05/05/2011 13:24

FREEDOM AND INDEPENDENCE

With free peace of mind…

Choice of 100 + vehicles

The UK’s most affordable ‘Drive From Wheelchair’ and ‘Passenger Up Front’ vehicle solution. With the ‘Switch’ you can drive or be driven, the choice is yours. Sirus provide a 3 year warranty, giving you 24 hour assistance and maintenance free running.

Now for just £4995 Advance Payment through Motability. £24,995 private purchase. Call us now for a no obligation home demonstration.

Sirus Automotive Ltd Call 0121 505 7777 Visit www.sirusautomotive.com

Fundraising

Fundraising

Marathon for muscles

A present for the future A gift left in your Will might not be something you spend too much time thinking about, but a gift left to the Muscular Dystrophy Campaign in this way, can make a huge difference to the work that we do.

No matter how big or small the gift, the Muscular Dystrophy Campaign relies almost entirely on voluntary donations and legacies to fund our work. In order to plan for the future funding of our vital research and care programmes, we need to be sure that those funds will be available to us when most needed. Legacy income, therefore, is hugely important to us in planning for the future.

One in four of our vital projects is possible purely because of money left to us through gifts left in Wills. We have received such gifts that range in value from £100 up to over half a million pounds.

One of our supporters in Berkshire kindly left us £500, which we received last year. This amount of money allows our nationwide network of young campaigners, the Trailblazers, to get together in their local area to discuss issues such as how best to get jobs, socialise and live independently.

Another supporter from Derbyshire left £5,000 in his Will to the Muscular Dystrophy Campaign, after he passed away in 2008. This gift ensures that the voice of people living with muscle disease is heard loud and clear in each of the four Parliaments across the UK, through parliamentary events, lobbies and cross party groups.

So, as you can see, a gift of any size left in your Will would be put to good use to continue the vital work of the Muscular Dystrophy Campaign. Including a gift in your Will sends out a strong and personal message of hope for the future.

If the time is right for you and you’d like to find out more about how to leave a gift in your Will, please call our legacy officer on 020 7803 4834 or email s.west@muscular-dystrophy.org

I

n glorious April sunshine, 105 runners completed the gruelling 26 miles of the London Marathon for the Muscular Dystrophy Campaign and, apart from suffering aching muscles, continued well on their way to raising an amazing £240,000 for us.

Experienced athletes and first-time fun runners joined forces to run the nation’s favourite road race, the world’s biggest fundraising event and our single biggest fundraiser of the year. Each one had their own personal story to tell of why they wanted to run for the charity, and we’d like to thank them for their support and dedication to the work that we do.

We would also like to thank all the loud and cheerful volunteers who not only donned orange T-shirts in the name of the Muscular Dystrophy Campaign, but they took to the streets along the route shouting words of encouragement to team members who sped past. Our biggest cheering point was at mile 13 at the Bridge House Pub, which kindly opened early to offer parched supporters much-needed refreshment. Orange banners, orange balloons and Muscular Dystrophy Campaign supporters adorned the road for nearly 40 metres.

Thanks also to those who helped out at our post-race reception, including the highly skilled volunteers from Sports Therapy UK and the friendly staff from The Corinthia Hotel. We were glad to be able to reward our

24 TargetMD

brave runners with a massage and a hot meal and sandwiches at the end of their running journey through London.

Thank you all for doing us proud.

If you would like to run in our mighty marathon team in 2012 then please see our

2012 Virgin London Marathon page on our website for more information, email the Events Team at events@muscular-dystrophy.org or call 020 7803 4828.

Honour someone special and help us too The Muscular Dystrophy Campaign has partnered with MuchLoved.com to offer you the opportunity to start your own Tribute Fund. This living, ongoing celebration of the life of someone special is easy to set up and requires little administration.

Salma Akram set up a Muscular Dystrophy Campaign Tribute Fund in memory of her daughter Zainab: “This is such a great way for family and friends to pay tribute to their loved ones. It means so much to me that my family, friends and people who were involved in Zainab’s life can go to the site, leave their messages and thoughts there, and remember Zainab for the bright and bubbly character she was.”

A Tribute Fund page is yours to create, share and manage, in the name of a special person, who may be alive or may have passed away. Together with your friends and family, you can celebrate the person’s life and current achievements and keep special memories alive.

Share your thoughts, memories and stories, or put up photos and videos on the page, and shape it to suit your needs. It’s really easy to put together, and with privacy settings that you can control, it also allows friends and family all over the world to make donations directly in tribute to that special person.

If you hold a fundraising event in memory of your loved one, or celebrate special days such as birthdays and family occasions, you can arrange to have donations made online directly to your Tribute Fund page. All gifts are acknowledged, and you will be kept up to date with who has donated what.

If you’d like to create a Muscular Dystrophy Campaign Tribute Fund to honour someone special and help us too, call our fundraising hotline on 0845 872 9058 or visit www.muscular-dystrophy.org/tributefunds to find out more.

For support call 0800 652 6352

Inspiring events TO HONOUR BERTIE

A group of dedicated young people, calling themselves “Bertie 23”, have dedicated a year to run a series of 23 events to raise funds for the Muscular Dystrophy Campaign in celebration of the life of their friend, Bertie Brookman.

Bertie passed away in April last year, aged 23. He had muscular dystrophy (type 21 limb girdle).

The most recent event completed was the Lands End to John O’Groats cycling challenge.

Defying headwinds, potholes, rain storms, sub-zero temperatures and their team mates singing Meatloaf, the group enjoyed support all along the way from people cheering them on at the side of the road to messages of support on Facebook and on their website.

The group are doing this to honour the life of Bertie, “one of the nicest individuals we have ever known”.

If you would like to support Bertie 23, you can find full details of all the events, including cycling, swimming, rowing, walking, climbing, burger-eating, a gladiatorial battle and a charity ball at www.bertie23.co.uk

Pounding Oxford’s pavements for 30 years Local businessman and founder of one of Oxford’s finest traditions, the Town and Gown 10k, Mike Cleaver, launched the 30th anniversary race this year.

Inspired by his son Daniel, who had congenital muscular dystrophy, Mike is an Oxfordshire shop-owner who started a running race in Blenheim in 1982. The run eventually moved to Oxford city centre and was renamed the Town and Gown 10k. Quickly becoming a permanent and popular fixture in Oxford’s calendar, the event has raised an amazing £1million to date to find treatments and cures for muscle-wasting conditions.

Speaking about the first-ever race Mike said, “The idea of organising a fun run to raise funds for the Muscular Dystrophy Campaign came from the enormous success of the first London Marathon held in 1981. I saw there was great potential in raising large sums of money from mass running events and wanted to do anything possible to help children like my son Daniel.”

The first race was a triumph, raising nearly £10,000 and over the past 30 years, thousands of participants have run nearly 2,000 miles of the Town and Gown course. The race has become the most successful sports event in the Muscular Dystrophy Campaign’s 50 year history.

Talking about this year’s event, which took place on Sunday 15 May Muscular Dystrophy Campaign’s event co-ordinator Alun Mainwaring said, “It’s amazing that the people of Oxford have supported our 10k race for so many years. Last year’s event raised the most funds ever, and after this year’s event, we are well on our way to our second million pounds. Thank you to all the runners who support us every year, and all the new runners who joined the race this year.”

www.muscular-dystrophy.org

TargetMD 25

Fundraising

Fundraising

My life through your eyes

LONDON AND THE EAST OF ENGLAND Contact Laura Watts

Volunteer Fundraising Manager 020 7803 4821 • l.watts@muscular-dystrophy.org UPCOMING EVENTS 18 July London Muscle Group Meeting 25 June Charity film screening at the Roxy Cinema in Borough, organised by the North London Fundraising Group 11 September Adidas 5km women’s challenge, Hyde Park

T

railblazer Jon Hastie, 30, who has Duchenne muscular dystrophy, is fulfilling a lifelong dream by telling his story through film in A Life Worth Living.

On his 30th birthday celebrations, Jon had what he describes as a “crazy idea”: to make a film about “some remarkable Duchenners who are all living productive, creative and fulfilling lives”.

“I want to inspire a younger Duchenne generation and their parents, by showing them just what can be achieved even under this most crippling of disabilities,” Jon said.

The documentary, due to be completed in September, will follow Jon on a journey around the UK and Europe, meeting six other extraordinary young men with the condition,

Contact me for further information about any of these events.

THANK YOU! Jon (right) and Jan, off to meet some more extraordinary young men

documenting their lives and how they “push the limits” of their capabilities. Funding the film himself, with some support from Trailblazers, Jon is hoping for donations to cover costs, including travel, and is appealing for support.

“I want to tell the world, especially the Duchenne world, not to give up hope and live life to the full. I had mentors and shining

personalities who inspired me when I was younger, and now I really want to encourage others by leaving a supportive, heartfelt message behind: Never give in. Never give up.

It’s time that story was told.”

Read about progress of Jon’s film at his blog, where you can also help fund the project: www.alifeworthlivingfilm.com

A rickshaw thing A 24 year old man from Shoreditch is stepping away from his copywriting desk for two weeks in September to complete a 2,600km journey across India, in a rickshaw. Why, you may well ask?

Joe Talboys, and his friends Laurens and Martin (who have yet to settle on a team name – ideas, anyone?) were intrigued by the challenge and the danger involved in climbing aboard a brightly-coloured motorbike with two seats on the back and travelling for 12 days across uncertain terrain, through potential monsoon rains and with no definite route in mind.

Starting at Shiilong, the capital of the state of Meghalaya, and ending at Jaisalmer in the state of Rajasthan, the three men expect to encounter wet, soggy mud, dirt tracks, desert and a variety of weather conditions. The biggest challenge they expect, however, is the traffic. Not to mention the small matter of learning to drive the rickshaw itself.

26 TargetMD

“We’re not familiar with them at all.

I’ve sat in one, once, when it was stationary, and that’s the extent of our joint knowledge,” said Joe. “We hope to become familiar with it as we get underway, but we certainly want to get some practice in beforehand.

If anyone in London has one we can have a go on, that would be great,” said Joe. In addition to learning what Joe describes as “basic, lawnmower-style mechanics”, they hope to hone their navigation skills enough not to get so lost that they don’t make it to the finish in time. Two of the three are now also newly-qualified first aiders.

Apart from their families’ initial concerns about the trio’s safety, they have received a lot of support, particularly as Joe has chosen to raise money, through this adventure, for the Muscular Dystrophy Campaign. A close friend’s brother has muscular dystrophy, so Joe

For support call 0800 652 6352

was keen to support the charity and, in particular, its world-class research.

If you’d like to support Joe and his team as they set off in their rickshaw to raise funds for the Muscular Dystrophy Campaign, please visit www.justgiving.com/Joe-Talboys Laurens, Martin and Joe, getting ready to rickshaw

Katie Bizzey for organising two fundraising walks in March raising over £1,000. Twenty two people walked the one and a half mile walk in Gromford and 28 people took part in the nine mile walk the following day enjoying Katie’s homemade soup and chilli con carne which kept them all going.

Ana Craig–McQuaide who raised over £1,700 from her skydive!

The Chelmsford Branch for their recent donation of £1,100 that was received at the

Branch AGM which was attended by the local mayor.

The Brentwood Branch for their donation of £1,300.

The Colchester Branch for their donation of £440.

The Rochford and District branch for their donation of £1,750.

All those who ran for us in the Superhero Run and Bupa London 10k in May! Vasileios Stathakopoulos who has raised over £1,200 by running the Paris Marathon for us!

The Northampton and District Branch for their donation of £400.

The South East London Branch for their donation of £500.

Wendy Burrows who ran the Berlin half marathon on 3 April.

GOOD LUCK! Peter Jones who will be cycling from London to Paris in June and has so far raised over £1,000. He’s been doing some great fundraising at work supported by his

Katie Bizzey’s walking team

company Medico Tech. You can support Peter by visiting his Just Giving page at www.justgiving.com/PeteJones1984 Year 12 pupils at Dame Alice Owen’s School who are doing a sky dive for the Muscular Dystrophy Campaign having kicked off their fundraising over Easter.

Laura Bizzey who took part in the Just Walk on 7 May, you can support her at www.justgiving.com/laurabizzeyswalk

Midlands and Anglia Contact Charlotte Allen

Volunteer Fundraising Manager 0121 779 4488 • c.allen@muscular-dystrophy.org MEET CHARLOTTE Charlotte Allen has recently joined the Muscular Dystrophy Campaign as the new Volunteer Fundraising Manager for the Midlands and Anglia region. Charlotte has worked in the charity sector for almost five years and has previously worked as an Events Administrator and more recently Fundraising and Volunteer Co-ordinator. She’s really excited about working here to help continue our fight against muscle disease.

Memorial Park and help raise vital funds for the Muscular Dystrophy Campaign.

The whole family can join in, and you can run, jog or walk your way around the flat course.

You can register now by visiting www.bigfunrun.com/?enter Contact me for further information about any of these events.

UPCOMING EVENTS

Run for fun for us

The Big Fun Run The Big Fun Run is one of a series of 5k runs taking place exclusively in 22 of the UK’s most scenic green spaces.

Come along and join us at Coventry

www.muscular-dystrophy.org

TargetMD 27

Fundraising

Fundraising A peak experience for Jody and his dad

SCOTLAND

Contact Lorna Johnston

Volunteer Fundraising Manager 07801 047 974/0141 558 2662 • l.johnston@muscular-dystrophy.org UPCOMING EVENTS 13 August Collection at Glasgow Queen Street Station Can you spare an hour or two to help at our bucket collection?

21 August Titan Crane Abseil Abseil off a Glasgow landmark as part of our Muscular Dystrophy Campaign team and help raise vital funds.

4 September Great Scottish Run, Glasgow Join our team of runners for the annual 10k, half-marathon and junior fun run through the streets of Glasgow.

11 September Pedal for Scotland This annual cycling challenge from Glasgow to Edinburgh (51 miles) is the perfect chance to get on your bike to support the charity.

11 September Zipslide at Xscape Are you up for the challenge of taking part in our first zipslide? Launching from the side of the Xscape building at Braehead, you will enjoy an exhilarating 250m zipslide down to the car park.

2 October Forth Rail Bridge Abseil

Abseil 168m off the Forth Rail Bridge - not one for the faint-hearted!

Contact me for further information about any of these events.

THANK YOU! Jody Lewis and his dad conquered Mount Kilimanjaro, despite Jody telling us it was by far the toughest thing he had ever done. They are pictured here at the summit. Well done and thank you for the additional funds!

Kenny McIntyre, Iain Campbell and friends walked the West Highland Way in April.

Well done to all of them for completing the 95 mile challenge and raising over £1,000.

That Glorious Noise Congratulations to the volunteer committee of Eilean Stewart, Alison Couston, Clare Harker and Wendy Niblock who organised the rescheduled (and renamed) Spirit of Christmas concert at Paisley Abbey.

Featuring a host of talented performers, it was described as the best concert yet and raised over £1,600.

All our runners... who took part in the Women’s 10k and the Edinburgh Marathon in May. We’re so grateful for your support and would like to congratulate all of you on your fantastic achievements.

VOLUNTEERS AND SUPPORTERS Burns Supper volunteers As part of our Come Dine with Us initiative, we’re keen to get some Burns Suppers taking place in 2012 in aid of the charity. We’d like to get some groups together to help us plan local events - can you spare a few hours to help us?

Become a team member Our ambition for 2011 is to build up a team of volunteers to help at special events. This could be anything from helping at one of our bucket collections, cheering on our event participants or manning a stall at an event. We’ll regularly send out volunteering opportunities and you can decide which ones suit you. We need people from all over Scotland to become a team member and we’d love to hear from you.

NORTHERN IRELAND & ISLE OF MAN Contact Glenn Oakes

Volunteer Fundraising Manager 028 9075 1497 • glenno@muscular-dystrophy.org UPCOMING EVENTS The Ricky Beattie Charity Shield will be holding its five-a-side football tournament in Banbridge Leisure Centre on 17 June, to raise funds for the Muscular Dystrophy Campaign, and is currently recruiting teams to participate.

Muscleteers will be holding a Halloween Party at the Holiday Inn in Belafst’s Ormeau Avenue on 28 October – tickets available now.

Street collections are held every Friday, if you would like to help when we come to your area, we would be delighted to have you on board.

Want to abseil from the top of the Europa Hotel, do a solo or tandem skydive from 3,000 feet or swim with ten foot sharks to raise funds to fight muscle disease?

Dates available throughout the year.

28 TargetMD

Alternatively if you or someone you know would like to zipline across the Lagan on 27 August or do an Adrenaline Drop – free falling from 100 feet – on 28 August we would be happy to provide information.

New fundraising committees for Fermanagh and Ballymena/Ballymoney area are to be formed. We would be delighted if you would like further information on these or your local committee.

For the ultimate challenges we are offering supporters the opportunity to dog-sled in the Arctic Circle, climb Mount Kilimanjaro or cycle from London to Paris.

‘Facial Hair Dare’ – participants didn’t shave for a month.

Thanks also to the Motorised Caravan Club Northern Ireland who raised £610 via a raffle.

Shauna McDonald and friends raised an outstanding £4,553 by holding a sponsored

For support call 0800 652 6352

Contact Charles Horton

Volunteer Fundraising Manager 01244 536 551 • charlesh@muscular-dystrophy.org Wanted Volunteers are needed to help place collecting boxes in local businesses. This is a vital way of raising funds for the charity so if you have a little bit of spare time available and would like to volunteer to help with placing boxes in your local area please do get in touch as we would love to hear from you.

New fundraising groups If you live in the Liverpool or Morecambe areas and would like to get involved in joining a fundraising group, please contact the regional office on 01244 536551 or email me for details of future meetings planned and how you can help.

Calling all golfers If you fancy trying our golf challenge, the Four Course Classic takes place on Friday 24 June, please contact Charles at the regional office. This exciting event sees teams of four taking on four courses in their local area on one day.

Thanks A huge thank you to everyone involved with the North Manchester fundraising group who managed to raise a magnificent £9,000 last year and are already well on their way to beating that amount in

Free fall and raise funds for us

2011. Thanks also to the landlord of the Spring Inn in Rochdale for organising a fundraising race night last month.

Congratulations and thank you to Polly and Eryl Edwards who raised over £3,000 in February by taking part in a nine-day cycle ride in India. If you would like to know more about our overseas challenges, please do get in touch with the regional office to see what is available.

Thanks also to Liz Rigg, Nicci Geraghty and Tilly Dowling who have all helped out as volunteer event co-ordinators in the past few months helping the charity to increase funds by recruiting and managing more event participants. If you would like to get involved as an event co-ordinator please contact me at the regional office.

UPCOMING EVENTS Sunday 10 July 2011 – Manchester to Blackpool Cycle ride. A 60 mile leisurely ride along country lanes, starting from Manchester United’s Old Trafford ground, this is an ideal event for all the family. Contact the regional office now for an entry form.

17 July – Zipslide event at Imperial War Museum in Manchester. This event offers a

Extremely good fundraising opportuni ty

thrilling 250m zipslide from the air shard of this iconic building at a height of 30m, across the Manchester Ship Canal and landing in front of the Lowry Centre. We have a limited number of guaranteed places available. Registration is just £20 and participants are asked to raise a minimum of £125 in sponsorship. To register for a place to fundraise for the Muscular Dystrophy Campaign please contact Nicola Geraghty on 07828 139652 or email her at N.Geraghty@muscular-dystrophy.org

NORTH EAST Contact Sara Benson

Volunteer Fundraising Manager 07825 845 895 • s.benson@muscular-dystrophy.org UPCOMING EVENTS

Contact me for further information about any of these events.

THANK YOU!

NORTH WEST ENGLAND AND NORTH WALES

It’s a life cycle Former footballer, Steve Moran, is going to celebrate his 50th birthday by challenging himself to a Premiership Pedalathon and raising awareness and funds for the Muscular Dystrophy Campaign in the process.

Steve’s marathon will involve cycling to 26 stadiums, collecting 26 signed shirts to auction at a gala dinner, and covering about 1,400 miles in 21 days.

If you think he’s crazy to take on such a challenge, consider what is motivating him.

Steve’s step-son Connor, 11, has Duchenne muscular dystrophy and is, as Steve says,

“the reason, the inspiration and the star”.

If you wish to support Steve and help him reach his goal, contact me at the regional office.

Challenging firsts Geoff Major has set himself the challenge of a lifetime to complete an eight-day trek to the North Pole in April next year. Geoff will be pulling his own sled of supplies in this gruelling challenge and in the process, hopes to raise £10,000 for the Muscular Dystrophy Campaign.

“Apart from the fact that I can’t currently ski, I am having to deal with my disappointment that there will be no hotel, therefore no

hot water and no bar fridge with tubs of Maltesers in it,” said Geoff.

To prepare for the event, Geoff has set himself a rigorous training programme for the next 12 months: tyre-dragging, hill walking, cardio-exercising, smart-eating, and, of course, learning how to ski.

If you want to donate to Muscular Dystrophy Campaign please visit Geoff’s page at: www.virginmoneygiving.com/ GeoffMajorNational

www.muscular-dystrophy.org

TargetMD 29

Use your muscles to run for children and adults affected by muscle disease Join our team in the Great North Run in Newcastle on Sunday 18 September 2011, and help make a lasting difference to families living with muscle disease.

“I was made to feel welcome and appreciated throughout training, and afterwards, a fantastic team. Well done!”

Katy White

Fundraising

South West and south wales Contact Anna Roberts

Volunteer Fundraising Manager 01242 221 251 • a.roberts@muscular-dystrophy.org Off to a flying start The Bristol and Bath fundraising team raised a fantastic £6,875 at their first fundraising event – an Asian banquet and entertainment evening. Guests enjoyed 12 different dishes and were entertained by traditional dancers. The team were delighted to have their local MP, Kerry McCarthy and the Muscular Dystrophy Campaign’s CEO, Robert Meadowcroft join them for the evening. A big thank you to everyone who came along and helped to make it such a successful evening for this new fundraising team.

“Thank you for the fantastic experience and support you gave me. It is certainly something I will remember.”

Sarah Hassal Traditional dancers at the Asian banquet

Registration fee: £45 Fundraising target: £300

Hog roast cooks up the funds While settling into her new post as neuromuscular care advisor for Cardiff and Vale, Rachel Salmon has found time to organise a successful Come Dine with Us event for us.

The event raised £550 and guests enjoyed a delicious hog roast. Rachel said, “There was a brilliant turnout and it was a great way of raising awareness and funds.”

Muscle power raises vital funds in Three Marathons in Three Days challenge Cheltenham supporter, Ross Sylvester, took part in a massive challenge for the Muscular Dystrophy Campaign by recently taking part in three marathons in three days along the Dorset coastline. Ross only started training in January but was committed to getting fit and raising as much money as possible for the charity.

Ross has already raised over £1,700 in sponsorship and explained he was continuously motivated to complete the challenge. “The muscle fatigue I experienced after day three of the race was absolutely nothing compared to the pain which people with muscular dystrophy experience every day.”

How about a half in Bristol?

Entries are now open for the Bristol Half Marathon on 11 September. We would love

SOUTH EAST

All of our runners receive full support in training and fundraising, and will be rewarded at the end of the race with food and a massage in our marquee in the charity village.

Contact us today to secure your place events@muscular-dystrophy.org 020 7803 4829

Contact Sarah Jenner

Volunteer Fundraising Manager 01923 283141 • s.jenner@muscular-dystrophy.org MEET SARAH Sarah Jenner has joined us as a new member of the team, taking on the role of Volunteer Fundraising Manager for the South East.

Previously a volunteer herself, Sarah brings her experience of fundraising to this role and is really looking forward to working with all the volunteers and supporters in her area.

Southsea, Portsmouth, which is great for both novices and more experienced runners. Why not take on the challenge yourself and help raise funds for the Muscular Dystrophy Campaign?

A charity football match between a staff team from the Mercure hotel in Southampton and the Solent Saints on 3 July.

UPCOMING EVENTS

GOOD LUCK!

Sunday 30 October Great South Run Entry for the Bupa Great South Run is now open – a fast and flat 10 mile course around

Natalie Dickinson and team, for their 24hr Three Peak Challenge in June.

Eilish Whitear for her Three Peak Challenge in June.

Ross Sylvester, the three-marathon man

to get 50 runners in this race, if you fancy getting your trainers on and signing up.

Challenge yourself Cross the Great Wall of China? Climb Kilimanjaro? Why not sign up to one of the overseas challenges we have on offer.

Skydive into summer Now that summer is officially on its way, why not sign up to skydive for the Muscular Dystrophy Campaign? If you’d like to jump for free and raise vital funds for us, you need to raise £395. There are jumps taking place at sites across the region every weekend and we’ll give you a fundraising pack jam-packed with ideas to help you reach your target.

Contact me for further information about any of these events.

Trevor Ferris, ready for the Great South Run

Les James and friends

Dayana Sheehy and Helen Piper for their Zest 10k Challenge of running, cycling and kayaking in June.

Contact me for further information about any of these events.

Registered Charity No. 205395 and Registered Scottish Charity No. SC039445

30 TargetMD

For support call 0800 652 6352

www.muscular-dystrophy.org

TargetMD 31

Inspiration

Diary dates

It’s all in the numbers!

Book your place today!

M

Here to help

ichael and Donna Thirkettle will be leading a team of 31 runners in the 31st Great North Run in September. They will run under the name ‘Team Jed’ in an attempt to raise £31,000 for the Muscular Dystrophy Campaign.

‘Team Jed’ has been set up in honour of Jed Thirkettle, 11, who has Ullrich congenital muscular dystrophy (UCMD), and the enthusiastic group includes Jed’s headmaster and teachers as well as his clinician from Great Ormond Street Hospital.

Jed was diagnosed with UCMD in March 2008, when he was eight years old. UCMD is a degenerative muscle-wasting disease that causes muscle weakness, tightening and contractures, leading to mobility restrictions and often respiratory problems. Jed’s condition is progressive and there is currently no treatment or cure. While constant physiotherapy can somewhat delay the onset of some of the symptoms, depending on the severity of the condition, many children become wheelchair users in their early teens, with severe mobility restrictions in early adulthood.

Despite the condition affecting his ability to run, Jed is determined to take part in the Junior Great North Run this year with his friend, Tom Petrie, who is running with him. Jed says he’s totally committed to completing the 4km course without stopping – even if it takes all day – and he expects he will finish last.

His dad, Michael, says although he tires easily and struggles to run, Jed is a determined little boy with huge strength of character; he still takes part in all school sports days and has even inspired Michael to take up skiing – a sport Jed can also take part in and really enjoys.

Jed was diagnosed at a young age with a form of myopathy, explained to Michael and his wife Donna as ‘soft muscle tone’. The symptoms included laxity in joints and poor muscle development but they were initially told he would catch up with his peers over time. He was monitored and seen annually until receiving the diagnosis of UCMD three years ago. They were referred to the Dubowitz Neuromuscular Centre at Great Ormond Street Hospital where they initially saw Professor Francesco Muntoni and later paediatric neuromuscular clinician, Dr Reghan Foley.

The Thirkettles have experienced a range of emotions since the initial diagnosis and again with the confirmation of UCMD. However they are constantly astonished at

32 TargetMD

Michael, Jed and Donna with 31-31-31 on their minds

Details of our information days, conferences and family weekends for both professionals and families affected by muscle disease. Plus, ways of getting all the information you need

Diary dates

New publications packed with information to help people with neuromuscular conditions

June

Neuromuscular Disorders in the Adult

Jed’s achievements, explaining it as ‘triumph over adversity’. Michael and Donna are extremely proud of Jed, noting that it is a stronger emotional ride but hugely rewarding watching him participate and achieve things they never thought he could, albeit with different goals and expectations..

Today they are passionate about raising money for research into Jed’s condition and this motivated the creation of ‘Team Jed’. Michael – a self-confessed running-hater - was initially encouraged to do the Great North Run in 2010

by Donna. “She was the driving force,” he said.

This was their first running event and they raised more than £12,000 for the Muscular Dystrophy Campaign. This year they have opened the invitation out and ‘Team Jed’ now boasts 31 runners.

They didn’t set out with the 31-31-31 goal in mind, but so many people were inspired

by Jed’s story and wanted to do more than sponsor them to run, so they challenged them to run with them and raise money. As it began to grow, they decided to set some targets.

“I told most of my clients, suppliers, work colleagues and friends last year that running the Great North Run was a one-off for me. I have never been a distance runner and I don’t enjoy it, so I didn’t even expect to run myself this year,” Michael said.

“At last year’s Great North Run, I ran alongside Donna, but unfortunately I had an injured knee. 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,

For support call 0800 652 6352

and came past the finish line completing the race together. What a fantastic moment that was. I will never forget it,” he said.

One of the runners for ‘Team Jed’ is Dr Reghan Foley, a clinician working with Jed. Dr Foley is on a placement from America, currently carrying out Muscular Dystrophy Campaignfunded research into congenital muscular dystrophies at the Dubowitz Neuromuscular Centre at the Great Ormond Street Hospital in London. The Thirkettles challenged and invited her to run in this event, at a recent conference.

She agreed and now joins Jed’s headmaster, sports teachers, family friends as well as parents and friends from the school, who have all signed up to join the team.

Not one to miss an opportunity, Michael would like to encourage any readers who are inspired

by Jed to give generously to support Team Jed. (go to www.justgiving.com/TeamJED).

Michael and Donna and their children, Brooklyn, 15, and Jed, 11, live in High Wycombe, Buckinghamshire.

The Muscular Dystrophy Campaign currently funds a two-year research project into the molecular pathways and therapeutic targets for Bethlem and UCMD. Both of these conditions are caused by mutations in the gene coding for the collagen VI protein.

Understanding the exact nature of mutations not only allows clinicians to give patients an exact genetic diagnosis but can also be important in the development of therapies.

Funding is required on a constant basis to drive research and in particular the potential in the not too distant future for clinical trials for a number of congenital muscular dystrophies, including Jed’s condition. .

10th June

Contact Jen Taylor on 020 7803 2853

11th June

Contact Moira Findlay or fshgroup@hotmail.com

17th June

Contact Lisa James on 020 7803 2865

18th June

Contact Margaret Bowler on 0115 987 5869

25th June

Contact Claire Kelleher on 020 7803 4805

27th June

Contact Jen Taylor on 020 7803 2853

Yorkshire and Humberside Muscle Group meeting Sheffield

A practical manual. David Hilton-Jones, Jane Freebody and Jane Stein Oxford University Press. ISBN13: 9780199580354 The term neuromuscular disorders covers a wide range of conditions varying in age of onset, severity, and speed of progression but which share many common management issues; this manual was written by a multidisciplinary author team for all those involved in the overall care and management of people with neuromuscular disorders. This handbook also smoothes the journey for patients and carers through the complex maze of management issues relating to their condition.

Extensively illustrated throughout, Neuromuscular Disorders in the Adult concentrates on the care of the adult patient – including those who may have acquired their disability during childhood, providing practical advice and support for all professionals working with people with muscular dystrophy and other neuromuscular disorders.

Features include: - summaries of the specific features and complications of the most common disorders, to give carers a better understanding of these conditions - an encouragement to a holistic approach to care which provides both physical and psychological benefits to the patient - extensive illustrations throughout to aid understanding.

FSH Support Group Summer Get Together Chesterfield East Midlands Muscle Group meeting Leicester Myotonic Dystrophy Support Group Conference Cambridge Living with MD – peer support event London South Central Muscle Group meeting Milton Keynes

July 7th July

Contact Jen Taylor on 020 7803 2853

8th July

Contact Lisa James on 020 7803 2865

10th July

Contact Melanie Spring on 023 8044 9708

11th July

Contact Jen Taylor on 020 7803 2853

West Midlands Muscle Group meeting Birmingham

I’ve got nothing to lose by trying it – weighing up claims about cures and treatments for long-term conditions

North West Muscle Group meeting Manchester

The last ten years has seen a rise in use of the internet and patient chat-rooms and forums for people with chronic diseases. These offer valuable support, but have also brought masses of advertising, surreptitious promotion and misleading stories. Today patient charities, doctors and scientists are warning people with long-term incurable conditions about the emotional and financial costs of over-hyped treatment claims that sell false hope.

Online adverts and chat-room conversations testify to the ‘incredible’ benefits of new medicines and treatments selling the empty promise of curing the incurable. But the evidence for many treatment claims is unreliable and patients’ yearning for improvement is being exploited. Whilst people must be left to make up their own minds about what treatments to use, doctors and scientists are critical of those who aggressively market – with misleading claims, optimistic testimonials and even pseudo science – to people who are desperate for some source of hope. Leaving them unsure about what to try and uncertain where to draw the line.

The guide, published by Sense About Science with the Multiple Sclerosis Society, Motor Neurone Disease Association, Alzheimer’s Society and Parkinson’s Disease Society, explains how to tell the beneficial from the bogus in the face of the miracle cure stories, new wonder-drugs and breakthrough therapies that are increasingly promoted.

PDF downloadable from: www.senseaboutscience.org.uk

Myositis Support Group Conference Birmingham North East Muscle Group meeting Gateshead

August 18 – 20 August

Nemaling myopathy convention London

Contact 01968 674 998 or davidmcd@hotmail.com

October 1 October

Beardmore Hotel and Conference Centre, Beardmore Street, Clydebank, Glasgow G81 4SA Contact Maureen Winslade on 020 7803 4804

15 October

East Midlands Conference Centre, University Park, Nottingham, NG7 2RJ Contact Maureen Winslade on 020 7803 4804

Muscular Dystrophy Campaign Scottish Conference and AGM Glasgow Muscular Dystrophy Campaign National Conference and AGM Nottingham

www.muscular-dystrophy.org

TargetMD 33

Inspiration

WWE Community Champions join the fight ®

Eight Muscular Dystrophy Campaign youngsters have been rewarded for volunteering and showing inspirational support for the charity. WWE® has teamed up with us in an effort to encourage its young fans across the UK to support their local communities.

R

ecognising their contribution, WWE chose them as WWE Community Champions and gave them tickets to the WrestleMania Revenge live event tour in the UK in April. They also got a WWE replica championship title, a WWE T-shirt, a certificate of recognition and their story told on www.wwe.com Laura Bizzey was also chosen as a ‘National WWE Community Champion’ and received a meet-and-greet with WWE superstar, Triple H.

Eoghan faces. Harry’s friendship and support have greatly contributed to Eoghan’s sense of independence, and have been a huge support to Eoghan’s whole family.

“Eoghan’s friends have come to accept disability as natural and are inclusive in their attitudes. It has given Eoghan an outward looking approach to life in general,” said Robbie.

Carl has dedicated himself to campaigning to raise awareness of his condition. To date he has raised over £100,000 for research into Duchenne muscular dystrophy.

Midlands Bradley Addison Bradley, 7, is from Birmingham and has Duchenne muscular dystrophy. He was nominated by his mum, Sarah, the Midlands’ WWE Community Champion.

Bradley was the face (and smile) of our national awareness campaign in 2010, raising awareness of the condition. It was the time he became “a famous little boy with all his friends at school”, according to his mum. “The other reason I allowed Bradley’s picture to be used is because l feel as a mom this may help Bradley not to become scared of using or being in a wheelchair and to help him feel it’s okay to be different.

East of England

Qualification was based on a commitment to fundraising for us or supporting those affected by muscle-wasting diseases. Here are the regional winners:

Northern Ireland Kenny Cloke Kenny, 9, has Duchenne muscular dystrophy. In May 2010, Kenny was determined to participate in a Walk for Muscles along with his family and he raised £175 for the charity. Kenny walked three miles - a feat that required a large degree of determination in light of his severe disability.

Scotland Harry Donaghy Harry, 17, was nominated by Robbie, father of Eoghan who has Duchenne muscular dystrophy. Harry and Eoghan have been friends since nursery school and Harry has demonstrated maturity over the years, understanding and anticipating the difficulties

34 TargetMD

Yorkshire Jimi, 18, William, 11, and Edward Walsh, 6 Edward has Duchenne muscular dystrophy and his older brothers have been ‘superstars’ according to their mum, Julie. Both Jimi and William help with Edward’s muscle stretches and medication. William helps Edward at school and has introduced him to his friends so that more people across the school know him. Jimi encourages Edward to continue to play football and to stay positive and he also watches for and corrects Edward’s posture when he’s playing games.

North West England Carl Tilson Carl, 24, has Duchenne muscular dystrophy and is a huge WWE fan.

He met WWE Diva Trish Stratus some years ago and the two of them have struck up a friendship that sees them writing to each other, with Trish being a surprise guest at Carl’s recent birthday party.

For support call 0800 652 6352

Laura Bizzey Laura, 14, from Saxmundham, Suffolk, has minicore (multicore) myopathy and is a truly exceptional fundraiser, organising fundraising events and awareness days at her school. Last year she took part in the Just Walk event for the Muscular Dystrophy Campaign and walked a challenging 10km to raise over £1,500 for the charity.

London Stephen Liney Stephen is a dedicated fundraiser and volunteer for the Muscular Dystrophy Campaign. He has Becker muscular dystrophy and has been an active member of the Trailblazers network since 2008, recently becoming the chair of the South East regional group. In 2010 Stephen organised a Question of Support quiz night raising £150. In December 2010 Stephen took on the challenge of putting together a fundraising committee for the Aylesbury Vale area.

Chip in and change lives Friday 24 June 2011 Challenge yourself and your friends to play golf from dawn until dusk in the UK’s biggest golf challenge – the Four Course Classic.

Golf mar half at new hon fo 2011 r !

You’ll also be helping to make a real difference to thousands of families affected by muscle disease in the UK. To enter a team into the biggest golf challenge in the UK, visit www.fourcourseclassic.co.uk or contact golf@muscular-dystrophy.org

South West Nick Bryant Nick, 25, joined the Bristol and Bath fundraising team in summer 2010 at the request of his best friend Khurm, whose little brother has Duchenne muscular dystrophy. Since then he has been dedicated to the team, taking part in collections, securing support from local companies.

www.muscular-dystrophy.org

Registered Charity No. 205395 and Registered Scottish Charity No. SC039445

“ The Four Course Classic was a great success last year and I hope that even more golfers get involved in 2011. It’s a brilliant opportunity to explore four different courses in the name of charity work!”

Darren Clarke

Muscular Dystrophy Campaign’s National Conference 2011

Working Together Saturday 15 October East Midlands Conference Centre Nottingham

• Learn of the latest research developments and how research is being taken from the bench to the bedside • Meet some young Trailblazers and hear about their latest campaigns • Find out about our online forum, Talk MD • Meet other people living with muscle disease, in a friendly and relaxed environment • Share your views on the charity’s work and priorities To find out more visit: www.muscular-dystrophy.org/nationalconference2011 or call Maureen Winslade on 020 7803 4804 This year’s Conference will be brought to you thanks to:

Registered Charity No. 205395 and Registered Scottish Charity No. SC039445