Campaign June 2012

Campaign The newsletter for our supporters

Stem cells

Find out how your donations support stem cell research – a key to future treatments and cures

Thank you

Read about our brave supporters who took part in a spectacular skydive for us

Sporting stars Meet some of our torchbearers and Paralympic hopefuls

2 to our new issue of Campaign – now presented to you in a new-look format, with all the successes and developments from the Muscular Dystrophy Campaign.

As always, it is thanks to the generous support of people like you that the charity is able to continue doing the excellent work it does across the UK. As you will see on page seven, we have funded groundbreaking stem cell research over the years, which now holds much promise for the development of treatments for muscular dystrophy and related conditions. We could not have funded such significant work, which brings hope to individuals and families affected by the conditions, without your valued gifts.

On the extra leap year day in February, you may remember that the charity held a fundraising campaign called Make today count. We had 100 skydivers and lots of bucket collectors who together raised a staggering £60,000 towards our vital work. Thank you to everyone involved in this campaign, including four of our own staff members who skydived for us. You’ll see from the story of Mark Casey, on page six, that we have a great staff team who not only work at the charity but also volunteer and fundraise for it tirelessly.

Our campaigns team has recently introduced a Parents Education Network on our online forum – TalkMD – where parents can meet and chat with other parents about schooling issues. It has already proved helpful for parents needing to discuss their children’s special education needs.

We also introduce you, on pages 12 and 13, to some of our supporters who will be involved in the London 2012 Olympics and Paralympics as torchbearers or athletes. We will be cheering them on throughout the summer.

Thank you for your continued and valued support of our work.

Sue Barker MBE

President, Muscular Dystrophy Campaign Campaign newsletter for supporters of the Muscular Dystrophy Campaign , written and produced entirely in-house. Muscular Dystrophy Campaign, 61 Southwark Street, London SE1 0HL

t: 020 7803 4834 e: info@muscular-dystrophy.org w: www.muscular-dystrophy.org

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

www.muscular-dystrophy.org

DMN/1206

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Hydrotherapy access for all

Hydrotherapy can be a highly effective form of therapeutic exercise for people affected by neuromuscular conditions as it is a water-based activity that helps mobility and keeps muscle function stronger for longer.

In 2009, our South West Muscle Group produced a directory to help put people in touch with hydrotherapy services in their region.

Running in orange

Our fantastic 112 runners did great work again at the Virgin London Marathon 2012. ‘Team orange’ ran through the capital’s streets and together raised more than £240,000 towards our vital work.

Now the Muscular Dystrophy Campaign is set to follow their lead, backed by Muscle Group members across the country. Many people are unaware of pools in their area, or how to arrange access to them.

By helping to put together a one-stop directory of services, we will help to ensure that more people are able to benefit from this valuable service.

If you know of a hydrotherapy centre near you, please let us know so we can make sure we have the most comprehensive and up-to-date resource for all of our supporters.

For more information please contact us at info@muscular-dystrophy.org

In the midst of the 35,000 runners, striding head and shoulders above everyone else was our very own ‘kite runner’, Tim Moss. Running for younger brother, Chris, who has Becker muscular dystrophy, Tim wore the kite to raise not only awareness of the charity, but also some serious wind resistance!

Our volunteers cheered the runners on from Tower Bridge and along the Embankment, and welcomed them to our postrace reception. Congratulations and thanks to everyone who ran, cheered, sponsored and supported us on the day.

Take a look at our Facebook page for some great photos from the day www.facebook.com/ musculardystrophycampaign Leading research. Supporting people.

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20 – 30 October 2012

Come and climb Kilimanjaro with us in October 2012.

Conquer the highest free-standing mountain in the world and while doing so, you’ll be helping us in our fight to conquer muscular dystrophy and other related conditions.

Bharti Shah was one of the first to sign up for the challenge. Her epic fundraising feats for the Muscular Dystrophy Campaign began in 2007, when she took on a gruelling 100km trek for us, through the Sahara Desert.

Her 22-year-old son Rikin has congenital muscular dystrophy, and Bharti was determined not only to raise awareness of the condition but also to help generate funds for pioneering research into treatments.

Conquering the Sahara was just the start for Bharti, who also went on to raise thousands of pounds for us, navigating the length of the Great Wall of China in 2010. Being one of a group of people, all connected with muscular dystrophy in some way, was a powerful experience for Bharti.

I would definitely encourage anyone considering the Kilimanjaro challenge to get involved. I, for one, will be back this year for round three! Bharti Shah If you’d like to join Bharti and sign up for this challenge to climb Kilimanjaro and raise funds for us, do get in touch with Julia Selby in our events team on 020 7803 4828 or j.selby@muscular-dystrophy.org

www.muscular-dystrophy.org

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W

ith more than 2,500 children with muscular dystrophy or a related condition attending schools in the UK at any given time, we at the charity find that we are called on regularly to support parents and help them navigate the challenges they face throughout their child’s educational life.

PEN is the first initiative of our drive to improve services to parents and schools, and within the first two months, 85 people posted comments on the network, and 3,676 people viewed those comments. The network forms part of our online forum, TalkMD.

With this in mind, the Campaigns, Care and Information team recently launched the Parents Education Network (PEN), a peerto-peer support network aimed at getting parents with a child who has a neuromuscular condition talking with other parents in similar situations. Parents are often faced with unnecessary struggles when it comes to their child’s education, so by speaking to other families through PEN, they can tackle these challenges head on to ensure that their child receives an inclusive and holistic education.

The education system is a minefield. The Muscular Dystrophy Campaign has come up with a great idea in setting up PEN. Exchanging information with other parents can be invaluable as well as a real relief to families to know that they are not the only people struggling with the same situation.

If you are a parent and would like to join PEN, do visit TalkMD at www.bit.ly/penmdc If you’d like more information about the network, please contact David Moore-Crouch in the Muscular Dystrophy Campaign’s information team on 0800 652 6352 or info@muscular-dystrophy.org

PEN gives parents the opportunity for open discussion with other parents about issues relating to their child’s education. These issues could include Special Educational Needs (SEN) statements, choosing the right school, transition, as well as the vital emotional and practical support from other parents. PEN also offers support and advice from schools and educational experts, such as Ruth Bryan, a SEN teacher with 25 years’ experience, who regularly answers questions posted on the site.

Phillippa Farrant, parent, Muscular Dystrophy Campaign trustee and chair of the Duchenne Family Support Group, feels it can be tricky to find the right solutions for a child with a neuromuscular condition.

Phillippa’s son, Dan (21) has Duchenne muscular dystrophy and she remembers the challenges she faced when he was at school.

Leading research. Supporting people.

6 After volunteering at the charity for a month, Mark got a permanent job processing donations.

He recently moved into his new role where he encourages people to get involved in regional fundraising events.

“When people call in, I tell them what fundraising I’ve done. Telling them of my own experience and motivation really makes a difference,” Mark said.

It’s all about the cause F

or many staff members at the Muscular Dystrophy Campaign, working at the charity is more than a job.

For Mark Casey, Development Executive, it is more like a calling.

In 2010, Mark expressly sought a volunteering opportunity with the charity when three-year-old Joe, son of his friends Faye and Stuart, was diagnosed with muscular dystrophy. Mark was working in the fashion industry at the time and this news prompted him to seek more fulfilling work.

Joe’s diagnosis put everything into perspective for me, said Mark. www.muscular-dystrophy.org

Mark has raised close to £10,000 towards our vital work. He has run in the London Marathon, the London Santa Run and recently – despite his fear of flying – he skydived for us in our Make today count campaign. In June, he’ll be cycling 100km through London streets in the Nightrider event. He’s also volunteered at the Oxford Town and Gown 10k and at our annual fundraising Microscope Ball.

“It’s amazing to do something that is so close to my heart,” Mark said.

Three other staff members skydived with Mark: Dan Melbye (Online Manager), Hayley Gill (Volunteer and Events Manager) and Dr Marita Pohlschmidt (Director of Research). Lisa James (Senior Parliamentary Officer) and Nic Bungay (Director of our Campaigns, Care and Information team), and Sophia Bellamy (Fundraising Events Assistant) all ran the Virgin London Marathon 2012. Other staff members around the country take part in local fundraising events.

We run a wide range of events around the country, and you can read all about them on our website. If you would like to find out more about fundraising or events in your area, do get in touch with Mark on 020 7803 4826 or m.casey@muscular-dystrophy.org

7 What are stem cells?

Stem cells are non-specialised cells. They are a ‘blank canvas’ which can develop into the many specialised cells of the body such as muscle or skin cells.

They are the cells that our body has developed from but, most importantly, they can replace themselves over a long period of time, so that the supply of stem cells in our bodies almost never runs out.

Stem cell research – an overview

T

he Muscular Dystrophy Campaign funds essential research towards treatments and cures for muscular dystrophy and related conditions. We fund a number of exciting stem cell research projects, which we couldn’t do without your vital support.

But what are these stem cells that we hear about so much about in the media and how do they help muscular dystrophy research? Here’s some background information.

Once a stem cell has developed into one of the mature cells of the body, such as a skin or muscle cell, they have lost their ability to divide and replace themselves.

The pool of stem cells that remains in our bodies then ensures that in case of an injury the different tissues are repaired.

The ability of stem cells to repair tissue such as muscle means they represent an attractive prospect for use as a therapy in muscle diseases. If doctors could transplant healthy muscle stem cells into patients, then they may be able to set up residence in the muscle and help repair it – replacing fragile muscle cells with healthy ones.

Types of stem cells

Embryonic stem cells can be isolated from embryos between five and seven days after the egg has been fertilised. They are responsible for the miraculous creation of a new human being from a single egg and sperm.

Embryonic stem cells are useful Leading research. Supporting people.

8 tools for research; they could be grown almost indefinitely and potentially induced to form muscle cells in large quantities.

Adult stem cells are unspecialised cells found in small numbers in many organs and tissues. Unlike embryonic stem cells, adult stem cells usually only have a limited range of cells they can specialise into.

They usually develop into the cell types of the tissue they reside in, which makes their development easier to control. Research has found that some adult stem cells are more versatile than previously thought; for example, stem cells from blood vessels – and even from fat tissue – can be converted to muscle cells.

Satellite cells are examples of an adult stem cell.

They are the main types of stem cell residing in muscle, attached to the outside of the muscle fibre.

Satellite cells lie dormant until disease or injury triggers them to regenerate the muscle.

And news just in …

The Myology group of the University Pierre et Marie Curie in Paris has recently identified a new population of muscle stem cells – ‘progenitor interstitial cells’ (PICs) – that can be isolated from the muscles of very young mice. Once isolated and grown in the laboratory, these cells can be reintroduced into the damaged muscles of mice and can form new muscle. Research showed that PICs can repair muscle as efficiently as satellite cells, the ‘professional’ muscle stem cells. This work has identified a new source of stem cells in the muscle that may have potential for the development of therapies for muscle disease in the future. However, whether PICs are present in adult muscles and contribute to their regeneration in muscle disease, are all questions that need further study.

To learn more about all the different research grants we currently fund, visit our website at www.muscular-dystrophy.org/ research/grants/current_grants www.muscular-dystrophy.org

9 The Muscular Dystrophy Campaign currently funds three research projects to improve our understanding of the biology of muscle stem cells. These research projects are attempting to answer some important questions about how they could be used as treatments: Investigating the role of muscle stem cells in facioscapulohumeral muscular dystrophy Dr Peter Zammit, King’s College London Dr Zammit aims to explore the role that muscle stem cells - also known as satellite cells - have in the progression of facioscapulohumeral muscular dystrophy (FSH). Dr Zammit will deliver two of the genes thought to be involved in FSH into muscle stem cells. This will allow him to find out what effect, if any, these genes have on how well the muscle stem cells are able to repair muscle.

Assessing the impact of muscle environment on stem cell behaviour Dr Jenny Morgan, UCL Institute of Child Health Dr Morgan proposes to look at satellite cells from both young and old mice to try and determine what effect, if any, the muscle environment has on the ability of these cells to self-renew and to produce new muscle cells. Dr Morgan will investigate if satellite cells can regenerate injured or aged muscle in a mouse model of Duchenne muscular dystrophy and then what factors might be involved, to find out if the effect can be reversed allowing the cells to regenerate the muscle.

The role of the protein Bmi1 in the replication of muscle stem cells Dr Lesley Robson, Barts and the London School of Medicine and Dentistry In muscle diseases such as Duchenne muscular dystrophy, the ability of the satellite cells to multiply and repair muscle is severely impaired and this results in degenerative changes in the muscles. In other stem cell populations, such as blood and skin, the ability of the cells to multiply and regenerate tissue is regulated by the level of a gene called Bmi1. Bmi1 can also be found in satellite cells and has been shown, in the lab, to affect how well the satellite cells multiply.

Dr Robson plans to investigate the function of Bmi1 in the satellite cell population in Duchenne muscular dystrophy. They hope to determine if Bmi1 levels are decreased in this condition, thus impairing the ability of the satellite cells to repair the muscle. They will also study what effect increasing and decreasing the levels of Bmi1 might have on the satellite cells.

Leading research. Supporting people.

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W Watford made our day count We love it, at the charity, when stories of our supporters spark the interest of other supporters and a chain of events takes place. The end result is not only increased fundraising, but also new communities made aware of muscular dystrophy and related conditions. That’s what it’s all about. www.muscular-dystrophy.org

hen our leap year fundraising campaign – Make today count – was launched in January this year, the Watford Observer ran a story about local powerchair footballer, Stevie Pearson (19). A key member of the silver medal-winning England team at the Powerchair Football World Cup 2011 in Paris, Stevie has Duchenne muscular dystrophy and he appealed to his local community to skydive in support of the charity’s fundraising campaign. Funds raised would go towards the charity’s groundbreaking research which, he said, “could help to change the lives of the next generation born with muscular dystrophy”.

One local resident read the article with particular interest: Stevie’s nan, Linda Harman (61). She was so impressed to read the article about her inspiring grandson that she decided there and then to skydive.

Linda decided to hold back on telling her family straight away about her decision.

Once she got the all-clear from her GP, Linda made the announcement to her family. They were amazed!

Her son-in-law, Marco Hatfield, decided to join her in the skydiving/fundraising bonanza. The two of them took their 10,000 ft leap of faith at Brackley on 11 March 2012.

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Make today count

“I’m so pleased I can now say ‘I did it’ and it was the most fantastic thing ever! Such a buzz, plus knowing I have raised well over £500 is even better,” said Linda.

Two other local residents who took careful note of the Watford Observer article were cricket coaches, Ian Sampson and Gulfraz Riaz, both 40. Inspired by Stevie’s story in the paper, Ian and Gulfraz decided to walk from Watford Town Cricket Club to Lord’s Cricket Ground in London, in full batting gear.

The two had coached Stevie and his brothers and decided to raise funds for the Muscular Dystrophy Campaign. They walked the 14 miles on Wednesday 29 February and were met at Lord’s by a delighted Stevie.

Not only was Stevie thrilled with his coaches’ challenge, but he was also off to Wembley Stadium that evening along with the rest of the most successful England football team of 2011 – to go on the pitch at half-time during the England v Holland international.

On 29 February 2012, families from across the UK came together to make the leap year day count and raised more than £60,000 for Muscular Dystrophy Campaign research.

A team of 100 brave supporters from all across the country took on the challenge of skydiving to help us raise funds for our vital research.

The innovative fundraising initiative also received tremendous support from volunteers running bucket collections at 25 different locations across the country, braving the cold weather in elaborate costumes, and from businesses across the UK that donated a day’s annual leave as a raffle prize.

Thanks to everyone who pulled together to make today count for muscular dystrophy research.

Not only that: Stevie’s family felt they wanted to raise some money themselves. So, during the February half-term, the Pearson family group, in orange T-shirts, spent three hours outside Sainsbury’s in Watford in the freezing cold and collected £250 for us.

One local newspaper article led directly to a number of fundraising challenges for us, around £2,500 being raised and a community newly engaged in a charity that supports – among the 70,000 adults and children affected by muscular dystrophy and related conditions – a lovely Watford family.

If you are inspired to do your own fundraising challenge for the Muscular Dystrophy Campaign, do get in touch with us on 0845 872 9058.

If you would like to get involved too and help to fund muscular dystrophy research, there is still time to make a donation. Just £35 will fund an hour of vital muscular dystrophy research.

Leading research. Supporting people.

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Ollie’s in the gold lane

O

llie Hynd, a 17-year-old who has mitochondrial myopathy, will be swimming for Great Britain at the London 2012 Paralympics.

The announcement came in mid-April, following Ollie’s world-class performances at the Paralympic swimming trials at London in March and Sheffield in April

Read more about Ollie and his brother Sam, who won gold in the Beijing Paralympics four years ago, on our website at: www.bit.ly/thegoldlane www.muscular-dystrophy.org

Ollie swims at the Nova Centurion swim squad in Mansfield under the guidance of coach Glenn Smith, and is working hard to prepare for the Paralympics over the coming weeks and months. Making the list is a great achievement for Ollie, who swam a world leading time in 2012 of four minutes 28.62 seconds in the 400m Freestyle.

Quick to pay tribute to those who have helped him reach this point, including family members, coaching staff and support from the local community, Ollie also acknowledged the funding he got from Nottinghamshire County Council’s “Shining Stars” programme, to help support talented athletes who compete at international level.

Ollie’s coach, Glenn Smith, said, “Ollie has worked incredibly hard with myself at Nova, alongside technical coach Jill Barlow to get to this point. I am happy that he’s been named on the list after successful performances at both trials and look forward to preparing for the Paralympic Games with him.”

Chris Whitaker, Ollie’s agent, said that making the British team was a massive achievement.

“I am delighted for Ollie, whose efforts during both Paralympic swimming trials have been recognised.

The support Ollie has received from the coaching and technical staff, and the community as a whole has also been brilliant,” he said.

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They’re carrying the torch!

Congratulations to supporters all around the country who have been selected as Olympic torchbearers for the London 2012 Olympics.

Carl Tilson of Manchester, Laura Bizzey of Saxmundham, Jack Franklin of Brough, Michaela Hollywood of Downpatrick, Paul McIntyre of Stirling, Zakia Begum of Walsall, Alexander Jordan of Worcester, Cam Edmonds of Broadstairs and Pamela Moffatt of London will each carry the flame for 300m through their local areas during its 8,000 mile journey. Taz Virdee of Hillingdon has been selected as an Ambassador for the Paralympics, and will be giving information about the Paralympics to visitors at Trafalgar Square.

Also, watch out for Ollie Hynd, 17-year-old European swimming champion from Nottingham who will be participating in the Paralympics. And of course the fab four: Jacob Thomas of Narberth, Scott McCowan of Ayrshire, and Stephen and Pete McGuire of Lanarkshire, who have been selected to play Boccia for ParalympicsGB with high hopes of picking up a medal.

To find our more about our charity supporters at the Olympics and Paralympics, visit: www.bit.ly/paralympics2012 To read more about our torchbearer Carl Tilson visit: www.bit.ly/carltilson

Town and Gown 10k – new addition, new target

Our well-established Muscular Dystrophy Campaign Oxford Town and Gown 10k now has a competitive historic rival. In April we saw the inaugural Cambridge Town and Gown 10k race launched in the heart of the city.

The Muscular Dystrophy Campaign Town and Gown 10k race has taken place in Oxford since 1982 and it has, to date, raised a staggering £1million. With the challenge now running through Cambridge too, we saw a total of 3,500 university students and townsfolk united in running and raising money for the Muscular Dystrophy Campaign.

Event organiser Alun Mainwaring said, “These were two fantastic runs in the calendar. The Town and Gown 10k in Cambridge was off to an impressive start and, together with another excellent run in Oxford, we are set to raise a staggering £100,000.

We now have our sights firmly set on reaching the second million in the next six years.”

The races were held two weeks apart, on 29 April and 13 May, with some ambitious runners taking on both.

If you’d like to take part in one of our other running events, such as the British 10k in London on 8 July, or the Great North Run in Newcastle on 16 September, do get in touch with Hayley Gill on h.gill@muscular-dystrophy.org or 020 7803 4824 Leading research. Supporting people.

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Footie fans power up

T

wo football-mad women in the North East have pooled their passion and time to start a powerchair football club in their area. Cath McNicol and Carolyn Bean recognised the need for a local club in Middlesbrough and the huge response to their taster sessions has proved them right.

Cath has spinal muscular atrophy (SMA) – an inherited neuromuscular condition that results in weakness of the muscles. Cath has never walked. She uses a powerchair for mobility, needs assistance for all personal care, and because she was never able to play football, she’d never been part of a team or known the euphoria of scoring a crucial, matchdeciding goal.

All of this changed five years ago, when Cath discovered powerchair football.

“Powerchair football is the only fast-paced team sport that people with severe physical disabilities can play, and the nearest club where we can play is over an hour away in Newcastle. So Carolyn [a fellow powerchair football coach] and I decided to set up the Middlesbrough Powerchair Football Club and to run a few taster events to gauge interest. The response has been overwhelming,” Cath said.

Cath and Carolyn held taster sessions on two Sundays in April, and couldn’t believe the response they had.

Around 30 people, aged from 10 to 53, came to these sessions and enjoyed having an opportunity to try out the sport. There will be more taster sessions in the summer.

“As powerchair football is a relatively new sport, many disabled people in their 20s, 30s, 40s and 50s are discovering they can play a team sport. This was never available before and, because there are no age or gender categories in powerchair football, it’s understandable that many adults want to have a go too,” said Carolyn.

Players need to have specialist powerchairs and related equipment to play football.

The Joseph Patrick Trust (JPT) is the grant-giving trust of the Muscular Dystrophy Campaign and provides part-funding towards the cost of equipment for children and adults with muscular dystrophy and related conditions.

We fund equipment – such as powered wheelchairs, adapted computers and electric beds – that promotes mobility and independence.

To learn more about the work of the JPT do get in touch with us on 020 7803 4800 or visit www.muscular-dystrophy.org/jpt To find out more about powerchair football, do visit our website www.bit.ly/targetmdpcf or Cath and Carolyn’s blog www.boropfc.blogspot.co.uk

www.muscular-dystrophy.org

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A film worth watching A Life Worth Living: Pushing the boundaries of Duchenne is a full-length documentary film about Dr Jon Hastie’s journey to meet men, like himself, with Duchenne muscular dystrophy. It took Jon (31) and his film crew around the UK and into Europe last summer, to meet six inspiring ‘Duchenners’, as Jon calls them.

The film is about the unwavering spirit of people determined to beat the odds, and is filled with a message of hope and inspiration for the next generation.

Visit our website to see the trailer for the film and for any further updates. The film, which is currently being entered into film festivals, will be officially released and available as a DVD some time within the next six to 12 months.

To read more from the amazing people that Jon met during this film, visit our website www.bit.ly/MDCinterviews

I am determined that this film will break out of the Duchenne world and be a vehicle for raising awareness among the general population, said Jon.

Leading research. Supporting people.

In memoriam

A special way to remember friends and loved ones A donation to the Muscular Dystrophy Campaign is a very special way to remember and honour the life of a relative or friend. Your donation will be used to give hope and support to all those families living with muscular dystrophy and related conditions.

If you’d like to talk to someone about In Memoriam giving, please do get in touch with Sarah Greenwood: t: 020 7803 4834 e: s.greenwood@muscular-dystrophy.org w: www.muscular-dystrophy.org Registered Charity No. 205395 and Registered Scottish Charity No. SC039445