Update Spring 2016 by Kidney Research UK

Update Spring 2016 Issue 9

THE MAGAZINE FROM KIDNEY RESEARCH UK

THE BIG INTERVIEW New Chairman, Professor John Feehally PAGE 06

ADPKD treatment breakthrough PAGE 04

Keeping in touch: New rules for charities

New molecule could protect against kidney disease

PAGE 10

PAGE 12

Welcome Spring is in the air!

Spring has to be my favourite season. I love getting out into the garden as soon as the bleakest days of winter have passed. If you are anything like me you will be caught up in a frenzy of tidying up flower beds and borders, seed-sowing and nurturing your garden as it comes to life! Spring is also a hectic time for the staff and volunteers of Kidney Research UK. We are busy planning for World Kidney Day on the 10th March, as well as many challenge events, including the London Marathon – see page 14 to find out the motivation behind some of our inspirational runners.

#PimpItPurple Thank you to everyone who took part in our recent #PimpItPurple appeal, bringing the ‘fun’ into fundraising, helping to raise vital funds for kidney research in the process. Throughout December we invited people to join us in ‘pimping up’ a whole host of things purple, from offices and parties, through to cars and people, whilst raising money. We loved seeing what everyone was getting up to on social media. Here’s some of the fun things people did.

In this issue of Update you can find out the main challenges our new Chairman, Professor John Feehally, would like to tackle in the world of renal research in The Big Interview on page 6. Read about a breakthrough in treatment for autosomal dominant polycystic kidney disease (ADPKD) that will soon be available for selected patients across the UK (page 4). Also read about our position on the new stringent fundraising rules set out by the Fundraising Standards Board and our promise to supporters on page 10. Our work at Kidney Research UK is only possible with your support. As we strive to do more to free lives from kidney disease, we ask for your help spreading the word; to family, friends and colleagues. Whatever you have done to help, share the success on social media, talk to your local newspaper and radio station and let your local MP know of the need to do more to fight kidney disease.

Non-school-uniform day

With your continued support we can all generate the awareness that will lead to new funding for vital research. Thank you once again for your support and I hope you enjoy the read!

Alex Wheldon, Editor Contributors Angela Bolton Allison Parkinson Harriet Williams Aazam Ahmed Leicester Kidney Exercise Team Photographers Matthew Roberts

Printed by Print 4 Business Ltd Designed by www.adeptdesign.co.uk Contact us Kidney Research UK Nene Hall, Lynch Wood Park Peterborough PE2 6FZ Tel: 0300 303 1100 www.kidneyresearchuk.org

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Hand stitched bookmarks

NEWSROUND // P03

Peer Educator Team win award Our dedicated, fantastic team of 12 volunteer Peer Educators on our Scottish Government funded project are now award winning. They received the Chhokar Family Legacy Community Award at the Scottish Asian Business Awards. They have encouraged over 360 people to join the NHS Organ Donor Register which is a significant achievement!

Summary of SPARK project: An exciting project is currently underway in Leicester, funded by Kidney Research UK. The Leicester Kidney Exercise Team are developing interventions to help people with early stage chronic kidney disease (CKD) start to be more active. Read the team’s 10 top tips to keep active this spring on pages 8 and 9. The SPARK programme is based on a project that produced positive results for people with lung disease and has been adapted especially for people with kidney disease by talking to patients to find out what was important to them. The first version of this programme is currently being road-tested by patients and the team will use the feedback from these people’s experience to adapt the design and content before the next round of testing. The initial feedback has been very positive and participants have said “it is smashing” and “I would recommend it to anyone”. The team are developing a group intervention which is also being informed by successes from world-leading research in diabetes.

Team Purple with the SABA Award

Dates for your diary

World Kidney Day 10 March

London Marathon 24 April

London Bridges Walk 3 July

British 10k 10 July

London Ride 100 31 July

Great North Run 11 September

Glasgow Bridges Walk 9 October

To find out more visit: www.kidneyresearchuk.org/get-involved

Call our donation line: 0800 783 2973

HOW YOUR MONEY’S HELPED // P04

We’ve reached a major treatment milestone Your support has helped to develop a possible new treatment for autosomal dominant polycystic kidney disease (ADPKD) – the most common inherited kidney condition. The National Institute for Clinical Excellence (NICE) – the independent organisation which decides which drugs and treatments are available on the NHS in England and Wales – recently recommended tolvaptan as a treatment for some people with ADPKD. This is a significant milestone as the drug is the first diseasemodifying treatment for the condition. In this disease, cysts start to develop in the kidneys from birth and can grow progressively to eventually destroy the kidney. Scientists know that a molecule called cAMP contributes to cyst enlargement and tolvaptan has been shown to reduce levels of cAMP and slow cyst growth. Any new drug that comes on to the market today owes a debt of thanks to the years of hard toil undertaken by researchers. And work that was funded by Kidney Research UK three decades ago was the first of many milestones which have aided our understanding of polycystic kidney disease (PKD).

In 1984, Dr Stephen Reeders, former registrar on the Oxford Renal Unit (part of the Oxford University Hospitals NHS Foundation Trust) discovered and mapped the gene for polycystic kidney disease, with support from Sir David Weatherall and Dame Kay Davies.

Polycystic kidney

Find out more: www.kidneyresearchuk.org

He then studied the gene further to see how its mutations lead to PKD – key information that was needed before other researchers could eventually go on to work on new drug treatments.

HOW YOUR MONEY’S HELPED // P05

There are probably 200 scientists working on kidney research today that were drawn into the field because of work that got its start because of that grant from Kidney Research UK. Dr Stephen Reeders

“But this work costs money and I didn’t have any,” Stephen explains. “Moreover, I had a limited track record in science. There were only three or four people dedicated to PKD worldwide back then, it was a backwater. There was no funding for it. “Fortunately, Kidney Research UK saw the potential in my work and gave me a grant of £25,000, enough to hire a technician and buy reagents. That first funding was critical. Without it, I wouldn’t have been able to move forward. It gave me the currency (ability) to attract post-doctoral fellows who were able to accelerate progress. It also gave me the credibility to apply for bigger grants. “There are probably 200 scientists working on kidney research today that were drawn into the field because of work that got its start because of that grant from Kidney Research UK.” Some clinicians and geneticists believe that NICE’s recommendation of tolvaptan may lead to a profound change in the way ADPKD patients are managed – possibly with more frequent visits to specialist clinics, increased kidney scanning and more patient requests for genetic screening. This, they hope, will ensure that health professionals will be better able to address key issues for patients such as pain and the psychological burden of the disease.

The next step

ADPKD FACT FILE c ADPKD affects between 1 in 400 and 1 in 1,000 people worldwide and accounts for around 1 in 10 people on dialysis and 1 in 8 with a kidney transplant in the UK. c ADPKD is caused by mutations in one or more genes causing them to function abnormally. There is a one in two chance that an affected parent will pass on ADPKD to each child born.

PATIENT STORY NICKY JAMES Nicky James was diagnosed with ADPKD when she was 12. “Five members of my family were participants in the clinical trials for ADPKD gene sequencing and I have always wondered what the outcomes were. It’s great that this has now led to this point of research,” says Nicky. “I was always an unwell child with many serious illnesses. I was always anxious about the future as my mum had ADPKD and underwent years of dialysis and illness, and two transplants, before she died. I’ve experienced many symptoms associated with cyst and organ expansion including excessive swelling in many areas of the body. I have now had a transplant, but having had the illness for so many years I have weakened bones, some erratic blood pressure problems, glucose intolerance, hair loss and skin problems. I also suffer with fatigue and find I am very predisposed to stress. “I have other family members who have elected not to be tested for ADPKD until they are older, as they believe there is so little that can be done through the medical profession to help them as yet. They feel a diagnosis of ADPKD that cannot be managed until later in life actually puts them at a disadvantage – with insurance and potential career choices. They may well change their minds if they felt they were able to access effective medication to slow the progression of the disease and therefore prevent kidney damage.”

c In ADPKD fluid-filled cysts develop in the kidneys and often the liver and pancreas. Over time, the cysts grow and multiply, usually causing the kidneys to lose their function. Kidneys can enlarge to three to four times their normal size. c Nearly two thirds of adults and one third of children with ADPKD will develop high blood pressure or hypertension. Early and effective treatment of hypertension is essential to minimise the risks of strokes or heart problems.

Who is eligible for tolvaptan? The NICE recommendation is for ADPKD adults with chronic kidney disease stage 2-3 with evidence of rapidly progressing disease. As the monitoring of disease progression varies in different areas, an expert panel led by Professor Albert Ong is looking at how to identify and provide access for patients who meet the criteria.

How can I find out if I am eligible for tolvaptan? Speak with your consultant – take this article if you like – and they will talk to you about your eligibility.

Be part of the next treatment breakthrough Help us fund more research projects that could lead to new treatments and therapies for kidney disease. Please make a donation at www.kidneyresearchuk.org/donate

Call our donation line: 0800 783 2973

THE BIG INTERVIEW // P06

Professor John Feehally

Steering us towards greater success: Professor John Feehally is our new Chairman We are delighted to have senior UK nephrologist, Professor John Feehally, as our new Chairman of the board of trustees. The recently retired Consultant Nephrologist became Chairman in September after being first appointed as a Trustee in 2014. He brings a wealth of experience to this important role. John is a Professor of Renal Medicine at the University Hospitals of Leicester and his own research over the last 30 years has focused on the kidney disease, IgA nephropathy. John is also Programs Chair for the International Society of Nephrology and is a past President of the Renal Association, and more recently of the International Society of Nephrology. He was also a founding member of the international committee which launched World Kidney Day. We caught up with John recently to find out why being Chairman of Kidney Research UK is so important to him.

Find out more: www.kidneyresearchuk.org

There are really excellent renal researchers in the UK â&#x20AC;&#x201C; if we can unlock this funding challenge things will fly.

THE BIG INTERVIEW // P07

Congratulations on your appointment as our Chairman of the board of trustees. What does this role mean to you? It’s a privilege because Kidney Research UK is a fantastic organisation which I have been involved with in various ways for 30 years. It funded my research work for many years, then I became Senior Medical Advisor, then a Trustee, and now Chairman. It’s a great thing to do because I’m working with so many terrific people both within the charity and on the board of trustees who are a really committed group, who bring experience from many backgrounds.

What does the role of Chairman entail?

What activities are you involved in as Chairman?

I attend events like our first ever Industry Day which brought together pharmaceutical companies, researchers, clinicians, academics and kidney patients. I also represent Kidney Research UK on a number of other national organisations, including the UK Kidney Research Consortium where we get together with other professional bodies and patient groups to help plan the clinical side of our research. I get the opportunity to meet many supporters at various fundraising or awareness events such as our annual Advent Service. I also get involved in specific projects, for example when we’re developing a new area of work. I may offer advice, join discussions, help with planning or suggest contacts.

With the board of trustees, I oversee the governance of the charity. However, our job is not to interfere in the day-to-day running of the organisation, that’s what Chief Executive Sandra Currie and the senior management team does. Our job is to support them, encourage them, sometimes challenge them, and keep our financial and organisational governance straight.

We meet once a quarter and in addition I’m involved in a number of committees, which report to the Board. These include the Finance and Risk Committee, and also the Research Strategy Committee which advises the board on which of the many areas of kidney research we should be focusing on and investing in. In addition I’m in regular contact with Sandra, we meet once a week.

It’s perfectly manageable – you just have to plan your diary well and a lot of my work is flexible. I do have to travel regularly as part of my role with the International Society of Nephrology but quite a lot of this work is simply done by email or by phone conferences which are often in the late evening or very early morning, which means that it doesn’t interfere with my UK work during the day.

Partnerships are about building relationships – you build trust and respect then you can do more together.

You must be extremely busy. How do you manage to combine this role with your research work in the UK and your overseas work with the International Society of Nephrology?

Do you have time for other interests aside from all of your work? I play the bass clarinet and the alto saxophone. I play in fundraising concerts around Leicestershire. I also support Leicester Tigers – probably the best rugby team in England!

What do you feel are the main challenges and opportunities for renal research and renal medicine?

To do more renal research we need more funding, and to get more funding we have to increase awareness of kidney health and kidney disease – and that’s a challenge wherever you go in the world. Trying to get our message about kidney disease heard in the national media, and heard by government is quite hard because kidney disease is less common, and has less media traction than say heart disease or cancer in the UK. The government is also inevitably concerned about the high cost of long term dialysis and transplant. So it would be good for us if we could build a case for research that can enable us to identify patients earlier and treat them more effectively, so we can actually avoid the need for dialysis or transplant in some people. However, I’m actually very encouraged because I think we are gradually building the case for more funding and also because of the increase we’ve been able to make in the amount of research funded through Kidney Research UK in the last two to three years. We’re beginning to find more contacts and more opportunities. Also, if you look at what our UK research output is in world terms we really do deliver more than you would expect. So what that means is there are really excellent renal researchers in the UK – if we can unlock this funding challenge things will fly.

What else do you think we can do to help address these challenges and maximise opportunities? We clearly have to work in partnership with others; all sections of the kidney community need to work together more and we really do need to work with our partners in industry. Our recent Industry Day was a good example of this growing partnership. Obviously industry colleagues have some different perspectives but they also have shared goals and they have resources. But they’re not going to invest those resources in kidney research unless they see what the opportunities are for them and we show them that we want to work with them.

Speaking at a IgA Nephropathy conference in China

As always all of these partnerships are about building relationships – you build trust and respect then you can do more together. Call our donation line: 0800 783 2973

HEALTH & LIFESTYLE // P08

tips to keep you active this spring! Tips provided by the Leicester Kidney Exercise Team.

Keeping active all year round is really important for your fitness, health and well-being. However, the cold days and dark evenings during winter can sometimes be enough for us to slip out of our exercise routines. Many of us start to say things like - “We’ll start again after the holidays”. Thankfully, with the lighter evenings, it gets easier and we tend to get a bit of a spring back in our step. So whether you have been slacking off a little in the winter months or maybe you have decided this is the year to add more activity to your life, we have compiled a list of 10 great tips to help.

Find out more: www.kidneyresearchuk.org

Think about why you want to get fit.

First and foremost, we all need a reason for why we are trying to get fit. It could be to feel better, have more energy or to be fitter so you can enjoy your summer even more. Whatever the reason make sure it is important to you – and then why not stick it on the fridge door as a reminder?

Add in a bit more physical activity to your daily routine.

Shopping is a great way to add more steps into your usual routine e.g. park the car further away, take the stairs rather than the lift and take more trips to unload the car when you get home. Other ideas include putting the radio on and practicing your dance moves while the kettle boils, standing while you are on the phone and walking around to see your neighbour rather than calling them.

Do one thing rather than trying to change everything.

Involve your friends!

Spring is a busy time for nature so get out into the garden.

Focus on just one thing to begin with and this will help you get into a sustainable routine – you’ll soon see some improvement! Once you’ve mastered this positive change, it is easier to start thinking about tackling another challenge e.g. stopping smoking, improving your diet or cutting down on alcohol.

It is much easier to stick to a new habit if you do it with a friend or partner. Why not try some of the classes at your local leisure centre e.g. Zumba, pilates, aqua-fit or spinning. These classes are usually very friendly and brilliant ways to meet people that have the same fitness goals as you. Just try different things and when you find something you really enjoy you can just go for it.

Gardening for 15 minutes is roughly the equivalent of walking 1200 steps – this is even higher for mowing the lawn – making it a great way to add activity into your life! The garden will thank you for your hard work as spring is definitely the time that the roses need to be pruned, the grass needs to be cut and please don’t forget the weeds.

HEALTH & LIFESTYLE // P09

Commit to your spring clean.

Not only can a good spring clean help you build activity into your day; it can also help you to release stress and feel better in yourself. There is definitely something therapeutic about having a clean and tidy home, shed or garage, not to mention the little bonus of uncovering some of those lost items from the back of cupboards. Put your favourite music on and get going!

Track your progress.

This can be as simple as keeping a note in your diary of your achievements, up to investing in a pedometer or activity monitor. This will allow you to identify your starting point. No matter what this is, everyone can get fitter you just have to start small and build up.

Set yourself a goal and include a reward.

Start with something small and achievable and build up your activity towards a long term goal. Make this goal achievable and most of all measurable. It may be being fit enough to try a new activity during your summer holiday.

Review your diet.

Think about what small changes you could make e.g. changing your mid-morning chocolate biscuit for a piece of fruit or an oatcake, if you have any concerns have a chat with your health professionals. Everyone can usually make small changes to their diet to eat better for their hearts. Eating the right foods will help to give you more energy to get involved in different activities.

Get out for a walk in the fresh air – this can really give your mood a boost!

There is nothing like a walk on a sunny winter’s day and seeing the snowdrops and daffodils coming up and with the days getting longer there is no better time than to get out of the house and start exploring. Just remember to take a drink, let someone know where you are going or carry your mobile phone. Remember that it can take a few attempts when trying to make a positive change – don’t be too hard on yourself if it doesn’t go as smoothly as you imagined. What is important is to remember that if you have done it once you can do it again!

Tuna steak with mango and pomegranate salsa Manchester born BBC fusion chef, Aazam Ahmed, serves up a delicious recipe, and Harriet Williams Clinical Dietician Renal Lead and Chair of the Renal Nutrition Group, tells us how to make it more kidney patient friendly. Aazam Says: “Cookery should be expressive, fun and full of enjoyment – not a chore. This is a really healthy dish with a great personality and it is so easy to make.” Aazam’s Tip: “When starting to cook this dish, make sure you have all the ingredients at hand as the cooking process is very quick and it is important not to overcook the tuna.”

mad

Chef Aazam Ah

Ingredients For the tuna c 1 medium tuna steak

For the salsa c 2 chopped plum tomatoes

Juice of 2 limes 2cm of grated ginger c2 finely chopped green chillies cA small handful of chopped fresh coriander c 1 tsp of olive oil

Method

2 finely chopped spring onions 1 chopped red or green chilli c 1/2 chopped mango plus a little mango juice or puree if available c 1/2 freshly squeezed lemon c 100g of pomegranate seeds c A small handful of chopped fresh coriander

For the tuna Place the tuna steak into a small freezer bag with the juice of the two limes, olive oil, grated ginger, chopped chillies and coriander. Gently massage into the tuna and allow to marinade for 10-15 minutes. Sear the tuna in a hot pan for approximately 2 minutes on each side. For the salsa Mix all the above ingredients together to make a beautiful salsa to serve with the tuna steak.

Comments from Harriet: c

T una is a great source of protein which is important for growth and repair in the body. For most people one light meal and one main meal a day containing a protein rich food is about right but some people with kidney problems will be advised to eat more or less than this.

F lavourings such as lime, ginger and chillies are a great way to make food tasty whilst avoiding adding salt.

T omato, mango and pomegranate are all medium to high potassium fruits. If you have been advised to follow a low potassium diet, you could cut down to 1 plum tomato and 50g of pomegranate seeds and switching the fresh mango to tinned mango which is lower in potassium. Avoid adding the extra mango puree.

This dish could be served with bread or rice (also low potassium foods) to provide energy and create a balanced meal.

Call our donation line: 0800 783 2973

FOCUS ON... // P10

Keeping in touch – in the way you want Our supporters are our lifeblood. Without you we simply couldn’t fund the groundbreaking research that is making a real difference to kidney patients’ lives. We take our supporter engagement responsibilities extremely seriously, and that includes how we use your personal details and how and when we contact you, according to your wishes. In this feature, Head of Fundraising Simon Burne highlights why your support is so vital. He also explains why, in the light of new more stringent fundraising guidelines, it is more important than ever for us to ensure that we keep in touch in the way that you want us to. “We value our supporters hugely,” says Simon. “We couldn’t do anything without their support. Around 60,000 people are living their lives today thanks to the research that our supporters have helped to fund. “Around £7 million is raised by the public each year but we can only currently fund about half of the research that we would like to so we are desperately looking for new forms of income. However, we don’t want any supporter to ever feel that they are under pressure to do anything that they don’t feel comfortable with. We want to ensure that our

Find out more: www.kidneyresearchuk.org

supporters’ wishes are always at the very heart of our fundraising plans and decisions. “We will always try to choose fundraising activities that supporters will want to be involved with and which will raise the most money for as little cost as possible. We want our supporters to be our willing partners in helping us to find a cure for kidney disease.” The voluntary sector has always set itself strict guidelines around the way charities should engage with their supporters but new, more stringent rules have been recently introduced by the Fundraising Standards Board, the independent self-regulator for charity fundraising in the UK. This follows a national review into fundraising self-regulation led by Sir Stuart Etherington, Chief Executive of the National Council for Voluntary Organisations.

We want to ensure that our supporters’ wishes are always at the very heart of our fundraising plans and decisions.

FOCUS ON... // P11

We want to engage and draw supporters into the organisation as our willing partners in helping us to find a cure for kidney disease.

As a result of these new rules, charities can no longer contact supporters signed up to the Telephone Preference Service or the Mail Preference Service (official registers where people can opt out of receiving unsolicited sales or marketing calls or letters) – even if they have been happy to be contacted in the past. “As members of the Fundraising Standards Board and the Institute of Fundraising we insist on the highest possible standards and adhere to all fundraising and data protection guidelines and legislation. For example, we have never sold supporters’ details to anyone else ever, and we never would,” says Simon. “And it is only right that, as a sector, we make absolutely sure that charities do not contact people in the wrong way. “We are desperately keen to communicate with our supporters to ensure that we are speaking to them in the way that they would like, but sadly there are a lot of supporters that we can no longer have that conversation with because of the new rules. “We want to keep in touch with all of them and we certainly don’t want anyone to think that we no longer value their support because we haven’t been in contact – because that couldn’t be further from the truth. “So I would like to say to all of our supporters, ‘If you are signed up to the Telephone Preference Service and you are still happy for us to call you please let

us know by calling, emailing or writing to us. Similarly, if you are signed up to the Mail Preference Service and you are happy for us to write to you please let us know, otherwise we will have to assume that you don’t want to hear from us anymore. That would be a shame to lose such an important partnership and it would be extremely detrimental to our charity. “Even if you decide at some point in the future that you don’t want us to contact you, it would still be good to tell us. We can then ensure that we update our databases with your wishes.”

Please contact us if you want to keep in touch If you’re signed up to the Telephone or Mail Preference Service and would still like us to keep in touch with you please contact our Supporter Care Team. Call: 0300 303 1100 Email: enquiries@kidneyresearchuk.org Or write to: Kidney Research UK, Nene Hall, Lynch wood Park, Peterborough PE2 6FZ And remember, you can change how you would like to be contacted at any time by contacting our team.

OUR PROMISE TO OUR SUPPORTERS cY our data is safe with us. We do not share or sell your details to anyone else. cW e insist on the highest possible standards and adhere to all fundraising and data protection guidelines and legislation. We are members of the Fundraising Standards Board and the Institute of Fundraising. cW e have a dedicated Supporter Care team who are here to help you whatever your query. Whether you would like kidney health information, to know ways to support our work, to let us know you’ve moved house or simply that you would prefer not to hear from us anymore, they are there to help. cW e will act on your wishes if you don’t want to hear from us or prefer not to receive communications by a particular means. Equally if you would like to know more about how your donations are supporting our work please let us know. You can simply write, phone or email our Supporter Care team and we will act on your wishes. c I f we have permission we may telephone to thank you, update you on our work and to see if you would like to continue your support. Whenever we do this we will always ask if you are happy to take the call before continuing. cW e are especially careful and sensitive when engaging with vulnerable people, the elderly or those who may have been affected by kidney disease.

Please complete and return the supporter data sheet attached to update us with your details and preferences. Call our donation line: 0800 783 2973

RESEARCH ROUND UP // P12

Research round up â&#x20AC;&#x201C; innovative projects funded by you

Your vital donations enable us to fund world-class research into all aspects of kidney disease. These important studies will help us to better understand the condition so we can improve prevention and treatment and ultimately find a cure.

We are funded almost entirely by voluntary donations and every contribution makes an impact on our work. Please help us fund even more ground-breaking projects and make a real difference to the lives of over three million people in the UK threatened by kidney disease. For more information: Visit: www.kidneyresearchuk.org/support-us

Call: 0300 303 1100

Find out more: www.kidneyresearchuk.org

New molecule could form the basis of future kidney treatments We are funding an important two-year study which could herald a new and viable way to prevent kidney damage. Over the last decade, with funding from Kidney Research UK, Dr Kevin Marchbank and his team from the Institute of Cellular Medicine at Newcastle University have developed a new molecule called (FH1-5,18-20). The molecule has been adapted from one of our naturally occurring blood proteins which is known to be essential to prevent some forms of kidney disease. After many laboratory Dr Kevin Marchbank and some animal experiments they have shown that FH1-5,18-20 can protect the kidney. We have now given them a ÂŁ131,345 project grant to help them carry out further tests to assess and improve this function. They also aim to investigate whether the molecule could help protect kidneys from damage shortly after transplantation, improving their longer term outcome. Dr Marchbank hopes that this research will eventually lead to the development of new treatments for patients with inflammatory kidney diseases. He also hopes that the molecule may become part of a package of molecules that can be used to protect donated kidneys immediately prior to transplantation.

RESEARCH ROUND UP // P13

Acute kidney injury study attracts further investment We are funding the next stage of an important study that aims to identify people at risk of developing longterm kidney damage (known as chronic kidney disease or CKD) following an episode of acute kidney injury (AKI).

who have experienced AKI and those who have not.

We are now investing a further £107,000 to enable Dr Selby’s team, who are collaborating with Professor Roz Banks AKI (a sudden (University of reduction in kidney Leeds), to use new function) is very common biomarkers (blood in hospitalised patients, tests) to see if they can often occurring when they find ways to differentiate Dr Nick Selby are unwell from another illness. people who are likely to make In the majority of cases kidney function a full recovery from AKI from those who improves before patients leave hospital. are at risk of developing CKD. They will However there is very little research that initially test a small group of patients follows up the progress of these patients in in order to select the most promising the months and years following AKI to find biomarkers and then expand the testing out if it has any long term effect on their to the entire study group. They also kidney function. hope to extend the monitoring period In 2014 we gave £84,000 to help Dr Nick for this study in order to keep track of all Selby and his team from the Centre for participating patients’ general health for Kidney Research and Innovation, University ten years. of Nottingham and Royal Derby Hospital The study could ultimately lead to new recruit 1,080 former hospital in-patients to ways to halt the development and the ARID study (AKI risk in Derby). The study progression of CKD in patients who have involves two groups of people who will be followed up over a number of years – those sustained AKI.

New diabetes study will have global significance A technique called micropuncture will be at the centre of a new two-and-ahalf-year research project which aims to investigate how the kidney handles glucose during diabetes. Dr Joanne Marks and her team at University College London are the only group in the UK that are able to do this work. They are among just 20 groups worldwide using this technique, which involves the use of a micropipette to make an extremely small puncture in a minute kidney tube (tubule) in order to obtain a sample of its contents. Over three million people in the UK have type II diabetes and its numbers are increasing. Kidney disease is a significant complication of diabetes and can eventually lead to kidney failure. High blood glucose is thought to be the cause of diabetes-induced kidney failure, which accounts for around 20% of patients on dialysis. Dr Marks will use our £172,000 Project Grant to investigate how the kidney handles glucose during diabetes, using rats with the disease. By understanding this process they hope to find potential ways to reduce high blood glucose levels and prevent kidney disease. This may eventually lead to new treatments for diabetes and its complications.

Call our donation line: 0800 783 2973

FOCUS ON... // P14

What a marathon effort On 24 April more than 50 supporters from across the UK will come together as #TEAMKIDNEY to run the Virgin Money London Marathon – the largest fundraising event in the world. They will be among the 35,000 runners who will take on the gruelling 26.2 mile route past some of the capital’s most iconic landmarks. We spoke to some of our amazing fundraisers to discover the inspiration behind their marathon efforts. Laura Bagshaw

Rae Black

Sharon Shuttleworth

Laura Bagshaw will be running her first London Marathon in memory of her friend and former police press officer colleague Nishan Wijeratne, who sadly died from kidney disease in 2014.

Birmingham resident Rae Black already has two successful marathons under his belt but for him the London Marathon is the ultimate challenge.

Last year, marathon novice Sharon Shuttleworth could barely run a few metres but now she can comfortably run for miles.

Running has been a major part of his life for the past five years but it’s far more than a hobby – he’s keeping fit to ensure he can support his wife Shelley who has chronic kidney disease.

“It’s all down to stubbornness really, says Sharon. “Once I set myself a challenge that’s it – there’s no going back.”

For her the challenge is all about taking something positive from such a devastating loss. “Nishan always looked on the positive side of things so I wanted to do something truly positive for him and the London Marathon was the natural choice for me,” says Laura, who lives in Norfolk. “It’s something that I really have a passion for – I want to do it for him, I want to do it to raise money for more kidney research and I also want to do it for me. He’s not here anymore and that’s really hard but the marathon gives me something to focus on. And hopefully he’ll be looking down on the day and spurring me on.

“Shelley was first diagnosed in 2011 and it turned our world upside down,” says Rae. “I decided that I would offer one of my kidneys if Shelley ever needed it and if I was a match. But I needed to get myself in shape. “I began running short distances at first but then my confidence grew and now it’s become quite addictive. The London Marathon has always been top of my bucket list so it’s fantastic that we were able to get a Gold Bond place from a charity that’s so close to our hearts.” Shelley is currently able to manage her condition with medication so there is no immediate need for dialysis or a transplant.

She decided to join #TEAMKIDNEY because husband Craig and daughter Isabelle have Alport Syndrome, a genetic chronic kidney disease which tends to affect males more severely while females may only discover that they have the condition after they have had an affected son. “The charity is extremely important to us,” says Sharon. “It will help us if Craig ever needs a transplant and hopefully research will have found ways to treat the condition by the time that Isabelle is an adult.” Craig, Isabelle and little brother William will be travelling to the capital from Gloucestershire in April to cheer Sharon on.

“I really want to challenge myself and really push myself to the limit so I can look back and say ‘Yes, I did that!’”

“This really is my dream race and with Shelley cheering me on I hope to get a new personal best time.”

“I think the children would like me to ‘win’ the marathon but I will be more than happy to just cross the finishing line – it’ll be such an achievement!”

To support Laura visit her JustGiving page: www.justgiving.com/TwentySix4Nish

To support Rae visit his JustGiving page: www.justgiving.com/rae-black1

To support Sharon visit her JustGiving page: www.justgiving.com/SharonShuttleworth

Nishan Wijeratne and Laura Bagshaw

Find out more: www.kidneyresearchuk.org

Shelley and Rae Black

Sharon and Craig Shuttleworth

YOUR MESSAGES // P15

Stay in touch We’re always keen to hear from our supporters and it’s never been easier to get in touch. You can follow us on Twitter, where we’re @Kidney_Research, and we’re also on Facebook. If you’d like to send us a letter, the address is: Update Magazine, Kidney Research UK, Nene Hall, Lynch Wood Park, Peterborough PE2 6FZ or e-mail: update@kidneyresearchuk.org. This is the letter my dad’s kidney recipient sent to him. Amazing! @Kidney_Research @NHSOrganDonor #DonateLife

Star Tweets

Angelo Joseph @AngeloJoseph

@RigmarGroup took part in @TheBeastRace on 26/09/15 for @Kidney_Research. Find out more at rigmar.co.uk Rigmar @RigmarGroup

Well Done Jake, Stephen and Andrew! £1500 raised for @Kidney_Research. Amazing achievement, such good sports! One Stop Franchise @1StopFranchise

@Kidney_Research candle lit remembering the donor a year ago today that changed our lives @bensley1979 xxxxxxxx Helen Smithy @hsmithy31

FEELING INSPIRED? Fancy following in our runners’ footsteps next year? We’d love to receive your application for a Golden Bond place in the Virgin Marathon 2017 so why not register your details on our website today: www.kidneyresearchuk.org/virgin-london-marathon If a marathon’s not your thing we’ve got many more events to choose from including walks, cycling challenges, overseas treks and parachute jumps. For more information visit: www.kidneyresearchuk.org/get-involved/events

Thanks to our partners at ‘Recycling for Good Causes’ You can donate your used stamps to raise much needed funds for Kidney Research UK. All kinds of stamps are welcome, on or off paper. Simply cut or carefully rip the postage stamp from the used envelope, being careful that you don’t damage the stamp, and once you have a collection pop them in an envelope making sure you have the correct postage to: Kidney Research UK Used Stamp Appeal Recycling for Good Causes PO Box 16992, Sutton Coldfield B73 9YA Recycling for Good Causes will arrange collections for larger quantities of stamps over 10 kilos. That’s about two buckets full of stamps. Call 01827 64076 or e-mail stamps@recyclingforgoodcauses * Please send used stamps only to this address, for all other donations and correspondence please send to our Nene Hall address at the top of the page.

Call our donation line: 0800 783 2973

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