Update Magazine February 2014

Update Issue 3 2014

THE MAGAZINE FROM KIDNEY RESEARCH UK

Our ground-breaking projects have the potential to make a real difference to many young lives in the future PAGE 10

Five ways to stay proactive whilst inactive this Spring

Research round up – innovative projects funded by you

PAGE 08

PAGE 12

KR7665 - Update Spring 2014 v5.2 REPRO.indd 1

Unstoppable Morgan PAGE 14

10/02/2014 14:38:48

Welcome

to issue 3 of Update Magazine It’s spring and this season often makes me think of new beginnings or experiences.

Whether you’ve recently received a kidney transplant and are looking forward to a new you, just signed up for a new challenge that you never thought possible, you’ve become one of our amazing volunteers or are organising your first fundraising event, good luck and enjoy the experience!

Stars shine for us on ICAP Charity Day Oscar winning actor Jim Broadbent and former EastEnders star Stefan Booth helped raise cash to fund research into Polycystic Kidney Disease when they supported us at ICAP’s annual Charity Day on 3 December.

In this issue you can read about some of the research developments we’ve made and how they’ve helped to make a real difference to the lives of people with kidney disease.

This March, we launch our second Go Purple campaign and are encouraging you to don our signature colour and Go Purple! Your support will go a long way to making people more aware of the dangers of kidney disease, and the money raised will help fund vital new research projects.

Read all about our PIVOTAL trial, a world first and the biggest trial we have ever run, on page 6. Also read about unstoppable Morgan and her inspirational story on page 14.

Our magazine is only able to provide you with a glimpse into what we achieve but there is so much more that we would like to be shouting from the roof tops. This is where we need your help to spread the word! Let’s blow our own trumpet; tell your friends and colleagues about us. Whatever you’ve done share your success stories on social media and talk to your local newspaper to celebrate your own fundraising achievements. The more we all do this, the bigger and better we will become.

Jim Broadbent brokering a deal

Thank you once again for your support; enjoy the read, and we look forward to seeing you at this year’s London Bridges walk in July.

Suzanne Engelbert, Acting Editor Stuart and Rachel from Kidney Research UK with Jim Broadbent

Contributors

Printed by

Lindsay Ledden

Print 4 Business Ltd

Allison Parkinson

Contact us

Ainsley Harriott Photographer Matthew Roberts Designed by www.adeptdesign.co.uk

Kidney Research UK Nene Hall, Lynch Wood Park Peterborough PE2 6FZ Tel: 0845 070 7601 Fax: 0845 604 7211 www.kidneyresearchuk.org

Stefan Booth enjoying the day

ICAP, the leading markets operator and provider of post trade risk and information services, invited a host of celebrity charity supporters to their London offices to help broker deals throughout the day. They then donated all the revenues and commissions made to 16 UK charities, including us. Jim closed a deal worth over £50,000 which helped to raise a combined total of £9.5 million.

We will use our share of the cash to fund a three-year project into Autosomal Dominant Polycystic Kidney Disease (ADPKD) – the world’s most common inherited life-threatening condition and the biggest cause of kidney failure in the UK. Researchers based at Cambridge University will use cutting-edge technology to develop potential new treatments for the disease.

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NEWSROUND // P03

Go Purple and save lives Go Purple with us this March and help raise vital funds to find better treatments and ultimately cures for kidney diseases We’re making this colourful annual appeal in the run up to World Kidney Day on 13 March, when doctors, nurses, patients and members of the public will come together to highlight the growing threat of kidney disease. Over three million people in the UK are at risk of the illness, yet it remains one of the UK’s least-known, life-threatening diseases.

We want patients to make a difference Following the fantastic response to our recent patient survey, we are now inviting patients to get involved in our work at local or national level.

Just over 1,000 kidney patients completed our online survey. We have written to them to thank them for highlighting the renal research areas they thought we should focus on and we will be inviting them to continue their involvement through our volunteer programme.

They may choose to help us by raising awareness of our work in their own communities, representing other patients on some of our panels and advisory boards or becoming a member of a clinical study group to help develop research proposals.

Our intention is to increase patient involvement in all of our work and the survey findings will be used in our planning.

We are encouraging people of all ages to Go Purple by organising purple-themed events across the UK. Your support will go a long way to making people more aware of the dangers of kidney disease, and the money raised will help us fund vital new research projects.

We’ve created a Go Purple pack of ideas to get you started. Register for your free pack and find out how to get involved at www.kidneyresearchuk.org/gopurple

We are also sharing the findings with key national organisations including The Renal Association, the British Renal Society and the National Kidney Federation and will be talking about our survey at the Kidney Week conference in Glasgow end of April.

Don’t forget to send photos of your events to: gopurple@kidneyresearchuk.org We’d love to see what you got up to.

Advent Procession raises almost £3,500 Our annual Advent Procession at Peterborough Cathedral helped raise almost £3,500 for kidney research through donations and merchandise sales.

The cathedral provided a stunning backdrop as over 700 people attended to hear readings and sacred choral music from the Cathedral Choir.

Our Southern Fundraising Manager Henry Kimbell collects the cheque from Liveryman Mrs Annabel Lang

Sensational support from The Saddlers The Worshipful Company of Saddlers has raised an impressive £6,153 after adopting us as their charity of the year. ‘The Saddlers’ is one the oldest City of London Livery Companies. Members raised funds in a variety of ways, from general donations to a dedicated cycling team known as the ‘Sore Saddlers’ who took to the streets of Henleyon-Thames for sponsorship.

website NEW launches!

Over the past few months we’ve been working hard, redesigning our website. We’re pleased to announce it’s now live! We wanted to create a better user experience for our supporters, making it easier to find the information you’re looking for. Head over to www.kidneyresearchuk.org to see it in all its glory!

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10/02/2014 14:38:54

HOW YOUR MONEY’S HELPED // P04

e r a We ling the t t a b

s e g p su r bu Dr Rachel Floyd

We are searching for new ways to fight potentially fatal superbugs before antibiotics become completely ineffective.

You are helping us to invest over £190,000 in a three-year research project that hopes to find new treatments for urinary tract infections (UTIs) – a growing problem that currently affects around half of all women in the UK and is becoming increasingly resistant to antibiotics.

Project lead Dr Rachel Floyd, from the University of Liverpool, explains her team’s vital work: “UTIs are a growing and painful problem that affect many women around the world, but they’re one of those conditions that people tend to brush over. A recent Kidney Research UK survey of over 1,000 women showed that over half had experienced one or more UTIs and of those women, 58% usually took antibiotics to treat the infection.

The bacteria E. coli causes 85% of UTIs but more and more strains of E. coli are becoming resistant to antibiotics, meaning infections are becoming more difficult to treat.

Kidney infections can occur if the UTI spreads to the upper urinary tract, and can lead to permanent kidney damage. In rare cases the infection can become life-threatening.

Only now are we realising that we are running out of treatment options and we need to do something about it quickly before all current antibiotics become completely ineffective.

Our research will look at how E. coli can move to the kidneys and cause damage.

Previous studies by other groups looking at animals have suggested that E. coli can ‘hide’ inside cells lining the bladder. This makes antibiotics ineffective and means the immune system doesn’t respond effectively. Bacteria aren’t properly cleared from the bladder, which may be why some people get recurrent UTIs. We will investigate this as part of our research, using sections of ureters (the tubes that carry the urine to the bladder) from healthy people who have donated them for research. The infection inside the cells of the urinary tract will be tracked to find out whether bacteria do indeed hide.

We’ll then use these samples to study how bacteria can affect the ureter, causing an infection to spread. We will try to pinpoint the specific genes in E. coli that are responsible for infection and then try and find a way to stop the process of infection altogether.”

The next step Rachel hopes her research will identify specific molecular processes that drug development companies could exploit when formulating new treatments for UTIs. She says: “We hope to be able to say ‘these are the factors that we think are responsible for causing UTIs. Can you develop something specific that will stop this happening?’”

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HOW YOUR MONEY’S HELPED // P05

We hope to be able to say ‘these are the factors that we think are responsible for causing UTIs. Can you develop something specific that will stop this happening?’

Case study - Kelly Kelly suffers recurring UTIs. She nearly died after an antibiotic-resistant strain of the infection spread to her kidneys and from there into her bloodstream, causing a potentially fatal condition called urosepsis. Kelly was rushed to intensive care and spent ten days in hospital.

“My pulse was racing, I felt faint and had severe pain in my abdomen. It was the worst pain I’d ever had. I thought I was going to die. Having been through what I’ve been through, I really think we need to use antibiotics responsibly – or we will all be paying the price.”

UTIs

the facts

Women are most vulnerable to UTIs because they have shorter urethras.

Pregnant women, diabetics, the elderly and patients with catheters are especially prone to infection. Not all UTIs can be prevented but the best way to avoid them is to: c drink plenty of fluids c wipe from front to back after going to the toilet to prevent the spread of bacteria from the gut If you develop a UTI, see your GP if: c your symptoms have lasted for over five days or suddenly get worse c you are pregnant or diabetic c you develop a high temperature

We need your help

p

We’re forced to turn down four o ut of every five proposa ls for new pro jects because we don’t have th e funds to support th em.

If you want to contribute to wards research that really chang es lives, please make a do enclosed form nation using the or at: www.kidney researchuk.o rg/donate

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10/02/2014 14:39:01

THE BIG INTERVIEW // P06

We are part of PIVOTAL – a ground-breaking trial of worldwide importance We are funding a ground-breaking clinical trial that is investigating the optimum amount of intravenous iron that kidney patients on dialysis should receive.

The four-year trial will involve over 2,000 patients, together with clinicians from more than 40 renal units across the UK. It will investigate the effects of giving two different doses of intravenous (IV) iron to chronic kidney disease patients on haemodialysis (HD).

The Proactive IV irOn Therapy in haemodiALysis patients (PIVOTAL) trial is being led by Professor Iain Macdougall, Professor of Clinical Nephrology at King’s College Hospital, London, and chair of the Anaemia Clinical Study Group.

C

Kidney patients on dialysis are deficient in iron because they don’t absorb enough iron from their diets, and then they lose too much iron from the body.

Professor Iain Macdougall

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THE BIG INTERVIEW // P07

Here Iain tells us why this £2.5 million landmark study is so important.

Q

What makes PIVOTAL so unique?

This is the first trial of its kind. It is the largest clinical trial that has ever been conducted in renal units in the UK and the approach used in this study has never been done before – anywhere. We’re leading the way on this worldwide.

Q

Tell us about the study?

Kidney patients on dialysis are deficient in iron because they don’t absorb enough iron from their diets and then they lose too much iron from the body.

All patients are given iron intravenously via their dialysis machines. They have to receive it this way because iron tablets don’t work for them.

We don’t yet know if it is better for patients to receive a lot or a little amount of iron intravenously, so we will be working with 2,080 patients in more than 40 renal units across the UK to assess the effects of giving high doses of iron to some patients, and low doses to others. Then we’ll look at the differences between the two groups.

Kidney Research UK is helping to deliver and drive the PIVOTAL trial, supported by an unrestricted grant from Vifor Fresenius Medical Care Renal Pharma Ltd. The company is also providing all the iron for the study, free of charge.

Q

What will you be measuring?

We will be measuring a lot of different things, including the risk of major events such as heart attacks, strokes, infections, heart failure and even deaths. We will also look at changes in a number of blood tests, as well as the quality-of-life of the patients in the trial. Finally, we will examine how much Erythropoietin (a hormone injection given to virtually all dialysis patients for anaemia) patients will need – maybe one group will need less than another.

Q

When did the trial start?

The study officially started on 19 November 2013 and will continue for the next four years.

Q

A trial of this size obviously takes a lot of planning and organisation.

Who is working with you?

There are many people to whom I owe a huge debt of gratitude for making this happen, including many individuals from Kidney Research UK, the King’s Health Partners Clinical Trials Office, and the Glasgow Clinical Trials Unit. Special thanks should also go to Claire White, the PIVOTAL Clinical Trial Manager, who has worked tirelessly in setting up the huge number of sites across the UK that such a large trial demands. And, of course, the 2,080 patients across the UK and the principal investigators and research nurses from all the participating renal units.

Q

What are your hopes for PIVOTAL?

I am confident that we can achieve great things with this trial. There is already huge interest internationally in PIVOTAL, and although it will be several years before we will know the outcome of the study, I think we can be confident that the results will be of interest to all healthcare professionals looking after dialysis patients worldwide, as well as to the patients themselves.

y

d tu

s e s

Ca

Deborah is part of the PIVOTAL trial London resident Deborah Stevens is one of the patients involved in the PIVOTAL trial. She first experienced kidney problems 14 years ago and was put on dialysis in November after her kidney function dropped below 9%. She currently receives dialysis three times a week at the King’s Renal Unit in Sydenham, south London – a satellite unit run by King’s College Hospital – and is now training for home dialysis.

Deborah says: “I was actually on dialysis when one of the trial organisers called to tell me about PIVOTAL and asked me if I wanted to get involved. I said ‘yes’, and then a renal research nurse came to see me to give me written information about the trial. At the next dialysis session there was some paperwork for me to sign.

“It was quite a coincidence really because I had been wondering how the doctors knew how much iron to give to people. It seemed to me that everyone was getting the same amount of iron but you get different types of people. So when they mentioned the trial I thought ‘yes’, it would be nice to find out if people do need different amounts of iron.

I’ve never been involved in a clinical trial before and I hope that, by being part of the PIVOTAL study, I can help other people on dialysis in the UK and around the world.

“I started the trial in December and I’m receiving monthly injections of iron.”

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10/02/2014 14:39:04

HEALTH & LIFESTYLE // P08

Five ways to stay proactive whilst inactive this Spring There are all kinds of things you can do this spring to stay proactive while you’re inactive. Whether you’re on dialysis or you’re just relaxing, here are some suggestions to make the most of your time.

Listen to an audiobook

Learn a language online

Write a book

If you haven’t got round to reading that best-seller yet, put it at the top of your list this spring. Even better, download an audiobook and listen while spending time in the garden admiring the spring flowers. We asked around the office, and some recommendations include: any of the Harry Potter series read by Stephen Fry, Life of Pi by Yann Martel, and The Golden Compass by Philip Pullman.

If you’re spending the spring dreaming about your perfect summer holiday, why not learn a language in preparation?

Whether you want to be fluent in Finnish or speak smooth Spanish, the BBC Languages website can help you. The website has lots of free resources, and you can choose from 40 languages. You can even listen to MP3s to perfect your pronunciation! Just visit: www.bbc.co.uk/languages

Author Al James has written a series of stories for our website. He says: “We’ve all got something to say. Why not try your hand at writing? Base what you write on what you know and what interests you: detective fiction, mystery, science fiction, romance; or human relationships based on the lives people live, like I do. You can express yourself through the lives of the characters you create. Don’t be too self-critical; write what comes into your head and correct later. It can be a great release for your feelings!”

Schönen Urlaub! Or, in English: have a great holiday!

To read Al’s stories, visit: www.kidneyresearchuk.org/blogs/ short-stories-by-al-james

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HEALTH & LIFESTYLE // P09

Start a blog

Start a craft

Whether you want to share your recipes or talk about life as a kidney patient, a blog is a great way to spread the word and find others who share your interests. You can set up a blog easily using free websites like WordPress.

Why not start crafting this spring?

From cross-stitch to crochet, knitting to sewing, there’s a myriad of crafts to choose from. You can find crafting magazines in the shops which might help you get started, and it’s always worth checking out YouTube for free tutorials.

We have five bloggers on our website, who write about everything from their own experiences with kidney disease to the research being conducted into the illness.

You can read more from them by visiting: www.kidneyresearchuk.org/media/blogs

Crafts can be a great way to raise money too. Natasja, one of our supporters, is a crochet queen, and donates 10% of the sales of her crocheted goods to Kidney Research UK!

Don't forget !

h free kidney healt ur o ke ta n ca u Yo should have your u o y if e se to k chec ked. Just visit: ec ch n io ct n fu kidney k.org/healthu ch r a se e r y e n www.kid ney-health-check information/kid

te the dish

How to crea

Ainsley Harriott’s Char Char chicken and leek pasta Serves 4

Shopping list c 350g/12oz spaghetti

arriott

H Ainsley

c 1 pack of baby leeks, cooked and refreshed (normal leeks if not available) c 6 tbsp olive oil c 2 boneless, skinless chicken breasts cut into 6 strips

dle pan g 1. Heat a grid pan, accordin i in another tt he ag sp e th ook 2. C instructions to the packet ok in tbsp of oil, co leeks with 1 es on each side until e th sh ru B

3. r 2-3 minut griddle pan fo cover and set aside d, re slightly char grate over medium bowl, sp of a in n ke ic ch lace the stir in 1 tb 4. P e lemon and pper. the zest of th l, season with salt and pe l ti el w un e ix m each sid olive oil, 2-3 minutes on r fo ill gr rCha n golden brow Mix together the dressing. e lemon, e ak m le hi of th 5. Meanw oil, the juice with the remaining ic and tarragon; season rl ga , an Parmes er salt and pepp n. Pour turn to the pa ugh the re d an a st rain the pa g and gently fold thro 6. D sta sin over the dres s. Divide between four pa an. ek es le m d chicken an avings of Par rnish with sh bowls and ga Enjoy .

c 1 lemon c 75g/3oz Parmesan, grated, plus extra to serve c 1 garlic clove crushed c 1 tbsp tarragon, roughly chopped

Jan Fli at the nt, renal dieti NHS foRoyal Free L tian o undati on trusndon t

Jan says: 'Ainsley,s recipe is relatively low in potassium and salt, so would be suitable for all patients with CKD’.

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10/02/2014 14:39:12

FOCUS ON... // P10

Protecting our young We’re fighting childhood kidney diseases on all fronts.

Your support allows us to fund the finest research teams from across the UK and, together, we are moving ever closer to finding cures.

Here we focus on four ground-breaking projects that will make a real difference to many young lives.

There are currently more than 120 children in the UK on conventional HD. If our study shows that HDF is superior to HD we hope it will be adopted as the preferred type of dialysis for children in the UK.

We are searching for a cure for glomerular disease

A safer way to monitor kidney blood flow

Dr David Long from the University College London Institute of Child Health is investigating the potential causes of glomerular disease which leads to end stage kidney failure in children and adults. We have given £112,272 to fund his two-year research project. He explains:

Professor Isky Gordon and his team at Great Ormond Street Hospital (GOSH) and University College London Institute of Child Health are developing a new method of MRI scanning that uses a patient’s own blood to track kidney blood flow.

“There are probably around 1,000 children in the UK with kidney disease and many of them will have some sort of problem with the glomerulus – a cluster of microscopic blood vessels in the kidney that help to filter waste products from the blood.

“We’ve discovered that these fragile blood vessels become damaged when the balance of a group of proteins responsible for controlling blood vessel growth (angiopoietins) become disrupted. We, along with Kidney Research UK, are now working with the assistance of pharmaceutical companies on treatments to restore the balance of these proteins and get the glomerulus working normally again.

“What’s exciting is that there are a number of cancer and heart disease drugs already available to control blood vessel growth. This means we can use the research already done to develop these drugs to help create new treatments for kidney patients.”

We have given £78,786 to fund Dr Gordon’s three-year research project. He explains: “At the moment no one routinely looks at kidney blood flow in children because conventional scanning would expose them to very high levels of radiation. Our research hopes to offer – for the first time – an easy, non-surgical no-radiation technique.

“Our MRI scanning system uses the patient’s blood as the dye – a method first used by scientists studying the brain but never applied to children with kidney disease before. Using a process called Arterial Spin Labelling (ASL), we label a patient’s blood and follow its flow through the kidney.

“In initial trials on patients with acute renal failure the results were hard to interpret because of their impaired blood flow. We now aim to create new programmes for the MRI machine to help us get data differently when the patient is in the machine. We also plan to develop better computer software that will enable us to analyse data for patients with good or bad kidney blood flow.

“If successful, this new method could be used to monitor the effectiveness of treatments, recognise when a patient’s kidney function is deteriorating and track blood flow following kidney transplantation.”

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FOCUS ON... // P11

Case study

We are hoping We are helping to improve life children with expectancy of bladder problems children on dialysis Bill Newman is Professor of Translational Dr Rukshana Shroff and her team at Great Ormond Street Hospital (GOSH) have just started a three-year study which will monitor 150 children on long-term dialysis in 25 locations in the UK and Europe. We have given them £200,000 to compare children on haemodialysis (HD) with children on Haemodiafiltration (HDF), a newer form of dialysis. Rukshana explains: “Some children on HD die of heart disease in their 20s and 30s due to complications, including thickening of the arteries and accumulation of kidney toxins in the body.

HDF is a more effective way of removing kidney toxins and excess fluid from the body.

It is gentler on the body and better tolerated than HD. “HDF can increase survival rates in adults by more than 30% and improve heart and blood vessel function. We want to find out if HDF is better for children, too.

“We will be using very high resolution ultrasound to look at the children’s blood vessels in great detail. We will also monitor growth and nutrition, blood tests and quality of life.

“There are currently more than 120 children in the UK on conventional HD. If our study shows that HDF is superior to HD we hope it will be adopted as the preferred type of dialysis for children in the UK.”

Genomic Medicine at St Mary’s Hospital at the University of Manchester. He wants to discover why some children’s bladders don’t function properly and cause kidney problems. We have given him £179,587 to find out more. He explains: “Urofacial syndrome (UFS) is a very rare inherited condition, which results in the incomplete emptying of the bladder and subsequent kidney damage. We have found two genes so far called HPSE2 and LRIG2 that, when they are not working properly, cause this condition. We have been studying if these genes are responsible for other more common forms of bladder problems and for reflux disease which causes urine to flow back into the kidneys and affects more than one in 100 children.

“At present, we do not know how many children have changes in this gene or what the gene does.

Our three-year study has made great progress to answer these questions and provide important information so that children with bladder problems – even children diagnosed with UFS while still in the womb – can get the correct diagnosis for their problems and get the right treatment much quicker.”

Alex Gibbs is 11 years old, and has a condition called MGPN Type II (also known as Dense Deposit Disease), a rare type of kidney disease for which there is no cure.

In January 2013, Alex had a kidney transplant to give his body a break from dialysis and allow him to grow.

Before his transplant, Alex was either on home dialysis, attached to his dialysis machine for ten hours a night, or undergoing haemodialysis.

Haemodialysis involved travelling to Nottingham three times a week for treatment lasting up to five hours at a time, meaning he was only at school for two days a week.

It’s likely that Alex’s condition will attack his new kidney, meaning it might only last a couple of years. But, for the time being, it means Alex can play and eat like his friends, and he’s not as restricted in what he can do.

Our research could find a better treatment for Alex’s condition, and gives hope to Alex and his family that one day a cure may be found.

But this won’t be possible without continued funding.

Help us to help more children like Alex You could help us fund even more research projects that really change young lives.

Please make a donation today at www.kidneyresearchuk.org/donate or call our donation line: 0800 783 2973. Thank you.

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10/02/2014 14:39:16

RESEARCH ROUND UP // P12

Research round up – innovative projects funded by you Your kind donations have helped fund these three world-class research projects.

Their findings will help to make a real difference to the lives of people with kidney disease in the UK and abroad.

New study could prevent drugs causing toxic side-effects We are funding a three-year study which will look at a new way of examining kidney tissue samples in order to understand how and why some drugs cause toxic side-effects.

Many commonly used drugs have toxic side-effects that can cause serious damage to the kidneys, but it is not yet known exactly how the damage is caused.

Dr Claire Peppiatt-Wildman and her team from the University of Kent will use the £198,252 project grant to study a new method of examining live kidney tissue samples that have been exposed to drugs already known to cause kidney damage.

Dr Peppiatt-Wildman has pioneered a new research technique in which slices of rodent kidney are kept alive for up to four hours in the lab whilst being examined using high resolution multi-photon microscopy – a technique that uses light particles to capture microscopic high resolution threedimensional images.

These microscopic images of blood vessels in the kidney were captured using the high-resolution multi-photon microscopy technique.

The study will focus on damage caused by cisplatin (CP) – a commonly used anti-cancer drug, that is notorious for causing toxic side-effects in the kidney. Live kidney slices will be treated with CP and using the high-resolution microscopy technique, video images of live kidney cells will be examined to discover exactly how CP damages the cells within the kidney.

The team hopes their research will lead to a better understanding of the ways in which commonly prescribed drugs alter kidney function. This could help prevent and treat common drug side-effects in the future, so drug associated kidney damage might be minimised.

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RESEARCH ROUND UP // P13

Photograph of a kidney biopsy section showing inflammation in the filtration unit (called the glomerulus) and a skin rash in a patient with vasculitis.

A new way to detect and prevent severe kidney injury A white blood cell protein called calprotectin could play a vital role in detecting severe kidney damage, and could even help to prevent it.

New study aims to make kidney transplants last longer We are funding a two-year study to investigate new ways of treating Polyomavirusassociated nephropathy (PVAN) – a major cause of kidney transplant rejection.

PVAN is a serious condition that attacks transplanted kidneys, causing massive cell destruction. It is caused by a virus called BK polyomavirus (BKV) and affects up to 10% of all kidney transplant recipients. Patients with suppressed immune systems are more susceptible to the condition, so numbers will grow as more people receive organ transplants.

There is no effective treatment, other than reducing the dosage of a patient’s immunosuppressive drugs to allow their immune system to battle the virus. However, this greatly increases the risk of kidney rejection.

Dr Andrew Macdonald and his team from the University of Leeds will use the £127,237 project grant to create new chemical compounds to attack a protein in the virus called agnoprotein.

They will then test their effectiveness by introducing the compounds to kidney cells infected with the virus to see if the compounds can stop BKV developing further.

This research will ultimately lead to the development of new drugs that will offer safer ways of treating patients with PVAN and make kidney transplants last longer.

Severe kidney injury is common among patients with vasculitis (inflammation of the blood vessels). The condition can damage the specialised small blood vessels in the kidney as well as other organs, and is a common cause of both acute and chronic kidney disease. It affects approximately 1,000 UK patients a year and, in total, over 16,000 UK patients are currently living with the disease.

Vasculitis can flare up at any time, even when patients are on immunosuppressive treatment, or when being treated with dialysis or following a kidney transplant. However, there is no definitive way of predicting who will have a relapse, or when.

Professor Alan Salama and his team from University College London may have made a significant breakthrough. They believe that the white blood cell protein calprotectin can indicate whether a patient is likely to get relapsing vasculitis, and we have given them £126,745 to find out more.

Their three-year research project will also investigate whether kidney damage caused by vasculitis could be prevented altogether by stopping calprotectin working.

Professor Salama hopes that this research could lead to a new way of detecting and treating vasculitis in kidney patients.

We need your help

cing us to Funding shortages are for ry five turn away four out of eve that could research ideas – projects new lead to a potential cure or e. eas dis y ne kid for treatment more innovative projects Please help us fund even to people’s lives. that make a real difference 00 783 2973 Call our donation line: 08 at Make an online donation rg/donate www.kidneyresearchuk.o

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FOCUS ON... // P14

Unstoppable Morgan Morgan Wishart (14) was first over the finishing line at our recent Glasgow Bridges Walk – just three months after being diagnosed with end stage renal failure.

And, just like the seven mile fundraising walk, Morgan is taking her life-changing condition in her stride.

The Fife teenager has peritoneal dialysis (PD) at home, nine hours a night, seven nights a week. She must take daily medication, has a restricted diet, must weigh her food and monitor her fluid intake and is currently undergoing tests and counselling before she goes on the transplant list.

While she deals with these momentous changes Morgan attends school; cares for her pets; goes to youth club; ice skates; shops with her friends and sometimes has a friend over for a sleepover – just like any other typical teenager.

“She totally amazes me every single day,” says her mum Lynn. “She just doesn’t let her condition hold her back.

Morgan’s renal failure has caused renal bone disease which can make bones get weaker and thinner as a result of mineral loss. To combat this Morgan takes vitamin D and calcium supplements, must limit fruit and vegetables rich in potassium and has to avoid some favourite foods including tomatoes, chips, crisps and dairy products.

“It was really good winning the Glasgow Bridges Walk. Me and my two friends got right at the front at the start and we ran ahead. People said ‘they’re never going to make it’ because we were running, but we did and we crossed the finish line together. My legs were sore for three days after but it was worth it!”

“Sometimes I just want to be able to eat and drink anything I want and be able to stay at my friends’, but most of the time I’m not bothered,” says Morgan.

She totally amazes me every single day. She just doesn’t let her condition hold her back.

“Her diagnosis came completely out of the blue. She’d had a pain in her knee for about a year. We’d seen doctors, physios, and a podiatrist, and eventually went to hospital for x-rays and an MRI scan. The specialist told us that Morgan ‘baffled’ him but in his opinion the ‘problem’ would sort itself out when Morgan stopped growing. He took some bloods and arranged to see us three weeks later, but within three hours I got a call to take Morgan straight back.

The next thing we knew we were in Yorkhill Children’s Hospital, Glasgow in a complete daze. Morgan had her PD catheter fitted soon afterwards and we began a life we could never have imagined.”

Morgan (centre), mum Lynn and sister Holly at our Glasgow Bridges Walk 2013

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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.

Star Tweet The @raokidney frock swap raffle - November 2013 event raised over £2000 for @Kidney_Research Sean Maher @SeanMaher7 (04.01.14)

Dear Kidney Research UK, I have enclosed a cheque for £50. My name is Adam and I am 15 years old.

My local Rotary Club sponsor our school’s Achiever of the Year awards – the winner receives an award, certificate and £50 for a charity of their choice. I recently won the award as Year 10 Achiever of the Year.

R STA R! TE LET

I chose Kidney Research UK as my charity, because in October/November of 2003, I had an operation on my left kidney. The problem was my tube to the bladder on both sides was small and didn’t drain properly. The one on the right corrected itself, but without medical correction on the other side, I would have to take antibiotics and I wouldn’t be able to take part in sport. If the operation hadn’t happened, I would need a transplant later in life. Since that day I am grateful to your charity and the research you do, as without it my life would be a struggle.

@Kidney_Research I ran my 1st 10k in November.

This time last year I could only manage to run for 1 minute at a time!

I will be doing stuff for Kidney Research UK later in life as it is of course an organisation close to my heart. I would like to say thank you to everyone involved at your charity, as without the amazing jobs you all do, people like me would be suffering and missing out.

Vicki Windslow @VickiWindslow (30.12.13)

Adam McAnoy

Star Facebook post “Fenella raised £485.28 at her Christmas stall!!!

So proud of her, thanks to family & friends for support & donations xx” Fiona Sharp (02.12.13)

“I recently became a ‘Community Champion’ with this fab charity!! I’m pleased to be given the chance to go out in my local community and share the awareness of kidney disease and the signs and symptoms.”

Amanda Ball (10.11.13)

Health Questions Answered “I was recently told I had diabetes and that one of the side-effects can be kidney disease. I’m really worried, is there anything I can do?”

Kidney disease is a common side-effect of having diabetes. Doctors are well-trained in preventing these problems from developing or getting worse and they will focus on regularly checking and controlling your blood sugar levels and your blood pressure. They may even choose to adjust dosages of certain medicines. There is lots you can do to help yourself though, by taking regular exercise, keeping your weight down, limiting how much salt you eat and not smoking.

“Help! I’ve been told I have stage 2 kidney disease but I’m not sure what that means.”

There are various stages of chronic kidney disease (CKD). In order to determine which stage of CKD a person is at, the glomerular filtration rate (GFR) of the kidneys is measured. This tells how quickly the kidneys are cleaning the blood and is reported in millilitres per minute. A normal GFR is greater than 90 mL/min. In stages 1 and 2, there are often few symptoms. If at this stage CKD is caught early, medications and lifestyle changes can slow down its progress and even stop or reverse CKD depending on its cause.

For more information about kidney disease, visit the health information pages on our website: http://www.kidneyresearchuk.org/health-information

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Go Purple and save lives Go Purple this March and help raise vital funds in our fight against kidney disease Our colourful annual appeal is taking place in the run up to World Kidney Day, on 13 March when doctors, nurses, patients and members of the public will come together to highlight the growing threat of kidney disease. Over three million people in the UK are at risk from the illness, yet it remains one of the UK’s least-known, life-threatening diseases.

Get involved We are encouraging people of all ages to ‘Go Purple’ throughout March 2014 by organising purple-themed events across the UK. Your support will go a long way to making people more aware of the dangers of kidney disease and the money raised will help find better treatments and ultimately cures.

There are lots of ways to Go Purple! We have produced a special Go Purple pack full of ideas to get you started. Register for your free pack now by visiting:

www.kidneyresearchuk.org/gopurple Why not hold a purple fundraiser at your school, workplace or community group?

A purple bake sale, a purple raffle or even just dress up in purple – anything purple to help the charity find better treatments and ultimately cures for this silent killer.

Don’t forget to send photos of your events to: gopurple@kidneyresearchuk.org we’d love to see what you got up to.

Registered charity no. 252892. Registered Scottish charity no. SC039245 Registered company no. 905963 Registered in England and Scotland Registered Office: Nene Hall, Lynch Wood Park, Peterborough PE2 6FZ.

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