Update Autumn 2011 by Kidney Research UK

Focus on: diabetic kidney disease

Could fruit cure kidney disease?

Against the odds: Brian’s story

PAGE 06

PAGE 08

PAGE 10

Update

Autumn 2011

T HE MAGA ZINE FROM KIDNEY RESEARCH UK

Stefan’s story:

EastEnders favourite joins Kidney Research UK as charity ambassador PAGE 04

ALSO INSIDE... Our top 5 tips for healthy kidneys the latest groundbreaking research projects

Welcome to the autumn edition of Update

“Go that extra mile, it is never crowded there.” I heard this on the radio recently. It’s stuck with me ever since. The team at Kidney Research UK have become accustomed to engaging with inspirationally brave people on a daily basis. Even though speaking to kidney patients and their families is commonplace for us, their stories of positivity in the face of adversity and the drive to succeed when the odds are stacked against them never cease to astound us. So while in a reflective mood, if we look at all the work our volunteers, supporters and researchers perform, that extra mile is certainly becoming less empty for us here at the Charity. This issue of Update is full of stories about people pushing themselves further for the Charity. Our cover story on our new celebrity ambassador – EastEnders star Stefan Booth – highlights his sheer will to turn his personal tragedy into something which could help others. Turn to page 04 for the full story. Chris Farrell (page 02) went 199.9 extra miles to raise money for us and smash a record. And this determination is not just limited to people: on page 10 you’ll read Brian Marchant’s story, where his kidney transplant went far more than the extra mile and lasted almost 40 years! If like me all this talk of inspirational people has got you thinking, then why not turn this into something positive? There’s plenty of ways you can support the Charity. Let’s make that extra mile a crowded place for Kidney Research UK. What will you do?

Rachel Andrews, Editor Contributors Mathew Waik Neil Turner Neerja Jain

Photographer Matthew Roberts

Printed by Print 4 Business Ltd

Kidney Research UK Nene Hall Lynch Wood Park Peterborough PE2 6FZ Tel: 0845 0707 601 Fax: 0845 6047 211 www.kidneyresearchuk.org

Find out more at: www.kidneyresearchuk.org

The cold, hard facts about kidney disease In late spring, we commissioned an online video to help raise awareness of kidney disease among internet users. The short film, entitled Your Blood is Poison, was released in May and documents the creation of two large kidney ice sculptures that later went on display in London’s Potters Fields Park. Just over one minute in length, the video seeks to educate viewers as to how important the kidneys are, by highlighting the fact they filter 180 litres of our blood every day. If you’d like to watch the video simply visit: www.youtube.com/KidneyResearchUK

News Bite

A study conducted by researchers at Oxford University has found that a quarter of all heart attacks, strokes and operations to open blocked arteries could be avoided in people with chronic kidney disease by using statins to lower blood cholesterol levels.

Record-breaking fundraising Chris Farrell, a university graduate from Lincoln, has smashed a world endurance record for rowing while helping to raise more than £1,200 for Kidney Research UK. Chris, 23, set out to break the record for lightweight continuous rowing on Friday 1 July – attempting to row on an indoor rowing machine for more than 30 hours. After almost two days, he went on to eclipse the previous record by rowing non-stop for an astonishing 41 hours – covering 199.9 miles. Chris is all too familiar with the devastating effects that kidney disease can have on people’s lives, having lost his grandfather to the illness in 1992. As a result, he was determined to do something that would help fund further research into the condition. “I hope the money I’ve raised will help to make a real difference,” explained Chris. “I’d like to think it will benefit other families affected by kidney disease and maybe even help put a stop to the illness once and for all.”

The latest news and views

In Brief

Going the distance for charity In July, Kidney Research UK returned to London to host its hugely popular London Bridges Walk challenge. Now in its sixth year, the walk is the Charity’s largest fundraising event, attracting supporters from across the UK and even overseas. This year more than 1,000 people registered for the walk, with hundreds more signing up to take part on the day. Following a mass warm-up led by former EastEnders actress and fitness enthusiast Nadia Sawalha, the walk was officially started by Kidney Research UK Patron Angela Rippon OBE. After cutting the start tape Ms Rippon spoke of her pride at seeing so many people turn out to support the Charity: “London Bridges Walk is a wonderful event because it attracts Kidney Research UK supporters from all over the country. You can see from the number of purple shirts here today just how much the Charity means to people.”

Happy birthday Jaiden!

One of the most successful London Bridges Walks in recent years, the event is expected to raise more than £100,000 to help fund further research into kidney disease. To register for the 2012 London Bridges Walk, please visit: www.kidneyresearchuk.org/londonbridgeswalk

Supporters Paul Jones and Phil Pugh.

Angela Rippon OBE.

Nadia’s warm-up.

Birmingham Peer Educator Project

You may recall the heart-warming story of little Jaiden Quigley from the last issue of Update. After being born with serious kidney problems, Jaiden, aged two, received a life-saving kidney transplant from his father. We were so delighted to hear the transplant was successful that we sent a letter to all our supporters to share the good news! Without the medical breakthroughs that you’ve helped to fund over the last 50 years, doctors simply wouldn’t have had the know-how required to keep Jaiden alive. With Jaiden’s third birthday just around the corner, the letter contained a birthday card for the courageous little boy, which supporters were encouraged to personalise and send back to us. We were overwhelmed by the response we received, with more than 500 cards containing lovely messages and drawings returned to the Charity, before being forwarded on to Jaiden and his family.

Young people in Birmingham are leading the fight against kidney disease in their local area, thanks to a new community health project being run in partnership with Kidney Research UK.

The family received the cards shortly before relocating to Australia and said they were “unbelievably grateful” for the kindness and generosity that had been shown Kidney Research UK Marketing Team with towards them. Jaiden’s Cards.

With kidney failure up to five times more common among people from black and minority ethnic communities, it’s hoped these young Peer Educators will succeed in talking directly to these ‘at risk’ communities – informing other youngsters about the kind of preventative measures they can take to safeguard themselves against the illness.

Ten youngsters from the youth group Commpact have been selected to take part in the scheme, which has seen them receive specialist training from the Charity so they can help raise awareness about kidney disease among their peers.

Call our donation line: 0800 783 2973

Cover Story

Stefan Booth

Making a difference Why Stefan Booth won’t stop until he’s helped us find a cure for kidney disease... EastEnders star Stefan Booth knows all too well how devastating kidney disease can be, having lost his mother, Michèle, to polycystic kidney disease (PKD) in April this year. PKD is a genetic form of kidney disease, which causes cysts to develop in the kidneys. These cysts gradually replace normal kidney tissue, enlarging the organs while reducing their ability to function properly – eventually causing them to fail altogether. Now an ambassador for Kidney Research UK, Stefan talks to us about his experiences and what he hopes to achieve in his new role. Q: Thanks for taking time out to talk to us, Stefan. Can we start by asking when it was you first became aware of your mother’s condition? A: Mum was actually diagnosed with PKD before I was born. It wasn’t until about the time I turned eight – when I was old enough to notice how it affected her ability to move around and keep up with me, my brother and sister – that I became fully aware of her illness. She would often have to opt out of things that were too strenuous for her and my Dad would step in instead. She was extremely brave and very conscious of not wanting us kids to see her unwell – to protect us. Q: How did her condition affect your relationship, growing up? A: It sounds strange but her illness actually enhanced our relationship in some ways. It was extremely difficult to see her so unwell but it brought us much closer together. She was on a cocktail of different drugs that had some pretty nasty side effects and her health deteriorated even further when her kidneys got really bad. I wanted so badly for her to get better and became very nurturing of her. I consider myself today to be a very compassionate person and

Find out more at: www.kidneyresearchuk.org

Stefan Booth

that’s something I’d definitely attribute to Mum and the time we spent together. She was a constant source of inspiration to me growing up and will be for the rest of my life. Q: Was there any point at which your mum’s condition improved? A: Yes – albeit briefly. Mum was lucky enough to have a kidney transplant in 1992 when I was about 13. I’ll forever be grateful to the family of the person whose kidney she received – even though I’ve never actually met them. The transplant gave her a new lease of life and was a huge blessing. It extended her life and gave her the precious years she needed to see her children grow up and meet her grandchildren. It bought us more time together but didn’t come without its own set of problems, as many people will know. What I’ve come to learn and what I think more people need to understand is that a transplant isn’t a cure for kidney disease. Although it bought Mum more time, it couldn’t save her life. Q: When did you decide that you wanted to get involved with charity work? A: Growing up, I think I always knew that I wanted to do something to help fight kidney disease. The host of different drugs Mum had to take didn’t do much to help her condition and in some cases even contributed to her decline in health. I always felt that her treatment just wasn’t enough and that more needed to be done to help people with kidney disease. At one point I actually looked into what charities I might be able to support but sadly didn’t come across any. That’s why I’m so grateful to Kidney Research UK for contacting me and giving me the opportunity to help make a difference. Q: You’ve recently visited King’s College Hospital in London to see some of the work we’re funding into PKD. What did you make of our research? A: I was absolutely amazed at the research I saw at King’s College. They really are at the cutting edge of clinical research and it was so good of them to make time for me. What’s truly astonishing is just how close some of these researchers are to making major breakthroughs, in terms of finding new and better treatments for PKD. They’ve identified the genes responsible for causing the mutations in PKD but desperately need more funding in order to be able to take that research to the next level; in some cases that’s millions and millions of pounds! I also had a chance to meet and chat with some kidney

Cover Story

Leading the fight against PKD When Update last spoke to Dr Ayesha Irtiza-Ali, she had just received a Fellowship grant from Kidney Research UK and was about to commence a two-year study into polycystic kidney disease. Six months on, her work is helping to significantly increase our understanding of PKD and may even lead to a new, more effective form of treatment for the illness. The project I’m working on aims to better understand how cysts form and kidney failure develops in PKD. There are number of genes and proteins which regulate normal cell growth. However, in PKD this regulation is abnormal and leads to the formation of kidney cysts. If we know which genes and proteins are key to this process, then we can develop therapies to correct the abnormalities and prevent the formation of cysts and kidney damage. In the early stage of this project we have identified some of these genes and proteins, and a way to inhibit them in the kidney. We’re now turning our attention to therapeutic studies and over the next year will be looking at ways that we might be able to treat the condition. I’ve had the opportunity to promote the project at various conferences in the UK and America, where it was very well received. Ultimately, we hope this research will result in a new form of treatment for PKD – one which will prevent the damage it causes so that people with the illness don’t go on to suffer kidney failure.

patients while they were on dialysis. They were all so upbeat, despite being so ill, and it really brought home just why the research that’s being done is so important. Q: What are you hoping to achieve as an ambassador for Kidney Research UK? A: I’m hoping to achieve two things, really. Firstly, I’d like to raise the Charity’s profile and help to make as many people as possible aware of the fantastic work it does. As part of that, I’m also hoping that I can help to generate greater awareness around kidney disease itself. It’s shocking to me that so few people are aware of just how widespread and devastating an illness it actually is. Secondly, what I’d love to do is raise some money for the organisation and contribute directly to the research they fund. I don’t just want to talk about kidney disease, I want to help find a cure, and sooner rather than later. I want to save other families from having to experience the trauma of kidney disease and make sure that something positive comes out of Mum’s death. Stefan’s first act as ambassador for Kidney Research UK has been to launch a tribute

fund in memory of his mother, with all money raised going to help the Charity support further research into diseases such as PKD. To make a donation, please visit: www.kidneyresearchuktributes.org/ micheleboothtributefund

Matt Cardle. Stefan spends time with dialysis patient Salome Powell.

Call our donation line: 0800 783 2973

Focus On

Diabetes

What you should know about diabetes: • Diabetes is a common health problem where the amount of glucose in your blood is too high because the body cannot use it properly • 2.8 million people in the UK are diagnosed as being diabetic • There are two main types of diabetes: Type 1 (where the body’s immune system attacks the cells that produce insulin) and Type 2 (when the body doesn’t produce enough insulin, or is unable to use the insulin that is being produced) • Diabetes is the single leading cause of kidney disease worldwide

Cause and effect: the dangers of diabetic kidney disease

• 40% of diabetes sufferers will go on to develop kidney disease • Diabetic kidney disease is particularly prominent among people of South Asian background, who are up to 10 times more likely to develop kidney failure as a result of diabetes

Diabetes is the single leading cause of kidney disease worldwide. In fact, almost half of all diabetes sufferers will develop kidney disease as a result of the condition. Diabetes develops when the body is unable to utilise glucose effectively. Key to this is insulin – a hormone produced by the pancreas that allows glucose to penetrate cells, where it’s used as fuel for energy. If the pancreas fails to produce enough insulin, or the insulin that is produced doesn’t work properly, glucose builds up in the bloodstream instead of becoming fuel for the body. If left unchecked, this can lead to high blood pressure, which in turn causes damage to the kidneys. As well as funding research into the

treatment and prevention of diabetic kidney disease, Kidney Research UK also helps to support people suffering from the condition. The Charity has recently completed a project with CLASP The Carers’ Centre, to help people in South Asian communities in the UK who look after diabetes patients. With South Asian diabetics 10 times more likely to develop kidney failure than Caucasian sufferers, the Caring with Confidence programme aims to provide carers with guidance on exactly what support is available to them.

Patient case study Jenny Kaylor suffers from Type 2 diabetes – an illness which also affects her father and sister. To treat the condition she must self-administer two insulin injections every day and receives regular blood checks. Due to diabetes, Jenny is now also suffering

Find out more at: www.kidneyresearchuk.org

Neerja Jain, ABLE Projects Development Manager for Kidney Research UK “It’s hugely important that people with diabetes are aware of the additional health risks posed by their condition, and specifically that they are at greater risk of developing kidney disease. Even those who have not necessarily been diagnosed with diabetes but have a history of the illness in their family should consult their doctor about the potential health issues.”

from kidney disease. She has lost 89 per cent of her renal function and expects to begin dialysis soon: “I was told that as a diabetic I was at increased risk of developing kidney disease but it still came as a shock when I found out,” explained Jenny. “Right now I’m just living each day as it comes. I’ve got the support of my family so I’ll just get on and deal with whatever happens.”

Kidney care

Health & Lifestyle

5 tips to keep your kidneys tip top Kidney disease can affect anyone, regardless of age or previous good health. It’s therefore really important that we do as much as we can to look after our kidneys. Here are our five top tips: 1. Control your diet Remember ‘You are what you eat’, so maintaining a healthy balanced diet which contains plenty of fresh fruits and vegetables is crucial in order to keep your kidneys healthy and working well. 2. Monitor your weight Being overweight is a root cause of hypertension, which puts increased strain on blood vessels throughout the body. This is particularly bad news for your kidneys so make sure you watch that waistline! Ask your GP if you’re not sure what your ideal weight should be.

News Bite

3. Keep active Thirty minutes of moderate exercise, five times a week is all that’s need to maintain a reasonable level of fitness, and it does wonders for your kidneys. This can be broken down into three 10 minute sessions each day and comprise any form of physical activity that raises your heart rate. 4. Don’t smoke In addition to being closely linked to certain types of cancer, smoking increases your blood pressure, which is a leading cause of kidney disease. 5. Visit the doctor Kidney disease presents few noticeable symptoms prior to reaching an advanced state. However, if caught early enough, the damage caused by some forms of kidney disease can be slowed, stopped or even reversed. It’s therefore really important that you have your kidney function checked by your doctor once a year. Don’t forget, if you’re worried you might be at risk from kidney disease you can complete a free, easy-to-use online health check at: www.kidneyresearchuk.org

Looking for a way to get fit and support us? Why not sign up to take part in one of our brilliant fundraising events! Last year our Events team raised a staggering one million pounds to help fund further research into kidney disease. Visit: www.kidneyresearchuk.org/events to find out more.

Water load of nonsense! We’re often led to believe the key to good health is staying hydrated and drinking as much water as possible. Failing to do so, we’re told, can lead to anything from loss of concentration to poor skin and is commonly associated with kidney disease. However, a recent article by Dr Margaret McCartney in the British Medical Journal (BMJ) sparked controversy by challenging these popular assumptions. She claims there’s little evidence to suggest mild dehydration contributes to ill health and dismisses the idea that we should drink at least six to eight glasses of water a day. “Drinking eight glasses of water a day is recommended by all kinds of organisations, including the NHS,” explained Dr McCartney. “There is no evidence that we need to drink more than we naturally want, and there may be unintended harms from an enforcement to drink more water.” We asked Kidney Research UK’s Chairman, Professor Neil Turner, what he made of the report: “While it is important to stay hydrated, it’s not helpful to specify a recommended daily intake of water, as people’s individual needs vary significantly depending on their age, weight, and level of physical activity. There is no good evidence that a high fluid intake leads to improved health. If you’re suffering from repeated urine infections or kidney stones then it’s possible that you need to increase your fluids. However, nobody who is in reasonable health needs to have any concern about drinking enough water because their body will tell them – you will get thirsty!”

Fitness photo competition!

We all know how important it is to stay fit and active, whether you enjoy a spot of gardening, exercise classes or even just walking the dog. Perhaps you’re starting a new fitness regime with a friend or family member. Whatever it may be, we want you to send us a photo of yourself in action! The best shot will be featured in our next supporter magazine, and the winner will receive a free Kidney Research UK mug, polo shirt and pedometer! Get ‘snapping’ and send your photos to: pressoffice@ kidneyresearchuk.org

Call our donation line: 0800 783 2973

Latest Research

News from the lab

An apple a day could keep kidney disease away! A project that we’re funding has found that foods containing pectin, such as apples, oranges and jam, could help to reduce the effects of kidney disease. Our researchers at University College London’s Institute of Child Health have successfully demonstrated that a form of pectin, called modified citrus pectin (MCP), could dramatically reduce kidney damage over a sustained period – potentially improving the lives of thousands of sufferers. Currently, patients with kidney failure face the prospect of a lifetime on dialysis, or having to wait indefinitely for a transplant. With a severe shortage of organ donors in the UK, and 90 per cent of patients on the organ transplant list waiting for a kidney, it is hoped this latest discovery could lead to new ways of combating the illness.

Dr Paul Winyard, Project Lead for Kidney Research UK “MCP is a derivative of pectin, which is a soluble dietary fibre found in the peel and pulp of many foods, including citrus fruit. We now know that MCP reduces the severity of renal disease by altering extracellular functions and inflammation.

“The study shows that pectin could be protective before the onset of kidney damage in an individual – offering a potential breakthrough in terms of preventing the disease. “Our next step is to understand how pectin works on a molecular level and determine if it could be an effective treatment in patients that already have established renal disease – possibly allowing us to reverse the damage to their kidneys.” Research breakthroughs such as this will only yield new and improved treatments for kidney disease if they can be taken on to clinical trials. Kidney Research UK is in desperate need of additional funding in order to be able to do this.

Patient case study Laura Fernie set up a tribute fund in memory of her late father, Ralph, who lost his life to kidney disease earlier this year. Together with friends and family she raised more than £2,000 for the Charity by running the Glenrothes 10k in June. For more information about tribute funds visit: www.kidney researchuk.org/support-us

Potential lifeline for CKD patients Another of our research projects – this time being conducted by Dr David Wheeler at University College Medical School in London – is looking at how and why vascular complications limit the life expectancy of patients with chronic kidney disease (CKD). Cells in the arteries of patients with CKD acquire certain characteristics usually associated with bone-forming cells and calcium. This

Find out more at: www.kidneyresearchuk.org

arterial calcification leads to thickening and stiffening of the arteries, which in turn has a negative impact on the heart. Dr Wheeler has identified that this process appears highly regulated and may be preventable or even reversible. By examining a certain type of naturally occurring protein which inhibits calcium deposition, he hopes to develop new treatments aimed at protecting the arteries of patients with CKD.

News from the lab

Latest Research

The very latest in ground-breaking research Kidney Research UK received a record number of applications for its latest round of grants, with 65 proposals for research projects submitted by academics from across the UK. After being reviewed by the Charity’s research grants committee, 37 were short-listed for interview. Unfortunately, due to limited resources, we were only able to award grants to a total of 11 projects, which have been allocated almost £1.2million in funding between them.

Chronic kidney disease (CKD)

Dr Prabal Chatterjee (Brighton). £38,601 over 18 months Patients with CKD become unwell due to the retention of toxins that are not excreted by the kidneys or removed by standard dialysis. This study will investigate whether oral administration of absorbent carbon molecules can remove sufficient quantities of these toxins to benefit patients with CKD and those on dialysis. If this project is successful, it could result in a new, more effective form of medication for kidney patients.

IgA nephropathy

Dr J Barratt (Leicester). £40,000 over 2 years IgA nephropathy is a disease characterised by the buildup of an antibody, IgA, in the very fine filters of the kidney. This can lead to chronic inflammation, tissue damage and eventually kidney failure. This project aims to identify those IgA molecules most likely to damage the kidneys and develop new treatments for this common cause of kidney failure. By learning more about IgA molecules, this project could one day help doctors prevent the onset of IgA nephropathy.

Autoimmune vasculitis

Dr Alan Salama (Royal Free, London). £172,035 over 3 years Autoimmune vasculitis arises when our natural defence mechanisms are misdirected and cause damage to our blood vessels – a condition which frequently results in acute kidney disease. This study will investigate a natural defence mechanism related to certain white blood cells, to see if it can be harnessed as a new method of treatment. If successful, this project could discover a treatment for autoimmune vasculitis which uses patients’ own white blood cells.

Sudden cardiac death

Prof. Phil Kalra (Salford Hospital). £172,075 over 3 years A quarter of dialysis patients die suddenly or unexpectedly – usually due to an abnormal heartbeat. This study will employ a series of simple bedside tests, the results from which may help identify those at high risk from sudden cardiac death and lead to improved treatments, ultimately reducing risk of death. By developing an effective testing system, this project could reduce the risk of death among dialysis patients.

Proteinuric renal disease

Dr I Pawluzcyk (Leicester). £107,342 over 2 years Protein in the urine often indicates kidney problems – particularly with the cells that form part of the filtration barrier. These cells are affected by sialic acid, which helps maintain their structure. In some kidney diseases, sialic acid is significantly reduced. This study aims to determine how and why sialic acid is lost and whether kidney disease can be treated by administering a sugar solution which will repair this defect. If this project succeeds, it could pave the way for a new preventative treatment for some forms of kidney disease.

Call our donation line: 0800 783 2973

Your Stories

Hope for the future

Staying positive Kaye Noone was only 13 when she was diagnosed with polycystic kidney disease.

Brian undergoing dialysis in hospital, 1971.

Against the odds Born in Kent in 1937, Brian Marchant was like any normal child. Growing up he showed no signs of serious illness – finishing school in 1953, training to become a Civil Servant and eventually going on to marry and start a family.

Told by doctors that her kidneys would eventually fail, she went on to endure repeated infections and other serious health complications: “It was really hard at times but I firmly believe a positive outlook goes a long way to healing a physical problem,” explained Kaye. “I could see there were thousands of children out there worse off than me. Consequently, school, college, university and a teaching career were life choices I didn’t once consider rejecting, despite long and frequent hospital stays, a painful disease and having to undergo dialysis.” Kaye eventually received a kidney transplant from her father in 2010. Since then, she has regained her health and regularly volunteers her time to help counsel newly diagnosed kidney patients. Kaye is now waiting to have her remaining native kidney removed, due to it causing further infection, after which she hopes to begin fundraising for Kidney Research UK. Kidney disease can affect anyone, regardless of age. As part of Kidney Research UK’s 50th anniversary, the Charity is embarking on a series of projects to combat rare kidney diseases – diseases which affect a large number of young children. Please help us to fund this life-saving research.

It wasn’t until 1969, when he started to develop problems with his sight, that his kidney troubles were first discovered. After undergoing tests, Brian was unexpectedly diagnosed with kidney failure. Aged just 32, his condition was largely attributed to high blood pressure. Brian’s kidneys had been deteriorating for decades, without him ever having known. In 1970 Brian received a kidney transplant from a deceased donor which had to be removed just a few months later due to complications. His second transplant two years later would fare much better, and after 48 hours in intensive care and four weeks in recovery, doctors declared Brian’s transplant a success. Amazingly, Brian’s second transplant continues to function well to this day – far longer than most kidney transplants, which last only 10 to 15 years on average. Kidney Research UK is working hard to increase the average lifespan of transplant kidneys. This would not only relieve pressure on the organ transplant list but also improve the lives of thousands of kidney patients. However, only with your help can we continue to fund this vital research.

Find out more at: www.kidneyresearchuk.org

Kaye on holiday in Bali, shortly before her kidneys failed.

Staying in touch

Your Letters

Your Letters WE’RE ALWAYS INTERESTED TO HEAR FROM OUR SUPPORTERS, AND INVITE YOU TO WRITE TO US HERE AT KIDNEY RESEACH UK WITH YOUR STORIES OR ANY QUESTIONS THAT YOU MAY HAVE ABOUT THE WORK WE DO. I have kindly donated £50 to your kidney research charity. I raised this money by singing LETTER Christmas carols in the street in Grassington in December. I know how it feels to have an operation: I had my left kidney taken out at Leeds General Infirmary in March 2011. I am fully recovered from my operation. I really hope my money makes a difference.

STAR

Verity Clay (aged nine) Update’s Editor, Rachel, says: Thanks so much for taking the time to write to us, Verity. We loved reading about your carolling and are so pleased to hear that your operation was a success. Because of that, we’ve decided to award you this edition’s ‘Star Letter’ prize – a special Kidney Research UK mug! Any other budding carollers should check out the Charity’s website for details of this year’s Christmas Advent services, taking place in Peterborough, Birmingham and Manchester.

I read Jaiden’s story in your Spring/Summer Update magazine. I am so pleased for him and wish him and his father all the best for the future.

Mrs PA Revell I received your last edition of Update and was really interested to read about the research you’re funding in 2011. I suffer from CKD and have been waiting for a kidney transplant for a couple of years now. I have to dialyse three times a week for anything up to four hours at a time. Although I know it’s important, I find it difficult as it’s painful, uncomfortable and often leaves me feeling exhausted afterwards. The charity seems to be funding research into lots of different aspects of kidney disease. I just wondered whether you’re doing anything to try and improve conditions for the thousands of people like me on dialysis in the UK?

Update’s Editor, Rachel, says: Thanks for your letter, Rebecca. As you rightly said, we’re currently funding research into lots of different areas relating to kidney disease. While we can’t publicise details of all these projects, you’ll be pleased to hear that we do indeed have a number of ongoing studies which will hopefully lead to improvements for dialysis patients. Dr Enric Vilar is close to completing an 18-month study into energy expenditure in CKD and its relationship to dialysis requirements. By monitoring patients’ calorie requirements, energy requirements and levels of physical activity, he hopes to be able to produce a simple formula which will allow for a more accurate assessment of peoples individual dialysis requirements. This in turn will hopefully lead to more effect dialysis treatment.

Rebecca Pollard

Special thanks go to all Update readers who sent in donations to the Charity, and particularly those who took the time to write to us. As always, the author of our favourite letter will receive a limited edition Kidney Research UK mug as a prize.

Spend a day with Kidney Research UK Throughout the summer months, we’ve held a number of our increasingly popular Legacy receptions at spectacular venues up and down the country – helping to highlight just how important gifts in Wills are in allowing us to continue our work. The setting for these events has ranged from the beautiful Shugborough Historic Estate in Staffordshire to the charming Lamport Hall in Northamptonshire, with a huge amount of positive feedback received from those who attended. In addition to a number of pledges regarding gifts in Wills, four supporters have expressed an interest in visiting some of our research facilities later this year. Our next Legacy reception is taking place on Tuesday 27 September and will be held

in Portsmouth, aboard the magnificent HMS Warrior. The event will commence with tea and coffee at 12 noon, followed by a short presentation covering some of our work and the importance of nutrition for renal patients. Lunch will be provided and the afternoon will conclude with a guided tour of the ship for guests. For more information about gifts in Wills or if you would like to attend one of our forthcoming Legacy receptions, please contact our Legacies department on: 0800 021 7707.

Guests at Lamport Hall Legacy reception, July 2011.

Call our donation line: 0800 783 2973

I want to help save lives from kidney disease Please send more information on:

Setting up a fundraising group Receiving a copy of our Christmas catalogue Holding your own fundraising event e.g. dinner party Receiving a copy of our supporter newsletter Receiving our e-Newsletter Setting up a fundraising group Receiving a copy of our Christmas catalogue Leaving a gift in your will to help secure our work for the future Holding your own fundraising event e.g. dinner party Selling lottery tickets to friends and family Receiving a copy of our supporter newsletter Taking part in one of our exciting fundraising events Using this form to make your donation will help us keep our costs down. Receiving our e-Newsletter Setting up a tribute fund in memory of a loved one

Leaving a gift in your will to help secure our work for the future Selling lottery tickets to friends and family Taking part in one of our exciting fundraising events Setting up amore tribute information fund in memory of a loved one Please send on:

I want to help save lives from kidney disease Here is my gift to help beat kidney disease

Please complete and return to: Kidney Research UK, FREEPOST SN1457, Melksham, SN12 7BR Please make cheque/postal order/CAF voucher payable to Kidney Research UK.

Here is myMastercard gift to help beatCAFkidney disease Or debit my: Visa Charity Card Maestro/Switch card Using this form to make your donation will help us keep our costs down. With the sum of £ Please complete and return to: Kidney Research UK, FREEPOST SN1457, Melksham, SN12 7BR Card No: Please make cheque/postal order/CAF voucher payable to Kidney Research UK. Valid from: Expiry date: Issue no: Or debit my: Mastercard Visa CAF Charity Card Maestro/Switch card Name: With the sum of £

Address: Postcode: Maestro only

Card No: Valid from: Signature:

Maestro only

Expiry date:

Issue no:

Please tick if you would like an acknowledgement of your gift.

Name:

Date:

Address:

If you no longer wish to hear from Kidney Research UK please write to us at the Freepost address above. Registered Charity No. 252892 Registered Scottish Charity No. SC039245

Postcode: Date: Here is my regular gift to help beat kidney disease

Signature:

Please tick if you would like an acknowledgement of your gift.

Instruction to your bank or building society to pay by Direct Debit

If you no longer wish to hear from Kidney Research UK please write to us at the Freepost address above. Registered Charity No. 252892 Registered Scottish Charity No. SC039245

Service User Number 5 9 9 6 7 8

Please fill in the whole form using a ballpoint pen and send to: Kidney Research UK, FREEPOST SN1457, Melksham, SN12 7BR

Reference (For Kidney Research UK official use only.) Here is my regular gift to help beat kidney disease Name and full postal address of your Bank or Building Society To: The Manager Bank/Building Society Instruction to your bank or building society to pay by Direct Debit Address: Please fill in the whole form using a ballpoint pen and send to: Kidney Research UK, FREEPOST SN1457, Melksham, Postcode: SN12 7BR Name and full postal address of your Bank or Building Society Name(s) of Account Holder(s): To: The Manager Bank/Building Society Bank/Building Society account number Branch Sort Code Address: Postcode: Name(s) of Account Holder(s): Signature(s): Bank/Building Society account number Date:

I would like to donate £ Service User Number 5 9 9 6 7 8 every month quarter year Reference (For Kidney Research UK official use only.) First donation to start in the month of: Please like tick to which day£of the month you would like your Direct I would donate Debit to be withdrawn: 15th 30th every month quarter year Instruction to your Bank or Building Society Please pay Kidney Research UK Direct Debits from the account detailed in this

First donation to tostart in the month Instruction subject the safeguards assuredof: by the Direct Debit Guarantee. Branch Sort Code

I understand that this Instruction may remain with Kidney Research UK and,

if so, details will be passed electronically to my Bank/Building Please tick which day of the month you would likeSociety. your Direct

Debit to be withdrawn:

15th

30th

The Direct Debit Guarantee (this guarantee should be detached and retained by the payer) • This Guarantee is offered by all Banks and Building Societies that accept instructions to pay Direct Debits Instruction to your Bank or Building Society You can your gift worth 25%account more bydetailed makingin a Gift • If there are any changes to the amount, date or frequency of your Direct Debit Kidney Research UK Please pay Kidney Research UKmake Direct Debits from the this Aid declaration. Please tick the safeguards box below. assured I am a UK and I want Kidney Research UK will notify you 10 working days in advance of your account being debited or as otherwise agreed. Instruction subject to the bytaxpayer the Direct Debit Guarantee. Signature(s): If you request Kidney Research UK to collect a payment, confirmation of the amount and date will to claim back the tax on all donations I have made for the four years prior to I understand that this Instruction may remain with Kidney Research UK and,this year and be given to you at the time of the request all donations I make from the date of this declaration until I notify them otherwise. if so, details will be passed electronically to my Bank/Building Society. • If an error is made in the payment of your Direct Debit by Kidney Research UK or your Bank or Building Date: Tick here Date: Society you are entitled to a full and immediate refund of the amount paid from your bank or building society. If you receive a refund you are not entitled to, you must pay it back when Kidney Research UK asks you to NB: You must pay an amount of income or capital gains tax at least equal to the tax we reclaim The• You Direct (thisatguarantee should detachedyour andbank retained by thesociety. payer)Written on your donations in each tax year. A tax year is 6 April one year to 5 April the next. You can canDebit cancelGuarantee a Direct Debit any time by simplybe contacting or building • Thisconfirmation Guarantee ismay offered all Banks and Building Societies that accept instructions to pay Direct Debits cancel this declaration at any time. be by required. Please also notify us. You can make your gift worth 25% more by making a Gift Aid • If there are any changes to the amount, date or frequency of your Direct Debit Kidney Research UK declaration. Please tick the box below. I am a UK taxpayer and I want Kidney Research UK will notify you 10 working days in advance of your account being debited or as otherwise agreed. If you request Kidney Research UK to collect a payment, confirmation of the amount and date will to claim back the tax on all donations I have made for the four years prior to this year and be given to you at the time of the request all donations I make from the date of this declaration until I notify them otherwise. • If an error is made in the payment of your Direct Debit by Kidney Research UK or your Bank or Building Tick here Date: Society you are entitled to a full and immediate refund of the amount paid from your bank or building society. If you receive a refund you are not entitled to, you must pay it back when Kidney Research UK asks you to NB: You must pay an amount of income or capital gains tax at least equal to the tax we reclaim Kidney Research UK, Nene Hall, Lynch Wood Park, Peterborough PE2 6FZ. Tel 0845 070 7601 on your donations in each tax year. A tax year is 6 April one year to 5 April the next. You can • You can cancel a Direct Debit at any time by simply contacting your bank or building society. Written cancel this declaration at any time. confirmation may be required. Please also notify us.

MGMAY11

MGMAY11 MGSEP11

Don’t forget to tick for Gift Aid

GetContact in touch:

us:

Kidney Research UK, Nene Hall, Lynch Wood Park

Join: kidneyresearchuk on Facebook Peterborough, PE2 6FZ. Tel: 0845 070 7601 Follow: @kidney_research on Twitter www.kidneyresearchuk.org www.kidneyresearchuk.org

Kidney Research UK, Nene Hall, Lynch Wood Park Peterborough, PE2 6FZ. Tel: 0845 070 7601

Registered Office: Nene Hall, Lynch Wood Park, Peterborough PE2 6FZ. Kidney Research UK is a limited company registered in England. Registered company No. 905963 Registered Charity No. 252892. Registered Scottish Charity No. SC039245