Update Spring 2011

Kidney questionnaire launched

New research projects for 2011

Jaiden’s story

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Update

Spring/Summer 2011

THE MAGA ZINE FROM KIDNEY RESEARCH UK

Breakthrough discovery that could lead to new treatments PAGE 04

ALSO INSIDE...

THE LATEST NEWS AND VIEWS STAR LETTER

Welcome

to the spring/summer edition of Update Spring is a magical time of year; generally speaking it signifies a period of renewal and regrowth. With that in mind, it’s fitting that this edition of Update focuses on the birth of some exciting new research projects we’re about to embark upon. Read on page 08 about our new fellowship and studentship awards you’ve made possible for us to fund.

Whilst on the subject of new beginnings we uncover a project that looks towards finding renewed hope for all those kidney cancer and kidney disease patients (page 04). With scientific breakthroughs and fascinating research projects in the pipeline, it’s a busy time for the charity but (and there’s always a but!) we still have more work to do to help fund life-saving research.

Lighter evenings often get us thinking about giving our bodies a ‘spring clean’ – be that eating healthier, exercising more or just generally keeping up a healthy lifestyle. We know that exercise can lead to a healthy heart and healthy kidneys, and regular exercise is important for everyone, whoever you are-turn to page 07 for exercise tips relevant for all, so no excuses!

According to National Geographic the spring vernal equinox, contrary to belief, does not have the same length of day as it does night. Now that’s one myth busted, here’s another myth: treatment for kidney disease equals a cure! I’m sure most you know this statement isn’t true, but many out there don’t – and that’s why we desperately need your continued support by helping us fund research to one day make this statement true.

Rachel Andrews, Editor Contributors Mathew Walk Neil Turner Neerja Jain

Photographer Matthew Roberts

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Charity scoops national award Kidney Research UK has received a special award from the Association of Medical Research Charities, for work done to raise awareness about kidney disease amongst black and minority ethnic (BME) groups.

The charity was praised for engaging with a hard-to-reach audience, on a project which resulted in over 500 individuals from BME communities joining the Organ Donor Register.

New project seeks to aid rare disease sufferers Kidney Research UK is working with the British Kidney Patients’ Association to establish a new service for people suffering from rare forms of kidney disease.

The Rare Disease Registry (RaDaR) is to be launched later this year, and will comprise a comprehensive database containing the details of people in the UK who suffer from one of a number of rare renal conditions.

Given the nature of rare diseases, there is often a shortage of information available to patients and clinicians alike.

By bringing suffers closer together with the medical professionals who treat them, the registry aims to improve the quality of care, information and research in this area – setting up specific Rare Disease Groups to act as a source of expertise for patients and renal units anywhere in the country.

News Bite

Kidney Research UK is helping to support the Action for Alport’s Campaign which seeks to fund specific research into Alport’s Syndrome – a rare genetic form of kidney disease. For more information visit: www.kidneyresearchuk.org/campaigns/action-for-alports

The latest news and views

In Brief

Global recognition for kidney disease Thursday 10 March 2011 saw the sixth annual World Kidney Day, with more than 100 countries across half a dozen continents working together to raise awareness of kidney disease on a truly international scale.

Following the success of last year’s focus on controlling diabetes, World Kidney Day 2011 sought to highlight the importance of a healthy heart in relation to our kidneys.

Kidney Research UK hosted 22 World Kidney Day events, with NHS nurses helping to carry out free blood pressure tests for members of the public in Dover, Canterbury, Gillingham, Norwich, Nottingham, Gateshead, Southport and Hamilton.

In Nottingham alone, 92 people received a free blood pressure test – nine of whom were later referred to their GP, based on their results.

We also held two large balloon releases in the East of England: one in Norwich, with 500 purple and white balloons released outside The Forum building and the other at our Peterborough headquarters, helping to raise money for our Alex Appeal.

Schools, businesses and dialysis units across the country

Kidney questionnaire launched to save lives We’ve teamed up with NHS Choices to produce an easy-to-use online health check, which warns whether a person is at risk of developing kidney disease.

The health check has been created to combat a substantial rise in the number people requiring treatment for kidney failure, and is designed to target the three million people in the UK who are unknowingly at risk from kidney disease.

With kidney disease often going undiagnosed before reaching an advanced stage, it’s hoped the health check will act as an early warning system for those most at risk - ensuring they are caught early and advising them to have their kidney function checked.

The health check also directs users to useful information on the Kidney Research UK website, as well as advising those people not at increased risk of kidney disease about precautionary measures that can be adopted to improve their kidney health.

Paul Nuki, Chief Editor of NHS Choices, said the health check was an important means

of encouraging preventative action against what is one of the fastest growing diseases in the UK: “In the last decade there has been a dramatic increase in the proportion of kidney disease cases in the UK,” explained Paul.

“We must remember that, at present, there is no cure for kidney disease. The best method we have for bringing about a reduction in the number of people affected by this terrible illness is prevention, and by letting those at risk know how they can protect themselves.

This combined project with Kidney Research UK will hopefully help us to achieve this.”

By quizzing users on a variety of issues ranging from their cardiovascular health to whether they have ever produced an abnormal urine sample, the health check is able to determine the extent to which an individual is at risk from kidney disease. Upon completing the questionnaire, users are also given the option to print their results, should they need to consult their GP. To access the Kidney Research UK’s online health check, simply visit: www.kidneyresearchuk.org Call our donation line: 0800 783 2973

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Cover Story

Breakthrough discovery

Double kidney cure the breakthrough discovery that could lead to new treatments for both kidney disease and kidney cancer

When Dr John Bradley embarked upon a Kidney Research UK funded project at Addenbrooke’s Hospital in 2008, he did so hoping to find a way to repair damaged kidney tissue. Three years on, and with the project now complete, his work may pave the way to cures for kidney disease and kidney cancer. We spoke to him to find out more.

Q: Congratulations on the success of your project. Can you give us an overview of what it was you set out to achieve?

A: The project sought to investigate how a unique protein molecule called tumour necrosis factor (TNF) interacts with kidney cells. Acute kidney injury, when there is a rapid loss of kidney function, often occurs when people become seriously unwell for other reasons, such as pneumonia or septicaemia. Under these conditions the blood supply to the kidneys is often reduced, and the kidneys shut down.

By taking small sections of kidney tissue and subjecting them to similar conditions in the laboratory, we wanted to find out whether TNF was involved in damaging or repairing the kidney.

Q: Can you explain to us how TNF works?

A: TNF is found in the blood stream and binds

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Find out more at: www.kidneyresearchuk.org

itself to the surface of cells – sending them signals by interacting with molecules on the cell surface known as receptors. Two different receptors for TNF have been identified; we found that in the kidney one of these receptors (TNF receptor 1) can signal cells to die, while the other (TNF receptor 2) can signal cells to divide and grow.

Q: At what point did you realise that TNF had implications in terms of treating both kidney disease and kidney cancer?

A: It wasn’t long at all before we realised that by preventing TNF from interacting with one of the two TNF receptors on kidney cells we could provoke very specific reactions. Blocking the type 1 receptor so that TNF can only interact with kidney cells in a way that prompts cell growth could potentially enable us to repair damaged kidney tissue. On the other hand, blocking the

This research provides us with an alternative approach to therapy that could be an effective way to treat kidney cancer and prolong patient survival.

Breakthrough discovery

type 2 receptor so that TNF causes kidney cells to die could have major implications in terms of halting tumour growth in kidney cancer patients.

Q: What could this mean for people suffering from kidney disease or kidney cancer?

A: Kidney cancer resists many existing forms of treatment such as radiotherapy and chemotherapy. This research provides us with an alternative approach to therapy that could be an effective way to treat kidney cancer and prolong patient survival. Similarly, acute kidney injury is a serious complication of many major illnesses. If a drug could be developed to block one of the two TNF receptors, we could conceivably treat both these illnesses.

Q: When might we expect to see new treatments emerging?

A: This is the first step in a long journey.

Understanding what signals drive reactions in cells has far-reaching implications. Going forward, treatments that modulate TNF could be an important factor in refining treatments for a wide variety of different illnesses. However, it is important to stress that any new forms of treatment are some years of further research away from being realised.

LEFT Dr John Bradley, Director of Research and Development at Addenbrooke’s Hospital, Cambridge.

Cover Story

Charity’s research has the X Factor!

X Factor 2010 winner Matt Cardle was diagnosed and successfully treated for kidney cancer as a child.

On hearing about the breakthrough, he had this to say: “Having had this type of illness myself, it’s good to hear that advances are still being made to help others.

“But more research is clearly needed, so it’s vital that charities like Kidney Research UK get enough support to be able to fund these projects.”

Matt Cardle.

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Focus On

The case for dialysis

Making the right choice A recent study into the experiences of elderly people diagnosed with end-stage kidney failure has found that many view conservative care as the only realistic form of treatment available to them – rejecting dialysis because of its perceived restrictions on their quality of life.

The study, carried out by Dr Joe Low at University College London, looked at how elderly patients managed their kidney failure, the decisions around their care and their experiences of conservative kidney management (CKM). Dr Low found that participants had a basic understanding of kidney failure, but often attributed their failing health to old age and other illnesses.

Participants’ acknowledgement that they were coming to the end of their lives meant that many focused on the present rather than the future, with very few making advance care plans and opting for life-extending treatment.

medical conditions is often poor. Some may actually die sooner because of complications linked to dialysis, so it is hardly surprising that increasing numbers of patients are examining their options more critically.

This makes studying the experiences of patients who choose not to undergo dialysis very important.

Patient case study Kelvin Batsford, 60, from Hastings, was diagnosed with kidney failure after testing positive for high blood pressure, and opted to be placed on dialysis.

Professor Neil Turner, Chairman of Kidney Research UK Lack of availability is no longer a reason for opting against dialysis treatment in Britain.

However, people with other serious health problems besides kidney disease are often aware that dialysis cannot put everything right. Dialysis is difficult, even if you are healthy, and survival of dialysis patients who are frail or who have multiple

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Find out more at: www.kidneyresearchuk.org

“Unfortunately, as with any form of kidney disease, my treatment options were extremely limited,” recalls Kelvin.

“For me, conservative care was never an option. I’m an active person; I’m still working and I still enjoy sailing. Kidney failure means a major change of lifestyle for anyone, and you can’t just do nothing. It’s important that people receive all the information, but after that you’ve just got to do what’s best for you.”

kidney disease, what to look for: 4 Feeling tired

4 Breathless on exertion

4 Difficulty concentrating

4 Poor appetite and weight loss

4 Itchy skin

4 Feeling sick

For further information about kidney disease, visit: www.kidneyresearchuk.org/health or call: 0845 300 1499

Spring clean

Health & Lifestyle

Low-salt recipe Lemon and Ginger Baked Yogurt Chicken with Fresh Curry Leaves

Bitter news with sugarsweetened drinks A recent study conducted by UK and US researchers suggests that drinking too many sugary beverages can increase the risk of high blood pressure.

The study, which appeared in the journal Hypertension, tested more than 2,500 participants aged 40-59, who were asked to record what they ate over a four-day period.

Once complete, the study found that, on average, participants had a higher systolic blood pressure by 1.6mmHg and a higher diastolic blood pressure by 0.8mmHg for every extra can of sugary drink consumed per day.

The study also found that the link between sugary drinks and higher blood pressure was especially strong in people who consumed a large amount of salt as well as sugar.

With high-salt diets already known to contribute to high blood pressure, which in turn can damage the kidneys, the study reinforces the need for people to maintain a healthy lifestyle – especially if they are at increased risk from kidney disease.

Neil Turner, Chairman of Kidney Research UK, said: “High blood pressure has the potential to cause lasting damage to the kidneys and therefore goes hand in hand with kidney disease. “

With high-salt diets a major cause of hypertension, which is in turn a leading risk factor in kidney disease, celebrity chef and kidney transplant patient Lawrence Keogh has prepared a special low-salt recipe that is both healthy and delicious!

Method

Ingredients (serves 4) 1 free range chicken portioned into 8 pieces (2 thighs, 2 drumsticks, 2 wings, 2 breasts) 1 lemon juice plus zest (approx 50ml) 15g garlic 15g ginger ½ tsp of cumin seed ¼ tsp ground coriander ½ fresh red chilli approx 5g 150g/100ml natural yoghurt 10 twists of black peppercorns 10 fresh curry leaves

1) Portion chicken and remove the skin.

Make incisions into the flesh with sharp knife to help it cook quicker and allow spices to permeate the meat 2) Place all the other ingredients, except the yoghurt, into a food processor and blend until fine 3) Remove the spice mixture from blender and mix into the chicken thoroughly 4) Then add the yoghurt and, if possible, refrigerate for 24 hours 5) Place chicken pieces on foil-lined tray 6) Bake for approx 20/25 minutes at 220 degrees (Gas mark 7) 7) Remove from oven and serve with plain rice (serves 4) This is just one of many recipes prepared by Lawrence specifically for kidney disease sufferers – who are severely restricted in terms of what they can eat. Visit the Kidney Research UK website for his full cook book.

The key to good kidney health Maintaining a healthy lifestyle is one of the best ways to help reduce your risk of kidney disease.

Diabetes and high blood pressure are it’s main causes, so it’s important you eat a balanced diet, maintain a healthy weight and exercise regularly. While it’s important consult your GP before taking up exercise for the first time, it is generally recommended that you undertake 30 minutes of moderate exercise, five times a week. This can be broken down into three 10 minute sections and can comprise anything from walking or gardening, to housework – any form of physical activity that increases your heart rate.

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Latest Research

News from the lab

NEW RESEARCH PROJECTS FOR 2011

Fellowship & PhD Studentship Awards This year, Kidney Research UK has awarded more than £1.2 million in Fellowship and PhD Studentship grants (four Training, one Post-doctoral Fellowship, four PhD Studentship awards and two joint Fellowships) a selection of which are detailed below...

ADPKD

Diabetes

Dr Ayesha Irtiza-Ali (King’s College London)

Dr Richard Coward (University of Bristol)

Autosomal dominant polycystic kidney disease (ADPKD) affects approximately 12.5 million people worldwide. Caused by abnormal cell growth leading to the formation of multiple cysts in both kidneys, the disease is currently incurable and often results in kidney failure. This research will investigate new strategies to inhibit abnormal cell growth and aims to find new treatments for ADPKD. £136,791 over 24 months

Diabetes is the single leading cause of kidney failure worldwide. Dr Coward has found that a special type of kidney cell called podocytes play a significant role in this condition, due to their lack of sensitivity to insulin. This project aims to increase our understanding of podocyte insulin signalling in the kidney, and discover new treatments. £60,703 over 36 months

News Bite 08

Acute renal failure

Sustainable improvement

There is currently no specific treatment for acute renal failure and new treatments are urgently required. Dr Hughes’ preliminary data supports the concept that so-called ‘natural’ antibodies are able to bind to injured kidney cells in acute kidney injury. This proposal will define the exact role of naturally occurring antibodies in acute kidney injury. £57,355 over 36 months

Quality of care varies significantly across the NHS, and specifically between different renal services.

Quality Improvement is a means by which underperforming NHS organisations can improve their standards, by learning from those who employ more effective working practices.

This project will investigate the important elements behind making sustainable improvements, so that these learnings can be passed on and implemented by other kidney health professionals in order to enhance the services they provide. £75,000 over 36 months in partnership with BRS

Dr Jeremy Hughes (University of Edinburgh)

If you would like to raise money for Kidney Research UK and help fund life-saving research into kidney disease, why not sign up to take part in a fundraising event by visiting: www.kidneyresearchuk.org/events

Find out more at: www.kidneyresearchuk.org

Lesley Lappin (Salford Royal Hospital Foundation Trust)

News from the lab

Latest Research

This research will investigate new strategies to inhibit abnormal cell growth and aims to find new treatments for ADPKD.

Dr Ayesha Irtiza-Ali

Glomerulosclerosis Dr Tanya Dudnakova (University of Edinburgh)

Glomerulosclerosis – a hardening of the glomerulus filters in the kidney – is a common factor in severe kidney disease. Often glomerulosclerosis arises through defects in a very special cell in the glomerulus called the podocyte. The Wilms’ tumour gene (WT1) plays a key role in the development of podocytes, and is vital in maintaining their function and integrity throughout adult life.

Dr Dudnakova plans to explore the hypothesis that WT1 regulates the production of specific proteins which are crucial for glomerular integrity, and that defects in these proteins as a result of WT1 mutation lead to severe kidney disease. £122,086 over 36 months

Cardiovascular mortality

Dense deposit disease

Infection control

Patients with chronic kidney disease have a significantly higher incidence of cardiovascular death compared to the wider population. A major reason for this is the build-up of calcium (calcification) within the walls of the blood vessels.

Dr Fish’s preliminary experiments suggest calcification may be suppressed by blocking the activity of the P2X7 receptor – a protein found on a variety of cells throughout the body. This project aims to further our understanding of the P2X7 receptor and its role in calcification, which may identify new treatment options to reduce the risk of cardiovascular death. £207,268 over 36 months

Dr Barbour plans to examine how complement – a component of the immune system – can accumulate to dangerous levels on the smallest blood vessels of the kidney, leading to dense deposit disease (DDD). This untreatable condition can only be diagnosed after a renal biopsy by using high-power electron microscopes, and even then the fine detail of how and why complement deposits in the kidney remains obscure. This project aims to test the idea that a specific type of complement is responsible, and would be a useful target for future treatment. £192,785 over 36 months

People with diabetes and chronic kidney disease are at significantly increased risk of developing infections.

However, there has been no comprehensive assessment as to the full extent of this increased risk. This project will analyse large anonymised datasets from general practices, hospital records and death certificates. This will help us understand which people are most at risk of infection and death, and whether there is any scope for preventing infections with vaccination, better diabetes control, or different methods of infection management. £74,216 over 36 months

Dr Richard Fish (University College London)

Dr Thomas Barbour (Imperial College London)

Dr Dorothea Nitsch (London School of Hygiene & Tropical Medicine (LSHTM))

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Your Stories

Hope for the future

Jaiden’s story Jaiden Quigley was just a day old when he was diagnosed with end-stage kidney failure.

A case of reflux while he was still in the womb led to a serious bladder infection, which meant he had to be placed on dialysis from birth. Jaiden’s parents, Charlotte and Sam, spent two years caring for their son at home – monitoring him around the clock to keep him alive and healthy.

Through fatigue and their own ill health, they worked tirelessly to preserve Jaiden’s life, and it was due to this selfless devotion that he never once suffered from infection or peritonitis - the inflammation of a membrane that lines part of the abdominal cavity.

Almost three years on and Jaiden is now a happy, healthy little boy, after a donor kidney from his father when he turned two made him the UK’s youngest ever transplant patient.

Although Jaiden is now enjoying a new lease of life, he is by no means cured of his condition. A transplant kidney only lasts 10-15 years on average, meaning he is likely to need another in his teens, and will probably continue to need transplants for the rest of his life.

Kidney Research UK is working hard to fund research which will allow us to extend the lifespan of Jaiden’s transplanted kidney. However, we can only do this with your help. Your support is needed now more than ever, to help people like Jaiden who suffer from kidney disease and will continue to be so until a cure is found.

Record attendance at legacy event Kidney Research UK held another of its increasingly popular Legacy receptions in March, to further highlight the important role that gifts in Wills play in allowing us to continue funding our research.

The 20th event of its kind, this latest gathering took place in the scenic grounds of Leeds Castle, with 38 guests accepting invitations to join the charity for lunch, followed by a tour of the estate.

Speakers at the event included Sally Young, Legacy Officer for Kidney Research UK; Trevor Cook, Chair of the charity’s Lay Advisory Committee; and Dr Qihe Xu, Senior Lecturer in Renal Medicine at Kings College London.

Legacies are one of the most important means by which we are able to fund research, with some major breakthroughs financed as a direct result of gifts in Wills.

Many legacy supporters are kidney disease patients, and leave gifts to the charity despite knowing any subsequent breakthroughs are unlikely to help them Beata Seymour.

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personally – supporters such as Mrs Beata Seymour, who suffers from polycystic kidney disease (PKD).

“I want to leave a gift to Kidney Research UK because I know how it feels to suffer from an illness which is in no way self-inflicted,” explained Beata.

“I am suffering with an inherited disease, and hope that in future it will be possible to prevent such illnesses from developing in childhood, or maybe even stop them entirely by injecting patients with stem cells.

“I want very much to encourage research that would facilitate such treatments, even though, unfortunately, it will be of little help to me.”

If you are interested in attending one of Kidney Research UK’s Legacy receptions or would like more information regarding gifts in Wills, please contact Sally Young by emailing: sallyyoung@kidneyresearchuk.org

Find out more at: www.kidneyresearchuk.org

Thank you for the interesting presentations, a wonderful lunch and the tour of lovely Leeds Castle. We won’t forget a legacy.

Legacy guest

Keeping in touch

Glossary

Your Letters

HELPING YOU TO UNDERSTAND EVERYDAY KIDNEY-SPECIFIC TERMS

We are always keen to hear from our supporters, and invite you to write to us here at Kidney Research UK with any stories or questions you may have about the work we do.

Acute

Meaning ’short-term’ and of rapid onset, usually requiring a rapid response.

As with this issue, a selection of our favourite letters will be printed in the next edition of update, along with one star letter – the writer of which will receive a special kidney research uk mug, by way of a prize!

Please accept this donation of £105 to Kidney Research UK. LETTE My mother recently celebrated R her 90th birthday and asked for donations to be made to your charity instead of receiving gifts. The work your charity does is wonderful and I hope this small amount will in some way help you to continue this in future.

STAR

Jane Gale I have had two kidney transplants in my life, so when I was about to turn 50 it was a big deal in more ways than most people will ever know. We held a fantastic party and, instead of presents, we decided to take donations. As a result, we are glad to be donating to Kidney Research UK six different cheques amounting to £320. Thank you for everything you do.

Jackie Imray Please accept the enclosed cheque for £500 as a donation on behalf of three generations of my family who suffer or have suffered with kidney disease. I hope it will help you carry on with your good work.

Mr L.Z. Cartwright My husband John passed away in 2009 after a long battle with kidney failure. He was a very keen cyclist all of his life and an active member of our local cycling club. I have recently sold one of John’s bikes and am enclosing a cheque for £150. I know that John would be pleased to know that the sale of his much-loved bike was going to Kidney Research UK. He was always very grateful for all the help he received and would be happy to help others in this small way.

Christine Edwards

Your Letters

During my year as Frodsham Town Mayor it was my duty and privilege to raise funds for a charity of my choice. I chose Kidney Research UK to be the beneficiary of my fund-raising, as my daughter is a kidney transplant patient. I am pleased to forward the enclosed cheque for £1,463.50.

Cllr. Geoff Bath Please find enclosed a cheque for £120, which I raised with the help of my colleagues at Saltoun Surgery in Fraserburgh. We collect 50p pieces every week among staff, and then every three months choose one staff member who nominates a charity to receive the donation. This month it was my turn and I named you as my chosen charity. Your charity is close to my heart as my dad had to have a kidney removed due to carcinoma in 2002. It’s a charity my parents have always supported, so I thought I would carry on and do my bit as well. Hope this goes some way to helping with your research.

Miss A. Willeey Special thanks go to all the Update readers who sent in their donations, particularly those who took time to write to us.

Thank you for your generosity.

Autosomal dominant polycystic kidney Disease (ADPKD) In ADPKD, the kidney is gradually replaced by slow-growing cysts. The cysts grow at different rates and can cause serious kidney problems.

Dialysis

An artificial process to remove waste products and excess water from the body. It takes over the excretory work normally performed by healthy kidneys.

Glomerulus

A tuft of small blood vessels that performs the first step in filtering the blood. Each kidney contains approximately one million of these tiny glomeruli.

Immunosuppressive drugs

Drugs used to prevent the body’s rejection of a transplant kidney.

Nephrectomy

An operation to remove a kidney from the body.

Podocytes

Cells that help make up the Bowman’s capsule, which in turn filters the blood by holding back large molecules such as proteins, and allowing through small molecules such as water, salts and sugar, to form urine.

Reflux

Reflux (or reflux nephropathy) is a form of kidney disease in which urine passes back up from the bladder towards the kidneys, instead of leaving the body as it should.

Call our donation line: 0800 783 2973

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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

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 a tribute fund in memory of a loved one

Here is my gift to help beat kidney disease Using this form to make your donation will help us keep our costs down.

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