Update Winter 2011 by Kidney Research UK

Celebrating half a century of life-saving funding

Reaching the summit

Research success stories

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Update THE MAGA ZINE FROM KIDNEY RESEARCH UK

Kidney Research UK kick-starts pioneering research project PAGE 06

ALSO INSIDE... LEGACY RECEPTIONS YOUR LETTERS

Winter 2010

50 Years

Celebrating 1961-2011

Welcome This year we celebrate our 50th anniversary of funding research to save lives. In our 50th year we hope to invest an extra £1 million into research grants in the hope that we will make significant advances into the causes, prevention and treatment of kidney disease. We have so many notable research updates, sadly we can’t feature them all. However each of our projects plays an important part in helping us draw one step closer to finding a cure for this often silent and sneaky disease. Our feature story in this issue (page six) highlights the fantastic work of Giovanna Lombardi who’s based at King’s College, London. Giovanna’s work into kidney disease is so inspiring and we hope you enjoy reading her fascinating story.

Rachel Andrews Editor

Update Editor: Rachel Andrews Contributor: Charlotte Gillam Designed by: Titman Firth Printed by: PPS Print 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

Celebrating half a century of funding research to save lives We caught up with Chief Executive Charles Kernahan to discuss the ChariTY’s landmark Q: This year the charity celebrates its 50th anniversary. Can you give an overview of some key achievements in this period of time? A: Kidney Research UK has funded many projects since forming in 1961. We have discovered new genes responsible for many kidney diseases, including kidney stones, and established an effective treatment for anaemia in kidney patients. We have run the most successful academic clinical trial on kidney disease in the UK and discovered that we can re-programme a kind of white blood cell called a macrophage, to repair kidney scarring, which is a major cause of kidney failure. Since 1985, we have invested £47 million in vital research and supported over 650 strands of research work in 30 centres of excellence.

Kidney disease from past 1861 The process of dialysis is first described by Thomas Graham

1933 The first human renal transplant takes place but is unsuccessful

1941 Willem J builds first successful artificial kidney

1954 The first successful human renal transplant takes place between identical twins 1959 Multiple dialysis units open in the UK 1959 First human haemodialysis

1800s

1930s

1940s

1950s

Celebrating 1961-2011

Q: The charity’s vision is a world free from kidney disease, but have you found the last couple of years have hit the charity hard because of the economy? A: We have the passion and drive to at least double our fundraising so that we can treble our impact on kidney disease. My biggest worry is that the next vital breakthrough might just be a research project presented to us that we cannot currently fund. At the moment we can only fund one in five research projects. However, of those projects that we do fund, there is currently some very exciting science taking place. We are working to try and make a transplanted kidney last ‘for life’ and there is some promising work happening on avoiding injury to the kidney during transplantation, reasons behind kidney inflammation and the development of genetic profiles to better predict successful transplants. Last year our collective work brought in over £7.4 million so I feel positive that we will continue funding vital research in the hope that one day a cure will be found. Q: A number of research projects focus on finding a cure for kidney disease; what about the people living with it every day? Are projects being funded in that area? A: We are working on ways to improve dialysis and we’re currently running projects designed to help patients make better choices about their forms of treatment. We work with ‘at risk’ communities – these are people with a higher risk of developing the disease and we are now working with primary care doctors to improve the care of patients in earlier stages of the disease.

to present 1960 First successful kidney transplant in the UK 1961 The National Kidney Research Fund (NKRF) is founded 1964 Home dialysis is first introduced

1960s

1976 UK brain death guidelines facilitate retrieval from heart-beating organ cadaveric donors

1970s

Q: We know kidney disease can affect anyone, of any age; how much research do you carry out into children’s diseases? A: One area that is becoming a real priority for us is to tackle rare kidney diseases. Whilst chronic kidney disease can affect thousands of people, the rare genetic forms of the disease are the most distressing, as these often involve children. We are funding a rare disease registry to pose the fundamental questions about what causes these conditions. The focus of the work will concentrate on two rare children’s diseases: focal segmental glomerulosclerosis (FSGS) and membranoproliferative glomerulonephritis (MPGN) which both cause complete kidney failure. We are also running a specific project led by Professor Tim Goodship, based at the University of Newcastle, to find better treatments for MPGN. Q: You mention that you may not have the funds to put towards the next vital breakthrough. Typically how much is needed for a vital research project? A: On average, each Fellowship requires £230,000 of funding support over three years. Q: So if I want to get involved with the charity as an individual and help with fundraising, how do I go about doing that? A: We have a network of community fundraising managers across the country to help you, whether it’s help with organising an event or ideas for fundraising.

To find your local contact you can visit: www.kidneyresearchuk.org/inyourcommunity We have a mountain to climb in battling kidney disease, but with your help, we will get there.

1983 A new immunosuppressant drug called Cyclosporine is approved for organ transplantation 1986 New treatment (recombinant Epo) is used to treat anaemia

1980s

1993 The Modification of Diet in Renal Disease Study shows the value of lowering blood pressure in kidney disease

1990s

50 Years

Achievements We’ve discovered new genes responsible for many kidney diseases in the UK, including kidney stones. We ran a clinical trial with over 130 GP practices including patients with early kidney problems. We’ve funded cutting-edge research that led to the establishment of treatment for anemia (low red blood cells) in kidney patients. We’ve discovered that a type of cell called a Macrophage can reverse kidney scarring which could significantly benefit many patients. We’ve funded research to increase understanding of and the ability to treat rejection in kidney transplantation. We’ve co-funded the most successful academic clinical trial on kidney disease in the UK.

2002 New clinical trials begin looking at better adequacy in dialysis treatments and reducing co-morbidity and mortality 2005 The NKRF becomes Kidney Research UK 2010 Trials begin on a new transplant technology that could double the time transplanted organs survive

2000s Call our donation line: 0800 783 2973

In Brief

The Latest News and Views

Children’s party success

We voice our opinion The NHS White Paper was published last summer; its purpose is to set out the Government’s long-term vision for the future of the NHS. Kidney Research UK’s Chief Executive, Charles Kernahan, commented: “Kidney Research UK welcomes the Government’s initiative to make healthcare in the UK more outcome - rather than process - focused and more patient-centred. The NHS provides a world-class environment for medical research and innovation through clinical studies and trials, and we hope continuation of clinicians and patients coming together in the development of new and improved treatments will not be adversely affected by the implementation of the proposed changes in the NHS. “Research has a vital role to play in assisting in achieving the long-term goals of the White Paper. We support the number of references in the White Paper to the promotion and conduct of medical and health research becoming more embedded within the functions of the NHS. We believe there is a real opportunity for the NHS to work with charities to help deliver the evidence required to effect change and improve healthcare. “However there is a great deal that is unclear and we are concerned with accepting the high-level approach of the White Paper. We’ve noted from the ongoing work within the policy teams, that there’s still a great deal of work and clearly needed in a very short time period. There is also a risk that current advances made may be lost in these proposed radical changes and that healthcare could actually go backwards rather than forwards.”

Find out more at: www.kidneyresearchuk.org

On Sunday 3 October, Kidney Research UK hosted a special celebratory dinner for children suffering from kidney disease. The guest speaker was TV presenter Carol Smillie, who made a touching speech and spent some time chatting to families who are affected by this debilitating disease. Around 150 children from Yorkhill Hospital, as well as adult kidney patients and their families from across Scotland, attended the event at Glasgow’s Thistle Hotel. The dinner also featured appearances from football’s Aberdeen player Zander Diamond, former Scottish player John Brown and Rangers’ Broxi the Bear and Celtic’s Hoopy the Huddle Hound.

Guest speaker Carol Smillie

Hundreds join us at our annual advent services In November and December last year we welcomed supporters to our annual advert services held in Birmingham, Peterborough and Manchester Cathedrals. All three events were well attended. Organiser of the Peterborough advent service, Pete Revell, said: “It was fantastic to see so many of our supporters gathered together in such a spectacular venue. The service was very fitting with our theme of the ‘gift of life.’ During the service we asked people to reflect on those less fortunate than ourselves, particularly those with kidney disease, who may spend part of Christmas Day hooked up to a dialysis machine.” After the services, guests were offered a glass of wine and mince pies.

The Latest News and Views

In Brief

Reaching the pinnacle of success for charity climbers One wintery weekend in October more than 100 people climbed Ben Nevis to raise money for the Charity. At 4,409 feet (1,344 metres) Ben Nevis is Britain’s highest peak and a challenging climb for those who dare to tackle this formidable mountain. The day started at 8am, on a steep incline to the summit with loose scree, rocks and pebbles making the path slippery and difficult in places. The mountain took a total of five hours to climb and approximately three hours to descend requiring determination and will-power from all who took part. Fortunately the day was blessed with clear weather and sunshine and those who reached the summit were greeted with crisp, panoramic views of the West Highlands.

Patient case study Close friends Kay Colley, Suzy Flintoff and Ann Power took part in the Ben Nevis challenge for the first time. Kay said: “We’re on the wrong side of 30 and not exactly in peak physical fitness but we all took on this challenge because it is for a great cause that is close to our hearts. While we were climbing Ben Nevis, we had the devastating news that our friend’s little boy, Suresh, had passed away due to renal failure. Little Suresh was only ten months old and it is such a tragedy. Sadly we have lost some of our relatives to kidney disease, fortunately others have been saved. It is in honour of these great people, children and adults who are affected by this terrible disease, that we want to play our part in raising awareness, and most importantly, raise money for Kidney Research UK.”

Key events coming up During 2010 over 350 people took part in their own challenge, raising over £120,000. We have a great selection of fundraising events taking place all year round, across the country and beyond. If you would like to participate in an event you can contact our events team on: 0845 612 1226 or email: events@kidneyresearchuk.org

Call our donation line: 0800 783 2973

Cover Story

Giovanna Lombardi

Kidney Research UK kick-starts pioneering research project, led by Professor Giovanna Lombardi In 1992 the Charity GRANTED Professor GIOVANNA Lombardi with a fellowship award of £195,000 for a five-year project looking at specific white blood cells involved in the immune system.

We are proud to have played a vital part in Professor Lombardi’s research career, and 18 years later, she has made some astonishing findings. At the end of this successful project, Professor Lombardi was once again successful in receiving another two research project grants looking specifically at how the immune system responds to a transplanted organ. In particular, Professor Lombardi’s work focused on specific white blood cells called regulatory T cells (Tregs) in patients with systemic lupus erythematosus (SLE). Lupus can be characterised as an auto immune disease in which the immune system attacks any part of the body, and in many cases the most common organs affected are the

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If this works, it might be possible in the future to inject these cells back into lupus patients that received a kidney transplant as an immunotherapy. As a result, it would reduce the likelihood of patients developing further complications, i.e. serious infections. This was the platform for our clinical trial.

kidneys. SLE is one of several diseases known as ‘the great imitators’ because it often mimics or is mistaken for other illnesses. It is treatable with immunosuppressants (drugs taken to prevent the body rejecting a transplant); however, it makes the patient more prone to other serious infections. Professor Lombardi said, “In lupus, many different organs can be a ffected, but commonly it is the kidneys, which can be damaged to such an extent that they fail with the need for a transplant.” Professor Lombardi collaborated with a number of prestigious researchers and it was during this time that they discovered Tregs were potentially capable of preventing transplant rejection in patients with lupus.

Giovanna Lombardi

Upon receiving her second grant, Professor Lombardi and her team focused on the advantage of using these specific white blood cells as an alternative to the immunosuppressant therapy for kidney transplant patients, which would allow the immune system to remain active. Giovanna Lombardi told us: “If this works, it might be possible in the future to inject these cells back into lupus patients that received a kidney transplant as an immunotherapy. As a result, it would reduce the likelihood of patients developing further complications, i.e. serious infections. This was the platform for our clinical trial.” Looking to the future, further funding has been received which has helped the advancement of the initial research. Professor Lombardi is part of a key study across four European countries funded by the European Union that’s designed to support a wide range of researchers. ‘The One Study’ is a clinical trial using a small group of renal transplant patients, half of which will receive the immunosuppressants as a standard treatment, while the remaining patients will receive a combination of immunosuppressants and Tregs. If this clinical trial is successful, it may lead the way into new treatments for patients who

have received a transplanted kidney like Jelina Berlow-Rahman who has lupus. Jelina tells us her story “In February 1997 I was diagnosed with SLE. The words alone were very difficult to comprehend let alone the disease which had engulfed my teenage body. SLE causes a rash on the face, lesions on the skin, arthritis to the joints, extreme fatigue and continuous joint pains, all of which I experienced very rapidly. I was told I was one of the most extreme lupus patient cases and was visited by doctors from across the UK studying the illness, desperately trying to understand the mechanics of SLE. “In November 2005 my kidney’s failed due to inflammation and I started peritoneal dialysis, a form of treatment for end stage renal failure. Sadly my body found this treatment difficult to accept: my body was absorbing the fluid therefore stopping the dialysis treatment working effectively, so I started haemodialysis. In my 20’s I should have been enjoying my career; instead, I found myself in and out of hospital. I read many articles advising me that SLE could kill me, attacking each organ one by one. I did not really know how to accept this or understand it.

Cover Story

drain the growing infection. At one point I lost consciousness for several days. My husband and family were informed that I may not survive. My inner self was determined to live and with the inner strength and the grace of God, I survived another horrific ordeal. “The call that changed my life came on 4 December 2009. ‘Jelina Berlow-Rahman can you please make your way to the hospital, we have a kidney for you.’ I have got my life back, nothing extraordinary, just a normal life like everyone else, which I will never take for granted.”

In lupus, many different organs can be affected, but commonly it is the kidneys, which can be damaged to such an extent that they fail with the need for a transplant.

“In November 2006 I was at my worst. I weighed less than five stone, I lost all my hair and I had bags attached to my body to help

ABOVE A Kidney transplant brought Jenlina Berlow-Rahman back from the brink of death LEFT TO RIGHT It has taken hours of testing in the lab to reach the point where Professor Lombardi is now with her work

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Latest Research

News from the Lab

Investigation of kidney stone formation and changes in calcium in Dent’s disease Dr Georgina Carr, from Newcastle University, completed her three year study in 2010, which focused on kidney stones in patients with Dent’s disease.

Genetics Home Reference

Kidney stones are formed when urine becomes very concentrated with calcium salts. Dent’s disease is a hereditary disease characterised by kidney stones, high levels of calcium in the urine and calcium build-up within the nephrons (the basic structural and functional units of the kidney). Although researchers know the genetic mutation (change in DNA) underlying Dent’s disease, they are still trying to understand the process that causes the formation of kidney stones.

Dr Carr has shown that the location of a protein that may be linked to calcium handling in the kidney is in the wrong place. An alternative location may result in calcium level changes in the kidney, possibly helping to explain how stone formation occurs. Using this outcome, they can now concentrate on developing more effective treatments of kidney stones. This research could help people like Justin Farrow (below), who has Dent’s Disease.

Patient case study Justin told us: “My Grandfather was one of the first people ever discovered with this rare condition following a chance conversation with his doctors. As the disease is hereditary, my Grandfather’s entire family were screened for this condition. I was about 11 when it was confirmed that I too had Dent’s disease. “I have regular check-ups and tests to see if my overall kidney function is stable at the Royal Free and UCL Hospitals in London. I understand that little is known about this particular disease, and that one day my kidney function is likely to fail as a result of this condition, requiring me to have a Transplant. “I have been lucky in that living with Dent’s disease has had little impact on my life as a whole so far. I have only suffered with two problematic kidney stones requiring some form of treatment. Dents Disease has never stopped me from doing anything I have wanted to do; in

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fact it makes me even more determined to do things. “It can be frustrating knowing I have this condition over which I have had no control, and that one day it will have a more direct impact on my lifestyle. There continues to be research into both how the kidney stones are developed, as well as why the kidney function gradually reduces in Dent’s disease sufferers. Any breakthrough into finding the cause of both kidney stones and the reduction in kidney function in Dent’s disease sufferers would be welcomed, especially if the formation of stones can be prevented and overall kidney function saved. It may be that it is too late to directly help me, but as this disease may be passed to my children, any research for future generations is important.”

News from the Lab

Leading the way in blood pressure and kidney disease Jo Byrne based at Leicester General Hospital, completed her three-year ‘Controlling Hypertension Education and Empowerment’ renal study at the beginning of 2010. Jo’s project focused on local patients with chronic kidney disease (CKD) and the risk of cardiovascular disease and premature death. Blood pressure (BP) control is essential for reducing cardiovascular risk and delays progression to end stage renal failure (ESRF). Patients with a long-term raised blood pressure are at risk of damage to their heart and blood vessels. This means they will be more likely to have heart attacks and strokes. Kidney problems are also aggravated by high blood pressure.

Latest Research

Patient case study Trevor Cook is Chair of Kidney Research UK’s England and Wales Lay Advisory Committee. He has first-hand experience of life as a kidney patient. Trevor said: ”As a patient you become to realise how important blood pressure control is if you have kidney disease. Not many people know that high blood preasure is one of the few symptons of kidney disease. Because of this, it is necessary to take control of life by adopting a healthy everyday lifestyle. This is the most effective way of maintaining reasonable blood pressure control, by watching salt intake and body weight, regular exercising and not smoking. The research that Jo Byrne is doing is certainly a big step in the right direction to help patients, like myself, understand the risks of not maintaining a healthy blood pressure.”

Jo wanted to test whether by increasing educational awareness, at-risk individuals would be encouraged to reach their desired target BP. Jo said: “The use of education provides patients with chronic renal disease with the knowledge and skills to allow them to take more control over their lives.” She found that patients had negative perceptions: “This suggests that attention needs to be focused on basic knowledge and increasing general awareness.” Less than half of the local chronic kidney disease population had reached their blood pressure target. “Our findings showed that many patients do not have appropriate education and support to help them achieve their target BP.” Jo designed an educational tool to increase awareness of BP control amongst patients with CKD. The study showed that in order to improve patient education, the ability to recruit and retain the patients was essential. For effective education, people need to be much more aware of kidney disease and the implications it has to an individual’s health. Time needs to be spent to encourage CKD patients to take an interest in education, and for education to be a part of the routine care patients should receive.

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Legacies

Hope for the Future

Join us at a legacy reception Gifts in Wills enable us to fund research projects. However, at present we can only fund one in every five of the research grant applications we receive due to lack of funds. Your gift could make the difference and ensure that a cause you care about is able to continue to fund vital research and find the next breakthrough. If you would like to meet one of our researchers and find out more about our work, please join us at one of our upcoming legacy receptions:

3 February, Bristol Cathedral, Bristol 17 February, Warwick Castle, Warwick 16 March, Leeds Castle, near Maidstone, Kent 6 July, Thornbury Castle, Thornbury, South Gloucs On 3 November, a legacy reception was held at Christ’s College, Cambridge. This was a great opportunity to hear about the exciting work that Professor Michael Edwardson from the University of Cambridge is carrying out in polycystic kidney disease using a novel imaging technique called ‘atomic force microscopy’ (AFM). Professor Edwardson said: “The information produced should greatly increase our understanding of how these proteins work, and in the longterm places us in a much better position to design treatments for ‘autosomal dominant polycystic kidney disease’ (ADPKD).”

We are now also arranging ‘lab tours’ around the country, which give you the opportunity to meet researchers and their teams, tour their labs and see their work in progress.

For further information about our legacy receptions or lab tours, please contact Sally Young on: legacies@kidneyresearchuk.org or call: 0800 021 7707

Thank you very much for the marvellous day yesterday at Christ’s College Cambridge. My partner and I found it extremely informative. The work being done by Professor Edwardson is fascinating. Again thank you to your team for a wonderful day.

Peter Grainger Stevenage

Your Letters Last week we celebrated our 25th wedding anniversary with a family lunch party. As our family owes so much to effective research into kidney failure and transplantation we wanted to use this special occasion to help the charity’s work further. We asked our 90 guests to consider making a donation, in lieu of a gift, to Kidney Research UK and have pleasure in enclosing cheques totalling £665.00. We were delighted with this generous response and know that it will be put to good use.

Linda and Dave Clarke I have had the pleasure to be captain of this Golf Society (WAGS) throughout 2010 and nominated you as my chosen charity. I am pleased therefore to enclose our cheque for £1,450.00 and wish you continued success in your research.

John Bristow

Find out more at: www.kidneyresearchuk.org

Please find enclosed a cheque for £200.00 as a donation from the Nottingham Trent District of the Manchester Unity Independent Order of Oddfellows. The Grantham and Sleaford Branch wished their yearly donation to go to your charity. I am happy to inform you that Norman Nicholson, who presented your cheque last year, has now had a kidney transplant and apart from a couple of infections is doing really well.

Karen Pye-Smith I am the staff co-ordinator of the Lower School Charity Committee at The North Halifax Grammar School. Last term we organised our very own NHG’s Got Talent to raise money for Kidney Research UK. The committee worked very hard organising the event and the students who participated had rehearsed to a very high standard. Staff judged the event and entered into the spirit of the competition with gusto! I am very pleased to be able to send you a cheque for £90. The students would be delighted if you could acknowledge receipt of the cheque and send any information regarding how the money might be used.

Sue Taylor

Community

Our people: Kidney Research UK’s Research Grants Committee

Glossary HELPING YOU TO UNDERSTAND EVERyDAY KIDNEY-SPECIFIC TERMS

Acute

A word meaning ’short-term’ and of rapid onset, usually requiring a rapid response.

Cadaveric transplant

Cadaveric transplant: a transplant in which the kidney is removed from someone who has died.

CAPD

Continuous ambulatory peritoneal dialysis - a form of PD (see below) in which patients perform exchanges of dialysis fluid manually, usually four times a day. The fluid is left inside the patient overnight.

Creatinine

A waste substance produced by muscles and which can only be excreted by the kidneys. Creatinine can be measured in the blood. High levels indicate that the kidneys are not working. It can also be used to assess the function of a transplant, or the efficiency of dialysis.

Our Research Grants Committee is a group of renowned scientists and medical professionals who have the difficult task of deciding which research proposals can be funded by the charity. Every year, we receive on average around 95 applications, all of which could potentially be the project that finds the cure for kidney disease. Sadly, we currently can only fund one in five research projects.

Kidney Research UK’s Annual Review 2009-10

Dialysis

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

Glomerulus

One of the tiny filtering units inside the kidney.

Haemodialysis

A form of dialysis in which the blood is ‘cleaned’ outside the body in a dialysis or kidney machine. It contains a filter called a dialyser or artificial kidney. Each dialysis session lasts for three to five hours, and takes place three times a week.

Immunosuppressive drugs

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

Nephrectomy

Kidney Research UK’s Annual Review 2009-10 is now available to download on-line at: www.kidneyresearchuk.org or alternatively, please contact us for a printed copy.

An operation to remove a kidney from the body.

Peritoneal dialysis (PD)

A form of dialysis that takes place inside the patient’s peritoneal cavity (the area between the two layers of the peritoneum inside the abdomen, containing the abdominal organs). Using the peritoneum (the lining of the inside wall of the abdomen) as the dialysis membrane, bags of dialysis fluid containing glucose and various other substances are drained in and out of the peritoneal cavity via a PD catheter.

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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. 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. Or debit my:

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