50 years of funding research to save lives Annual Review 2009-2010
KIDNEY DISEASE FROM PAST TO PRESENT 1954 The first successful human renal transplant takes place between identical twins
1933 The first human renal transplant takes place but is unsuccessful
1861 The process of dialysis is first described by Thomas Graham
1941 Kolff built first successful artificial kidney
1800s
1930s
1940s
1959 Multiple dialysis units open in the UK
1950s
1960 First successful kidney transplant in the UK
1961 The National Kidney Research Fund (NKRF) is founded 1964 Home dialysis is first introduced
1976 UK brain death guidelines facilitate retrieval from heart-beating organ cadaveric donors
1970s
1959 First human haemodialysis
1960s
2002 New clinical trials begin
1983 A new immunosuppressant drug called Cyclosporine is approved for organ transplantation
1986 New treatment (recombinant Epo) is used to treat anaemia (common in kidney dialysis patients)
1980s
1993 The Modification of Diet in Renal Disease Study shows the value of lowering blood pressure in kidney disease
1990s
2000s
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 in the body
Welcome In 1961, Kidney Research UK was founded by members of the Renal Association. We have grown over the last 50 years to become the leading charity funding research specifically into the causes, prevention and treatment of kidney disease. As we prepare to celebrate our 50th anniversary in 2011, we can reflect on the fact that, thanks to advances in kidney research over half a century, 47,000 people in the UK are alive today who would otherwise have died from renal failure, and worldwide, millions can be treated for this ‘sneaky disease’. As the Charity has grown, so has our commitment to research. In more recent times, from 1985, we have invested £44 million in vital research projects. Our impact has grown to the extent that we now fund work in over 30 centres of excellence and have supported over 650 research grants, studentships and fellowships. But we need to do much more; over 3 million people in the UK are at risk of chronic kidney disease (CKD) and the number of people succumbing to serious kidney problems is consistently increasing by at least 5% each and every year. Three thousand people a year die whilst on dialysis and 300 die waiting for a kidney transplant.
Charles Kernahan Chief Executive and Neil Turner Chairman
So this Annual Review briefly reflects on our history, but just as importantly, also focuses on the cutting-edge research we are investing in now and into the future. Please help us to achieve our vision of a world free from kidney disease.
About us Kidney Research UK supports research aimed at finding better treatments, and ultimately a cure, for kidney disease. We have over £10.1 million invested in research at any one time, awarding grants to doctors, nurses and researchers across the UK. We also award grants to kidney patients so that they can cope with the unexpected costs of their condition, and we campaign for better patient access to renal services.
Our mission To fund life-saving research into kidney disease, to improve the quality of life of those with kidney disorders and to increase public awareness.
KIDNEY RESEARCH UK’S 50 YEARS OF ACHIEVEMENT We’ve discovered new genes responsible for many kidney diseases in the UK, including kidney stones.
We’ve funded cutting-edge research that led to the establishment of treatment for anemia (low red blood cells) in kidney patients.
We’ve funded research to increase understanding and the ability to treat rejection in kidney transplantation.
We ran a clinical trial with over 130 GP practices including patients with early kidney problems.
We’ve discovered that a type of cell called a macrophage can reverse kidney scarring which could significantly benefit many patients.
We’ve co-funded the most successful academic clinical trial on kidney disease in the UK.
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Cutting-edge research for now and the future... We take the lead in children’s rare diseases Kidney disease in childhood is rare, which makes it difficult to study. Bristol-based Professor Moin Saleem has been developing rare disease registers, which are essential for clinical analysis. There is no structured registry in place at present in the UK. The renal community needs a short term project to develop and test the information technology that registries need to use. To get started, Professor Saleem will develop a registry for two rare diseases that affect children and young people: mesangiocapillary glomerulonephritis (MCGN) and focal segmental glomerulosclerosis (FSGS). Both are serious and lead to end-stage kidney failure. The effectiveness of the registry will be demonstrated
by resolving a simple question about the cause of each disorder.This project will lead to a sustainable long-term strategy for research into rare kidney diseases, mostly in children but also adults. Working alongside Professor Saleem is Jessica Harris. Jessica’s project,‘The role of circulating proteases in FSGS’, was given a fund of £52,589 over three years, to investigate how the essential cleaning of the blood by the kidneys is disrupted. Jessica suggests that excess activity of enzymes in the blood is involved in the disease process of FSGS, which ultimately results in the destruction of the kidney and the need for a transplant. Unfortunately this disease can recur after transplantation, affecting the new kidney.
Alex Gibbs
Martha Stringer
Alex, aged seven, suffers from MPGN Type II, a kidney disease which affects mainly children, and is hooked up to a dialysis machine every night for 10 hours at a time. For the time being Alex’s parents have chosen not to put him on the transplant list as the disease that he has means that his body would attack the new kidney, and it may only last for 18 months. They are hoping for news of a cure so that a new kidney will last longer.
This research could help children like Martha. With her big smile and infectious laugh she looks just like any other five year-old you might see bouncing around. But Martha suffers from FSGS, and doctors have not yet found a way to stop her immune system destroying her kidneys. Even if Martha receives a kidney transplant there is high chance that it would be unsuccessful, with the transplanted kidney rejected. If the doctors cannot prevent rejection, then Martha will end up on dialysis, linked up to a machine for several hours a day, three or four times a week. Hopefully this research will bring us one step closer to helping Martha and others alike.
largest
Our work into cystic kidney diseases Rosyln Simms has been awarded £43,223 towards her three-year research project looking at cystic kidney disease. Cystic kidney disease comprises of a group of inherited disorders leading to kidney failure and accounts for 10% of the 47,000 UK patients requiring renal replacement therapy (dialysis or transplantation). Rosyln said: “Current treatment is supportive rather than preventing disease progression. A better understanding of disease processes involved is required and experimental models will enable new drugs to be tested. “Recently some of the genes mutated in the childhood cystic kidney disease called nephronophthisis have been found. Proteins called nephrocystins have important roles in how the kidney tubules form and orientate themselves. Before cysts develop, patients are unable to concentrate their urine, providing a useful hint that affected kidney cells cannot function at a molecular level. “Using kidney cells in culture and developing the zebrafish model (an organism highly suitable for observing kidney development), I will look at where proteins are located in the zebrafish and how they interact to control water reabsorption. “In these model systems I will mimic the human disease of nephronophthisis, to determine the underlying processes which lead to cyst formation and evaluate certain drugs which may be important in slowing down this disease.”
Zebrafish model
We are the funder dedicated to research into kidney disease in the UK, in the hope of finding a cure. 04
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David Rand David Rand suffers from Polycystic Kidney Disease (PKD). In 2009 he ran the Great North Run, with no kidneys! He had both of them removed because they were very large and restricted the space for a kidney transplant. He received a kidney in 2008, but it failed and had to be removed within 24 hours. In September 2010 he received another kidney, and so far is doing remarkably well. A project like Roslyn’s could help people in a similar situation to David’s, but unlike his invasive and long-awaited transplant, they could receive simple treatment with drugs that slow down their cystic disease - thus ultimately preventing the need for transplantation entirely.
BOLDE (Broadening Options for Long-term Dialysis in the Elderly) is a multicentre study funded by Kidney Research UK through a partnership with Baxter Healthcare Ltd (UK) and in consultation with both the Renal Association and British Renal Society (BRS).
patients perceive their decision making around their choice of types of dialysis. The study involved a qualitative review on patients six months after starting peritoneal dialysis or haemodialysis to determine how it affected their life.This quality of life study has now been completed and shows that patients on peritoneal dialysis experience significantly less intrusions from their illness and its treatment. It has also shown that other patients can successfully manage their peritoneal dialysis.
This study aims to compare the quality of life of older patients on peritoneal dialysis and haemodialysis and to determine how older
As a follow-on from this study, a recent ‘Open Call’, through the continuation of the partnership with Baxter Healthcare Ltd, the
Improving quality of life on dialysis
BRS and Renal Association, has resulted in a number of exciting multi-centred collaborative research proposals. These examine the current status of patient choice of dialysis options and identify methods to support patients in their decision that results in improved outcomes for pre-dialysis patients. One high quality proposal has been supported and will commence soon.
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Cutting-edge research for now and the future... Completed projects Joesph Chilcot and his team have been measuring symptoms of depression and illness beliefs in 150 patients shortly after starting dialysis, and again at six and 12 months. They aimed to see if the proportion of patients who are depressed changed over time and whether personal beliefs about illness link to such change. Patients receiving different types of dialysis were compared, as were those who suddenly started treatment and those whose path onto treatment were planned. The study has helped improve the recognition of depression, helped define the need for screening, and improved the direction of support to dialysis patients who are depressed.
Stan White has researched Lowe Syndrome. This is a disorder that affects only males (women are carriers). It causes defects in the eyes, muscle, brain and kidneys. These problems cause cataracts, weakness, mental and growth retardation, and progressive kidney failure. Lowe Syndrome is caused by loss of function of an enzyme called OCRL1. Stan used a model organism (the zebrafish) to establish a model of Lowe Syndrome thus allowing detailed investigations into the mechanisms by which the symptoms of the disease are generated, and providing a convenient model in which drugs that may be of use in treating Lowe Syndrome can be tested.
Research into potential alternative to donor kidneys Dr Peter Hohenstein and his colleagues (pictured above) have begun an exciting three-year project to develop patientspecific kidney cells from adult stem cells. By identifying the appropriate genes to create induced Renopotent cells (iRs), they hope that real kidney cells can be created and used to treat the patient. A successful outcome of this project would provide a genuine potential alternative to the use of donor kidneys for transplantation. It’s research projects like this that could help people like Christy Millar:
Christy Millar Four years ago, Christy Millar was living a carefree student lifestyle. After a burst appendix her kidneys failed and she had to go on dialysis. A glimmer of hope came when her husband offered to donate his kidney. Unfortunately for Christy the donated kidney only lasted 30 seconds.
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people in the UK are being treated for end-stage kidney failure
Working with doctors and the community
Generosity of The Health Foundation helps fund quality improvement Kidney Research UK is delighted to have been awarded a grant from The Health Foundation to help us fund our ENABLECKD project, which aims to make improvements to the treatment of people with CKD and tackle the growing burden on the community. This is a new project for 2009/10 and thanks to the support and confidence from The Health Foundation, it offers us a significant opportunity to develop best practice on a wider scale in the primary care setting. This will lead to the development of skills and knowledge of clinicians and increase the meaningful and empowering involvement of patients. “We’re delighted that The Health Foundation has recognised the importance of providing the best quality of care for kidney patients with early stage kidney disease and we look forward to starting work on the project. We are also very grateful to the many organisations and individuals who have helped to achieve this invaluable grant award in such a key area of need.” Dr Kevin Harris, Key member of the project team
“Through the Closing the Gap awards, the Health Foundation want to support clinicians and clinical teams that aim to bridge the gap between current and best practice as this will deliver better care for patients. We are delighted to give Kidney Research UK and East Midlands Renal Network a Closing the Gap award which will aim to improve the quality of care of people with chronic kidney disease. It will also build knowledge and understanding among primary care staff about best practice in managing this disease.” Vivienne Little, Programme Officer The Health Foundation
Kidney Research UK signs up 500 to the Organ Donor Register Our Attitudes to Organ Donation study, part of the Charity’s Health Equalities programme, led by Professor Anthony Warrens, revealed that black and South Asian people did not have enough resources available to them to discuss, debate and come to a decision about organ donation. The study emphasised the need to get the relevant information into the grass roots. This would encourage more people to think about organ donation as there are disproportionately far fewer donors from these communities. We utilised a successful model used in some of our other projects and trained seven Peer Educators (PEs) from the black and South Asian communities of Harrow. Since last August until just recently, they have completed some tremendous work. We had only expected the PEs to start engaging with the local communities and sow the seeds of this information. However, they surpassed all expectations and managed to encourage more than 500 people to sign up to the NHS Organ Donor Register. Kidney Research UK is delighted and very proud of these achievements.
community PEs. Peer Educator Usha Shah said: “I am very passionate about the project and have never felt this kind of dedication to what I am doing.” This project is now being rolled out further afield and across other ‘at risk’ communities, thanks to funding from the Department of Health.
The work has helped to build capacity and generate unprecedented enthusiasm among the local
Improving chronic kidney disease treatment in Primary Care
Patient Pathway Project
Our Quality Improvement in Chronic Kidney Disease (QI-CKD) Partnership Project entered its final stages in 2009/10. This pioneering collaborative study, working with St George’s University Hospital of London and the University Hospitals of Leicester, will deliver an invaluable insight into the current treatment of patients with early stage kidney disease in Primary Care. It will also help to develop and evaluate new approaches to care involving patient empowerment techniques and a care bundle; a small number of evidence-based processes that have been demonstrated to work individually, so that performing them collectively and reliably improves patient outcomes.
The Diabetes Patient Pathway Project, funded by the Big Lottery Fund, has provided training for over 20 Peer Educators (PEs), including expert Patient Advisors. They helped raise awareness and provided advice on the disturbing link between kidney disease and diabetes. The PEs worked in London, Luton and Leicester and at a number of national events. This had a huge impact on the community. One middle-aged male said: “I never knew that diabetes would have a risk on my kidneys and that by making small lifestyle changes I can have better health. I have decided to stop eating ice cream every day – now I eat it only as a treat! I’ll also walk a bit more and cut down on fried foods and try and drink more water. I am going to share the information I have learnt with my family and friends.”
The study will complete in March 2011.
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Funding projects
What it’s meant to me... Funding research to save lives is our core aim at the Charity and we strive to fund as many research projects as possible. This research will hopefully lead to breakthroughs within kidney disease, improving the quality of life of all sufferers. This is what our researchers have to say about receiving vital funding from Kidney Research UK for their projects:
Rosemary Bland Associate Professor, Warwick University
Rosemary’s primary focus is on vitamin D activation in the kidney. Rosemary said: “Funding from Kidney Research UK has allowed me to widen my own research and develop some independence. It has been pivotal in producing good highly cited papers and helped me gain my current role at the University.”
Dr David Kluth
Dr Tim Johnson
Medical Research Centre of Information, University of Edinburgh
Sheffield Kidney Institute, Sheffield University
Kidney Research UK has invested more than £1 million over the last ten years into studying the macrophage. David said: “I’ve been focusing on the macrophage for the last 10 years to develop a way to produce stem cells matched to a patient that will help prevent kidney scarring and heal an injured kidney, which would prevent some patients needing dialysis. Kidney Research UK’s funding has led me to carry on in science. The Charity’s faith in my research has helped me make huge scientific progress. It has aided my career progression so that I can carry on with important research that hopefully will see some breaking new developments.”
Tim is a Senior Lecturer (and previous Kidney Research UK Senior Fellow) at the University of Sheffield. He focuses on research into kidney scarring and has had some successful trials in stopping end stage kidney failure, which has been based on work undertaken in his Kidney Research UK Fellowship.Tim said: “I wouldn’t be leading a kidney research group today if it wasn’t for Kidney Research UK.Without recognition from the Charity I wouldn’t have had the status in the university structure to obtain a lectureship. It’s the prestige of having a Senior Fellowship that is crucial to helping you obtain tenured research posts in a university as well as attract research money. Now I can continue to work on kidney disease for the rest of my career.”
Blogging about research We’ve taken our blogging to another level. Not only do we ask our supporters to blog on our behalf, but we also encourage our researchers to blog on our website to discuss issues relating to kidney disease, explain key research we’re funding and highlight any new developments in science. Our Chairman, Neil Turner, Professor of Nephrology, has written a number of blogs for us over the past year about all manner of things related to kidney disease. Visit Neil’s blog at: www.kidneyresearchuk.org/neil
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Supporting patients Kidney patient support and involvement The Charity assists kidney patients by awarding Patient Support Grants to help buy simple everyday items, such as a washing machine, or help patients with un-met household bills. This often makes a huge difference to their lives. The Charity invested £145,000 in patient support in 2009/10, making 348 awards. Next year, we plan to increase funding in this area to £179,000. Worried patients, or concerned friends and families, can also call our Kidney Health Information line, obtain kidney health information direct from our website and be signposted to other trustworthy sources of information. Kidney Research UK is also a provider of information to the NHS Choices on-line resources.
Patient grants The Charity awards Patient Support Grants to help when it’s most needed. Brian Rees is an optimistic young 22year-old from Merthyr Tydfil who suffers from endstage renal failure along with a number of other serious conditions and is cared for full-time by his grandmother. His grandmother used all her savings to pay for an extension on her house to create a new bedroom and bathroom for Brian to help him move around more easily in his wheelchair. Unfortunately she didn’t have enough money to complete the job. Brian’s social worker applied to Kidney Research UK for a grant, and in August 2010, received money from the Charity to put towards finishing the extension. “Kidney Research UK provided the funding for all the tiling and carpeting for my new extension as well as a new washing machine and tumble dryer. Everything looks fantastic and I am so grateful for this help” – Brian “We are so very grateful for all the help and support from Kidney Research UK. The funding came through quickly and we were able to get all the tiling completed without any delay. Brian’s downstairs bedroom and bathroom will make his life so much easier and comfortable for him. I cannot thank or praise Kidney Research UK enough. They are marvellous!” – Brian’s grandmother
New patient DVD Kidney Research UK and NHS Kidney Care have launched a DVD aimed at providing better information for black and ethnic minority patients diagnosed with chronic kidney disease or end-stage renal failure. The DVD is the third in the ‘Living with Kidney Disease’ series project, which aims to support anyone who has been told by their doctor that they have some level of kidney damage. Participants in the production include the British Renal Society, Kidney Research UK, the Renal Association, the British Transplantation Society and the National Kidney Federation. The content of the DVD has been driven by patients who themselves are living with chronic kidney disease and can provide a first hand view of their experiences. The DVD is presented by Dr Addo Djangmah (pictured above) and covers what the kidneys do, what causes chronic kidney disease, managing kidney disease, diet and lifestyle and how patients can work in partnership with clinicians to manage their disease. Welcoming the launch of the DVD, Director of NHS Kidney Care, Beverley Matthews said: “These DVDs are an incredibly valuable resource for patients and we are delighted to have been able to support their production.They provide vital information to patients, which will enable them to make the right choices about their lifestyle and, if necessary, treatment plans.”
Kidney Health Information Kidney Health Information is a free information service for kidney patients, their families and carers, as well as medical professionals and researchers. The service was set up by the Charity to offer members of the public information on kidney disease, which is educational and understandable. For many people who have been just diagnosed with kidney disease, or have a relation or friend with kidney disease, we’re often the first port of call for information. Therefore we’ve provided information on a dedicated section of the Kidney Research UK website with fact sheets, recipe ideas for patients, and a number of case studies to read. If people prefer to speak to somebody they can also contact the Kidney Health Information telephone line. www.kidneyresearchuk.org
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Partnerships Kidney Research UK welcomes the support offered by companies on both a national and regional level
Scotland’s first ever kidney disease awareness scheme The Charity has launched a community kidney disease awareness scheme in Scotland, thanks to the fundraising efforts of 950 staff at Kwik Fit Insurance’s headquarters in Uddingston. They raised an amazing £44,000 in 2009 and handed the cheque to us in February this year. The new initiative – which is part of Kidney Research UK’s Health Equalities programme – will start in Glasgow before it is hopefully to be rolled out to the rest of Scotland. The initiative will target those communities deemed to be ‘at risk’ of developing kidney disease. At risk communities include those that have
a close family member with diagnosed kidney disease. It also includes the South Asian, black African and Caribbean communities, who are considered to be high risk because of the prevalence of high blood pressure and diabetes within these groups. The money will allow the Charity to recruit and train lay members of these communities to become Peer Educators. Main picture above from left to right: Bobby Singh, kidney patient, Neerja Jain, Kidney Research UK, Brendan Devine, director from Kwik-Fit Insurance and Kyle Aitken, kidney patient.
“We are incredibly proud of our staff raising so much money for such a worthwhile project. Several of them have personal experience of the terrible impact that kidney disease can have. They’ve worked tirelessly for Kidney Research UK and their efforts will provide a real benefit for people who are at risk of developing kidney disease in Scotland.” Brendan Devine Group Managing Director of Kwik Fit Financial Services.
90 % of people on the transplant list, that’s around 7,0 0 0, are waiting for a kidney transplant
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Legacy Reception at Burghley House As part of our successful annual programme of receptions around the UK, in July this year we invited local supporters of the Charity to join a Legacy Reception at Burghley House. This is a beautiful historic house located in Stamford, Lincolnshire and not far from our offices at Nene Hall, Peterborough. These very popular events offers the Charity the unique opportunity to bring our work to life, highlighting our research breakthroughs and current study programmes. We also talk about our future plans and most importantly how leaving a gift in a Will can save lives. At the Burghley House reception Dr. Alan Bevington from University Hospital, Leicester, presented on his current research activity which is being funded by the Charity. Dr Bevington was joined by Kidney Research UK’s Legacy Officer Sally Young and the Charity’s Director of Major Gifts and Legacies, Michael Nation. Over 70% of Kidney Research UK’s charitable expenditure goes directly into funding research, 40% of our funds raised come from our wonderful supporters who leave gifts to us in their Will. For nearly 50 years the Charity’s commitment to working with some of the UK’s best scientists has helped to develop better treatments and tackle head on this life-limiting disease. Peter Sto rey,
Gifts received 2009/10
Kidney R e and a lo search UK, cal supp orter
Kidney Research UK is grateful to everyone who so generously remembered us with the gift of a legacy in their Will, which raised £2,240,389 for vital research in 2009/10.
Barclays Bank support our annual Advent Service We’ve had support on a local level from Barclays Bank, who have very kindly helped fund our annual Advent Service at Peterborough Cathedral. The service celebrates ‘the gift of life’ and is always a huge success with local supporters. It is our opportunity to thank them and highlight the work of the Charity, and kidney disease, to the Peterborough community. It is a unique and magical evening with around 2,000 people attending each year.
“We aim to engage and support employees to work with the causes they care most about. We want to harness their energy, time and skills because we know they have a huge amount to give and gain by being involved. We very much look forward to continuing our relationship with Kidney Research UK.” Matthew Peek Corporate Director, Barclays Bank Peterborough Branch
Benefactors scheme We need our best scientists to achieve breakthroughs and we want to offer supporters the opportunity to be pioneers themselves, backing the scientists at the forefront of renal research. Being a benefactor is a unique opportunity to develop a closer relationship with these inspiring people and make a significant difference. We have over 150 benefactors supporting our Fellows and we need to support more kidney research innovators as the prospect of what they could achieve is exciting. It is only with continued investment that we will see success and take a step closer to delivering that vital next breakthrough. www.kidneyresearchuk.org
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Our supporters Some of the ways in which supporters can help is by setting up regular donations by direct debit, donating online, or through buying lottery tickets. We are grateful to all our supporters, whichever way they choose to help. Some go the extra mile to raise money on our behalf:
Inspirational Stephanie
Helped to raise £3,000 so far Stephanie McKay is an inspirational sevenyear-old with very badly damaged kidneys. This year, she is waiting for a transplant. Stephanie is also deaf and wears a hearing aid. She has a fantastic family and support group around her, including her school. Every night she spends 10 hours tied up to her dialysis machine. Stephanie and her family are keen to raise as much money as possible to fund research in the hope that one day a cure will be found. In September they took part in the Great North Run in Newcastle and in October they will be trekking up Ben Nevis in Scotland. So far they have raised over £3,000. Stephanie’s mum said: “Stephanie is very brave and we are all very proud of her. As a parent it was devastating getting the initial diagnosis and then to find out that there is currently no cure available. This drives us as a family to raise money to fund essential research into finding a cure.”
Amy Leigh
Helped to raise £5,500 so far On 1 February 2010 Amy set off from Guy’s Hospital in London and headed east in an attempt to walk the entire coastline of mainland Great Britain. The journey will take approximately eight months to complete and during the challenge Amy will be walking EVERY day, covering between 20 and 40 miles. To attempt this challenge she has given up her job, rented out her flat and put her personal life on hold. This is a very important event to Amy, who is doing the walk in memory of her brother Dean, who died of renal failure in 2005. Sadly, 3,000 people a year die while on dialysis and 300 people die while waiting for a kidney transplant.
Jim Moore
Helped to raise £3,500 so far Jim was diagnosed with acute kidney failure in October 2007 and was given dialysis intensively three days a week until his life-saving kidney transplant surgery in 2008. Jim said: “My life changed at 9pm on 26 August. Addenbrooke’s Hospital had a kidney that was a match. Eight days later I left hospital a new man. With no more dialysis, I can eat and drink as normal; you wouldn’t believe what a difference that makes.” To celebrate his ‘gift of life,’ and to raise vital funds for Kidney Research UK, Jim cycled from London to Paris as part of a team challenge.
The prevalence of kidney failure is increasing by at least 12
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5% every year
Social networking: reaching out to on-line communities We see a boom in our social networking sites… Over the last year we have harnessed the power of digital media and social networking to engage with, and draw our supporters closer to us. In addition to email marketing, with content targeted to supporter interests through Briefyourmarket.com, we have successfully used Facebook, YouTube, Twitter and Flickr. The growth of our social media sites has been rapid. Not only have the results been highly successful, in terms of growth of supporter numbers, but the on-line community created has taken on a life of its own. Facebook supporters start their own discussions, offer mutual support and promote Kidney Research UK through networking. We are pleased to manage our social media but firmly believe it belongs to our supporters.
The Goddard family Helped to raise £7,000 so far “Our son Oliver was born in August 2009 and has chronic kidney failure. Currently, Oliver’s condition is managed through medication and diet, and he receives specialist care to ensure his solitary kidney stays as healthy as possible, for as long as possible. At some point during his childhood he will need a transplant to survive, and will need at least three during his lifetime. A transplanted kidney lasts, on average, 10-15 years.” James Goddard James Goddard (Oliver’s dad) and uncle Dan (both pictured above with Oliver), and family friends Faye and Frank Clarke took on a challenge of their own, the Three Peaks Challenge! They climbed Ben Nevis, Scafell Pike and Snowdon, the three highest mountains in the UK, in 24 hours. They walked a total of 25 miles, drove a distance of 450 miles and climbed a total of 10,000 ft.
Supporter blogging Kay Noone was diagnosed with polycystic kidney disease in both kidneys at the age of 13. In January 2010 Kaye was admitted to hospital and had to have her left kidney removed. She wrote on her blog: “I was discharged having lost three months of 2010 and my left kidney.” Kaye regularly blogs on our website and shares her experiences to help others understand what she’s going through. Visit Kay’s blog at: www.kidneyresearchuk.org/kay
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Our people Patron Angela Rippon OBE
Welcome to our new trustees
National President Lord Thomas Chandos of Aldershot
Tracey and Maddy joined the Board of Trustees in 2010, we are looking forward to working with them
Vice Presidents Professor David NS Kerr CBE FRCP
Professor Andy J Rees MSc FRCP
Chairman Professor Neil Turner PhD FRCP Trustees Mr John H Bartlett Professor J Andrew Bradley MB ChB PhD FRCS
Mr Andrew Gaulter Professor Tim Goodship BSc MD FRCP
Professor Peter Maxwell MD PhD FRCP
Mr Jeremy Nicholls Professor Michael L Nicholson MD DSc FRCS
Tracey Rose (appointed 29.03.10) Maddy Warren (appointed 07.12.09)
Our researchers We currently fund over 93 researchers with active grants, these total an ongoing research commitment of £10.1 million. Our researchers’ work promises hope for the future of kidney patients.
Maddy Warren Maddy was 13 when out of the blue she developed an autoimmune condition that attacked her kidneys. After a year undergoing many different aggressive treatments for the disease, her kidneys failed and she started peritoneal dialysis for 10 hours every night. She has now been dialysing for nearly nine years. She had a kidney transplant donated from her dad in 2003, but sadly the disease recurred in the new kidney almost immediately, and it had to be removed. There is no option for her to have another transplant until further research is done into treating and curing her condition, hence the work of Kidney Research UK is so important for her and thousands of others.
Tracey Rose Tracey became involved with Kidney Research UK through the Lay Advisory Committee in 2008. However, her experience of kidney disease goes back to the 1990s when her two teenage daughters were diagnosed with renal failure and were put onto continuous ambulatory peritoneal dialysis (CAPD). Tracey went on to donate a kidney to one of her daughters, which subsequently failed due to the same familial but undiagnosed disease. Thankfully both daughters are now well and have been lucky enough to receive donor organs through the national transplant list.
On the move In May 2010 TV presenter Angela Rippon OBE, patron of Kidney Research UK, and Harry Potter star Warwick Davis, a keen local supporter of the Charity, officially opened our new offices in Peterborough. The move provides the Charity with the ideal environment to help us fulfil our mission to fund life-saving research into kidney disease and to improve the quality of life of those with kidney disorders. It also allows us to be together as one team in a single location.
Community Fundraising Managers We have a team of Community Fundraising Managers across the UK, who work with their local supporters to raise vital funds from their area. We are fortunate to have over 300 regular volunteers who help us to fundraise and run our shops. In addition there are thousands more who participate in events and collect in our house-to-house appeals.
3,000
In the UK people a year die while on dialysis and a year are dying waiting for a kidney transplant
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Awards AMRC Science Communication Awards 2009
Committees Research Grants Committee Professor Fiona Karet PhD FRCP FMedSci – Chair An independent committee of scientific and medical experts, which scrutinises grant applications for quality of science, on which basis they recommend to the Trustees those suitable for funding. Patient Grants Committee An independent committee with expertise in patient issues and which awards welfare grants to patients. Lay Advisory Committees – England and Wales, Scotland and Northern Ireland These two independent committees provide advice, user knowledge and lay views to the Charity, on particular activities and topics.
Nene Hall
team
Medical Advisors A panel of clinical and non-clinical experts who assist and advise the Charity on medical and research matters. Full details are available on our website: www.kidneyresearchuk.org/ourpeople ...and not forgetting our dedicated employees and volunteers.
Third Sector finalists
Nene Hall team Kidney Research UK has a team of staff and volunteers based in new offices at Nene Hall, Peterborough.
Kidney Research UK was a finalist in the Third Sector Excellence Awards 2009 for the category ‘direct marketing campaign’. We were shortlisted amongst some strong competition, the winning entry being Save the Children; however two other entries were ‘highly commended’, of which we were one.
Volunteers - a valuable asset We have hundreds of volunteers working at our head office or supporting our Community Fundraising Managers at a local level. Without volunteers we would not be able to raise anywhere near the monies we need to fund our vital research into kidney disease. Sarah Greene (right) is a volunteer who has been working with us since June this year. Sarah is a Turkish student currently studying for an MA in Communications and Media Studies at Coventry University, who wanted to prove she could ‘hack it’ in a PR role – and get that competitive edge. With Sarah on board we’ve been able to increase our regional press coverage, and in return we have given her the opportunity to use what she’s learnt from her university course. With the right development opportunities for volunteers, we often see them staying with us for a long time. Violet Hasdell (far right) is a volunteer who has worked with us for two years at our head office – part-time, two days a week. She has managed to build upon her IT skills and has seen benefits on a personal level. Violet has also won this year’s Kidney Research UK’s Volunteer of the Year award for all her hard work over the past two years. Violet was presented with the award at this year’s employee and volunteer conference.
Kidney Research UK was very proud to be awarded runner up in the 2009 The Association of Medical Research (AMRC) Science Communication Awards for the ‘Patient and Public Involvement’ category. AMRC’s awards reward the very best science communications practices of their 115 member charities, and is the only scheme to recognise specifically the important role played by medical research charities in engagement, involvement and public understanding of science.
Each year, charities and organisations are recognised by the awards for their work within the voluntary sector. The Third Sector Excellence Awards have rapidly gained pre-eminence as ’the awards to win’ in this dynamic, challenging, yet hugely rewarding sector for registered charities, not-for-profits, social enterprises and campaigning groups. Other charities in the same category were: Crisis, National Trust/DMS, NSPCC,The Prostate Cancer Charity, Shelter and WWF.
“The Charity has helped me make use of my IT knowledge and I’ve been given the opportunity to learn new skills. Volunteering has given me more confidence, and working just a few hours a week keeps my brain active so I feel happier and healthier. And knowing that, in whatever small way, I am also doing good work for people who need the Charity’s help, feels great.” Violet Hasdell Volunteer
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How we use your money Income 2009/10 Last year, our generous supporters gave over £7.4 million to our commitment to beating kidney disease, with investment income adding £261,000 to this total. We invested in raising the number of our supporters to secure more funding for research in future years. Despite this we were able to keep the cost of generating funds at 34% (excluding trading and exceptional costs). That means for every pound we raised, we spend 66 pence on research, awareness and patient support, with 34 pence going to raise the next pound. For the second year, we increased our research and training grants this year by £458,860 in 2009/10 – that means we spent a total of £2.9 million – and we have committed to increase our grant awards by £995,000 in 2010/11. Our commitment to raising awareness of kidney disease increased by 16.5% to over £1 million in 2009/10 and we increased our support to kidney patients with over £145,000 given in patient grants.
Corporate, trust & statutory income 6%
Investment income 3%
Shops 8% Events 12%
Legacies 29%
Lottery(Raffles) 10%
Donations 32%
Expenditure on charitable activities 2009/10 Patient support £145,000 4%
Awareness & education £1.1million 26%
Our high street shops are a vital contribution to our work We have eight shops around the country, which raise vital funds for our research into kidney disease. We encourage people to support us by making purchases in our shops and donating clothing and other unwanted items.
Research, training & development £2.9 million 70%
3 million
Right now, people in the UK are under threat from kidney disease 16
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Thank you We are extremely grateful to everyone who has made our work possible. We would particularly like to thank: Air Training Corps Middlesex Wing Alex and Julie Gibbs All ABLE Peer Educators All ABLE PI’s All Saints Primary, Marple Ami Agbolegbe AMW Charitable Trust Amy Leigh Annandale Charitable Trust Annett Charitable Trust Arnold Burton 1998 Charitable Trust Bam Construction Barclays Bank Plc Baron Design Baxter Healthcare Ben Spinks Bernard and Ann Ball Bernard Coleman Charitable Trust Bernard Piggott Trust Bernard Sunley Charitable Foundation Bingham Trust Blackburn Sports Council Bobby Mudhar Brabners Chaffe Street BT Glasgow (Elaine Sherlock) Carol Lamb and Jamie Sutherland Carter Jonas Cazenove Capital Management Ltd Cheadle and Marple
6th Form College Christy Millar & Steven Boyer Cirencester Tangent Club Colin and Gill Southgate Coloplast Ltd Cormar Carpets Cotgrave Place Golf Club County and Station Hotel, Matlock Coutts Charitable Trust Cruden Charitable trust Damon Bullimore and Rick Palmer, Brief Your Market Debenhams, Glasgow Design Partners Diligenta Ltd E H Smith Charitable Trust Ekspan, Sheffield Ellie and Nigel Parkes Eranda Foundation Eric Doughlin and Amanda Cillery Eveson Charitable Trust Experian Faisaltex Charitable Trust Farzana Latif and the Open College Network Felicity Wilde Charitable Trust First Steps Children’s Nursery, Harborne Fowler Smith and Jones Charitable Trust Freshchoice G M Morrison Charitable Trust G G Granvilles Gail Colquhoun George Henry Collins Charity
Glasgow City Builders Gradian Systems Ltd. Greenwoods Solicitors LLP H J Charitable Trust Harry Payne Trust Hathern Football Club Charity Cup Committee The Health Foundation Hospital Saturday Fund Charitable Trust Inman Charity Trustees Limited Ivan Klasnic and Bolton Wanderers FC J R Corah Foundation Fund J S F Pollitzer Charitable Settlement Jack Norfolk and family Jennifer Griffiths John and Alison Warwick Jones 1986 Charitable Trust Justin Glue and family Kasner Charitable Trust Kwik Fit Insurance, Uddingstone Lady Hind Trust Layer Networks Ltd Lincote Resource Centre, Swadlincote Lisa McKain Little Carver Theatre Lynn Foundation Manchester Cathedral Manchester Youth Soul Choir Mansfield Radio 102 Mansfield Town FC Marple Business Forum Martha, Paula and Dan Stringer, family and friends MAS Foundation Maud Elkington Charitable Trust
Media Matters Melanie Sheppard Mellor Church Women's Fellowship Metropolitan Police Cadets Mid Kent College Mike Mollart-Rogerson Moorside Cricket & Bowling Club Moorside Grange Hotel Morris Charitable Trust Mrs Ballinger Murphy-Neumann Charity Co. Limited Nautilus Trust NHS Birmingham East and North, NHS Ealing, NHS Leicester, NHS Luton Nicola Greensmith Nikal North Cestrian Grammar School Nottingham City Hospital Dialysis Unit Nottinghamshire Kidney Units Appeal Group Oglesby Trust Oswestry School Pearson Family Second Settlement Pencilfish Ltd Penny in the Pound Fund Charitable Trust Peterborough Cathedral PFC Mortgages Phil Bilson, BBC PM Charitable Trust Prakash Modi Print 4 Business
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Thank you Professor Azhar Farooqi OBE and East Leicester Medical Practice Proven Family Trust PZ Cussons QI CKD Patient Empowerment Expert Group R M Burton 1998 Charitable Settlement Ratcliffes Charitable Trust Raymond Webster, Lemark Office Equipment (North) Ltd RAYNET (North London) Rest Harrow Trust Richard and Christine Reynolds Richard Cadbury Charitable Trust Rob Jackson, Volunteering England Roger Raymond Charitable Trust Romiley and Marple Lions Ronald and Barbara Abbott Charitable Trust Rosetrees Trust Roy Pickervance, DAQs Satty & Bobby Singh, Glasgow Sheraz Yaqub Shire plc Shoosmiths Sir Cliff Richard Charitable Trust Sir James Knott Sir John Eastwood Trust Sir John Sumner's Trust Sir Jules Thorn Charitable Trust Sir Samuel Scott of Yews Trust Solway Steel Ayrshire
Sovereign Health Care Charitable Trust Stella Symons Charitable Trust Stockport Grammar School SW1Ltd. Advertising, PR and Design Tangible: Tarporley Rotary Tay Charitable Trust The Aztec Hotel & Spa at Bristol The Big Lottery Fund The Department of Health The Freemont Group The Health Foundation Thomas Farr Charitable Trust Tim Hoyle, Health Trainer Lead, NHS Harrow Titus Augustine, Manchester Royal Infirmary Tom Downes, Whittingham Riddell Tony Egginton, Executive Mayor of Mansfield Tracie Greenaway Trinity High School Choir Vandervell Foundation Vhojon Restaurant, Mansfield Vinod Soni W A Cargill Fund W Wing Yip and Brothers Foundation Walkers Crisps Warsue Charitable Trust William A Cadbury Charitable Trust Wilmcote Charitrust Wyndham Charitable Trust Yorkshire & Clydesdale Bank Foundation Yorkshire Building Society Charitable Foundation
Kidney Research UK’s Research Grants Committee Our Research Grants Committee is a group of eminent scientists and medical professionals who have the difficult task of deciding which research proposals can be funded by the Charity.
Kidney Research UK’s Lay Advisory Committees Kidney Research UK is grateful for the support it receives from its Lay Advisory Committees. These comprise patients and carers who input into the agenda on renal matters on behalf of the Charity and advise on many aspects of communicating with kidney patients.
Kidney Research UK’s Patient Grants Committee Our Patient Grants Committee has members who are patients, renal social workers, dialysis nurses, transplant coordinators and GPs who weekly help us assess individual patients requests for help.
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Looking to tomorrow:
our vision for the next 50 years The challenge The prevalence of kidney failure is increasing by at least 5% every year, making progress towards better treatments and ultimately cures, all the more vital. Currently, Kidney Research UK can only fund one out of every five research proposals submitted to us.
I’d like to see Kidney Research UK grow to become the ‘go-to’ charity that everyone associates with research into kidney disease. It would be great to see relevant ambassadors and spokespersons shouting about the role that the charity plays in the progression of modern medicine.
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The support of Kidney Research UK over the last decade has enabled my group to identify the molecular mechanisms responsible for a rare renal disease and develop logical targeted treatment for it. In the next five decades I believe that Kidney Research UK will play a major role in developing novel therapies for rare renal diseases.
Tim Goodship Researcher
Thanks,
Charles Kernahan
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I would like to see an increase in the general public’s awareness of the Charity and better understanding of what kidney disease is. With health promotion and awareness this could lead to the prevention of some types of kidney disease and will give those with the disease a better knowledge of the support and services available through the Charity.
Our vision Over the next ten years, we want to double our income and treble our impact on kidney disease. Over the next 50 years, we want to create a world in which risk of kidney disease is greatly reduced. There will be far better education, earlier diagnosis and prevention. We will find cures for kidney diseases, especially those that affect children, and ultimately, more people will have a better quality of life and survive kidney disease.
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Ami Agbolegbe Kidney patient
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Helen Leslie-Smith Renal Nurse
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The development of kidney perfusion machines will allow kidneys to function outside of the body giving an opportunity to use gene therapy and stem cell biology to prevent post-transplant rejection and improve kidney function.
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Mike Nicholson Researcher
Chief Executive, Kidney Research UK
I’d like to see twice as much money being invested in research into kidney disease, with improvements made into keeping damaged kidneys healthy. This would lead to a reduction in those needing dialysis and/or transplantation. I’d like to see improved anti-rejection treatments and transplant results making transplants easier and longer lasting, ideally seeing over 75% of patients treated this way.
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Neil Turner Chairman
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I’d like to see Kidney Research UK established and recognised as one of the leading and most important charities in the UK and continue to build on what has been achieved over the past 50 years.
Mark Housden Marketing Officer (Development)
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I’d like see Kidney Research UK become a household name and be recognised as the number one driving force in searching for the cure for kidney disease. I would like to see huge corporate partnerships, celebrity endorsements and massive Kidney Research UK fund raiser events. I would also like to see the Charity having to shut up shop because a cure has been found.
Stephen King Community Fundraising Manager
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Our vision is a world free from kidney disease
Email: enquiries@kidneyresearchuk.org Tel: 0845 070 7601
Write to us: Kidney Research UK Nene Hall Lynch Wood Park Peterborough PE2 6FZ
Follow us: www.twitter.com/kidney_research www.facebook.com/kidneyresearchuk www.flickr.com/kidney_research_uk www.youtube.com/kidneyresearchuk
ORGANISATIONAL MEMBER
Registered Charity No. 252892 Registered Scottish Charity No. SC039245 Copyright Š 2010 Kidney Research UK