Annual Review 2011

t c a p m i n a g n i Mak e s a e s i d y e n d i k n o

W 20 10 -1 1 A N N UA L RE VI E

About us Who we are

The challenge

Kidney Research UK is Britain’s leading kidney charity, and the only charity dedicated to funding life-saving medical research into the treatment and prevention of kidney disease. We have more than £10.1 million invested in research at any one time and ultimately strive to find a cure for what is one of the fastest growing diseases in the UK – a disease which devastates families and claims thousands of lives every year.

More than three million people in the UK are currently at risk of kidney disease. A lack of public awareness in relation to kidney disease, combined with the illness’ ability to affect anyone, regardless of age, and the fact it presents few recognisable symptoms, means it should be a national health priority. In reality, however, very little government funding is set aside for research into kidney disease, while we as a Charity are only able to fund one out of every five prospective research projects.

What we do As well as campaigning tirelessly to increase public awareness around the dangers of kidney disease, Kidney Research UK uses the money it raises to award grants to doctors, nurses and researchers across the country. These individuals are responsible for conducting ground-breaking scientific and clinical research aimed at improving the lives of those suffering from kidney disease.

The Charity also awards grants to individual kidney patients so they can cope with the unexpected costs of their condition and campaigns for better patient access to renal services.

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Find out more at: www.kidneyresearchuk.org

Our vision Everything we do is geared towards the treatment and eradication of kidney disease. The research we fund takes us a step closer to a world free from this silent epidemic, and we remain committed to doubling our income and trebling our impact on the illness over the coming years, in order to achieve this goal.

Liam Byrne MP at the launch of Kidney Research UK’s Birmingham Young Peer Educator project.

Chief Executive & Chairman’s statement

Chief Executive & Chairman’s statement In 2011, Kidney Research UK celebrates its 50th anniversary, and in our review last year we reflected on our achievements over those 50 years. From our foundation in 1961, we have grown to become the leading charity dedicated to funding research into the causes, prevention and treatment of kidney disease.

And growth is something we continue to deliver, despite the challenging economic conditions during 2010/11. Kidney Research UK has increased its expenditure on research and support from £3.85 million in 2008/09 to over £5 million budgeted for 2011/12 – a rise of 33 per cent. We have been able to achieve this through prudent financial management of our investments and reserves, investing in the right fundraising activities and building our loyal supporter base, who continued to give so generously despite the recession.

The need for us to fund research into kidney disease is becoming more and more acute. It is a stark reality that more than three million people are at risk of contracting chronic kidney disease.

Every year, an estimated 50,000 people have to be treated for kidney failure and 3,000 a year sadly die whilst on dialysis. The prevalence of kidney failure increases at over 5% each and every year in England. There are no cures for this condition, only life-sustaining treatments such as dialysis or transplantation. Even transplants, should a patient be fortunate enough to receive one, is not for life - lasting only ten to 15 years on average.

This is why Kidney Research UK exists and why we need your support. We have made considerable progress in projects to make kidney transplants more successful, reducing the risk of rejection in patients.

We have advanced our understanding of a white blood cell, called a macrophage, and its potential in the treatment of acute renal failure and kidney scarring. Last year, we announced a major breakthrough, achieved by Dr John Bradley, identifying potential treatments for both kidney disease and kidney cancer. We are also working on the potential for adult stem cells to one day repair damaged kidney tissue.

We continue to work in partnership with

other charities, as well as industry and professional organisations, to make progress on a wide range of research and improvements in kidney health. We have invested a further £0.5 million in our work on rare diseases, especially those that tragically affect children.

Working closely with patients has also been a feature of our activity, with progress being made on improving treatment choice for kidney patients and the roll-out of a programme to improve how kidney disease is managed in general practice.

As we complete our celebrations in 2011 for our 50th anniversary, it is encouraging that we have increased our investment in

research whilst many other funders have been forced to cut their budgets. This review demonstrates how hard that investment is working to tackle the growing epidemic of kidney disease. However, we are still only able to fund one in five of all research proposals put to us. That is why we need to double our income and treble our impact on kidney disease.

Charles Kernahan, Chief Executive

Neil Turner, Chairman

kthroughs Discoveries & brea

With an estimated 50,000 people in the UK requiring treatment for kidney failure every year, our work has never been more important. Kidney Research UK operates at the cutting edge of scientific and clinical research – funding some of the brightest minds in the field of renal medicine. Here are just some of the breakthroughs made possible thanks to our fantastic supporters over the past year: Dr John Bradley

Dr Georgina Carr

Following a grant from Kidney Research UK in 2008, Dr John Bradley set out to investigate how a unique protein molecule called Tumour Necrosis Factor (TNF) interacts with kidney cells.

Having discovered that TNF not only repairs damaged kidney tissue but can also retard tumour growth, Dr Bradley’s work could lead to innovative new treatments for both kidney disease and kidney cancer. Kidney cancer is the eighth most common type of cancer in the UK and is responsible for three per cent of all cancers diagnosed in this country. The disease has increased in prevalence by a staggering 70 per cent over the past 20 years and now affects some 8,000 people in the UK alone.

Dent’s disease is a hereditary illness characterised by kidney stones, high levels of calcium in the urine and calcium build-up within the kidneys. It can also lead to renal failure in those it affects. Although researchers have identified the genetic mutation which causes Dent’s disease, they are yet to fully understand the process that causes the formation of painful kidney stones. Dr Georgina Carr has discovered that a protein involved in calcium handling in the kidneys can sometimes be found out of place in kidney cells, and that this may play an important role in the formation of kidney stones. Correcting this out-of-place protein may restore normal calcium levels in the kidneys and, in turn, help prevent stone formation.

Bev Payne Bev Payne was diagnosed with kidney cancer in January 2008, after a scan revealed she had a sizable tumour growing on one of her kidneys. Doctors informed her that, had the tumour gone undetected, it would have claimed her life within six months. Fortunately, Bev’s tumour was successfully removed four weeks later and she’s been cancer free ever since.

Sadly, however, many people are not as lucky, with thousands in the UK dying every year as a result of kidney cancer.

Henry Kimble Henry Kimble was first diagnosed with Dent’s disease when he was just three, and suffered kidney failure as a result. He received a kidney transplant in January of this year , but subsequent complications meant his remaining native kidney had to be removed. Henry is now completely reliant on his one transplanted kidney.

Dr David Vass

Cystic kidney diseases, such as polycystic kidney disease (PKD), are responsible for ten per cent of patients requiring dialysis and transplantation in the UK. As with most cystic kidney diseases, PKD is a genetic condition which causes fluid-filled sacks to develop on the interior and exterior of the kidneys. These sacks gradually replace normal kidney tissue, enlarging the organs and reducing their ability to function – eventually causing them to fail altogether. A recently discovered gene, involved in the onset of cystic kidney diseases, has provided a basis for the work of Dr John Sayer.

Dr Sayer is studying this specific gene closely and hopes not only to improve our understanding of the molecules which cause cystic kidney diseases, but also test potential new drug treatments aimed at preventing the formation of cysts.

Dr David Vass set out to investigate whether a newly transplanted kidney can be damaged by re-growth of the lymphatic system – the system responsible for transporting immune cells around the body.

The lymphatic system is not reconnected to a new kidney as part of the transplant procedure but successfully re-establishes itself over time, once the operation is complete. Dr Vass has discovered that lymph vessel re-growth is responsible for kidney scarring and may also play a significant role in transplant rejection. He has also identified how the molecule which drives this re-growth is produced.

By improving our knowledge of the lymphatic system in this way, Dr Vass’ work may help us develop new methods of detecting transplant rejection, as well as potential new treatments to prevent it from happening.

Carol Norbury

Alec Dignon

Carol Norbury’s family has a prolonged history of polycystic kidney disease. Her husband, John, was diagnosed with the condition in 1996, before going on to suffer complete renal failure in late 2004. Luckily, Carol was found to be a suitable organ donor. However, since then, each of Carol and John’s three children has been diagnosed with the condition.

Alec Dignon was diagnosed with polycystic kidney disease in his early forties and, at 67, has been on dialysis for more than 20 years. A transplant in September 2001 should have provided him with a new lease of life. Unfortunately, however, the organ was rejected and had to be removed after just a few months.

Call our donation line: 0800 783 2973

Discoveries & breakthroughs

Dr John Sayer

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Spotlight on achievements 2010/11 has been a year of significant achievement for Kidney Research UK. The Charity continued to increase funding for research and improve its impact on kidney disease, with key revenue streams and innovative new projects going from strength to strength. These are just some of the exciting things that we have accomplished…

Events

Regular giving

Legacies

The popularity of our overseas challenges and UK fundraising events continues to grow, with thousands of supporters taking part in sponsored activities, ranging from the London 2 Paris cycle ride and China Trek to the Great North Run and Ben Nevis challenge. In fact, these events have become so successful they accounted for more than £1 million of the Charity’s total income for the last financial year.

We have invested significantly in our direct marketing activities over the past year, with mail and telephone fundraising now major sources of income for Kidney Research UK. In particular, regular giving via direct debit - one of the most cost effective ways that people can give to charity - grew by £100,000 over the previous year.

Gifts in Wills play a hugely important role in allowing us to continue funding our life-saving research into kidney disease.

In fact, some of our most significant breakthroughs have only been made possible thanks to Legacies. It’s therefore encouraging to learn that the number of supporters pledging to leave a gift to Kidney Research UK in their Will grew by 42% for the year 2010/11.

Helping patients in need The Charity assists kidney patients who are in desperate need of financial help, by awarding Patient Support Grants. This often makes a huge difference to their lives by helping them with anything from unmet bills to buying household items. In 2010/11 the Charity invested £159,000 in patient support, making 219 awards.

Mother of three, Josee Lengo, was given a grant to help

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Find out more at: www.kidneyresearchuk.org

her with baby equipment for her third child. In 2007, Josee’s doctors diagnosed her with chronic kidney disease.

At only 23 years old, she never imagined her kidneys would fail. “It was a real shock,” she said. “I thought it was only elderly people who suffered from kidney disease. I spent a lot of time crying and got very depressed - I was really scared. I have to go to hospital for dialysis three times a week for four hours a day; it makes me feel dizzy

and weak. Now that I have kidney disease it’s difficult for me to work and I couldn’t afford to buy the things I needed for my new baby. I’m very grateful to Kidney Research UK for helping me.”

The Charity bought Josee a new push chair, steriliser, baby cot, car seat, carrier and monitor.

Ben Spink was diagnosed with Alport’s Syndrome when he was just seven. Placed on dialysis by the time he was 20, it wasn’t until four years later, in April 2009, that he finally received a kidney transplant. The young farmer from Lincolnshire has since gone on to be named Kidney Research UK’s volunteer of the year for 2010, after raising £22,000 by driving his tractor from John O’Groats to Land’s End – a journey of more than 800 miles.

Helping those at risk

World Kidney Day 2011

Glasgow children’s party

Last year, we expanded our highly innovative Peer Educator programme to help increase awareness of kidney disease amongst black and minority ethnic (BME) communities.

By promoting greater engagement around kidney disease and organ donation, the Charity encouraged more than 1,000 people from BME communities to join the Organ Donor Register.

We also received an award from the Association of Medical Research Charities (AMRC) for our work in this area.

In March, Kidney Research UK lent its support to the sixth annual World Kidney Day. The charity hosted a total of 22 World Kidney Day events, with NHS nurses offering free blood pressure checks to members of the public in towns and cities across the country. Close to 100 people received a free blood pressure test in Nottingham – several of whom were referred to their GPs for further tests.

In October 2010, we hosted a children’s party in Glasgow for over 150 young kidney patients from across Scotland. The event was a huge success and included special guests, TV presenter Carol Smiley, a Beatles Tribute Band and a Michael Buble tribute act – all of whom gave their time to support the Charity and meet the children and their families.

Spotlight on achievements

Star volunteer

Communicating with supporters and the media We are incredibly passionate about our supporters and regularly engage with them via our supporter magazine, as well as our direct mail campaigns and website. We do this in order to inform them about our research and how their donations are helping in the fight against kidney disease. We continue to be active

through social media channels such as Facebook, Twitter and YouTube - outlets which are not simply used to broadcast our key messages, but also offer us a unique opportunity to maintain an open dialogue with those who support us. Kidney Research UK has also enjoyed a successful year in the press, attracting ever

greater attention from the national media and continuing to position itself as the UK’s leading authority on kidney health. We have also seen a rise in regional media coverage, peaking in relation to certain key developments, while remaining consistently high on a monthly basis.

Call our donation line: 0800 783 2973

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Working in par tner ship

Patient involvement Over the past 12 months, Kidney Research UK has continued to develop a pioneering primary care project aimed at improving the treatment of patients with chronic kidney disease (CKD). First launched in 2009, ENABLE is funded by a grant from the Health Foundation and builds on findings from the Charity’s previous work, which focused on developing better ways to identify and treat the early stages of kidney disease.

Following this work, we recognised the need to share our knowledge and expertise with doctors and nurses at a primary care level, in order to help improve detection rates and delay disease progression. ENABLE therefore seeks to work with GPs and nurses on a practical basis – building knowledge and expertise in the management of patients with long-term conditions, such as CKD. Due to be completed in March 2012, the project is on target to engage with more than 30 medical practices in England and Wales, and has also been successful in training a network of kidney nurses in Ireland.

The ENABLE team is confident that they can continue to promote this innovative approach across the UK, benefiting more patients and helping the Charity to achieve its goal of saving more lives.

Quality care

Impact on rare diseases Thanks to a joint fundraising initiative between Kidney Research UK and the British Kidney Patients’ Association (BKPA), we spent much of the past year setting up a new service to aid research into 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 a number of rare renal conditions.

Given the nature of rare diseases, there is often a shortage of information available to both patients and clinicians alike. By bringing these parties closer together, the registry aims to improve the quality of care, information and research in this area.

In February 2011, the Charity also helped to launch the Action for Alport’s campaign. As well as looking to fund specific research into Alport’s Syndrome – a rare genetic condition which causes renal failure, loss of sight and deafness in those it affects – the campaign has established a working group to promote better screening methods and patient management for Alport’s patients.

Over the past year, we’ve continued to fund a unique study aimed at identifying whether elderly kidney patients in the UK are receiving the best possible treatment.

By studying 70 patients on Peritoneal Dialysis (PD) and 70 patients on Haemodialysis (HD), the BOLDE project seeks to ensure older individuals are experiencing the optimum quality of life while on dialysis.

Preliminary results from the project indicate that patients on PD find their illness to be less intrusive, compared to those on HD. Researchers also identified a lower incidence rate of depression amongst PD patients. These findings have prompted a closer look at the feasibility of assisted PD and emphasise the need to improve accessibility and choice around dialysis.

This research is supported through a partnership with Baxter Healthcare and led by Professor Edwina Brown at the West London Renal & Transplant Centre.

Corporate, trust and statutory income

12%

Shops

3% Legacies

25% Events

13%

Patient support £159,000

Investment income

4%

7%

Income 2010/11

Lottery (raffles)

10%

Financial statement

Financial statement

Awareness and education £1.2 million

25%

Expenditure 2010/11

Research, training and development £3.5 million

72%

Donations

29%

How we use your money Despite the continuing tough economic climate of 2010/11, our supporters generously increased their donations by 4% to £8 million.

This increase, in part, has come from our continuing investment in raising the number of supporters.

For every pound we raised, we spent 63 pence on research, awareness and patient support, with 37 pence going to secure more funding for research in future years.

For the third consecutive year we have increased our research and training grants. This year we awarded an additional £640,000, giving a total of £3.5 million. In 2010/11 our Trustees have committed to a further increase of £957,000, giving a total direct charitable expenditure amount of over £5 million in the year.

Our commitment to raising awareness of kidney disease increased to £1.2 million in 2010/11, with support to kidney patients increasing to £159,000 (which was given in patient grants).

Call our donation line: 0800 783 2973

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Inspiring suppor t

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Scott Fairbrass

Stephanie McKay

Scott is a lifelong kidney patient who ran the 2010 London Marathon in support of Kidney Research UK. He finished the race in six hours and 24 minutes, after an ankle injury meant he had to walk most of the 26-mile route. In doing so, he raised over £3,000 for the Charity.

Stephanie has chronic kidney disease and had to dialyse for 10 hours every night before receiving a transplant in 2010. She was just eight at the time. Stephanie’s family have campaigned tirelessly for Kidney Research UK since her diagnosis and raised almost £7,000 for the Charity last year.

Zainab Khan

Tina Young

Zainab was diagnosed with kidney failure in 1990 and spent more than a decade on dialysis before finally receiving a transplant in 2007. She is now a passionate supporter of Kidney Research UK and raised more than £800 for the Charity by taking part in the London Bridges Walk in 2010.

Tina is a former kidney patient who, prior to receiving a transplant in May of last year, had to undergo dialysis three days a week, for six hours at a time. The manager of a children’s nursery in Birmingham, Tina organised a ‘Toddle Waddle’ for World Kidney Day 2010 and raised over £2,000 for Kidney Research UK.

Find more outat:more www.kidneyresearchuk.org at: www.kidneyresearchuk.org 10 outFind

Helen Ashley Helen was diagnosed with steroid resistant nephrotic syndrome in 1996, when she was just six years old. Placed on peritoneal dialysis at the age of nine, it wasn’t until 2001 that she finally received a kidney transplant. Now a student at Nottingham University, Helen ran the 2010 Great North Run for Kidney Research UK and raised £130.

Stewart Cleaver Stewart, 34, suffers from polycystic kidney disease – a condition which also affects his mother.

Despite his illness, Stewart took part in Kidney Research UK’s London 2 Paris cycle ride in June 2010 and raised more than £1,000 for the Charity. He had less than 20 per cent of his kidney function at the time.

Scott Hawes Scott has been a transplant and dialysis nurse at the Queen Alexandra Hospital in Portsmouth for over seven years. Inspired by the patients he treats, Scott ran the Great South Run for Kidney Research UK in October 2010, raising £240 to help fund further research into kidney disease.

Beata Seymour Many of our Legacy supporters are kidney patients who leave gifts in their Wills despite knowing they are unlikely to benefit from any subsequent breakthrough. Beata Seymour suffers from polycystic kidney disease (PKD) and hopes her Legacy will help encourage research that might one day prevent others from developing kidney disease.

Corporate sponsors With help from corporate sponsors like Barclays Bank, Kidney Research UK’s 2010 Christmas advent services raised more than £10,000 to help fund further research into kidney disease.

Thank you Kidney Research UK is unbelievably grateful to everyone who has helped to support the Charity in any way, shape or form over the past year. Please visit our website for a full list of those whom we wish to thank:

www.kidneyresearch uk.org/thankyou

Inspiring support

funding ground-breaking research into kidney Only through the generosity of our supporters are we able to continue gone to help us with our work, and why... disease. Here are just some examples of the lengths to which people have

To help us in our life-saving research, call our donation line free on: 0800 783 2973 We accept all major credit & debit cards

www.kidneyresearchuk.org

50 years of funding research to save lives

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

Like: Kidney Research UK on Facebook Follow: @kidney_research on Twitter Registered Office: Nene Hall, Lynch Wood Park, Peterborough PE2 6FZ. Kidney Research UK is a limited company registered in England.

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