Update Magazine July 2015

UpdateTHE MAGAZINE FROM KIDNEY RESEARCH UK

Summer 2015 Issue 7

Chronic Kidney Disease (CKD)PAGE 10

We’re on the verge of a transplant revolutionPAGE 06

Special Easter egg hunt in AprilPAGE 03

Sumptuous Scallops for SummerPAGE 09

KR8717 - Update Summer 2015 v3.indd 1 09/06/2015 12:19:59

Summer is well and truly here!

I am most definitely happiest when the sun is shining. So when it

came to planning this edition of Update we wanted to inject a little sunshine in. What better way to do this than to talk about some of the fantastic

new projects we are able to fund thanks to your support.

Within the ‘research round up’ on pages 12 and 13 you can read about Dr Bowen’s study which could lead to the development of new acute kidney injury screening methods. And Dr Bockenhauer and Professor Kleta’s team’s study helping to prevent kidney stones.

We’ve also spoken to Andrew Smith, a photographer and kidney patient, about his top tips on how to take great photos whilst out and about enjoying the sunshine. To ensure you’re safe in the sun, Boots have given us a guide to the best sun creams available on pages 8 and 9.

You may recognise the front cover shot. Professor Mike Nicholson has featured within Update before, however we couldn’t resist using it again as we have some exciting news regarding our Making EVERY Kidney Count campaign. Read on to find out more…

Enjoy!

Nicola Davies, Editor

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The Denmark-based company, which develops and markets medicines for the treatment of iron deficiency, is supporting an 18 month research project led by Professor Sunil Bhandari at Hull and East Yorkshire Hospitals NHS Trust.

Managed by us, the study will involve 54 patients in three renal units. It will examine whether giving intravenous iron to patients with advanced CKD, who are deficient in iron but not yet anaemic, could improve their symptoms; physical agility, ability to exercise and their heart function.

Iron deficiency and anaemia are common complications in CKD. In both cases patients can suffer from debilitating weakness and fatigue as well as problems with cognitive function. All of which can result in a poor quality of life and wellbeing.

Cardiovascular disease is also a problem in CKD patients and both anaemia and iron deficiency are thought to be contributing factors. Iron also has a number of other important roles in the body, particularly in the function of muscles (including the heart muscle).

This pilot study could lead to a larger clinical trial in around two years’ time.

Iron deficiency specialists Pharmacosmos fund new CKD study Independent pharmaceutical company Pharmacosmos is funding an important pilot study into the potential benefits of giving intravenous iron to patients with advanced chronic kidney disease (CKD).

Urban Voices Collective Charity Concert in aid of Kidney Research UKCome and enjoy a very special evening of musical entertainment and help raise funds for our Making EVERY Kidney Count Appeal.

This charity concert will feature the unique sounds of Urban Voices Collective who will raise the roof singing a variety of popular, contemporary and classical songs. The distinctive style and outstanding vocals of this London based collective have granted them countless performances with artists such as Take That, George Michael and Alfie Boe. Their credits also include performances at the BBC Proms, the London 2012 Olympic closing ceremony and the 2013 Royal Variety Performance. Fusing traditional gospel with soulful harmonies, the group will be sure to bring the house down with their infectious energy – certainly not an event to be missed!

Organised by Festival Estival the concert will be taking place at Holy Trinity Church, South Kensington, London on Tuesday 20 October 2015 at 7pm.

For tickets and further information please visit: www.festivalestival.com


Call our donation line: 0800 783 2973

NEWSROUND // P03

Shopping centre teams up for kidney researchOur new fundraising partnership with Serpentine Green Shopping Centre in Peterborough got off to a cracking start with a special Easter egg hunt in April.

We will be working together to host a series of fundraising events at the centre throughout the year.

Our Charity of the Year partnership with Queensgate Shopping Centre, Peterborough recently came an end after raising a fabulous £12,000.

Thank you for sharing! Thank you to everyone who took part in our recent #couldntlivewithout campaign, to help raise awareness of kidney disease.

We asked celebrities, kidney patients and the public to share something – big or small – that they #couldntlivewithout. The resulting media coverage ensured our campaign reached millions of people across the UK.

We keep kidney disease on the political agendaKate Green, MP for Stretford and Urmston, recently visited Manchester Royal Infirmary to learn more about the Kidney Research UK funded research into kidney disease which is being carried out at the institute.

She said: “Kidney disease is a growing problem in the UK, but it does not receive the same attention, or funding, as other disease areas. This needs to change.”

And in Scotland, MSPs recently attended a special event in the Scottish Parliament, hosted by Sandra White MSP to celebrate the first year of our Peer Educator Programme in Scotland.

MP for Stretford and Urmston, visited Manchester Royal Infirmary

Easter egg hunt in April

I #couldntlivewithout #dialysis three times a week!

Angelo Joseph@AngeloJoseph

I have 4 kidneys but none of them worked! I #couldntlivewithout my fistula and home dialysis machine

Joe Brown @iamjoebrown

#couldntlivewithout my amazing family...

Shelley Black

I #couldntlivewithout my amazing mum

Christy Millar@ChristyMillarUK

I #couldntlivewithout my sister and best friend

Vicky Pattison@VickyGSshore

I #couldntlivewithout my dog

Dr Dawn@DrDawnHarper

Text KIDNEY to 70099 & donate £3 for those who #couldntlivewithout @kidney_research



HOW YOUR MONEY’S HELPED // P04

An exciting new research project could be the first step towards extending the lifespan of kidney transplants.

If we can find effective and specific ways to block the development of harmful antibodies and predict those at risk of attack, we might then be able to introduce different, less toxic drugs. This could prolong the life of the transplant without significantly increasing the risk of cancers or infection.

Dr Wallin explains:“One of the best ways of treating end-stage kidney disease is to perform a kidney transplant. However, kidney transplants do not last forever, and one of the biggest problems we face is rejection. This is where the body’s immune system recognises the transplant as being different to itself, and attacks it as if it were a virus or bacterium. This can occur early after the transplant and is usually easily treatable, but we are recognising that when it occurs later on it can shorten the lifespan of the transplant.

Dr Elizabeth Wallin, Oxford

We’re l king for ways to make transplants last longer

Your support has enabled us to invest £55,000 in a three-year study, jointly funded by the Medical Research Council and led by Dr Liz Wallin at Oxford University under the supervision of Professor Kathryn Wood.

The study will centre around 60 kidney transplant patients from Central and South West England. By analysing blood and tissue samples in the lab and comparing them with clinical data such as new kidney function and possible episodes of infection and rejection, Dr Wallin hopes to better understand the processes that may cause transplant rejection. Her work could also lead to new ways to predict who may be at risk of transplant failure.



HOW YOUR MONEY’S HELPED // P05

The next step

“One of the ways the body rejects the kidney is to produce antibodies, proteins that stick to the transplant and flag it up to immune cells as something that needs to be attacked.

“Currently we use lots of strong medications to dampen down the immune system and prevent this attack; however these medications have side effects, including increasing the risk of infection and cancer.

“Maintaining the balance between keeping the organ alive and preventing severe infection or cancer is difficult. Most transplanted kidneys do very well early on, but by 10 years following a transplant, nearly half will have failed, and it is becoming increasingly clear that many of these will have failed because the immune system has begun to attack them despite the medication.

“When this happens, patients need to start another form of kidney replacement therapy such as dialysis, or they can have another transplant. However each time someone receives a transplant, it becomes harder to

We need your helpFunding shortages are forcing us to turn away four out of every five research ideas – projects that could lead to a potential cure or new treatment.

You could help us fund the next stage of a project like Dr Wallin’s, research that really changes lives. Please make a donation at www.kidneyresearchuk.org/donate

dampen down the immune system because more of these antibodies are produced.

“The best solution therefore is not to keep giving someone a transplant, but to make the one they have last for as long as possible. But we’re currently in a situation where we have no clear way of predicting who will go on to develop antibodies and we’ve got very limited options for treating these antibodies once they have developed.

“I’d like to find out what is different between a patient whose immune system starts to attack the transplant, and one whose immune system is controlled by the medication. So my research aims take a few steps back from the point where antibodies are produced to try to pinpoint an earlier part of the process where a change begins.

“I will be looking at the way patients’ white blood cells (or immune cells) interact with each other, particularly those that are important for producing antibodies. By looking at these cells in more detail, I hope we can discover new ways of preventing this interaction and find new ways of predicting, in advance, who is at risk of attack.”

Dr Wallin hopes the findings from her exploratory study will

trigger further lab-based studies which may

eventually lead to the roll out of a larger, multi-centred project.

She says: “Once we have identified the pathways that we are most interested in we will need to drill down in more detail to see if we can find ways of influencing those pathways – possibly in cells cultured in the laboratory or in animal studies.

“If we can find effective and specific ways to block the development of harmful antibodies and predict those at risk of attack we might then be able to introduce different, less toxic drugs at this earlier point that could prolong the life of the transplant without significantly increasing the risk of cancers or infection.”


THE BIG INTERVIEW // P06


We’re on the verge of a transplant revolution: major new study aims to make every kidney count

The first project to be funded through our making EVERY kidney count appeal will be led by Professor Mike Nicholson – pioneer of the radical new transplant technique called normothermic perfusion.The technique, previously featured in Update magazine, has the potential to make many more kidneys available for transplant and could change the way kidney transplants are carried out forever.

We provided innovation grants for Professor Nicholson’s first two normothermic perfusion studies at the University of Leicester and Leicester General Hospital. Now your support has enabled us to fund a third, larger five-year research project involving three major hospitals.

We caught up with him recently to find out more.

We hope that this new, larger trial will give us the definitive answers we need – in fact it could completely change the way kidney transplants are done and delivered.

Prof Mike Nicholson



THE BIG INTERVIEW // P07

QCongratulations on being awarded the very first research

grant from our making EVERY kidney count appeal. What does this decision mean to you and your research team?

We are absolutely delighted. We know that we were up against very tough competition so it’s a great honour to be given this £740,000 funding which I understand is the biggest grant that Kidney Research UK has ever given.

Q What first gave you the idea for the technique?

It actually has quite a long history, but nobody had managed to get the technique to work. In fact Charles Lindberg, the famous engineer and first man to fly across the Atlantic, had attempted to develop a similar procedure, hoping it would bring him immortality!

We looked at all those previous pieces of work and eventually decided that we could modify modern cardio pulmonary bypass technology, used to oxygenate blood during heart transplant surgery, to pump oxygenated blood through kidneys.

Q What did your first two studies focus on?

Our first project involved patients at Leicester General Hospital and focused on marginal, damaged kidneys – kidneys from deceased donors which might not have been considered suitable for transplant before. The most common are DCD kidneys (donation after circulatory death) where the kidney is damaged by a lack of blood supply at the point of death.

When you transplant a marginal kidney a lot of them (more than 50%) don’t work immediately. However when we transplanted 36 of those marginal, damaged kidneys after performing our technique only four didn’t start immediately but worked in the end. This suggested that normothermic perfusion improves the early function of kidneys so therefore these kidneys should last longer.

Between 10 to 15 % of kidneys retrieved from deceased donors every year are thrown away because people are concerned that they are too damaged to be used. So for our second study we took 92 unwanted kidneys, put them on our machine and perfused them with blood.

We found that 80% of them were actually usable and if you scale that up – for example, if we took every kidney that was discarded and applied our technique we could potentially do another 250 transplants a year in this country.

QWhat will you be doing in this latest project?

Over the next five years we will be running a randomised trial involving 400 transplant patients receiving marginal, damaged kidneys in Addenbrooke’s Hospital in Cambridge, Guy’s Hospital in London and The Freeman Hospital in Newcastle.

It will be a randomised trial so 200 patients will receive kidneys that have been stored in ice prior to transplantation and the other 200 will receive kidneys that have undergone our technique. We will then compare the results.

At the same time we’re going to be trialling the technique as a quality assessment device in all three hospitals by doing more work with discarded kidneys. If we can come up with a reliable system that can provide an evaluation of renal function and quality (e.g. good blood flow and urine output) we could make many more kidneys available for transplantation.

Q What are your hopes for this project?

If both parts of the project are successful we hope that Normothermic perfusion will be adopted by all transplant units nationwide.

Our previous findings suggest that the technique could not only reduce rejection rates but also increase the lifespan of transplanted kidneys, which currently only last around 10 to 15 years. It could also cut the transplant waiting list by 10% or more.

We hope that this new, larger trial will give us the definitive answers we need – in fact it could completely change the way kidney transplants are done and delivered.

Normothermic perfusion

Normothermic perfusion equipment

QNormothermic perfusion involves flushing donor

kidneys with warm, oxygenated blood for about an hour prior to transplantation. What does this do exactly?

It allows us to gradually reintroduce blood flow to donor kidneys outside the body and in a controlled way. This reverses much of the damage caused by the conventional method of storing them in ice, while offering us a unique opportunity to treat the organs with anti-inflammatory agents and other drugs before going on to complete the transplant procedure.

It also allows doctors to check the viability of the organ. At the moment, if there are any doubts about the kidney, it is discarded – this happens to 10 to 15 % of potential donor kidneys. By allowing doctors to test kidney function before transplantation, normothermic perfusion can make many more donor kidneys available.

In short, we’re able to repair and revive damaged kidneys in a way that would otherwise be impossible.

Our Making EVERY Kidney Count appeal is committed to raising £3 million to accelerate ground-breaking research in the area of transplantation.

You have helped us raise an amazing amount which is over £800,000 to date and our appeal will get nationwide TV exposure later this month when it is featured on BBC One’s influential Lifeline programme.

The 10-minute programme, which will enable us to highlight our ground-breaking research work and appeal for donations, will be broadcast on BBC One on Sunday 26th July.

Lifeline appeal



HEALTH & LIFESTYLE // P08

We are so glad it’s summer – finally the sun is shining, and hopefully the rain is behind us. Read on for some top health and

lifestyle tips to make the most of the sunny weather!

summer!Make the most of

Top tips for taking photosyou also don’t have to have studied photography either.

There are many great online tutorials and magazines to learn

and educate yourself.

2. Don’t be put off if it’s dull or if it’s raining outside! You can still capture some great moments with bad weather, like reflections in puddles. For landscapes, having dark skies and clouds can make your images more dramatic than just a blue sky.

3. The ‘Golden Hour’ is a particular time of day known as the best time to take photos because of the light – the hour after sunrise and the hour before sunset. You can download some apps that tell you when the ‘Golden Hour’ is.

4. It’s where you stand that makes great photos; think about composition and what’s in the background. You don’t have to have everything in the centre of the frame. If you are taking a shot of a child or your pet for example, don’t point the camera down at them, come down to their eye level to take the photo as it is more engaging if their eyes are looking directly into the lens.

5. The best tip; keep taking photos! Take your camera wherever you go and keep practising. You’ll start to notice a difference in the quality of your shots.

For more information about Andrew, and to see his work, visit: www.andrewjsmith13.com

Andrew Smith is a photographer who has had three kidney transplants. Andrew is selling some of his prints to raise money for the charity, and we’re excited to announce that he’ll be selling an official London Bridges Walk print too!

Andrew gave us his top tips for taking photographs this summer:

1. Any camera is great for taking photos; from small compacts to smartphones. It’s the person taking the shot that captures the moment, so you don’t necessarily need an expensive bit of kit to get the best shot and

Explore the many parks, footpaths and walking routes around the UK this summer. Get friends or family to accompany you, or join a walking club. Even gardening can provide a gentle workout, and is a rewarding way to get outdoors in the good weather.

Dr Alice Smith says:

Photo: © 2015 Jam

es Gardner



HEALTH & LIFESTYLE // P09

summer!Whatever you’re doing this summer, it’s important to stay safe in the sun. This is especially important if you’re on anti-rejection drugs after a kidney transplant. We spoke to Boots, who told us about some of the best sun creams on offer. Remember to use the highest factor possible.

No7 Protect & Perfect Intense ADVANCED Anti-Ageing Sun Protection SprayThis lightweight sun protection spray is designed for easy absorption leaving skin feeling smoother and intensely moisturised. Providing triple protection from the damaging effects of the sun, this water resistant formula is hypo-allergenic and contains No7 serum technology providing firmer, smoother more radiant skin with daily use.

£14.95, available exclusively from Boots and boots.com

Piz Buin Instant Glow Skin Illuminating SprayNEW Piz Buin® Instant Glow™ Skin Illuminating Sun Spray is infused with light reflecting pearls to instantly illuminate skin with a subtle shimmer that enhances your natural skin tone and give it an instant glow so you can be beach-confident – with 0% self tan.

The new easy to use range can also be sprayed at any angle, making sure you have all over protection wherever you are, without fuss or mess.

£16.99, available from Boots

Boots Soltan Protect & Moisturise Suncare Lotion Boots Soltan Protect & Moisturise range provides long-lasting moisturisation whilst still ensuring UVA and UVB protection is at its highest. This light and easily absorbed lotion has been specially formulated to provide long-lasting moisturisation for smooth and soft skin, helping to reduce dryness and prevent peeling. As with all Soltan products, the Protect & Moisturise range has been awarded a maximum five-star rating against deep-down skin damage caused by UVA rays.

£10.50, available from Boots

Sumptuous scallops for summerThe lovely Brian Turner has dished up a delightful summer salad for us, and Harriet Williams, Clinical Dietitian Renal Lead and Chair of the Renal Nutrition Group, tells us how to make it more kidney patient friendly.

Scallop and bean salad with a raisin dressing, serves 4

STAYING SAFE IN THE SUN

Directions

c Soak 25g raisins in the brandy. c Purée in a machine and put into a bowl.c Add the olive oil and whisk in.c Add the lime juice and parsley, and season.c Cut the radishes into batons 3mm square.c Cut the cucumber into 2.5cm lengths then

into 3mm batons around the seeds and mix with the radishes.

c Cut the beans into 2.5cm lengths and mix with the dill, yoghurt and 50g raisins, then with the radish and cucumber, and season.

c Sear the scallops in hot oil and then season.c Lay four little gem leaves on each plate and place the bean mix into the

centre of the leaves. Lay the scallops on top.c Decorate with the dressing and serve.

Comments from Harriet:

For patients on dialysis or a low potassium diet, the best way to cook the green beans is to boil them for 3-4minutes in a large amount of water, to wash out some of the potassium.

Raisins are high in potassium so if you are on a low potassium diet use less of these in this recipe. The small amount in the puree would be ok. Substitute half of the raisins in the bean mix for a small amount of grated carrot to reduce the potassium content.

Make sure the scallops are cooked properly and served piping hot. This is especially important after a transplant where you may be more susceptible to food borne illnesses.

Alcohol in moderation is fine for most people with CKD. However, it should not be taken with some medications – it’s always best to check with your doctor whether alcohol is ok for you.

Shopping list

c 75g raisinsc 1tbsp brandyc 6tbsp olive oilc 1tbsp lime juicec 1tbsp chopped parsleyc Salt & pepperc 6 radishes

c 7.5cm cucumberc 110g green beans, cookedc 1tbsp dillc 1tbsp yoghurtc 12 scallopsc Olive oil, to cookc 12 little gem leaves


Kidney Research UK is leading a pioneering UK-wide project which aims to identify people with progressive chronic kidney disease (CKD) earlier and so improve access to treatment and patient outcomes.

FOCUS ON... // P10

As highlighted in the last issue of Update, we have been awarded a £400,000 grant from the Health Foundation to run the programme called ASSIST-CKD.

ASSIST-CKD will look for early signs of progressive kidney damage in patients by combining data from routine blood tests carried out by GPs and hospitals, using dedicated software to create graphs of kidney function over time.

The two-year project which starts this summer, will involve around 10 renal units, pathology laboratories and their surrounding GP practices around the UK, potentially covering a population of between five and eight million people.

It aims to provide better and safer patient care by identifying people with CKD who are most at risk so they can be referred to secondary care at the right time, for the right treatment in the right care setting.

CKD is the gradual loss of kidney function over a period of months or years. Nearly two million people in the UK have been diagnosed with moderate-severe CKD by their GP but it is estimated that a further one million people remain undiagnosed as people with CKD often have little or no symptoms in the early stages.

Even when symptoms do appear, they are not specific, with patients feeling generally tired and unwell. Patients with CKD also have an increased risk of cardiovascular disease and acute kidney injury (AKI).

Kidney function is measured by a simple blood test (estimated Glomerular Filtration Rate – eGFR). In some people the eGFR can decline significantly over time; this is called progressive CKD.

As part of the programme, graphs of kidney function over time will be assessed by a laboratory scientist or renal nurse to review the trends in patients’ tests results. For patients with clearly deteriorating kidney function, a report, including the graph, will be sent to the GP with a prompt that specialist advice may be required. This should improve identification of people with declining kidney function, and allow earlier intervention and treatment, in some cases delaying or perhaps even avoiding the need for dialysis or a kidney transplant.

Those patients with more stable CKD can be discharged from the outpatient kidney clinic back into primary care, with the knowledge that their kidney function will continue to be monitored via the eGFR graph system.


Resources have also been provided to help improve patients’ understanding of CKD, encouraging them to become involved in their care. They may include practical advice on self-management techniques and lifestyle changes that can help to slow down the progression of their kidney disease.

This project is based on a successful system which has been running at the Heart of England Foundation Trust (HEFT) in Birmingham for the past 10 years.

Since 2005, the number of patients starting dialysis per year at HEFT has fallen by 16% compared to an increase of 8% in England as a whole. The unit now has the lowest late presentation rate for dialysis in the UK. This is significant because delayed referral to specialist care in patients with declining kidney function means there is less time to prepare for dialysis or a kidney transplant.

Feedback from local practices in the West Midlands has been positive with 74% of local GPs finding the eGFR graph reports to be useful, and 41% having changed the management of their patients as a result.

We’re spearheading a nationwide community project for progressive chronic kidney disease (CKD)

100908070605040302010

001/01/2008 01/01/2009 01/01/2010 01/01/2011 01/01/2012

Sample graph from HEFT showing progressive CKD over four yearsDate/Time of Test: 11/Apr/2013 04:13Estimated GFR: 35(ml/min)

Est GFR(ml/min)GFR if Afro Caribbean

Kidney function (eGFR m

l/min)


FOCUS ON... // P11

Arthur is a 70 year old patient from Birmingham. During investigations for various health issues, it was discovered he only had one kidney and only had 30% kidney function. His GP referred him to a specialist and by the time of the appointment, it had dropped to just 23%.

However with a change of diet and lifestyle, Arthur’s kidney problems now don’t affect his general health and he has been discharged from the kidney specialist. He has regular blood tests so his GP can keep an eye on his kidney function although he may need dialysis treatment in the next 10 years.

Arthur says:

Dr Hugh Gallagher, Project Lead for ASSIST-CKD, says:“There is a UK-wide focus on improving the management of CKD and this project has enormous potential to provide better and safer care in a cost-effective manner. Patients will be able to access treatment in a more timely fashion, and they will also be given more information to help understand their condition.

ASSIST-CKD is a collaboration between patients, kidney doctors and nurses, laboratory scientists and the primary care team which should benefit both patients and clinicians.

We hope to demonstrate that the programme can be effective in other areas outside of the West Midlands, which should create a powerful case for universal adoption of the service across the UK.”


CASE STUDY

I was very fortunate that my kidney problem was spotted early on. I don’t have to be monitored in hospital anymore as my GP can see how my kidney is working with the regular blood tests. I think GPs should have more information about kidney disease and how much we can do to help ourselves and I am sure that this project will help make that happen.

ASSIST-CKD is a collaboration between patients, kidney doctors and nurses, laboratory scientists and the primary care team which should benefit both patients and clinicians.

Dr Hugh Gallagher


Your vital support enables us to fund ground-breaking research by the finest research minds. These exciting new studies will greatly advance our understanding of kidney disease and help to improve the lives of people living with the disease.

RESEARCH ROUND UP // P12


Unlocking the secrets to a killer conditionA recently discovered class of molecules called microRNAs could help to predict the progression of acute kidney injury (AKI) – a condition that causes around 40,000 deaths every year in the UK.

AKI causes the kidneys to suddenly stop working properly. It affects one in six people who are admitted to hospital and often occurs as a result of something which gives the kidneys a ‘shock’ – for example, an operation, an infection or severe illness.

The severity of the condition can range from minor loss of kidney function to complete kidney failure, and it can become a life-threatening problem within hours.

Early recognition and prompt treatment are crucial, but existing urine and blood tests can be time consuming and may not show a problem immediately.

We have awarded a £200,000 Research Grant to Dr Tim Bowen and his team at Cardiff University to investigate whether microRNAs could help predict the progression of AKI.

Early data suggest that microRNA levels change in AKI, so the team will collect urine samples from patients with AKI to see if detection of microRNA differences can indicate whether the patient is likely to recover, or whether their condition will deteriorate.

Dr Bowen hopes that this study will eventually lead to the development of new AKI screening methods, enabling doctors to identify patients at increased risk of kidney failure quickly and thereby treat them sooner.

Research round up – innovative projects funded by you

See how your money can help

£10 per month would pay for one hour’s work by a student researching better ways to treat kidney disease.

£15 per month could help pay for one hour of research by a senior researcher investigating new treatments for kidney disease.

£50 per month would help to pay for culture dishes, pipets and other lab equipment that our researchers need to use and replace frequently.

Please help us fund even more ground-breaking projects – projects that could lead to a potential cure or new treatment for kidney disease.


Make an online donation at www.kidneyresearchuk.org/donate


New study could help to prevent kidney stonesA gene called FAM20A will be at the centre of a three-year study which aims to better understand why kidney stones develop.

Kidney stones can be extremely painful and can seriously damage kidney function. Approximately 10% of the population will be affected by it at some point in their lives.

The majority of stones contain calcium. In most patients it is not well understood why and how the calcium deposits develop in the kidney and treatment focuses on removal of the stones, rather than prevention.

A research team led by Dr Detlef Bockenhauer and Professor Robert Kleta from the UCL Institute of Child Health and Great Ormond Street Hospital for Children, recently identified FAM20A as the gene responsible for causing a rare inherited disorder called Amelogenesis lmperfecta (abnormal teeth) and Nephrocalcinosis (calcium deposition in the kidneys).

We have now given them a £120,085 research grant to investigate exactly how mutations in this gene can lead to calcium deposition. Part of their investigations will focus on the role FAM20A plays in turning soluble calcium into a solid.

They hope that their research will eventually lead to the development of new treatments to help prevent the formation of kidney stones.

RESEARCH ROUND UP // P13


Investigating ways to prevent kidney scarring

We are funding a three year study that could help to prevent kidney scarring caused by proteinuria – a condition characterised by abnormal amounts of protein in urine which can lead to chronic kidney failure.

Dr Qihe Xu and his team from King’s College London will use the £200,000 research grant to focus on a specific part of the kidney known as the collecting ducts. These specialised tubules span the whole kidney and act as a drainage system.

Previous research involving mouse cells revealed that vitamin A played a major role in activating three anti-scarring molecules in collecting duct cells. However when proteinuria was present it appeared to block vitamin A activity, so exposing the kidneys to potential damage from scarring.

This latest study will investigate whether proteinuria has the same effect on vitamin A in human collecting duct cells. The team will compare cells from patients with high levels of proteinuria with cells from patients without the condition. They will also try to discover exactly how vitamin A may activate the three anti-scarring molecules and how proteinuria may block this process.

The team hopes that their research findings will

eventually lead to the development of new

treatments to prevent kidney scarring caused by proteinuria.


FOCUS ON... // P14

Shaping the future of kidney research - the vital role of our Lay Advisory Committee


A dedicated group of volunteers, each with their own personal perspective of kidney disease, are helping to shape the future of kidney research.

Chief Executive Sandra Currie and her passion and enthusiasm really inspired me.

“The committee meets twice a year in Peterborough, we correspond by email and attend occasional events such as Research Fellows Days where clinical or lab-based researchers, funded by the charity, meet to present their work. This suits me because, although I do have quite a bit of free time, I can’t be away from Kevin for long periods.

“The Research Fellows Days absolutely blow my mind and my brain is still buzzing days later! It’s the most jaw-dropping, staggering experience and it’s truly inspiring. The more I learn the more hungry I get for knowledge.

“However the more I learn the more I am aware of the growing threat to the nation’s renal health, and the urgent need to alert people to the importance of looking after their kidneys.

“Kevin owes his life to medical research and the lay committee gives me an opportunity to give something back by acquiring a lot of knowledge and sharing it with the wider community. This is very important to me.

“It has also given me the opportunity to meet a whole mix of people from all different backgrounds – carers, donors, people on dialysis and people who have had kidney transplants.

They sit on our Lay Advisory Committee and share one common goal – to ensure that patient and carer input is a key factor in the development of our future research work, resources and ideas.

Committee members come from a variety of backgrounds and live in varied settings across the UK.

Helen Corbett joined the committee in 2012. She lives in rural Wales and is principal carer for her husband Kevin. She is also a kidney donor to Kevin.

“Kidney disease has been a major part of my life for some time now,” says Helen.

“I left work to care for Kevin and accompany him to all his appointments as he’s also had several strokes. I helped set up and now chair our local Kidney Patients’ Association and I was also heavily involved in a project board to open a much-needed satellite dialysis unit in Welshpool.

“When that project work ended Kevin’s nephrologist suggested I meet a like-minded lady called Jan Cooper. Jan is a Kidney Research UK trustee and Jan suggested that I apply to sit on the Lay Advisory Committee. I sent in my application, was accepted and attended my first lay meeting in Peterborough. Shortly afterwards I met Kidney Research UK

“I think it’s imperative that there is a patient and carer voice in the future of kidney research because we bring an insight that, clinicians and researchers, superb as they are, don’t have. I believe that by working together we can achieve so much more.”

Add your voice to the committeeWhy not join Helen as a member of our Lay Advisory Committee and share your views, skills and experiences?

There’s a three year commitment to this role with the option of an additional three years. Volunteer expenses, including travel and accommodation are paid.

We are particularly keen to hear from interested supporters from Wales, Northern Ireland and Scotland.

If you want to know more or wish to apply for this fantastic opportunity please contact Christian Cornforth, Volunteer Programme Manager at Kidney Research UK on (01733) 367872 or email [email protected]

I think it’s imperative that there is a patient and carer voice in the future of kidney research because we bring an insight that, clinicians and researchers, superb as they are, don’t have. I believe that by working together we can achieve so much more.

Helen and Kevin Corbett


YOUR MESSAGES // P15

We’re always keen to hear from our supporters and it’s never been easier to get in touch. You can follow us on Twitter, where we’re @Kidney_Research, and we’re also on Facebook. If you’d like to send us a letter, the address is: Update Magazine, Kidney Research UK, Nene Hall, Lynch Wood Park, Peterborough PE2 6FZ or e-mail: [email protected].

Stay in touch

“I would just like to thank Kidney Research UK for all the work they’ve done. My brother and I are exactly 18 months and 4 days apart. Between us, technology had improved so much that they were able to detect Adam’s kidney condition before he was born and as a result he thankfully never had such a serious infection that he died. He’s my best friend and if it wasn’t for kidney research the probability of Adam being here is something I don’t want to think about. He’s 18 today. Thank you so much!”


I received a lovely letter from Kidney Research UK along with a packet of Forget-me-not seeds ‘in memory of your loved one’ for the on-line and off-line donations received for Nigel Whitefield’s funeral.

I am looking forward to planting the seeds in our garden later this month in Nigel’s memory.

The donations were £2,474.00. Thank you so much for all the donations.

Sandra, Charles and Army

STAR

LETTER!

@Kidney_Research special party 2day 4 my daughter ella 1yr on shes also been chosen 2 star manchester marathon sat.

Karen Hughes@kmhughes28

All ready 4 @MarafunUK 10k 4 @Kidney_Research in memory of Nigel Whitefield 1st 2015 race https://www.justgiving.com/sandra-whitefield1/ …

Sandra Whitefield @Whitefield_S

Star JustGiving

Star Tweets

Congratulations Tams

A big well done to Tams Mukhopadhyay, our Cardiff Shop Manager who won the Self-Development Award at the Welsh Asian Women Achievement Awards (WAWAA) 2015. The WAWAA aims to empower Asian women in Wales, to promote their representation in all aspects of Welsh life and identifies role models for Asian communities.


The Mount Toubkal Trek route, is widely regarded as one of the most beautiful mountain landscapes in the world.

Trek through the Atlas Mountains in Morocco to the top of the Mount Toubkal (4,176m) where you will witness the rugged landscape and stunning views of the High Atlas Mountains from the summit; all in one weekend.

Mount Toubkal

30 September – 04 October 2015

“One of the most beautiful mountain

landscapes in the world!”

www.kidneyresearchuk.org/trek

Registered Charity No. 252892, Scottish Charity No. SC039245

Registration fee: £199 Min sponsorship: £15000845 070 7601 [email protected]

Mount Toubkal A4 advert.indd 1 13/05/2015 10:01KR8717 - Update Summer 2015 v3.indd 16 09/06/2015 12:20:21

Documents

Update Magazine July 2015