Update: Autumn Nov 2017 Issue 14 by Kidney Research UK

Autumn 2017 Issue 14

THE MAGAZINE FROM KIDNEY RESEARCH UK

MEET THE IRONMAN OF FUNDRAISING PAGE 14

Creating one of the UKâ&#x20AC;&#x2122;s first kidney biobanks

Investing in the best science and people

Eat well this Christmas

Welcome! Thank you for taking the time to get up to speed with all that is going on with Kidney Research UK. It’s good to take a break and put the feet up to read Update. We have a fabulous issue for you. I am personally very excited about the new kidney biobank we are setting up, the first of its kind at this scale (see pages 4-5). The researchers involved are incredibly driven. It’s astonishing to think of the potential power of a million tiny samples and the intelligence that could result. Another amazing researcher is Professor Jeremy Hughes. He shoulders his hefty responsibilities as chair of our research grants committee (which ultimately selects which grant applications are successful) with excellent humour. He also has a brilliant job title – Professor of Experimental Nephrology – read the feature on pages 6-7 to find out more! These are interesting times for people in need of a kidney transplant. With Scotland, and now more recently, England likely to follow Wales in introducing systems of presumed consent (see page 3), the chances are that the number of available organs will eventually increase. It’s great news, but it’s by no means the end of the story. Among the many issues to tackle are the need to ensure transplanted kidneys last longer and to help more people become eligible for transplant. Our research will help with this. You’ll be hearing more about this in these pages soon. Thanks again for reading and for your support. It may only be November, but I’d still like to wish you all the best for the new year.

Rosie

Rosie Loft, Editor pressoffice@kidneyresearchuk.org

Contributors Maria Thompson Allison Parkinson Fiona Willingham

Tel: 0300 303 1100 www.kidneyresearchuk.org

Find out more: www.kidneyresearchuk.org

weet maker S raises thousands Peterborough-based confectionery company, Barnack Sweets, are celebrating having raised more than £200,000 for Kidney Research UK in the past five years. Through the company’s franchise scheme Barnack Sweets make an annual donation to their chosen charity. Head of Charity Relationships for Barnack Sweets, Kat Feek, said: “As Kidney Research UK is based in Peterborough, we decided they would be an excellent charity to team up with. We are pleased to have been able to donate so much towards important research projects and hope to donate even more in the future.” Kidney Research UK would like to say a massive thank you to Barnack for all their hard work and to all the sweet-toothed supporters for buying the sweets.

Beanie and the staff at Barnack Sweets

Kidney Research UK former fellow awarded PhD Dr Shalabh Srivastava, who has just completed a three-year training fellowship with Kidney Research UK enabling him to gain his PhD, has been appointed as South Tyneside General Hospital’s first ever dedicated Consultant Nephrologist. The hospital is within City Hospitals Sunderland NHS Foundation Trust, one of only three major centres in the North East specialising in renal medicine. Dr Srivastava has already started a new clinic for adult kidney patients at South Tyneside District Hospital, meaning kidney Dr Shalabh Srivastava patients in the area do not have to travel so far for their appointments. He also runs clinics and carries out renal procedures at Sunderland Royal Hospital and is teaching South Tyneside NHS Foundation Trust’s junior doctors. Ken Bremner, Chief Executive of the South Tyneside and Sunderland Healthcare Group, told the Shields Gazette: “We are delighted to welcome Dr Srivastava to our organisation, which means we are now able to offer the services of a kidney specialist in South Tyneside for the first time. This is an excellent demonstration of what can be achieved with South Tyneside and Sunderland hospitals now working together in partnership.”

NEWSROUND // P03

A visit from the Prime Minister

Doughnut dash

Days after the Prime Minister announced a presumed consent organ donation system could be introduced in England, she visited the Royal Liverpool Hospital to meet transplant patients. Among them were kidney recipient, Holly Shaw, who had her second transplant one year ago, and her mum Helen Shaw, who donated to her. Holly (30), from Warrington, told Kidney Research UK: “I met Theresa May and Health Secretary, Jeremy Hunt. They were very interested in hearing how transplants had changed our lives. “If the opt-out system means there are more organs available that’s got to be a good thing and right now the fact people are talking about it is great – it’s not an easy subject. Even with a change in the law, relatives can still override the decision, so it’s important people talk to their families and make sure they know what their wishes are.” Holly, who described to the Prime Minister how she had waited for three and a half years for her first transplant in 2008, also underlined the importance of the right infrastructure being in place so that transplants are able to go ahead. She added: “The correct resources need to be in place and staff need to be trained to be sure every transplant operation has the best chance of being a success.” Speaking after the meeting Mrs May told reporters it had been great to be at the Royal Liverpool Hospital and meet people who have benefited from kidney transplants. And she added: “What they have told me about is how [their transplants] have actually transformed their lives and therefore how important it is for people to be willing to donate organs and that is what the opt-out scheme is about. “What this will do, I hope, is mean that more organs will be available for donation, more people will be given the gift of life and see their lives transformed.”

Katie Taylor and her husband Rhys at the Doughnut Dash

A supporter has raised almost £30,000 for Kidney Research UK over the last five years with a novel take on the charity fun-run. Katie Taylor, from Colchester, held her first Doughnut Dash five years ago when her husband, Rhys, was diagnosed with IgA nephropathy. Mrs Taylor said: “I knew very little about kidney disease and was really shocked about the lack of treatments and that ultimately there was no cure available. It then became apparent that actually very few people knew anything about kidney disease and how totally devastating it can be. I decided I wanted to do something fun and a bit different to raise awareness and funds for Kidney Research UK and so the Doughnut Dash was born.” Competitors ran 5k, stopping to consume a whole ring doughnut at every kilometre and each doughnut had to be eaten before continuing. Mrs Taylor held her last Doughnut Dash at the beginning of September raising around £5,000. To her surprise, this amount was then boosted by a £3,000 donation from the company she works for, given to her in recognition of her efforts over the years.

Holly and Helen Shaw meet the Prime Minister, Theresa May

She added: “While it will be a bit sad not doing the Doughnut Dash anymore, I feel really proud of what I’ve achieved and how I’ve done my little bit to help. So far, the Dash has raised nearly £20,000 for the charity; I’m hoping that this year’s will take us closer to the £25,000 mark and it can end on a real high.”

Call our donation line: 0300 303 1100

HOW YOUR MONEY’S HELPED // P04

NURTuRE:

Working together to create a unique new kidney biobank Kidney Research has launched the first kidney biobank which will hold over one million tissue samples to be used for research on a scale not seen before in the UK.

Covering England, Scotland and Wales the biobank project called NURTuRE (the National Unified Renal Translational Research Enterprise), will collect and store biological samples from 3,000 patients with chronic kidney disease (CKD) and at least 800 patients with nephrotic syndrome (NS).

And, uniquely, anyone accessing the samples will be required to share their research findings after publication. Not only will this help to speed up research into chronic kidney disease and nephrotic syndrome, it should also help to generate advances in other areas of kidney disease.

In addition to the samples of plasma, serum, urine, DNA and tissue that will be stored, the biobank will also hold linked clinical data, provided through the UK Renal Registry.

The need for a kidney biobank was highlighted in the 2016 UK Renal Research Strategy – a national blueprint of renal research themes and priorities. In response to this, Kidney Research UK brought together world-leading UK and European kidney experts, patient groups, pharmaceutical industry partners and the UK Renal Registry to create the groundbreaking biobank.

Running over a five-year period, the samples will be obtained through 14 NHS Trusts, with patients followed up at specific intervals. From mid-2018, all researchers will be able to apply for access to samples and data stored in the biobank for future studies.

The anonymised data contained within the NURTuRE biobank has the potential to unlock answers to some of the biggest questions about CKD and NS. Find out more: www.kidneyresearchuk.org

The project is being jointly delivered by experts from the University of Bristol and the University of Nottingham. In addition, genetic (biomarker) analysis of samples will take place at the University of Geneva and histopathological (tissue) analysis at the University of Birmingham. Patient groups (in particular, the Nephrotic Syndrome Trust and Kidney Research UK’s Lay Advisory Committee) have been involved at all stages in the development of NURTuRE. Patients have also had direct input into the study documentation, including the patient information sheets and consent forms.

“The anonymised data contained within the NURTuRE biobank has the potential to unlock answers to some of the biggest questions about CKD and NS,” says Elaine Davies, Director of Research Operations at Kidney Research UK. “The cross-analysis of biological samples alongside clinical data is immensely powerful and unique to the UK. It will enable us to develop new biomarkers to help identify patients who will benefit from better, earlier diagnosis, and develop person-specific new treatments, leading to better health outcomes.”

The next step

NURTuRE-CKD

The NURTuRE-CKD study is being led by Professor Maarten Taal, Professor of Medicine at the University of Nottingham, and supported by study co-ordinator, Fiona Robertson. It will involve 3,000 adult CKD patients, plus 100 volunteers without CKD (including 50 with type 2 diabetes). The overall aim of the study is to develop better methods to predict the risk of end-stage kidney disease, and the likelihood of other adverse outcomes associated with CKD.

HOW YOUR MONEY’S HELPED // P05

Kidney fact file

Skevy’s story ity

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te ly of renal conditions. It is qui ns of kidney disease at an ear sig eal rev e els ing eth som te tes ts to investiga website: ormation on CKD, visit our inf re mo r Fo ge. sta ate der or mo idney-disease health-information/chronic-k www.kidneyresearchuk.org/ n that causes the kidneys to me (NS) is a condneitio Nephrotic syndofropro . This can lead to a range of uri the o int n tei nts of catching leak large amou tissues and a greater chance dy bo of ng elli sw ing lud inc problems, ally first infections. ect people of any age, it's usu aff can e om dr syn tic hro It affects more Although nep en two and five years old. we bet d age en ldr chi in d diagnose boys than girls. with steroid e can usually be controlledal (inherited) om dr syn tic hro nep of ms ngenit The sympto number of children have co medication. However, a smallmay eventually have kidney failure and need a nephrotic syndrome. They kidney transplant. NHS choices hrotic syndrome, visit the /I nep ut abo n tio ma or inf re ges ntroduction.aspx For mo s/nephrotic-syndrome/Paust ion dit on k/c is-ns u hs. w.n ww te: bsi we te: www.nstr .co.uk/whatbsi we ust Tr me ro nd Sy c and the Nephroti

Derbyshire mum, Skevy Piponides, hopes her involvement in the NURTuRE study could eventually shed a light on the causes of kidney disease. “My case continues to baffle doctors,” said the professional cake baker, who was diagnosed with the condition seven years ago. “I had no prior symptoms or problems but, after a bout of mild dizzy spells, tests revealed that I had the kidney of an average 80-yearold, in terms of condition and function. “No one can explain how this has happened, but the biobank may help to finally get to the bottom of this mystery and shed further light on the causes of other kidney conditions.” Skevy’s renal unit at the Royal Derby Hospital invited her to take part. “I was more than happy to help and the whole process has been so simple,” she added.

“I’m excited to be part of NURTuRE, which will hopefully bring about real change for patients with CKD and NS, leaving a legacy for them and researchers for many years to come.” says Fiona.

NURTuRE-NS The NURTuRE-NS study is being led by Professor Moin Saleem, Professor of Paediatric Renal Medicine at the University of Bristol, and supported by study co-ordinator Liz Colby. It will involve at least 800 adults and children with nephrotic syndrome and hopes to shed more light on its causes by focusing on genes associated with the condition and identifying risk factors for NS progression and recurrence. “It’s great to work on NURTuRE, creating a powerful resource which has enormous potential to improve treatments for kidney patients,” says Liz.

Help us change more lives Help us fund and manage more revolutionary projects like the NURTuRE biobank – each one with the potential to transform patients’ lives.

“They just took blood and urine samples, did some height and weight measurements, tested my memory skills and asked me a few other questions. It was all done during a routine appointment in August and they’ll simply repeat the process in a year’s time. “I’ve never been part of a research study before but, if my involvement can help other people like me, then that would be fantastic.”

Make a donation today at www.kidneyresearchuk.org/donate or call: 0300 303 1100 THANK YOU

NURTuRE is being funded by AbbVie Inc, Evotec, UCB and Kidney Research UK.

What does this mean for me? Researchers will have the first opportunity to compare samples and data on a huge scale, potentially enabling earlier diagnosis and personalised treatments in years to come.

How can I get involved? If you are a patient with either late-stage CKD or NS at one of the participating renal units, you may be offered the opportunity to take part in the NURTuRE biobank study. Visit www.nurturebiobank.org and talk to your consultant to find out more. Skevy and her daughters, Florentia and Andrea

Call our donation line: 0300 303 1100

THE BIG INTERVIEW // P06

Professor Jeremy Hughes: Investing in the best science and people Find out more: www.kidneyresearchuk.org

THE BIG INTERVIEW // P07

Professor Jeremy Hughes is a Professor of Experimental Nephrology at the University of Edinburgh and an Honorary Consultant Nephrologist at the Edinburgh Royal Infirmary. He combines his clinical and teaching roles with his research work, which focuses on the role of a white blood cell, called the macrophage, in kidney injury, scarring and healing. Professor Hughes is also chair of Kidney Research UK’s Research Grant Committee. He was elected to the post in 2013, his tenure ends in early 2018. He will then join the charity’s board of trustees. We caught up with him recently to find out about the work of the committee and ask him about some of the highlights of his time as chair.

Kidney Research UK has funded many excellent projects that span the full range of bench to bedside research.

What does the role of chair involve on the Kidney Research UK Research Grant Committee?

I work with the charity to oversee the assessment process of submitted research grants. These include research project and programme grants, innovation grants and personal clinical and scientific fellowships. I nominate members of the committee with relevant expertise to manage the peer review process for every grant. Grants are then shortlisted for discussion at a committee meeting, based upon the comments and opinions of external expert referees who have reviewed them in detail. I chair the meeting and my aim is to ensure that all grants are discussed fairly and in depth so the committee as a whole has a real understanding of the proposed research before decisions are made. There is significant work involved in reading and digesting the details of all submitted grants and the referee reports, but I have always enjoyed this. I’m pleased to say the chair workload has significantly increased recently as Kidney Research UK has been very successful in increasing the funding available for research. When I became chair we had a main Research Project Grant round and a Fellowships round, leading to two meetings per year. In recent years we have had additional rounds of research funding, including the Make EVERY Kidney Count Awards for transplant-related research and the John Feehally – Stoneygate Awards which are targeted to different areas of research with each round. In addition, the recent merger with Kids Kidney Research will provide additional funding opportunities for paediatric research. The committee also reviews and gives feedback on rules and procedures (protocols) relating to industry-funded projects overseen and governed by Kidney Research UK. Examples include the PIVOTAL study, a large clinical trial examining the optimal dose of iron therapy in dialysis patients, and the NURTuRE national biobank project (see page 4). Lastly, as chair I am also a member of the charity’s Renal Strategy Committee which discusses the activity and direction of the organisation.

Are there any projects (past or ongoing) that stand out for you?

Kidney Research UK has funded many excellent projects that span the full range of bench to bedside research. Recent advances in genetics have led to many interesting projects trying to identify the nature and effects of gene mutations involved in diverse kidney diseases. The greater funding made available through the Making EVERY Kidney Count appeal has allowed researchers to be more ambitious and led to several projects with the potential to really change the clinical landscape. These include examining the role of a pioneering

warm perfusion technique to make more kidneys suitable for transplantation; developing a drug which may be a novel treatment for rejection; running a multi-centre UK trial to see if we can improve the early function of kidney transplants and holding a randomised trial to determine the best treatment for patients who have antibody-mediated rejection, (a severe complication of renal transplantation).

What sparked your passion for renal medicine and research?

I first encountered renal medicine as a junior doctor at the Hammersmith Hospital and decided to specialise in this area. I worked with Professor Andy Rees and Professor Charles Pusey during my renal registrar job and they inspired me to undertake a period of research leading to a PhD. My PhD supervisor was John Savill (now Professor Sir John Savill) and he was a great supervisor and mentor for my future career. He passed on a love for the white blood cells called macrophages, which are so important in inflammation, scarring and healing of many organs including the kidney. I remain fascinated by their complexity and elegance and much of my current research studies macrophages in kidney disease, as well as in liver and brain injury.

Are you excited by the volume and quality of new research projects coming forward?

Yes I am, but we’re not able to fund all of the research proposals deemed to be scientifically worthy of support – and this is frustrating. However, I know that the charity is working very hard to try and increase the funding available for research. I believe it is important to invest in and support the best basic science and clinical researchers because, if we allow them to establish and develop their work, then they will attract additional funding from other areas to research kidney disease.

And what could this mean for kidney patients?

Although the pace of change is often frustratingly slow, I do believe new therapies or existing drugs that are repurposed for a kidney disease will enter clinical trials in the next 5-10 years. Therefore, it is vitally important the renal research community works in collaboration with the pharmaceutical industry to drive this area forward.

Have you enjoyed your time as committee chair?

Immensely. In particular, it is so rewarding when the charity invests in researchers with important questions, clear research plans and the determination to drive their research forward. They are the future.

Call our donation line: 0300 303 1100

HEALTH & LIFESTYLE // P08

Christmas cheer Christmas is on its way and with it comes the usual indulgence in festive food and drink. People with kidney disease often need to follow certain dietary and fluid restrictions and it is important to take these into account over Christmas. With the help of the fantastic Fiona Williamson, a Kidney Research UK Fellow and clinical lead renal dietician at the Royal Derby Hospital, we have put together a list of food, drink and exercise tips to help you enjoy the festivities safely. Helping kidney patients to enjoy food Can I have Christmas pudding, Christmas cake or mince pies?

Can I have chocolate?

Yes. Try and keep it to just a couple of Yes. If you tend to have a high potassium level, chocolates from a box in one day. try to have one or the other in a day, so either Can I drink alcohol? a small portion of Christmas pudding, a small Yes, alcohol in moderation is ok. If you are piece of Christmas cake, or one or two small taking medication and are unsure whether mince pies. Try not to have more than 2-3 you can drink alcohol, always check with your portions of these over the Christmas period. doctor or pharmacist. Follow the guidelines Can I have Brussel sprouts? for sensible drinking, which is to try to limit your alcohol intake to no more than 14 units Yes. Boil them in plenty per week. This is equivalent to: six pints of of water and try not beer; five medium glasses of wine or 14 single to have more measures of spirit. than five. It is also sensible to avoid binge drinking and try to have at least one alcohol-free day in the week. If you have to follow a low potassium diet or a fluid restriction, take this into account when drinking alcohol and any other drinks.

Find out more: www.kidneyresearchuk.org

Go easy on...

Better choices...

Avoid pints of beer, bitter, lager or shandy and avoid real ales, stouts and cider

Half a pint of beer, bitter or lager or shandy

Avoid port as it is high in potassium

A small dry or medium sherry, or Vermouth

Red wine, sweet white wine

Dry white wine, sparkling wine

Coffee liqueurs

Cream liqueur (e.g. Baileyâ&#x20AC;&#x2122;s), Amaretto, Limoncello

Avoid pure fruit and vegetable juices. Cola is high in phosphate, so keep it to a small amount (e.g. a small airline can, 150mls)

Lemonade, dry ginger, tonic water, bitter lemon, fizzy drinks, flavoured sparkling water

HEALTH & LIFESTYLE // P09

top tips for keeping healthy:

New improved Christmas cake

on’t buy too many extra goodies – especially D chocolates, biscuits, cakes or savoury snacks. Don’t be tempted by the special offers and buy more than you need as you will still be eating them in the spring

This cake is lower in potassium and counts as one of your daily fruit portions – what’s not to love?!

It is possible to have your usual Christmas dinner, even if you have to be careful with your diet

S tick to a regular meal pattern instead of constantly grazing all day as it is harder to regulate how much you are eating

E at some healthier foods inbetween Christmas and New Year, for example have vegetables with meals, have fruit as snacks or desserts

et some exercise, especially if you are off work. Go out G for a walk on Boxing Day or at New Year if the weather is nice. Leisure centres are often quieter over Christmas too, so why not enjoy a gentle swim or a gym session

c 160g (5 ¾oz) plain flour c 100g (3½oz) butter or margarine c 100g (3½oz) brown sugar c 2 teaspoons baking powder c 2 teaspoons mixed spice c 1 teaspoon of cinnamon c 1 egg, beaten c 90g (3oz) of dried cranberries – soak fruit in 100mls of whisky, Amaretto or brandy overnight c 200g (3½oz) chopped glacé cherries c 200g (3½oz) mixed peel c 1 medium cooking apple grated or finely chopped c rind and juice of 1 lemon

I f you have lots of food left over after New Year, such as unopened boxes of chocolates or biscuits, take them into work to share, or donate them to a raffle or club

on’t be tempted to buy all the foods which claim to D be ‘healthier choices’ – often if they are lower in fat they can be higher in sugar and they are often high in salt.

Ingredients:

Method: 1 C ream butter or margarine and sugar, beat in the egg, then fold in the sieved flour, baking powder and spice. 2 F old in the soaked fruit, apple and add the lemon rind and juice and mix to form a soft dough. 3 P lace in a greased tin, bake in a moderate oven (170ºC, 350ºF, Gas Mark 3) for one hour.

Snacks We all tend to snack more at Ch ristmas. If you have high potassium levels, try to choose lower potassium snacks from the suggestions below :

4 W hen cooled, ice the cake with butter icing or water icing. A little almond essence may also be added to the icing or use a thin layer of retail marzipan or icing.

Savoury snacks

Nuts and potato crisps are high in potassium . Lower potassium alternatives inc lude: Tortilla chips, wheat, maize or cor n snacks, mini crackers (Mini Cheddars or Rit z), plain popcorn, breadsticks or cheese straws. Re member these savoury snacks are generally quite high in salt – so go easy.

Sweet treats

Sweet treats, particularly chocol ate and toffee, are also high in potassium. If you hav e chocolate, try and keep it to just a couple of chocol ates from a box . Lower potassium alternatives inc lude: Boiled sweets, jelly sweets (jelly babies, jelly beans, Jelly Tots, fruit pastilles), wine gums, Starburst, marshmallows, dolly mixtures, pla in Turkish delight or peppermint creams (not chocolate -coated) or mints. Call our donation line: 0300 303 1100

FELLOWS DAY 2017 // P10

Fellows Day 2017 Kidney Research UK’s 17th Fellows Day took place at Swansea University’s Bay campus on September 11-12. As always, extremely high quality and inspiring talks were delivered by clinicians, scientists, professors, students, patients and health providers from across the renal community.

2017 Fellows Day award winners with the Chairman, Professor Donald Fraser and Kidney Research UK Chief Executive Sandra Currie

Find out more: www.kidneyresearchuk.org

Kidney Research UK Chief Executive, Sandra Currie, said: “I think I can speak for everyone when I say Fellows Day 2017 has been a great success thanks to the exciting, inspiring and motivational people who took part. I’m proud to say Kidney Research UK has more than doubled the amount of research funding over the past four years, which is now around £6.7million. “Despite this we are still unable to fund all the quality research proposals we receive and continue to ask for everyone’s support to help us change this.”

The following pages feature this year’s award winners and further information about their research. Funding for the event was provided by Alexion UK, Amgen, Astellas Pharma Ltd, Bristol-Myers Squibb, Ipsen, Janssen, MedImmune, Otsuka Pharmaceuticals UK Ltd, Pharmacosmos UK, Sandoz Ltd, Sanofi Genzyme, Shire, Simbec-Orion Group and Vifor Fresenius Medical Care Renal Pharma.

RESEARCHER PROFILE // P11

Dr Liz Wallin Winner of the award for Best Poster Presentation. A Clinical Research Training Fellowship, jointly funded by the Medical Research Council and Kidney Research UK, enabled Dr Liz Wallin to head an exploratory study into making transplants last longer. Dr Wallin, who did her research at Oxford University, said: “End stage kidney failure affects over 60,000 people in the UK, of whom around half have a kidney transplant. “However, kidney transplants do not last forever and one of the biggest challenges we face is rejection, where the body’s immune system recognises the transplant as being

Knowing my research was interesting and useful not only to fellow doctors and scientists, but also patients and our funders, without whom this research would not be possible or worthwhile, was fantastic.

different to itself and attacks it as if it were a virus or bacterium. “Normally these responses are controlled by the medications taken by the patient, which dampen down the immune system to prevent damage to the transplant. But, in some patients, the white blood cells (or immune cells) can recognise and begin to attack the transplant – despite the medication – and at the moment we cannot predict who this might happen to. Early after the transplant the treatments we use are usually good at reversing this rejection, however, later on the type of rejection patients develop changes and treatments become less effective. This often leads to ongoing damage to the transplant and gradual failure. This is what we would like to prevent, as it shortens the lifespan of the kidney.

who might benefit from a change to lesserused medications. These were originally thought to be less effective at controlling this rejection but we discovered that they can strongly affect the cells associated with late rejection. Therefore, these lesser-used medications might be better for those people with higher numbers of these cells. “This will hopefully allow us to make better choices about which drugs to offer in order to prolong the lifespan of these transplants, while reducing the risk of complications from this lifelong medication. “This research would not have been possible without the support of Kidney Research UK so it was an honour to receive an award at Fellows Day. Knowing my research was interesting and useful not only to fellow doctors and scientists, but also patients and our funders, without whom this research would not be possible or worthwhile, was fantastic.”

“We examined the white blood cells of 60 kidney transplant patients, looking at whether these cells can predict who might be at risk of developing this kind of late rejection, but also looking at how the medications we currently use affect different types of white blood cells. Our findings suggest the most commonly used treatments may not be right for everyone, as some patients have higher numbers of the cells associated with later rejection and these cells do not respond as well to the most commonly used medications. “I hope to be able to do further work and create a test to help us individualise treatment by seeing which patients should continue on the most commonly-used treatments and

Kidney Research UK Chief Executive Sandra Currie presents Dr Liz Wallin with her award

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RESEARCHER PROFILE // P12 P10

Dr Sara Namvar Winner of the Trevor Cook Award for the best communicated research from the patient audience’s perspective. Dr Sara Namvar is a Research Associate working at the University of Manchester on projects funded by Kidney Research UK,

Kidneys for Life and the Medical Research Council. She has been investigating possible ways to prevent peritoneal fibrosis. “Some kidney patients use peritoneal dialysis, which involves feeding dialysis liquids into the abdomen to clean the blood. This is generally done during the day or overnight,” said Dr Namvar. “Although effective, this treatment eventually damages lining cells of the abdomen called mesothelial cells and causes hardening (fibrosis), so treatment has to stop. “We have been growing these cells in dishes and have identified genes that appear to be really important in regulating the development of peritoneal fibrosis. We’ve also discovered that these cells may contain a functioning biological clock.

Deputy chair of the Lay advisory committee Patricia Gooden hands Dr Sara Namvar her award

“All living creatures have biological clocks present in their brain and also in many other tissues and organs. Clock genes have

Dr Mark Findlay Winner of the award for Best Oral Presentation. Dr Findlay was given a Kidney Research UK Training Fellowship to continue his research into the effects of end-stage kidney disease on the brain – with particular interest in stroke. Dr Findlay, who works at the University of Glasgow and South Glasgow University Hospital, said: “The risk of stroke and memory problems is substantially higher for people with end-stage kidney disease, compared to the general population.

I am proud to be part of Kidney Research UK and it was a great honour to receive this award.

Find out more: www.kidneyresearchuk.org

“In addition, patients on dialysis and transplanted patients are more likely to die following a stroke. “We discovered haemodialysis is capable of affecting brain blood flow and function. This repeated ‘brain-stunning’ may be one of the reasons for an increased risk of stroke in people on dialysis.”

been shown to be important in many other conditions including cancer, asthma and diabetes, so this suggests that they must be in mesothelial cells for a reason. “I hope a successful Fellowship grant application will enable me to continue this work and gain a greater understanding of these clock genes. If, for example, we find that they make the lining cells or entire peritoneum more susceptible to fibrosis at certain times of the day or night, we may be able to counter this by ensuring that patients have their dialysis at the times when the peritoneum is most receptive and less vulnerable to damage.” “I was delighted to win such a special award at my first Fellows Day. It was a great privilege to be selected by the judging panel because patients are the most important consideration in our research – they dictate everything we do.”

I was delighted to win such a special award at my first Fellows Day. It was a great privilege to be selected by the judging panel...

acknowledging ‘high-risk’ groups we will be able to improve stroke care and outcomes for kidney patients. “I was excited to present my work at Fellows Day. This unique meeting allows researchers the chance to present their work back to the charity – without whom this would not be possible – and to patient representatives – who remind us why our work is so important. I am proud to be part of Kidney Research UK and it was a great honour to receive this award.”

However, differences in stroke care could also be a key contributory factor to the poor post-stroke outcomes for this patient group. He continued: “By studying and comparing national databases of kidney failure and stroke patients in Scotland, we found patients on dialysis were not receiving the same care as other stroke patients. For example, they were less likely to be admitted to a specialist stroke unit. “We now need to develop ways to limit the effects of dialysis on brain blood flow and function and begin to address discrepancies in care. By recognising these disparities and

Swansea University

#TEAMKIDNEY NEEDS YOU!

With your help, we can beat kidney disease Whether you trample, stomp or pedal over the silent killer, youâ&#x20AC;&#x2122;ll make a difference. Choose your challenge and put up a fight.

#TEAMKIDNEY Sign up and join

Call our donation line: 0300 303 1100

OUR HEROES // P14

Russell’s

ultimate challenge

Seasoned triathlete, Russell Van Praagh, had a special reason to celebrate when family and friends cheered him across the finishing line at this summer’s Ironman UK challenge in Bolton, Lancashire. He had conquered the most gruelling of endurance races for the second and last time – and had also raised a recordbreaking amount of money for Kidney Research UK, a cause very close to his heart. Participants in the Ironman long course triathlon must complete a 3.8km swim, followed by a 180km bike ride and then run a full 42km marathon. It’s the ultimate physical and mental challenge and Russell completed the course in just 12 hours and 50 minutes, raising a staggering £37,071 for the charity. This is believed to be the most ever raised for us by one person at one event. “It was an incredible moment when I crossed the finishing line,” says Russell, a Londonbased corporate lawyer. “I was absolutely elated to have actually finished the course in a respectable time and by the overwhelming generosity of my friends, family, colleagues, clients and business contacts, who had all pledged donations to Kidney Research UK on my JustGiving site.”

Russell has a very personal reason for supporting the charity. He had to battle a rare and acute kidney disease as a teenager and, earlier this year his father, Ben, successfully received a kidney from Russell’s younger brother, Greg, after suffering near complete renal failure. “I’ve always been a runner,” says Russell. “I ran county-standard middle-distance track at school and then took up running again in my late 30s. I did my first triathlon in 2009 and have raced triathlons every year since then.”

It was extremely hard to manage the demands of training with an average 60 hour working week, but I knew I could never give up...

It was a defeat on the track as a teenager that led Russell to discover that he had nephrotic syndrome – a condition which damages the glomeruli, the tiny units within the kidney where blood is filtered, which can lead to kidney failure.

working week, but I knew I could never give up,” says Russell. “The cause is too important to me and I could never let down the people who have pledged their support for me and for Kidney Research UK.”

“I was racing against my arch rival from another school,” says Russell. “I was expecting to beat him but on that day he basically left me for dead. When I tried to run faster there was nothing there, I just felt very sluggish and tired.

Russell will continue to compete in conventional triathlons and also plans to offer training, fitness and nutritional advice to other Kidney Research UK supporters who would like to become fellow fundraising triathletes.

“Tests soon revealed that I was passing a lot of protein and blood, which is a very common symptom of nephrotic syndrome. Incredibly, my GP was very well acquainted with this particular kidney condition and he referred me to a renal surgeon in London. I eventually had chemotherapy, which was quite a revolutionary treatment for the disease at the time. It did cure me, but I was very lucky.”

Watch Russell cross the finishing line at this summer’s Ironman UK challenge by visiting www.justgiving.com/fundraising/vanpraagh

Russell completed his first longer distance Ironman triathlon challenge in 2014, thinking it would be his first and last. But his father and brother eventually persuaded him to take on the unforgiving challenge one last time for Kidney Research UK. Russell shares a kiss with wife, Carrie, on route

Find out more: www.kidneyresearchuk.org

“It was extremely hard to manage the demands of training with an average 60 hour

YOUR YOURMESSAGES MESSAGES// //P15 P15

Stay in touch Communications officer Yvette Bell and community fundraiser Beccy Boyle

AN A-Z OF FUNDRAISING INSPIRATION

Where your mo ney goes Your sup fund research

to save lives.

Kidney Resear ch UK has to turn of the excelle nt research proposaway around half to support – what als that we want possible breakth be in those we roughs might cannot fund?

“Without peop le fundraising for Kidney Research UK, vital research wouldn’t happ en. We woul able to help anyo dn’t be ne.”

Kidney Health

Star Tweets

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1. Set a target

Around 60,000 people with kidney today becaus failure are alive e of the advanc in the UK es made throug causes, preven h research into tion and treatm the ent of kidney Research UK has disease. Kidney made a signific ant contribution advances, made to these possible by our generous suppor ters. The research has the potential to tackle our approac UTIs, improve h to everyday conditions for long-te rm sufferers of serious kidney UTIs and vitally damage. I am reduce the likeliho hoping this work vital research discove od of these causing will have a huge impact. With your ries out of the lab and focus them support, we want community. This on preventing to take is where we can and curing kidney really start changin disease in the g people’s lives. ”

• A person on dialysis aged 25 years has the same cardiac progno sis average 75-yea as the r-old.

Boo

st your fundraisi With charity events takingng place up and down the country, the secret to a successful one is to grab people’s attention and break through the noise.

port will help

Dr Rachel

Floyd is a scientis t funded by Kidney Liverpool Univers Research UK based ity: “Right now, at my team and I a vital research are working hard project. We’re on trying to find out tract infections why some urinary (UTIs) – often caused by E.coli – can to antibiotics. become resistan In serious cases t the UTIs can go damage and even on to cause kidney kidney failure, which could mean unless a kidney a life on dialysis transplant become s available.

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, Instagram and LinkedIn. 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 email: pressoffice@kidneyresearchuk.org.

2. Go online with your sponsorshi p

4. Gift Aid It!

5. Match it!

3. No cash, no

problem! 6. Approach you local businesses r

Keeping it purple @Kidney_Research - Dirty Dozen final 3 coming up - marathon/half and bridges walk! www. justgiving.com/rachrl-cox #CycleToWorkday

Welcome to

#TEAM KIDNEY

Your fundraising pack

s: Getting others to share your passion and support for Kidney Research UK may feel like an uphill task.

• A kidney transpl ant only lasts between 10 and 15 years on averag e.

Fact

• Over 3,700 people a year die whilst on dialysis around 250 people and die whilst waiting a year for a kidney transpl ant.

@rachel0312

That’s why, after consultation with some dedicated supporters, Kidney Research UK has launched a new pack for fundraisers to use, designed to help inspire and support fundraising activities.

Community fundraiser for Kidney Research UK, Beccy Boyle, said: “If you are keen to raise funds for us but not sure what to do, don’t worry, our pack is full of inspiration! There’s an A to Z of ideas and each pack is bespoke to provide you with the tools you need.” If you’re chomping at the bit to get started, head over to the Kidney Research UK website, where there is a wealth of fundraising ideas and resources for people to download or order.

First back at our #ESPN2017 fun run! Well done Nick! @Kidney_Research

Beccy said: “There are now some really great and easy to use posters for people to order and use for the next fundraising event. It takes the hard work out of organising an event and will hopefully maximize the impact, as the posters are really modern and colourful. “We also have bunting, balloons, banners and stickers for people to use. We are really proud of the packs and we hope people enjoy using them.” Michael Nation, who is the Kidney Research UK Director of Development, recently used one of the packs to raise over £1,000 for the charity. Michael chose the ‘Close Shave’ pack and held a sponsored leg wax in readiness for a cycling event. With the help of a JustGiving page he got plenty of support. He said: “The idea to wax my legs seemed like a good one and, as it turned out, lots of people were happy to see me ‘suffer’ in the name of a good cause.”

Daniel is 3 and off to nursery. But he’s waiting for a kidney transplant. Could you join the organ donation register http://bit.ly/29BxDqd @Kidney_Research

So, whether you are planning a casual dress-down day at work or something bigger such as a charity ball, there are plenty of information and ideas to help you.

My Mum (@anne_lythgoe) donated her kidney to my Stepdad (@mike_E_Lythgoe) if that’s not love then I don’t know what is!

For further information and ideas visit: www.kidneyresearchuk.org/fundraising-resources

@lauraaaclaire

Call our donation line: 0300 303 1100

Every year we have to turn away excellent research applications which we simply cannot afford to fund. If you share our determination to find cures for kidney disease, you might like to consider a regular gift to help us invest in even more kidney research.

£7 a month

£3 a month

could help us fund researchers like Professor Moin Saleem tackle the progression of kidney diseases affecting children.

could help us invest in the next generation of renal researchers, like Liz, Sara and Mark. This Guarantee should be detached and retained by the payer

The Direct Debit Guarantee c T his Guarantee is offered by all Banks and Building Societies that take part in the Direct Debit Scheme. The efficiency and security of the Scheme is monitored and protected by your own Bank or Building Society. c If the amounts to be paid or the payment dates change, Kidney Research UK will notify you 7 working days in advance of your account being debited or as otherwise agreed. c If an error is made by Kidney Research UK or your Bank or Building Society, you are guaranteed a full and immediate refund from your branch of the amount paid. c You can cancel a Direct Debit at any time by writing to your Bank or Building Society. Please also send a copy of your letter to us.

Yes, I want to help the fight against kidney disease 1

I would like to give

£3

£7

£15

I would prefer to give £ Month

each Starting

15th or

Direct Debit instruction:

Instruction to your Bank or Building Society to pay Direct Debits

Quarter

Year

30th of M M / Y Y Y Y

Please complete your personal details:

Please fill in this form and return it to us in the enclosed envelope to the address below. Please do not send the form to your bank.

Name(s) of Account Holder(s): Branch sort code:

–

Bank or Building Society Account No:

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Name and full postal address of your Bank or Building Society Branch:

Title:

(Name of Bank/Building Society)

To: The Manager

Name:

Address:

Address: Postcode: Tel no:

Postcode:

Mobile no:

Originator’s Identification Number:

Email:

Please Gift Aid your gift:

You can make your gift worth 25% more by making a Gift Aid declaration. In order to Gift Aid your donation you must tick the box below: I want to Gift Aid my donation of £ and any donations I make in the future or have made in the past 4 years to Kidney Research UK. I am a UK taxpayer and understand that, if I pay less Income Tax and/or Capital Gains Tax than the amount of Gift Aid claimed on all my donations in the current tax year, it is my responsibility to pay any difference. Please let us know if your tax circumstances or name/address change so that we can update our records.

Date:

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Instruction to your Bank or Building Society: Please pay Kidney Research UK Direct Debits from the account detailed in this instruction subject to the safeguards assured by the Direct Debit Guarantee. I understand that this instruction may remain with Kidney Research UK and, if so, details will be passed electronically to my Bank/Building Society.

Signature(s):

Date: Banks and Building Societies may not accept Direct Debit Instructions for some types of account.

Please now return this form to Kidney Research UK.

Put this form into an envelope and return to: Freepost RTGZ-KUHJ-XHKU, Kidney Research UK, 2a Halifax Road, Melksham SN12 6YY

THANK YOU

We really value your support. We’d like to keep in touch to update you about how our research is changing the lives of kidney patients, our fundraising activities and ways to get involved. Yes, it’s okay to contact me by (please tick appropriately) Post Telephone on this number: Email at this address No, I do not wish to hear from Kidney Research UK in future. By ticking this box, we will no longer be able to keep you informed about our research or how your gifts have supported our work.

UPD_KEYS

Appeal number: 2017-UPDNOV

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