Update - Spring 2017, Issue 12 by Kidney Research UK

Spring 2017 Issue 12

THE MAGAZINE FROM KIDNEY RESEARCH UK

SHINING THE SPOTLIGHT ON WOMEN IN SCIENCE PAGE 02

Creating a ‘wow’ on World Kidney Day 2017

Simple technique offers new hope for childhood kidney diseases

Researcher profile Dr Morag Mansley

Welcome! I love the picture of the positively beaming Dr Rachel Floyd on the front cover of this issue, I hope you do too. Rachel is a great ambassador for our charity, passionate about her research into antibiotic resistant UTIs and inspirational to the younger researchers in her lab. We’ve worked Rachel especially hard this year, as she has been one of the faces of our Women in Science campaign – see page 2 – I’m hoping we don’t lose her to a career in broadcasting. We are proud of all our researchers. Some of our most raw talent can be found in Bright Young Things on pages 12-13. This features three undergraduate students who we have funded to take a brave leap and interrupt their medical degrees to spend a year on research. At the other end of the scale is the very experienced Dr Claire Sharpe, who gives a fascinating insight into her motivations and achievements in tackling kidney scarring on page 6. Do read Dr Shalabh Srivistava’s explanation of his pursuit of a potential therapy for nephronophthisis, which particularly affects children – see pages 4-5. He has been able to extract cells in a non-invasive way, a first for this particular technique in the UK. Our researchers are really blazing the trail. There’s so much to enjoy in this issue. We’d love to know your thoughts – do get in touch to tell us what you think. Thank you for reading and thank you for your support!

Rosie

Rosie Loft, Editor pressoffice@kidneyresearchuk.org

Celebrating opening new shops In the last month, Kidney Research UK has opened two new shops – one in Exeter and one in Cardiff – which have moved to bigger and better located premises having outgrown our original ones. In February, nine year old Trenton Gillard, who was born with one kidney, cut the ribbon and together with the Lord Mayor formally opened the new Exeter store. Taking place on World Kidney Day in March, the new shop in Cardiff was opened by local MP Kevin Brennan and our CEO, Sandra Currie. Sandra Currie said: “Our shops are an essential part of our charity’s fundraising focus. They generate income but more than that they enable us to develop close relationships within the wider community. That may be the local renal unit or other organisations which support us. The shops are our community frontline and provide an important resource to the community.” We are always looking out for donations. Clothes, white goods, electrical items, household goods, books, and toys can be dropped off at the shops or collected from you if you are in the local area. Our other shops are in Dalkeith (Edinburgh) and Redcar. If you would like to volunteer to assist us in our shops, contact us on 0300 303 1100 for more details.

Women in science in the media spotlight To celebrate the UN’s International Day for Women and Girls in Science on 11 February we have been promoting the female researchers we fund and their achievements in tackling kidney disease. Our nationwide campaign also highlighted some of the particular challenges women face in their academic or clinical careers. Researchers including Dr Rachel Floyd at the University of Liverpool, Dr Claire Sharpe at University College London, Dr Rachel Lennon at the University of Manchester and Dr Sarah Hosgood at Cambridge University featured in live interviews on BBC regional radio, profile articles in online science media, the Huffington Post and in consumer magazines.

Contributors Allison Parkinson Sarah Williams Alice Smith Ruth Peasgood

Tel: 0300 303 1100 www.kidneyresearchuk.org

Find out more: www.kidneyresearchuk.org

Sandra Currie, Kidney Research UK’s Chief Executive, said: “We are very proud of all of our researchers who are helping us find ways to treat, alleviate and hopefully, one day, cure kidney diseases. The fact that so many of them are women, and that they may have had added obstacles to get over in their career paths makes their achievements even greater.”

Dr Rachel Floyd

Dr Claire Sharpe

Dr Rachel Lennon

Dr Sarah Hosgood

NEWSROUND // P03

Diary dates

Creating a ‘wow’ on World Kidney Day 2017

London Marathon

Sunday 23 April Run 26 miles over one month

‘Kidney’ was the word on thousands of lips on 9 March this year. Fundraisers and volunteers all around the UK took to the streets, hospitals and the airwaves to raise awareness of kidney disease and drum up support for the kidney cause as part of World Kidney Day. A swell of grassroots activity ensured positive health messages were shared through display stands, ‘phone the expert’ sessions, ‘pin the kidney on the body’ competitions and various exercise-based events. Meanwhile, a series of ‘kidney facts’ spread through social media helped ensure #worldkidneyday was trending on Twitter.

Run for Research 1-31 May Run 26 miles

Kidney Research UK released results from our YouGov survey on World Kidney Day which revealed that the majority of people in the UK are not aware of the risks of kidney disease, and have limited knowledge of its causes, symptoms, or treatment. In the survey, those with the most common risk factors for kidney disease (vascular disease, high blood pressure or diabetes) said they do not consider themselves to be at risk. The messages were picked up by media outlets online, on the radio and on television.

Nottingham 10K Sunday 28 May Run 10km

Newcastle Bridges Walk Sunday 11 June Walk 7 miles

London Bridges Walk Sunday 2 July Walk 7 miles

British 10K (London) Sunday 9 July Run 10km Gloucestershire Royal Hospital

BBC Radio Cambridgeshire

Ride London 100 Sunday 30 July Ride 100 miles

Dog Jog (Edinburgh) Sunday 30 July Run 5km

Dog Jog (Birmingham) Peterborough Hospital

Saturday 9 September Run 5km

Victoria Hospital Glasgow

Great North Run

You could be a winner

Saturday 10 September Run 13.1 miles

Help spread the word about our Kidney Research UK Summer Raffle. Our raffle is a vital source of funding for our research projects, and with your kind help and support we can get even closer to finding a cure for kidney disease. Tickets cost just £1 and you or your friends and family could win one of 50 amazing cash prizes. Early birds who get their tickets back to us by 30 April 2017 are automatically entered into our £100 bonus draw on 12 May 2017. The big draw will be made on 30 June 2017. With a top prize of £5,000 this is an opportunity not to be missed. Visit our website and request your tickets online at: www.kidneyresearchuk.org/support-us/ lottery. Or you can request tickets by giving us a call on 0300 303 1100 or emailing us at: supportercare@kidneyresearchuk.org

Glasgow Bridges Walk Sunday 8 October Walk 7 miles 1st PRIZE

2nd PRIZ

£5,000

£1,000

10 x 4th PRIZE

IZ 2 x 3rd PR

£500

£100

36 RUNNER S

£50

Dog Jog (London) Sunday 29 October Run 5km

KiltWalk (Various)

Various Walk 6, 13 or 26 miles in a kilt To register for our events, call 0300 303 1100 or visit: www.kidneyresearchuk.org/ get-involved/events Call our donation line: 0800 783 2973

HOW YOUR MONEY’S HELPED // P04

Simple technique offers new hope for childhood kidney diseases For the first time in the UK, scientists have used kidney cells extracted from patients’ urine and successfully treated these cells.

This work, funded by Kidney Research UK, has now opened up a very simple, non-invasive way of studying the behaviour of cells in inherited cystic kidney diseases – including currently untreatable childhood conditions.

“We studied two patients with nephronophthisis,” says Dr Srivastava. “A four-year- old who is now on dialysis and a 16-year-old whose kidneys are only now showing signs of deterioration in function.

Cystic kidney disease is a common, inherited condition and accounts for 10% of UK patients requiring dialysis and transplantation.

“Using urine samples from these children, and from other children of a similar age without the disease, we were able to extract naturally occurring kidney tubule cells and grow further cells from them, keeping them alive in culture for several weeks.”

We invested £227,000 into a three-year research project to help Dr Shalabh Srivastava and his team at Newcastle University gain a better understanding of nephronophthisis, a type of inherited cystic kidney disease which generally affects children. Nephronophthisis is a condition which causes the kidney to develop cysts and scarring as the child gets older. Sadly, children who are affected tend to go into kidney failure anytime from birth to 30 years of age. The disease affects each individual differently and the inherited genetic mutations can also cause some children to have progressive blindness and brain developmental defects. In its most extreme form it can cause unborn babies to die in the womb. At the moment there is no known treatment for this disease. Mutations in several genes are responsible for this disease but the Newcastle team focused on the gene named CEP290.

SCIENCE SIMPLIFIED Cultured kidney cells: cells grown outside the body Primary cilium: a structure on the surface of the cell which looks like and acts as an antenna for cells to communicate with each other.

Find out more: www.kidneyresearchuk.org

This technique was pioneered in the Netherlands and Dr Srivastava travelled there to learn this technique. “Our focus was on a structure on the cell called a primary cilium – which essentially

looks like and acts as an antenna for the cells to signal or communicate with each other. We compared the antenna from cells extracted from children with no disease and those with mutations in CEP290. We found that the children who had the disease had extremely long antenna – almost three times the size of a normal antenna. So we made the assumption that, as they were so long and wiggly, they were unlikely to be effectively communicating messages to other cells.” It is known that the gene, CEP290, is essential in the formation and normal functioning of the primary cilium. Earlier in the study, the team had seen similar cilia abnormalities and signalling defects in the cells of mice with nephronophthisis. The team then focused their attentions on a different technique called Exon Skipping. “Our DNA is made up of small pieces of information called exons – they’re like the individual stones in a stepping stone bridge. These exons are put together in long sentences for our bodies to make sense of them and that process goes on in all of us all the time,” says Dr Srivastava. “When genetic codes are faulty some sentences will contain a defective exon which takes the body off course – in the same way that a person, trying to skip over a missing stone in a stepping stone bridge, would fall into the water. But Exon Skipping is a clever technique which enables the body to skip over the defective exon and move on to the next part of the sentence.

HOW YOUR MONEY’S HELPED // P05

This was the first time in the UK that a research project has used urine-derived kidney cells from patients and the beauty of this technique is it’s so simple. There’s no need to take any blood; all that’s required is a sample of urine. It’s ideal for patients, especially children who may be scared of needles.

“So, using our patients’ individual mutations, we were able to make the machinery in their cells ignore the defects they were carrying and skip to the next part of their sentences. And, although now slightly shorter, the sentences still made sense. In this way, we were able to successfully treat the cells and make them act normally, rather than abnormally.

Of course, all of this happened in cultured kidney cells so we are far from claiming that we have found a treatment for nephronophthisis. However, it has opened up many new and exciting lines of investigations in our ongoing quest for finding ways to modify the course of this disease.

The next step A

Image A shows elongated human kidney cell cilium in a patient with nephronophthisis. Image B shows shortened cilium after exon skipping treatment.

Dr Srivastava plans to continue his research into nephronophthisis on a voluntary basis while seeking funding for a larger project involving more patients. This is likely to delve deeper into the exact role played by the CEP290 gene in the development of the disease and also further investigate Exon Skipping as a potential therapy. “As nephronophthisis affects each patient differently we will need to develop treatments which are tailored to the individual,” says Dr Srivastava. “Some patients’ gene mutations may not be compatible with Exon Skipping, especially if they have more than one defective exon (or missing skipping stone) at different intervals. That’s why we intend to explore the development of potential new drugs for patients who may not be able to respond to gene therapy.”

Dr Srivastava presented his study findings at our recent Fellows Day. To see a video of his presentation go to: youtu.be/lsrtuc-Xvl8

Help us change more lives Help us say ‘yes’ to more groundbreaking research proposals like Dr Srivastava’s – each one potentially holding the breakthrough that kidney patients have been waiting for.

The Buckley family (above) and the Ahmed family (left) played a major role in the project. With their permission and support Dr Srivastava and his team were able to study the effects of Exon skipping in their sons’ urine derived kidney cells.

Make a donation today at www.kidneyresearchuk.org/donate or call: 0800 783 2973 THANK YOU

Call our donation line: 0800 783 2973

THE BIG INTERVIEW // P06

Dr Claire Sharpe: an inspirational Woman in Science Leading nephrologist Dr Claire Sharpe is a Reader in Renal Medicine and an Honorary Consultant Nephrologist at King’s College London and King’s College Hospital.

Find out more: www.kidneyresearchuk.org

She divides her time equally between her research and teaching work and her clinical work with renal patients, including those with kidney damage caused by sickle cell disease. Dr Sharpe’s research studies are significantly advancing our understanding of the development of renal fibrosis – the main underlying cause of kidney failure. She hopes this ongoing work will eventually lead to the development of new anti-fibrotic drugs which could make Chronic Kidney Disease (CKD) a treatable condition, resulting in fewer patients needing to depend on dialysis to survive.

Kidney Research UK has played a pivotal role in the career of the mother of three; by initially awarding her a Clinical Training Fellowship in 1999 and by funding three of her research projects. Earlier this year Dr Sharpe helped support our campaign to mark the UN International Day of Women and Girls in Science day on 11 February. We spoke to her recently to find out about her early inspiration, personal career experiences and her ongoing work.

THE BIG INTERVIEW // P07

Around 55 per cent of people coming into medicine are female but this drops to about 23 per cent at clinical professor level, so no institution can say that they don’t have a gender inequality.

Alongside him, the other person that truly influenced me was Rosalind Franklin – an X-ray crystallographer who worked at King’s College London in the early 1950s. She was the person who collected the data that proved the structure of DNA. But she died tragically at a young age, only receiving her due recognition after death. Her story really fired me up as a teenager and the injustice of it all made me want to go on and fight the cause as well.

What research are you working on at the moment?

We have two ongoing projects, both of which are being funded by Kidney Research UK. The first one involves the K-Ras gene, which is vital in the scarring process. We are hoping to learn more about the way K-Ras sends messages to cells to change cell behaviour. We’re also aiming to identify new proteins that could be useful for future drug development. Kidney disease often arises from abnormal cell growth in the filtering units of the kidney. Patients who show these changes include those with common diseases such as diabetes and lgA nephropathy. In our second project, we’re investigating whether a new type of drug, known as a selective T-type calcium channel (TTCC) inhibitor, could potentially benefit these patients and reduce kidney damage. Depending on the outcome of our studies, this drug could go on to be tested in clinical trials.

Dr Claire Sharpe

Who or what first inspired you to become a scientist?

I’ve been interested in science for as long as I can remember. But I suppose my initial drive to turn my passion into a career came from a rather unexpected source. I remember my physics teacher saying to me: ‘Girls really only do Physics A Level because they know they’re going to be in a class full of boys.’ And that comment made me determined to show him that I was going to do things differently.

As a member of the King’s College London School of Medicine Athena SWAN selfassessment committee, you recently helped your division to successfully obtain a silver charter mark for demonstrating gender equality. Have you seen many examples of inequality?

Have you faced any hurdles associated with your gender?

I think I had enough faith in the system to know that being heavily pregnant at my clinical science award interview would not adversely influence the outcome. However, I did find that, on returning back to work full-time after having one of my children, attitudes changed towards me somewhat. Because my working week was split between two locations, I was treated as a part-timer and I experienced some of the incorrect assumptions associated with working part-time, such as people thinking you’re not fully committed or part of their team. People need to recognise that these attitudes are not appropriate.

What would you say has been the secret to your success?

Dogged determination, chance opportunities and supportive individuals. I’m very lucky to be able to do all the things I enjoy while still having the flexibility to focus on my young family, whenever they need me. It’s very hard work but it’s enormously rewarding.

Rosalind Franklin recently took your research work into totally new territory. Can you explain how? I took part in a project called The Franklin Effect, which was run by The Electric Voice Theatre as a celebration of the work of Rosalind Franklin and collaboration between the arts and sciences. I was paired up with British composer Lynne Plowman and she transposed the chemical sequence to the K-Ras gene into a musical score, written for a four voice part. This was performed at the Edinburgh Fringe Festival and at the Science Museum and is now available on CD. It’s certainly not pop music or easy listening, but it is interesting and the project was great fun. And that’s what I love about research – it always offers endless possibilities!

Around 55 per cent of people coming into medicine are female but this drops to about 23 per cent at clinical professor level, so no institution can say that they don’t have a gender inequality. It’s about looking at your data and trying to work out why you have one and what you can do to address it. Some processes do effectively discriminate against women, even in an unintentional kind of way. For example, setting up decision-making meetings at 8am when people are doing the school run. But I think there has been a sea change in academia over the past five years which is making a big impact on gender equality.

Electric Voice Theatre performing the K-Ras gene

ou can read the full interview with Y Dr Sharpe on our website: www.kidneyresearchuk.org/dr-claire-sharpe For further information about The Franklin Effect visit: www.electricvoicetheatre.co.uk

Call our donation line: 0800 783 2973

HEALTH & LIFESTYLE // P08

We’re focusing on fitness Kidney patients’ views, needs and experiences are at the very heart of two exciting research projects which aim to improve fitness, wellbeing and quality of life.

I feel a lot better in myself. In some ways, in fact, I feel totally different in myself – happier, yes, definitely.

Based in Leicester and Derby and supported by Kidney Research UK, the studies aim to help patients at various stages of kidney disease – and could even help to save lives. People with kidney disease have an increased risk of heart disease and other health problems such as muscle loss. Lifestyle changes associated with living with a chronic illness can also affect people emotionally and cause them to become less active. Previous research has shown that regular exercise can be beneficial for patients’ health and wellbeing but they need help, advice and support to give them the confidence and motivation to improve their fitness. We gave a £38,962 innovation grant to Dr Alice Smith, Team Leader of the Leicester University Kidney Exercise Team, to create a new exercise programme for patients with early stage kidney disease. Working with 50 patients and a range of healthcare professionals at Leicester General Hospital, Dr Smith and research students Amy Clarke and Heather Mackinnon have spent the past two years developing, testing, modifying and re-testing the programme. Find out more: www.kidneyresearchuk.org

The programme has two parts: c Educational information – including clear, user-friendly information about kidney disease and its associated complications and risks; advice about the benefits of physical activity; tips from patients on how to stay active; practical activities; suggestions and frequently asked questions. c Tailor-made patient activity plans – focused on encouraging people to walk more and designed to meet individual lifestyles, needs, abilities and goals.

It’s the first time for 19 years that I’ve had such a consistently busy time and coped.

“This whole project was about listening to people and finding out what works for them,” says Dr Smith. “For example, we initially envisaged including a one-to one motivational interview session in the programme but we have also developed a group version of the session in response to patient feedback. “Everyone’s different so there was no point having a ‘one-size fits all’ approach to the activity plans. Instead, we worked with patients to understand what type of activities they thought they could fit into their lifestyles and what they’d like to achieve from them. We did that because, when people set their own goals and measure them themselves, they feel good when they’ve achieved them.”

Patient feedback has been extremely positive and Dr Smith is now seeking funding for a further, longer study to test the effectiveness of the programme over time. If successful, the programme could be adapted for use in the community and in hospitals and could eventually be rolled out across the UK.

HEALTH & LIFESTYLE // P09

Spring’s a great time to get more active – here are ten top tips to help you on your way:

The course has empowered me to deal with every aspect of kidney disease.

1 Get inspired Whatever your reason for wanting to get fitter, make sure it’s important to you.

2 Take things one step at a time

Complications including malnutrition, muscle wasting and reduced energy levels can affect some kidney patients, particularly in the months leading up to starting dialysis. This can make it hard for people to manage dayto-day activities and can significantly reduce their independence and quality of life. Fiona Willingham, Renal Clinical Lead and Research Dietitian at the Royal Derby Hospital, wants to see if a new exercise, nutrition and education programme, offered to patients shortly before they start dialysis, can be more successful at improving patient health and quality of life than standard care. We have awarded a £198,000 Allied Health Professional Fellowship to Fiona, which will enable her to come out of clinical practice for three years and focus on the research project. Known as the PREHAB study (pre-emptive rehabilitation to prevent dialysis-associated morbidity), the project will involve at least 60 patients. Half will be randomly assigned to the ten week exercise, nutrition and education programme and the others will receive the hospital’s standard pre-dialysis care package.

“We worked very closely with patients to devise, test and refine the programme to ensure it suited their needs and produced benefits,” says Fiona. “Our pilot studies showed that our programme was successful from a patient satisfaction point of view but what we don’t know yet is how it will compare to our standard care package, which doesn’t offer patients the same level of access to all the multidisciplinary services. “If we find that our programme has tangible benefits for patients (such as physical, quality of life and patient satisfaction benefits) we would like to introduce it into other hospitals and do further research with even more patients. It’s incredibly exciting and hopefully this is just the beginning.”

All patients will undergo a number of assessments when recruited to the study, including gauging muscle strength, food intake, ability to exercise and quality of life. These will be repeated when they begin their dialysis and again at three, six and 12 months afterwards in order to assess any changes and highlight any differences between the two groups.

c practical advice for common issues including fatigue and anxiety

4 Have a spring clean A good tidy up can be a great way to exercise – and a stress-reliever too.

5 Go for a walk A stroll in the fresh air can lift your mood – but always remember to take a drink and a mobile phone and tell someone where you’re going.

6 Tweak your daily routine Take the stairs instead of the lift, park the car a little further from the shops or dance along to the radio while the kettle’s boiling.

7 Review your diet Even little changes can make a difference, such as swapping a chocolate biscuit for some fruit or an oatcake – especially to people with early stage kidney disease. But if your kidney disease is more advanced, always remember to speak to your health professionals before making any dietary changes.

8 Invite your friends

9 Track your progress Keep a simple note in your diary or invest in an activity monitor – but just remember that everyone can get fitter if you start small and build up.

ca gym-based exercise programme, including cardio-vascular and resistance exercises, which will be adapted to each patient’s abilities and designed to help them progress

c nutritional help and advice – including practical tips for quick and easy meal and snack ideas

3 Get out in the garden Gardening for just 15 minutes is roughly the same as walking 1,200 steps – it’s even higher if you mow the lawn.

It’s much easier to stick to an activity if you’re doing it with a friend or partner, so get them involved too.

The programme includes:

ca home exercise programme in which patients set personal goals, and are monitored through exercise diaries

Don’t try to change everything in your life at once. Just focus on making one positive change and you could soon be inspired to make another.

10 Set yourself a goal and include a reward

I feel better mentally. I’m also physically better. My husband noticed a big change in me.

Start with something small and achievable and build up your activity towards a longterm goal. I t can take a few attempts to make a positive change so don’t be too hard on yourself if it doesn’t go as smoothly as you imagined. What’s important is to remember that if you’ve done it once you can do it again! Call our donation line: 0800 783 2973

RESEARCHER PROFILE // P10

Dr Morag Mansley Dr Morag Mansley PhD was awarded a Kidney Research UK-funded non-clinical fellowship at the University of Edinburgh, where her work focuses on high blood pressure and identifying genetic signals used by steroid hormones to promote salt and water retention in the kidney.

“I first found science interesting at high school; I had a fantastic biology teacher, who made biology a really fun subject with the exciting and interesting experiments that we took part in. I always knew that I wanted to do a job that I was passionate about. I never dreamed that my career would end up being in science, but following a really great laboratory project in my final year at the University of Aberdeen, I knew that scientific research was what I wanted to do. Spurred on by a very supportive and inspiring supervisor, Professor Gordon McEwan, I applied for and undertook an MRC-funded PhD at the University of Dundee. Over the next four years, I studied ion transport processes across both airway and renal epithelial cell models. During my PhD, the focus of my research moved into the kidney, which is a very unique and complex organ with many different important processes happening simultaneously. I was fascinated. I’m particularly interested in how ions (like sodium) are transported across cells, which within the kidneys, plays an incredibly important role in the long-term control

of blood pressure. Having high blood pressure greatly increases a patient’s risk of additional cardiovascular complications including chronic kidney disease, stroke and heart disease. Having completed my PhD in 2010, I was awarded a scholarship in Germany, followed by a highly competitive Alexander von Humboldt Fellowship. Over the next two years I studied the role of neurotransmitters upon sodium absorption within the kidney. I then returned to the UK when the opportunity arose to work as a named postdoc on a Kidney Research UK project grant at Durham University to study the effects of hormones on kidney function. It was great to get back into the UK renal research community, collaborating closely with the team at the University of Edinburgh and building up my UK network. Now I’m at Edinburgh, where career progression is very well supported. It’s internationally renowned for kidney research and the Renal & Hypertension theme in the Centre for Cardiovascular Science has an exciting mix of clinical and basic biomedical research.

Being awarded the Kidney Research UK fellowship has definitely been the high point of my career so far. It’s the first time I’ve led my own independent project, pushing forward my research. To be doing it at the centre of research excellence at the University of Edinburgh is an enormous privilege. It’s a great institution to be a part of, because of the incredible strength of renal research that occurs here, the huge crossover between clinicians and basic scientists and the calibre of the scientists, including my mentor Dr Matthew Bailey. I’m very grateful for all the guidance and support I’ve received from my mentors. My advice to anyone embarking on a career in research is to be prepared to work hard, learn to overcome obstacles and surround yourself with people who will be your critical friends and promote your research. I don’t think I would have aimed so high had it not been for the inspiring people I’ve worked alongside. It’s also been important to me to see women progress to the higher ranks in the research community here at the University of Edinburgh. Kidney Research UK is amazing: as well as funding posts like mine, it creates valuable opportunities for patients, clinicians and scientists to meet and discuss the ways we can work together towards the end goal of tackling kidney disease. Before being involved with Kidney Research UK, I’d never spoken to a renal patient. I’m a basic scientist, so meeting people who are affected by kidney disease is always a very humbling, intensely motivating experience. There’s no getting away from the importance of what you’re doing, when you’re staring at the Sharkey stark reality of chronic kidney diseaseLord in the face.”

Find out more: www.kidneyresearchuk.org

JOIN

#TEAMKIDNEY

YOU can help us make a difference EVERY walk, run, jump or cycle makes a difference. Find your challenge today and help us beat kidney disease

#TEAMKIDNEY Sign up online today at www.kidneyresearchuk.org/events or call us on 0300 303 1100

RESEARCH ROUND UP // P12

Bright young things – our Intercalated Degree students Kidney Research UK is committed to developing more renal researchers for the future.

We want to attract and inspire the Sanna Tahir (23) is a fourth-year student at Birmingham University. brightest medical undergraduates so we provide Intercalated Degree funding. Two years ago she joined Consultant nephrologist Dr Adnan Sharif and his team at the Queen This £5,000 grant enables students to Elizabeth Hospital, Birmingham for a statistical study exploring post-transplant outcomes in take time out of their degree studies ethnic minorities. to join some of the UK’s leading renal research groups and focus on special year-long research projects. “There’s an assumption that black and South Asian kidney transplant patients We recently caught up with three students to find out more about their introduction to the world of renal research.

See how your money can help

don’t do as well as their white counterparts so we wanted to see if there was any evidence to back this up,” says Sanna. “We used two English databases, one which listed all 1,140 patients who had had transplants at the Queen Elizabeth Hospital between 2007 and 2015. The other was a national database of 1,290 black patients who had had kidney transplants in England between 2003 and 2013. We also had data from New York State which listed the outcomes of 2,873 black patients who had had kidney transplants between the same ten-year period.

Last year we invested £60,000 to fund 12 medical students like Alex, James and Sanna around the UK through our Intercalated Degree awards. This represents an increase from three awards in the previous year, and an extra investment of £45,000.

“We compared survival rates after transplant and looked for other events such as heart attacks, cancers and diabetes. Essentially we found no difference in patient survival between the three ethnic groups in England. However we did note increased rates of post-transplant diabetes in black and South Asian patients.

Help us provide hope for the future by supporting the next generation of renal researchers.

“In contrast, we found that the black New York State patients had a higher mortality rate than their white counterparts, which could be caused by socioeconomic factors rather than ethnicity.

Make a donation today at

www.kidneyresearchuk.org/donate or call: 0800 783 2973 THANK YOU

Find out more: www.kidneyresearchuk.org

“I feel really proud to have been involved in such an important study and I am very grateful to Dr Sharif and Kidney Research UK. The whole experience has completely changed my outlook on medicine and made me realise that I want to do more than just treat patients; I want to find new ways to treat patients better.”

RESEARCH ROUND UP // P13

James Todd (24) joined Professor Neil Sheerin’s renal fibrosis group at Newcastle University from September 2015 to August 2016.

Alex Hollis (24) is in his final year at Birmingham University.

James, who is now in his final year at Newcastle University, worked on a project which centred around the possible role of kidney cells and proteins in the development of renal fibrosis – or kidney scarring.

“Kidneys are cooled prior to transplantation in order to slow down the rate of metabolism – the chemical reactions involved in maintaining the living state of cells within the kidney. This is done because if there’s not enough energy to fuel these chemical reactions, cells are unable to function properly and eventually die,” says Alex.

“Previous research carried out by Professor Sheerin’s group had shown that the kidneys of patients with renal fibrosis had more Th2 immune cells than Th1 cells,” says James. “They suspected that when kidney cells were being put under stress, they released certain proteins, known to be involved in driving the creation of Th2 rather than Th1 cells. In turn, they thought that production of these proteins and consequent creation of Th2 cells could be partially responsible for the development of kidney scarring. “I carried out various tests to look for the presence of these proteins and their possible effect on T-cells, including putting cells under stress by starving them of oxygen. The results did not prove the team’s hypothesis but, in the course of these studies, I discovered the presence of new proteins which had not been shown to be produced before. These could prove to be important in driving the process which causes kidney scarring. “I thoroughly enjoyed my whole year and I’m extremely grateful to Kidney Research UK and Professor Sheerin’s group for giving me this amazing opportunity. I definitely want to do more research in the future because there are so many patients in the UK with chronic diseases like renal fibrosis that are not yet treatable; I’d really like to do something to change that.”

Last year he joined Dr Christian Ludwig’s renal research group at the Institute of Biomedical Research, Birmingham to focus on kidney metabolism prior to transplantation.

“Kidney metabolism is usually measured by calculating overall concentrations of products – chemical substance formed as a result of a chemical reaction. But, by using a special type of glucose I was able to trace the path of the chain reactions in kidney tissue and so measure metabolism in far greater detail. “I hope that this work will eventually help Dr Ludwig’s team find potential new ways to alter the metabolism of kidneys in storage so that more become viable for transplantation. “I felt a huge sense of achievement at the end of my year. It was a really useful and unique experience and I really appreciate the support I got from Dr Ludwig’s group and from Kidney Research UK. Very few charities offer awards like this or engage you at such an early stage in your career. “As a result of my experiences, I successfully applied for an academic foundation programme which essentially starts you on a career path to do a combination of clinical work and research.”

Call our donation line: 0800 783 2973

OUR HEROES // P14

Teaming up to make a difference John Cleaver enjoys helping people. He sees it as a privilege – his kidney disease doesn’t stop him. So when he was invited to join a team of like-minded people to support kidney patients in his community, he jumped at the opportunity. Ace teamwork: John with some of his fellow ACE Peer Educators

Together with his wife Debbie and nine other volunteers, John was recruited and trained as a Kidney Research UK Peer Educator for the recent Acceptance, Choice and Empowerment (ACE) project. The pilot scheme was set up to improve choice and quality of life for pre-dialysis patients in the West Midlands – particularly those from Black and Minority Ethnic (BAME) backgrounds who have a greater risk of kidney disease and renal failure.

Based on our multi award-wining Peer Educator model, the project was led by Kidney Research UK and the renal team at the Heart of England Foundation Trust (HEFT), and supported by a grant from Baxter Healthcare Ltd. “Our role was to talk to people about the various dialysis options available to them and to give them an insight into what life is like on dialysis,” says John who is on homebased overnight peritoneal dialysis. “We took it in turns to attend clinics with healthcare professionals at the Heartlands Hospital in Birmingham and patients could choose to talk to us if they wanted. We also arranged home visits to help people visualise how dialysis could fit into their own lives.

As a group we can give insights from so many perspectives and we would love to use these to help and support others.

“Special project materials were created to help us explain things pictorially to those who did not speak English and, if necessary, I was able to refer people to other members of my team who could speak their language. “We also organised information days for patients and their families where I would give a presentation on manual daily and overnight peritoneal dialysis and other Peer Educators would talk about haemodialysis. “It was an extremely rewarding experience and I feel proud to have been part of John and Debbie Cleaver

Find out more: www.kidneyresearchuk.org

it – and part of such a fantastic team of volunteers. “Everyone has their own personal needs and lifestyles so it was great to be able to help patients make the care choices that were right for them. It was important to be able to offer some reassurance too and show people that life can go on, because the prospect of starting dialysis can be extremely daunting for everyone concerned.” The 18-month project officially ended last month and attracted extremely positive staff and patient feedback. It is being evaluated using, patient and Peer Educator feedback and focus groups with staff and Peer Educators. Kidney Research UK is currently seeking funding to build on the findings of the pilot and possibly roll out the project to other areas. John would love to see it continue and expand. “It would be great if we could continue as a team and follow patients throughout their journey across the whole spectrum of care,” he says. “Together we’ve experienced it all, including transplants and caring for children on dialysis. I think that’s one of our strengths. We can give insights from so many perspectives and we would love to use these to help and support others.”

YOUR YOURMESSAGES MESSAGES// //P15 P15

Stay in touch 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.

Star Tweets

Star Facebook posts Students brave the cold for 24-hour static cycle to raise funds for @Kidney_Research

8 years post transplant and finished my 50 mile Race for Research #Teamkidney . Jacqui Bellamy

De Montfort Uni DMU @dmuleicester

And the 2017 medal haul has begun. January challenge complete for @Kidney_Research.

Race for Research challenge completed. 50 miles walked in January. 8 years post transplant and 11 months post leukaemia diagnosis.

@el_ho

David Barnes

Kidney_Research celebrates invaluable contribution of #womeninscience, champions #genderequality in the industry marginalia.online/kidneyresearch-uk-puts-the-spotlighton-women-in-science

Well done Alistair Keay and to everyone taking part in the cicuit classes this morning for Kidney Research UK. Amy Clarke

Gloria Lombardi @LOMBARDI_GLORIA

And here’s the proof of my 103+ miles for @Kidney_Research in Jan.

Some of the staff from Yeovil Renal Unit who are taking part in the Race for Research Challenge and walking 50 miles or running 26.2 miles this January. Over £300 raised already.

Rupert Major, @KRUKPhD

Kerry Gilbert

Call our donation line: 0800 783 2973

Every year we have to turn away research applications which we simply can’t 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 Shalabh find non-invasive ways of tackling inherited kidney diseases affecting children.

could help us invest in the next generation of renal researchers, like Sanna, James and Alex. This Guarantee should be detached and retained by the payer

The Direct Debit Guarantee c This 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, let’s fund more life-saving research into kidney disease 1

I would like to give

£3

£7

£15

I would prefer to give £ Month

each Starting

15th or

Quarter

Direct Debit instruction:

Instruction to your Bank or Building Society to pay Direct Debits 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):

Year

30th of M M / Y Y Y Y

Branch sort code:

Bank or Building Society Account No:

–

Please complete your personal details:

–

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:

D D / M M / Y Y Y

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, I am happy for Kidney Research UK to use my contact details to keep in touch about how I can support its work. 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.

Reference Number (for internal use only):

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

Appeal number: 2017-UPDMAR

We will always store your personal details confidentially and securely. Your data will be used for administration, research and analysis purposes. Such data will be shared between the charity and its trading company Kidney Research Enterprises Limited. We will only allow your information to be used by suppliers working on our behalf and we’ll only share it if required to do so by law. It will not be sold to a third party. For more information on our how we store and use personal data, please see our Privacy Policy at www.kidneyresearchuk.org