Update Magazine - Feb 2015 by Kidney Research UK

Update Issue 6 2015

THE MAGAZINE FROM KIDNEY RESEARCH UK

Lucy in the sky with rubies PAGE 06

Enjoy the ride of your life

Food around the world

Hope for the future: Charlotte Waite

PAGE 03

PAGE 08

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Welcome

to the first issue of Update in 2015. I don’t know about you, but we are really looking forward to spring arriving here at head office! We’re looking forward to some warmer weather and being able to get outside more – we’re a little bit fed up with the snow and cold mornings. We’ve had a busy few months, getting ready for Go Purple and World Kidney Day 2015. It’s all very exciting and there is a real buzz in the air. We can’t wait to hear about how you’ll all Go Purple, so make sure you send in your pictures and let us know what you’re doing this year. In this edition of Update we introduce some stunning new jewellery which is helping in the fight against kidney disease. Designed by Lucy Quartermaine, one of the UK’s top contemporary jewellery designers, some of the proceeds will be donated to Kidney Research UK. We interviewed Lucy when she visited some of our researchers in Leeds, and you can read more about her inspiration and her collection on pages 6 and 7. On page 10 you can read more about the vital work of our Peer Educators. They are working hard to bring communities together to help to raise awareness of kidney disease and the need for organ donation. Did you know that so far, their work has encouraged over 2,600 people to sign up to the organ donor register? We also spoke to Charlotte, a Sheffield Undergraduate who has received one our Intercalated Degree Awards for her research. She has been driven by her own experience of kidney disease to study renal medicine. We can only fund students like Charlotte with your continued support, so thank you for your support throughout 2014, and here’s to a fantastic 2015! Enjoy the issue!

Go Purple and save lives Go Purple with us this March and help raise vital funds for lifesaving kidney research. There are lots of ways to get involved, from wearing purple at work, with friends or at school, to purple bake sales, quizzes, and purple-themed competitions. Thrill-seekers can sign up for a 10,000ft tandem parachute jump at our Purple Plunge Big Weekender at Sibson Airfield, near Peterborough on March 7 and 8. Our colourful annual appeal will also promote World Kidney Day on March 12, when doctors, nurses, patients and the public will come together to highlight the growing threat of kidney disease. Last year you helped raise £35,000. This year will be our third year and we want Go Purple to be bigger and better than ever! We’d love to raise twice as much - are you up for the challenge? Order your free Go Purple pack today: Visit: www.kidneyresearchuk.org/gopurple Call: 0845 070 7601 Email: gopurple@kidneyresearchuk.org.uk

Christy’s Go Purple cake

Julie’s Go Purple cupcakes

Nicola Short, Acting Editor

Contributors

Printed by

Lindsay Ledden

Print 4 Business Ltd

Allison Parkinson

Sharlene Greenwood

Kidney Research UK Nene Hall Lynch Wood Park Peterborough PE2 6FZ

Jan Flint Photographers Matthew Roberts Designed by www.adeptdesign.co.uk

Tel: 0845 070 7601 Fax: 0845 604 7211 www.kidneyresearchuk.org

Melanie, one of our Community Champions, held a bake sale at work

Researchers at The University of Glasgow Go Purple and raise £100

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NEWSROUND // P03

£400,000 grant The charity has recently been awarded just under £400,000 from the Health Foundation for a project which focuses on helping people with progressive chronic kidney disease (CKD).

Enjoy the ride of your life Race along a 100-mile route made famous by London 2012 Olympians at our Prudential RideLondon-Surrey 100 2015 cycling challenge. Enjoy the sights of our iconic capital and Surrey’s stunning countryside before finishing in The Mall. Register today at www.kidneyresearchuk.org/ride

Kidney disease is difficult to spot, so patients are sometimes referred late to kidney units to prepare for renal replacement therapy such as dialysis. We know that treatment in this situation is not as successful. Identifying at risk patients earlier helps them receive faster access to treatment and creates opportunities to give them more information to help understand their condition.. The ASSIST-CKD project is a UK-wide extension of previous work in the West Midlands, and will involve approximately 10 renal units and their surrounding GP practices. It is a collaboration between patients, kidney doctors, laboratory scientists and GPs and takes information on laboratory computer systems and generates a graph of kidney function over time for individual patients. Graphs where kidney function is deteriorating are flagged by a laboratory scientist and details are sent to the GP with a prompt that further action may be needed, together with educational material on kidney disease. This is a really vital initiative identifying those individuals with CKD who are most at risk and referring them to secondary care at the right time - for the right treatment in the right care setting.

Another marvellous effort from The Movers and Shakers

Meeting the Minister Kidney Research UK has developed a successful Peer Educator (PE) model that trains members of the local Black, Asian and other minority ethnic (BAME) community to talk to their peers about kidney health and organ donation. Jane Ellison, Under Secretary of State for Health, invited our Peer Educators to meet her at the Department of Health in London following the launch of the project back in June. Here’s our Peer Educator team with the Minister in her office in Whitehall.

Cheque this out: The Movers and Shakers with our amazing cheque for £44,500

We are the grateful recipients of a £44,500 donation, thanks to the amazing efforts of The Movers and Shakers – a 10-strong all-woman fundraising committee based in Cheshire. The money was raised through a special gala dinner in aid of Kidney Research UK and The Cure Parkinson’s Trust. The event was supported by adventurer, author and TV presenter Bear Grylls and raised a grand total of £89,000. Both causes are very close to the hearts of the committee members because two of their husbands have kidney disease and Parkinson’s. Call our donation line: 0800 783 2973 KR8513 - Update Spring 2015 v3 REPRO.indd 3

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HOW YOUR MONEY’S HELPED // P04

We’re

sol ing the mysteries of kidney disease Scientists at Manchester University and Central Manchester Healthcare NHS Trust have made a significant breakthrough in the fight against membranous nephropathy (MN) – a rare kidney disease which can often lead to kidney failure. The Manchester Team from left to right: Edward Mckenzie, Rachel Lennon, Maryline Fresquet, Paul Brenchley and Thomas Jowitt.

Your support has enabled us to invest £157,000 in an ongoing research project, led by Professor Paul Brenchley and Dr Rachel Lennon, which could pave the way for new and more effective treatments for MN.

Antibodies (powerful molecules which are usually produced to fight off infection) attack the PLA2R proteins in the kidney and the resulting damage causes proteinuria (protein in the urine) and kidney disease.

A landmark 2009 US study first highlighted the importance of a protein called PLA2R in the development of MN. It found that the condition occurs when a disturbance of the immune system causes the body to attack itself.

Building on this knowledge, the Manchester team have made two key new discoveries: c They have pinpointed the exact location and structure in PLA2R where antibodies attack the protein to cause MN c Using amino acids, they have been able to chemically make part of the structure. This peptide structure can act as a decoy and stop the anti-PLA2R autoantibodies attacking the PLA2R protein

Dr Lennon explains: “We know that 80% of adults with membranous nephropathy (MN) will be producing antibodies against PLA2R so we wanted to discover exactly how the antibodies might bind onto the protein and cause damage. “To do this, we first needed to know the exact structure of the protein so we built a three dimensional model which looks very much like the Greek symbol for Pi (π).

We may be able to use this decoy peptide as a drug to block the anti-PLA2R antibodies from attacking the kidney or we could use the peptide to remove anti-PLA2R antibodies from the body. Dr Rachel Lennon

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HOW YOUR MONEY’S HELPED // P05

The next step

The Manchester team will use the next 12 months to develop their research findings further by testing the protective power of this peptide in experimental models of MN.

Professor Paul Brenchley is exploring potential partnership opportunities and future treatment developments with manufacturers of immunoadsorbent columns. Prof Brenchley says: “If we combine our knowledge of this peptide structure with the expertise that industry has in manufacturing bloodcompatible columns, such a collaboration could have a new treatment available in two or three years once it has passed all the regulatory procedures.”

Professor Paul Brenchley

“Our research should eventually lead to the development of a specific targeted treatment for patients with MN that will reduce the severity of the condition, prevent progression to kidney failure, and reduce the risk to patients from existing immunosuppressive treatment,” says Rachel.

Membranous nephropathy – the facts c Membranous nephropathy (MN) damages the filtering units of the kidney (the glomeruli), causing large amounts of protein to leak from the blood into the urine (proteinuria).

“This enabled us to locate the precise region of the PLA2R protein where antibodies attack it to cause MN.”

PLA2R structure

“We discovered that we could stop the antibodies from binding to the PLA2R protein by making a small soluble replica of the binding site so that the antibodies bind (attack) this decoy peptide and not the real protein”.

“This opens up possibilities for two new treatments for MN patients. We may be able to use this decoy peptide as a drug to block the anti-PLA2R antibodies from attacking the kidney or we could use the peptide to remove anti-PLA2R antibodies from the body. We may be able to do this by passing a patient’s blood through a special peptide-coated column using an immunoadsorption machine. The column would only filter out the damaging anti-PLA2R antibodies so that they couldn’t bind to and damage the kidney.”

c It is estimated that 8,400 people have the condition in the UK with 700 new cases a year. Worldwide the total number could be a third of a million. c The disease is known to be to be autoimmune – where damage is caused by the body’s own immune system. c There is currently no cure. The severity of the disease can be slowed down and controlled in some patients by using immunosuppressive drugs but 25% of patients will lose their kidney function and need dialysis or a transplant. The disease can come back in the transplant in a third of patients.

We need your help We’re forced to turn down four out of every five potential new projects because we don’t have the funds to support them. By leaving us a gift in your Will you can help ensure that years from now, our researchers will find cures that could save and transform lives, young and old. To find out more about leaving a legacy, please email legacies@kidneyresearchuk.org or call: 0845 612 1226 If you want to contribute towards research that could help save lives, please make a donation using the enclosed form, or visit: www.kidneyresearchuk.org/donate

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THE BIG INTERVIEW // P06

Chris, Lucy and Becky Quartermaine visiting our researchers at Leeds University

Lucy in the sky with rubies Lucy Quartermaine is one of the UK’s top contemporary jewellery designers. Her award winning and playful LucyQ designs are popular with many celebrities and are available from over 130 of the UK’s finest jewellers and galleries, as well as online. Kidney research is a cause close to Lucy’s heart. Lucy’s sister Becky received a kidney transplant from their dad Chris in 2013. Lucy is now preparing to launch a new range – a range of kidney shaped silver jewellery adorned with rubies – and will donate some of the profits to Kidney Research UK. Lucy, Becky and dad Chris recently visited Leeds University with us, to hear about some of our research projects, and we caught up with them over a spot of lunch.

The jewellery is the perfect way to mark something special that’s happened to somebody, like someone who has donated or received a kidney. Lucy

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THE BIG INTERVIEW // P07

We hope you’re enjoying our research day here at the University of Leeds. What has been the highlight for you so far? Lucy: For me it was going on a tour around the labs and seeing all the equipment.

Did you have to start dialysis?

Becky: I got down to 8% kidney function before I started dialysis, and I was on it for about 8 months. I did evening dialysis and I’m self-employed, so I continued to work throughout. But it was hard work and I found it very painful. And it’s boring! I watched every single season of Desperate Housewives while I was on dialysis, and that kept me going!

Lucy: There is a possibility of Becky needing another transplant in the future, and of course I think about donating. Dad’s come out of it with flying colours. I’ve just got to make sure I keep my kidneys healthy in case she does need one!

Chris, how are you now feeling after donating a kidney to Becky?

Chris: I’m fine! It took about two months to get back to normal again, but it was fairly straightforward. I was in hospital for about six days after the operation, but that was because I’d developed an ear infection after the surgery. Lucy Quartermaine

Becky: Looking through the microscope in the lab and getting to see kidney cells. And learning about the research that’s going on behind the scenes was really interesting as well.

I’ll have annual check-ups for the rest of my life, where my GP will check my blood pressure and I’ll have to give a urine sample. But that’s not so bad!

How did you all feel on the day of the operations?

Becky, it’s been just under 18 months since you received a kidney from your dad. How has it changed your life?

Chris: It was actually a cancellation that set the date. We were expecting the transplant to happen in the autumn, and then one day in June the hospital phoned and said ‘how about next Friday?’ which was a surprise.

Becky: I basically wasn’t functioning. My legs had swollen up because of water retention and I could barely walk. I felt sick a lot and had horrendous lethargy. But because kidney failure is such a slow process, I didn’t really realise how ill I was.

Becky: We went in to hospital the night before our operations, and it was so nerve-wracking. Dad went down to theatre first but he didn’t show that he was nervous. I think Mum found it quite hard – she had her daughter and her husband going in for major surgery on the same day.

When you’re ill, normal is taken away from you. Suddenly silly things like going to the shops or the cinema, or taking your kids out, aren’t possible. I couldn’t do those things because I felt so ill. The difference between then and now is dramatic – I’m pretty much a normal functioning person again.

When I was 26 I ran up the stairs and nearly fainted, so I went to the doctor. The nurse told me my blood pressure was through the roof so I had a kidney scan, and discovered my kidneys were functioning at 35%. It came as a huge shock.

And what would you say to people thinking of donating?

Chris: Don’t hesitate. I know there are people who give kidneys altruistically – I actually met someone who had donated a kidney to a stranger as he said it was on his bucket list!

Becky: I think anyone who donates is a hero. They have nothing to gain and lots to lose. I am very lucky to have my own hero and I want to make sure that everyone knows it.

Lucy, as a result of your family’s experiences with kidney disease, you’ve designed a range of jewellery for Kidney Research UK. Can you tell us a little bit about that? Lucy: My brand is becoming quite well known now, and this is the perfect thing I can do to help. Hopefully the range will help raise awareness of the charity, and help fund some of the research that’s going on behind the scenes. We’ve only got 50 pieces of each design, so it’s quite special. I hope they are pieces that people will hold onto and pass on through generations.

You told us earlier today that you’ve always been quite arty. What made you want to be a jewellery designer? Lucy: My gran was a jewellery designer and I was always intrigued by it. She had a little pot of buttons and I’d create all sorts of jewellery using them. I’ve always known it’s what I wanted to do.

What kind of kidney disease did you have?

Becky: I was born with a condition called Sacral Agenesis – which means my tail bone wasn’t formed correctly in the womb. It resulted in a series of life saving operations as a young child. People with the condition can be at risk of kidney failure as the kidneys can be malformed – I think my kidneys were slightly smaller than normal.

Lucy: I felt a bit helpless as there wasn’t much I could do. I just tried to be there for Becky and Dad as much as possible.

Becky Quartermaine

I cannot tell you how incredible it feels. It was, and still is, very surreal to know I’ve got one of Dad’s kidneys. Becky

Where do you get your inspiration from?

Lucy: Anything and everything can inspire me. My family inspire me a lot. I have a collection called the ‘Splash’ collection, and the inspiration for that came from taking my children swimming, and just looking at the water and seeing its movement. Lucy’s jewellery will be available later this year. See more of Lucy’s designs here: www.lucyqdesigns.co.uk

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HEALTH & LIFESTYLE // P08

Food around the

w rld Food always tastes better when someone else cooks it – don’t you agree? Maybe that’s why, according to the Evening Standard, Londoners dine out four times a week. With so many options available to us, how can we make dining out as healthy as possible? We asked Jan Flint, renal dietician, for her thoughts…

If you’re going out for some traditional British pub grub, then boiled veg and potatoes are the way to go! Avoid gravy though as this can be salty. If you want some chips and are following a potassium restriction choose thicker cut – due to the larger surface area they are lower in potassium. And remember to avoid putting salt on them!

Italian Ciabatta will be high in salt, as will be the dough that pizzas are made from. So try and go for a thin based option. If you’re on a potassium restriction, ask for just a small amount of tomato topping on your pizza. And what about trying a risotto or some chicken or fish instead?

Jan Flint, renal dietitian at the Royal Free London NHS foundation trust

USA American, diner-style food is large! Lots of fries and large portions. If you’re going to an American restaurant, avoid deep fried mushrooms due to potassium content – onion rings would be a better option. And if you are going for a burger, then have it plain without things like bacon and cheese.

South American If you’re having steak, limit your portions to 100-150g per meal. Again, opt for thick cut chips, and avoid the sauces that go with the meat as likely to be high in salt.

Spain Spanish food is often high in salt especially if it’s got chorizo in it. Paella is a good option, but try to eat less of the vegetables if you’re on a potassium restriction and less seafood if you’re on a salt restriction.

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HEALTH & LIFESTYLE // P09

Exercise Q&A If you’re on a restricted diet and you’re going out to eat, try and ensure you eat lower salt or potassium options during the rest of the day.

Chinese Although it’s tasty, Chinese food is very salty due to use of soy sauce and MSG. So to avoid lots of salt, try having a dish with plain boiled rice or noodles rather than one that has other things added to it.

Japanese Again Japanese food can be very salty from use of soya sauce. So try to have sushi without adding soy sauce on the side and have it with ginger instead for flavour.

Sharlene Greenwood, lead renal physiotherapist at Kings College London, answers your exercise questions. I’ve had a bit of a break from exercising over Christmas and the New Year. How can I ease myself back in without too much of a shock? It’s easy to get out of the habit of doing any exercise during the Christmas break but once you start again, you will feel much better. Make a commitment to putting on your exercise kit and doing something physical that you enjoy. It might be taking a brisk walk around the park or going for a swim. Remember to do some gentle stretching once you are warmed up, and after any activity to prevent injuries. Once you get into the habit of doing some physical activity, you need to keep challenging yourself to do a bit more each week. Our bodies are really clever and adapt quite quickly. It’s still a bit gloomy and cold outside and that puts me off taking my regular walks. What kind of exercises could I do at home?

Indian Curry is a British favourite – apparently the nation’s favourite curry is a Jalfrezi! But, curries can be high in fat and potassium if they are made with tomatoes or milk. So, try having a tandoori mixed grill which is meat cooked using herbs and spices without a sauce.

Recipes Don’t forget if you have a favourite 'kidney friendly’ recipe, you can send it in to us and you might be featured in the next issue of Update! Just e-mail your recipe to: update@kidneyresearchuk.org

There are a number of work-out dvds which you can do at home. Have a look at council websites too; there are often indoor community exercise programmes on offer. Some simple strengthening exercises you can do at home include: sit to stands from a chair (count how many you can do in 60 seconds and try and add one more each time), going up and down stairs, and squats against the wall. Remember to do some stretches once you are warmed up and after activity at home too.

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FOCUS ON... // P10

Birmingham Peer Educators in action

Glasgow Peer Educators

Bringing communities together to save lives A dedicated group of people, called Peer Educators, are helping to save lives across the UK by raising awareness of the increased risk of kidney disease and the urgent need for organ donation in Black, Asian and minority ethnic (BAME) communities.

Recruited and trained by us, the Peer Educators work closely with individuals, families, community groups and faith groups in their own communities. They offer practical help and advice, explaining the reasons for the increased risk and suggesting lifestyle changes that could help to prevent disease. They also outline treatments available for people with kidney failure and discuss organ donation, challenging some of the myths surrounding the issue and highlighting the huge shortage of compatible donors in their communities. Their work is vital because Kidney failure is up to five times more common in people from Black, Asian and minority ethnic communities. People also have to wait up to twice as long for a transplant due to a shortage of BAME organ donors. We have run highly successful Peer Educator projects across the UK for the past ten years. They have been used right across the kidney disease spectrum to cover issues including early detection and prevention, diabetes management, support for carers, end of life support and organ donation.

Through them, we have been able to offer advice and support to many thousands of people from BAME communities and encouraged over 2,600 people from these groups to join the NHS Organ Donor Register. We are currently running two Peer Educator projects in Birmingham and west Scotland.

Our Birmingham project Our Birmingham project is focusing on raising awareness of the important need for organ, blood and bone marrow donation within the city’s Pakistani Muslim community. Six Peer Educators, including junior doctor Yassar Mustafa from Birmingham, have been working with Birmingham’s Pakistani Muslim community to help explore the beliefs that can act as a barrier to donation. The two year project, which was officially launched last June, also involves the National BAME Transplant Alliance (NBTA) and is being funded by the Department of Health. And, to date, it has resulted in 95 people signing up to the NHS Organ Donor Register and a further 319 people signing up as

potential bone marrow donors. A further 288 people have also signed up to be potential blood donors, pending the usual medical assessments. The project received a major boost when an Imam from the city’s influential Green Lane Mosque provided a clear endorsement for organ donation within Islam. This was the first highly influential step in encouraging the community to donate and resulted in an overwhelming and unprecedented response. It is also actively supported by The Lord Mayor of Birmingham, Councillor Shafique Shah, who invites Peer Educators to promote their work at all of his official engagements.

Our Scottish project More than 226 people have signed up to the NHS Organ Donor Register, thanks to the efforts of eight Peer Educators – including Swaran and Surjit Chowdhary. They are at the forefront of our twoyear initiative, funded by the Scottish Government, to increase the number of potential South Asian donors in the west of Scotland.

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FOCUS ON... // P11

The shortage of donors from Black, Asian and Minority Ethnic communities is severe, so it’s vital we continue to engage with people to explore the beliefs that can act as a barrier to donation. Neerja Jain

Since their training last June, our Peer Educators have spoken to thousands of people about organ donation in many locations, including Gurdwaras (Sikh places of worship) in Edinburgh and Glasgow, Hindu temples in Glasgow, the annual multicultural Mela festivals in both cities and at our Glasgow Bridges Walk. The project is proving to be our most successful so far. In fact, over one weekend alone Swaran single-handedly managed to get 127 people signed up to the NHS Organ Donor Register. “The shortage of donors from Black, Asian and Minority Ethnic communities is severe, so it’s vital we continue to engage with people to explore the beliefs that can act as a barrier to donation,” says our Health Improvement Projects Manager, Neerja Jain.

CASE STUDY Swaran and Surjit Chowdhary Dynamic couple Swaran and Surjit Chowdhary are a driving force behind our Scottish Peer Educator programme. With their long and distinguished history of charitable work and extensive links in the Sikh community, they and their fellow peer educators are raising the issue of organ donation with a record number of people.

“The passion of our peer educators is really helping to move this work forward considerably. Their amazing drive, enthusiasm and physical and mental energy is truly amazing. I am so proud of them and inspired by them –they are really making a difference.” c Diabetes and high blood pressure are the two leading causes of kidney failure in people from Black, Asian and minority ethnic communities c Asian people with diabetes are 10 times more likely to suffer from kidney failure compared to Caucasians c Although just 11 per cent of the UK population is made up of people from BAME communities, this same group accounts for 32 % of all patients on the NHS’s kidney transplant waiting list c In general, 30% of families refuse to let organs be taken from loved ones for transplantation in an intensive care setting. However, this figure rises to 70% for BAME families c A kidney from someone of the same ethnic group is likely to lead to a better matched organ, making it available sooner

Team Purple - Mr and Mrs Chowdhary - centre - with fellow Peer Educators at the Edinburgh Mela 2014

“As a British Asian, the supply vs demand problem of donor kidneys came as a shocking revelation to me,” says Swaran. “Initially the prospect of approaching members of the public was rather daunting. But with the support of my husband and the confidence gained from being able to answer fundamental questions and help people make informed decisions, has given me a great sense of pride and accomplishment.” “We have been humbled by the interest shown by members of our community,” adds Surjit “And we are now regularly seeing commitments made of 90-100 people signing up to the NHS Organ Donor Register with each event that we hold.”

Yassar Mustafa Trainee anaesthetist Yassar Mustafa is a Peer Educator for our Birmingham project. He has participated in many organ retrieval operations and has also worked in a kidney transplant department. “I wanted to get involved in the project because, being an Asian doctor, who is Muslim, I felt I had a better insight into organ transplantation than many other people in the Muslim community and could help to break down any barriers,” says Yassar. “I’ve really enjoyed engaging with some of the major mosques in the city and I’ve been really impressed with the amount of interest in this subject. Generally people want to help but they need religious guidance. This is a grey area but Muslim scholars around the UK are currently looking at the issue of organ donation to try to reach some sort of consensus, so hopefully there is a solution in the pipeline. “For me, the watershed moment for organ donation in the Muslim community will happen when the Muslim scholars are not holding up various rulings in support of organ donation but when they are holding up their organ donor cards themselves.”

Yassar Mustafa

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09/02/2015 17:14:26

RESEARCH ROUND UP // P12

Research round up – innovative projects funded by you

World-renowned scientists, supported by you, are fighting kidney disease and its many associated conditions on all fronts. Their research will help to make a real difference to the lives of people with kidney disease in the UK and abroad.

New study could find a way to stop the growth of kidney cysts We’re funding an exciting new study which aims to discover whether it is possible to effectively block molecules that cause kidney cysts to form and grow. The £191,321 research project will focus on cyclic AMP (cAMP) – a molecule that controls the rate at which cysts can expand and grow in Autosomal Dominant Polycystic Kidney Disease (ADPKD). ADPKD is the most common inherited kidney condition which causes kidney failure. In this disease, cysts start to develop in the kidneys from birth and grow progressively to eventually destroy the kidney.

Around one in every 1,000 people is born with ADPKD and there are currently no ways to predict, halt or slow the disease. It is estimated that around 12 million people world-wide suffer from ADPKD. cAMP molecules are activated when messages are sent by hormone-like compounds such as prostaglandins. But recently developed drugs – known as prostaglandin receptor blockers – are now able to stop this activation from occurring by literally blocking these messages from being transmitted. Devised to treat a wide range of conditions including pain and asthma, they have not yet been used to treat kidney disease. Over the next three years Professor Albert Ong and his team from the University of Sheffield’s Academic Nephrology Unit will test these new drugs on cells derived from patients with ADPKD and on mice genetically programmed to develop the disease. They will see if blocking the action of prostaglandins and therefore lowering cAMP in polycystic kidneys can slow its progression or growth. This project will hopefully set the stage for human trials and the eventual development of a new effective treatment for ADPKD.

T urn to page 14 to find out about another exciting project involving Professor Ong.

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RESEARCH ROUND UP // P13

New study could help to prevent heart damage caused by kidney disease

New study hopes to help kidney patients with diabetes

We are funding a three-year project to investigate how increased phosphate levels can cause heart and blood vessel damage in some patients with kidney disease.

They aim to add phosphate to blood vessel cells cultured in the laboratory to see if this triggers microparticle formation, how this occurs and how this may be prevented.

A hormone called endothelin-1 will be at the centre of a three-year study which aims to investigate the causes of salt removal problems in patients with diabetes.

Heart disease is the commonest cause of death in kidney patients in the UK, partly because of increased blood clotting.

The team will also change blood phosphate levels in rats with kidney disease to see whether microparticle numbers change. They will also investigate whether the genes responsible for activating microparticle formation in the rats’ blood vessel cells act in the same way as those found in the laboratory cultured cells.

In kidney disease, particles called microparticles break off the surface of blood vessels and increase clotting. Professor Nigel Brunskill and his team at the University of Leicester believe that a high concentration of phosphate in patients’ blood may be responsible for increasing microparticle formation. This is a new idea so we have given them a £175,128 research grant to find out more.

They hope their research will lead to new ideas for treating cardiovascular disease in patients with kidney disease.

The condition causes the kidneys to stop working properly, leading to water and salt retention in the body. This causes high blood pressure and consequently leads to kidney and blood vessel damage. Diabetes is the single largest cause of kidney failure in the UK. Over 3.2 million people in the UK have the condition and as many as 40% of those are likely to develop kidney disease. Worldwide, diabetes affects 170 million people and this figure is set to double by 2030. We have given a £124,372 research grant to Dr Matthew Bailey and his team from the Centre for Cardiovascular Science at the University of Edinburgh so they can find out why the kidney can’t efficiently remove salt from the body in diabetes, and how this affects blood pressure. They believe that the problem is related to irregularities in endothelin-1 a hormone which affects blood vessels and the filters in the kidneys. However new hormone-blocking drugs may provide a solution. They aim to test the drug on rats with diabetes in order to better understand the influence of the hormone and these drugs on kidney function and blood pressure.

An electron micrograph image of microparticles.

This project, which complements a large ongoing clinical study of the drugs, could lead to better outcomes for diabetic patients by possibly helping to prevent them from developing kidney disease.

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FOCUS ON... // P14

Hope for the future: Supporting the next generation of renal researchers

Sheffield undergraduate Charlotte Waite has a passion for renal medicine. Driven by her own experience of kidney disease, Charlotte Waite has taken time out of her medical degree to join Sheffield University’s world-renowned Kidney Genetics Group to work on an important clinical research project.

“Other risk factors have to be involved – maybe things like urine infections, environmental exposure to toxins or other faulty genes. So this project aims to look at all the possible risk factors in order to get a better understanding of the complexities of the disease.

We are funding her year-long research studies – known as an Intercalated Degree – as part of our commitment to developing more kidney researchers for the future.

“I hope to produce a reliable tool that will help to classify patients by the rate at which their disease is likely to develop over time. It could then be used to determine whether people are low risk and need minimal monitoring or whether they are in a higher risk group that will require more intense monitoring and treatment, once this becomes available.

And this year, thanks to your continued support, we have been able to invest £70,000 to fund 14 medical students around the UK – an increase from 10 in the previous three years, and an extra investment of £20,000. Charlotte (22) aims to develop a risk model for patients with autosomal dominant polycystic kidney disease (ADPKD) – the most commonly inherited form of kidney disease which affects up to12 million people worldwide. “It’s a very variable disease in terms of how it affects people and its rate of progression,” explains Charlotte. Even members of the same family, who share the same genetic mutation that makes them predisposed to having the condition, can be affected differently.

“As part of this project, I’ll be interviewing people whose kidneys have failed as a result of their ADPKD and who are now on dialysis or have had transplants. I’ll then compare and contrast their details with data from patients whose kidneys are still functioning and who are attending my supervisor Prof Albert Ong’s ADPKD clinic at the Sheffield Kidney Institute.”

Charlotte had membranoproliferative glomerulonephritis (MPGN) as a child, a condition which causes the body’s immune system to attack the kidneys. “I’ve had dialysis and a transplant so I really wanted to see the research side and contribute to it as a way of giving something back, says Charlotte. “This is a fabulous opportunity for me because you get to see medicine from a very different side than you’d see in a ward. “I’d love to eventually do something that incorporates renal medicine in some way. I find it fascinating.” Charlotte is the third medical student to receive one of our £5,000 Intercalated Degree grants to work with Professor Ong, Professor of Renal Medicine and Head of the Academic Unit of Nephrology at the University of Sheffield. “Providing this funding enables students to be financially able to take a year out of their degree to experience renal research first hand, says Professor Ong. “This is a very important initiative for encouraging the next generation of students to consider nephrology and kidney research as a career option.”

It’s a very variable disease in terms of how it affects people and its rate of progression.

Find out more: www.kidneyresearchuk.org KR8513 - Update Spring 2015 v3 REPRO.indd 14

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YOUR MESSAGES // 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. If you’d like to send us a letter, the address is: Update Magazine, Kidney Research UK, Nene Hall, Lynch Wood Park, Peterborough PE2 6FZ or e-mail: update@kidneyresearchuk.org. Dear Kidney Research UK In 1989 my daughter was diagnosed with kidney failure, so I gave her one of my kidneys. We had our operation on October 25th 1989. So to celebrate 25 years, we had a party on this date.

Star Tweets Finished my run this morning then came into work and the first person I served is also raising money for @Kidney_Research #amazing .

R STA R! TE T E L

Robyn Alice Durrant @DurrantR (05.01.14)

My daughter attends a London hospital each year to be checked over for ongoing research. Soon after our op we had a large article in Woman’s Own, and then we appeared on live TV!

Two months since my #kidney transplant and still trying to get used to urinating like a normal person @Kidney_Research

I enclose a photo of us at our party on the 25th October 2014 – you may use this if you want to, to inspire others. I also enclose a cheque for £250 donated at our party.

The Sharminator @skinny_lad (08.01.15)

Yours faithfully, Basil Clark

Star Facebook posts

My favourite moment of 2014 (at the London Bridges Walk)! Wishing everyone at Kidney Research UK and all fellow patients a happy and healthy 2015... Rachael Camidge (31.12.14)

Off to Exeter Shop with some goodies! Lots of puzzles, games & clothes... Hopefully in time for the Christmas shoppers! Fay Venner (28.10.14)

Health questions answered Q A “I’m on haemodialysis and I don’t know if it’s right for me. What should I do?”

Firstly, talk to the team at your dialysis unit who will be able to give you an overview of the different types of dialysis available. Your unit may also have home dialysis equipment in the unit, which they use to train patients who are going to start home dialysis. You may be able to have a look at the equipment you’ll need too, which might help you come to a decision. Kidney Research UK recently developed a Dialysis Decision Aid booklet, designed to give information on each different dialysis treatment option available, and enable patients to think about which treatment might fit best into their lives.

You can find out more or request a copy by visiting www.kidneyresearchuk.org/DialysisDecisionAid or by calling our Supporter Care team on: 0845 070 7601

Call our donation line: 0800 783 2973 KR8513 - Update Spring 2015 v3 REPRO.indd 15

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Go Purple and save lives Go Purple this March and help raise vital funds in our fight against kidney disease

Get involved We need you to wear purple, our signature colour, and hold purple themed activities throughout March.

To help you Go Purple, we’ve produced a fundraising pack which contains: c c c c c c

Balloons Posters Stickers A collection box Useful kidney health information A fantastic guide packed full of fundraising ideas with a purple theme!

Anyone can get involved and it is an ideal fundraiser for you to do in your workplace, school or with friends and family. Since 2013 Go Purple has raised over £60,000. In 2015, we need your help to raise a further £40,000 – so let’s be bigger, better, and even more purple!

Go Purple is simple… c c c

Register for your free Go Purple fundraising pack Pick a date in March and decide how you will Go Purple Involve your friends, family and work colleagues to take part, and raise as much money as possible so we can continue to fund the very best research into kidney disease

So, go dress up, go bake, go collect and go fundraise! Visit:

www.kidneyresearchuk.org/gopurple

Don’t forget to send photos of your events to: gopurple@kidneyresearchuk.org we’d love to see what you got up to. Registered charity no. 252892. Registered Scottish charity no. SC039245 Registered company no. 905963 Registered in England and Scotland Registered Office: Nene Hall, Lynch Wood Park, Peterborough PE2 6FZ.

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