Update Magazine November 2014

Update Issue 5 2014

THE MAGAZINE FROM KIDNEY RESEARCH UK

Turning research into new life-saving treatments Professor Tim Goodship talks about his ground breaking work

PAGE 06

Looking for ways to fight kidney disease from within

Christmas gift list

Living well on dialysis

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PAGE 10

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Welcome

to issue 5 of Update Magazine What a fantastic year! I can’t quite believe we’re nearing the end of it - time has flown by.

Thank you so much for all your support this year. In 2014/2015, we’ll be investing a record £5.1million into vital renal research, which wouldn’t be possible without your continued support.

This edition of Update talks about how years of meticulous research into the causes of a rare kidney disease has led to the development of a new life-saving treatment. This is fantastic news for the kidney community, and proof that investment in research can have real life benefits for patients. We’ve also included a roundup of innovative projects funded by you, at the University of Leicester.

If you flick to page 8, you will find some great gift ideas that we hope will inspire you during your Christmas shopping sprees. It’s not always easy, is it?

Then on page 10 we hear from Jan Cooper, one of our Trustees. Jan is featured in our new Dialysis Choices DVD, and tells us about how she fits dialysis into her busy life.

What an eventful year!

Thousands of dedicated supporters have run, walked, cycled, trekked and skydived to raise vital funds for kidney research this year.

Thanks to their amazing efforts we are well on the way to raising £700,000 to help fund vital research into kidney disease.

Our London Bridges Walk attracted over 1,000 participants and around 250 people donned their trainers to run our five running challenges. Others braved new activities like the muddy Chepstow Stampede or raised money for us at other events.

Other highlights included our second annual Glasgow Bridges Walk, our Ben Nevis Challenge and exhilarating bike rides at home and abroad.

We are always updating our events programme to make sure there’s something there for everyone, so please check out our website regularly. For more information visit www.kidneyresearchuk.org/get-involved

Thank you again for your continued support.

I hope you enjoy this edition of Update, and from everyone at Kidney Research UK, Happy Christmas!

Nicola Short, Acting Editor

Our Barcelona 2 Nice cyclists

Contributors Lindsay Ledden

Printed by

Allison Parkinson

Print 4 Business Ltd

Noel Hurley

Contact us

Chris Coates

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

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

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

Walkers at the London Bridges Walk

A runner takes on the Chepstow Stampede

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NEWSROUND // P03

Researchers head to Bristol for Fellows Day 2014

Remembering David

On 8 and 9 of September, over 100 doctors, scientists and medical students attended Kidney Research UK’s annual conference – Fellows Day – which was held this year in Bristol.

The two-day event gives delegates a chance to present their work, network with peers, explore future career development and listen to guest lectures.

A memorial event was recently held in the Dorchester Library at the Royal College of Physicians, London to honour the life and work of distinguished nephrologist Professor David Kerr, who died earlier this year.

This year delegates heard fantastic talks from keynote speakers – Dr Norman Rosenblum from the University of Toronto and Professor Lloyd Cantley from Yale School of Medicine.

They also enjoyed presentations from many of the researchers we have supported.

David was a Past President of the Renal Association, founder member and Past President of the Association of European Kidney Specialists (ERA-EDTA) and a Trustee of Kidney Research UK, serving as Chair when we were known as the National Kidney Research Fund.

Elaine Davies from Kidney Research UK commented: “This year was our 14th Fellows Day, and it continues to go from strength to strength. Every year proves to be interesting and extremely inspiring.”

To find out more, visit www.kidneyresearchuk.org/fellowsday2014

Mark’s

BIG

In May, Mark had his first haircut in 10 years, and raised £4,000 in the process!

Mark has Polycystic Kidney Disease and had a kidney transplant almost two years ago, and is doing well. The money Mark raised will be split between two charities, with Kidney Research UK receiving half.

Asian communities come together to save lives More than 130 Scottish people from South Asian communities signed up to the NHS Organ Donor Register this summer, thanks to the efforts of a group of trained volunteers, known as Peer Educators.

They are part of our new two-year initiative to increase the number of potential South Asian donors in the west of Scotland.

In just the first few months of the project they’ve managed to speak to well over 1,000 people about organ donation at the Edinburgh Gurdwara (the city’s Sikh place of worship), the annual multicultural Mela festivals in Glasgow and Edinburgh and at our Glasgow Bridges Walk.

We will be introducing a new senior clinical fellowship to honour David’s memory. In keeping with his passion for developing careers in nephrology, it will be our most senior career grant.

Countdown to Christmas Join us at our annual Advent Procession at Peterborough Cathedral on December 1.

Enjoy readings and sacred choral music in the stunning surroundings of the ancient Cathedral. Take time to reflect on the three million people in the UK at risk of chronic kidney disease and help us to celebrate the research projects that are saving and transforming lives.

To attend or make a donation, please call 0845 070 7601 or email enquiries@kidneyresearchuk.org

Peer Educators at the Edinburgh Mela

And for a great selection of Christmas cards, gift wrap and festive gift ideas look no further than our online shop www.kidneyresearchuk.org/shop

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HOW YOUR MONEY’S HELPED // P04

Looking for ways to fight kidney disease from within A naturally-occurring sugar called sialic acid is at the centre of an exciting study which could eventually lead to new ways of prolonging kidney function and reducing kidney damage.

Dr Izabella Pawluczyk

You are helping us to invest over £100,000 in a two-year research project which is investigating the effects of giving sialic acid (sugar) to rats with proteinuria – a condition characterised by abnormal amounts of protein in urine which is often a sign of kidney disease.

The project is being led by Dr Izabella Pawluczyk, from the Department of Infection, Immunity and Inflammation at the University of Leicester.

She explains: “Healthy kidneys clean blood to filter out waste, which leaves the body as urine. Cells called podocytes are part of the kidney’s filters, and have proteins on their surface which contain sugars called sialic acid.

“The surface proteins help maintain the structure of the podocyte, so it can efficiently

filter blood. But in some kidney diseases, the amount of sialic acid in the podocyte is significantly reduced. This affects the structure of the podocyte, damages the filters and causes proteinuria.

“Our research aims to discover whether giving sialic acid to rats with proteinuria can improve their kidney function.”

Sialic acid occurs naturally in the body and has low toxicity. It is found in most tissues with particularly high concentrations in the brain, kidney and human breast milk.

“We believe that sialic acid may play an important role in keeping kidney filters open,” says Izabella. “It may also have important antioxidant qualities which means it may have the ability to prevent or slow down cell damage.”

“To test this theory we treated rats with proteinuria via their drinking water. Rats were given either sialic acid, N-acetyl mannosamine (a sugar involved in the formation of sialic acid), apocynin (an antioxidant drug) or plain tap water.”

We are now studying the rats’ kidneys and urine, looking for evidence of reduced proteinuria and improved kidney function.

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HOW YOUR MONEY’S HELPED // P05

HEALTHY PODOCYTES

Sialic acid fact file

Transmission electron micrographs

c S ialic Acid is a naturally occurring sugar which is also known as N-Acetylneuraminic acid or Neu5Ac. c I t was named from the Greek Sialos for saliva and is responsible for giving the slippery feel to saliva and the mucus that coats the body’s organs. c S ialic acid is found throughout the body but is especially concentrated in the brain, kidneys and in breast milk. It is also present in spinal fluid, saliva, urine and amniotic fluid.

Scanning electron micrographs

DISEASED PODOCYTES

c I t can help to fight bacteria, viruses, and other harmful microbes by affecting the flow of mucus. It may also play a key role in brain development and learning, could help to reduce the risk of kidney stone formation and be instrumental in lowering harmful cholesterol levels.

Transmission electron micrographs

The next step

Sialic acid (N-acetyl neuraminic acid) The chemical structure of sialic acid

If results from this study suggest that sialic acid could be used as a therapy for treating kidney disease and proteinuria, Izabella hopes to try giving the sugar to rats with diabetic nephropathy, the leading cause of end stage renal disease.

“One of the first signs of this disease in diabetics is protein in the urine,” says Izabella. “If the results look promising, this will give us a strong case to start clinical trials in patients presenting with proteinuria in early stage kidney disease.

“This research is still in its infancy but it could eventually lead to patients being able to take sialic acid supplements in drink or tablet form.”

Scanning electron micrographs

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

Turning research into new life-saving treatments Years of meticulous research into the causes of a rare kidney disease has led to the development of a vital new treatment.

Professor Tim Goodship, Chairman of Kidney Research UK and Professor of Renal Medicine at Newcastle University, has spent more than 20 years studying atypical Haemolytic Uremic Syndrome (aHUS) – a rare form of kidney disease which does not have a cure, and causes irreversible kidney failure.

His work has helped to prove that a drug called Eculizumab can prevent kidney failure in people with recent onset aHUS – a development which also means that aHUS patients undergoing dialysis can now have successful transplants.

These amazing findings received a major boost recently when The National Institute for Health and Care Excellence (NICE) issued draft guidance which recommended the drug for use by the NHS in England.

Your support enabled us to fund some of Professor Goodship’s ground-breaking research. Here he talks about his work, the NICE recommendation and its likely impact on people with aHUS.

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THE BIG INTERVIEW // P07

Q

Congratulations on the NICE draft recommendation. Why is this ruling so important?

Thank you. Yes, I’m absolutely delighted with the guidance. We’ve been successfully treating aHUS patients with Eculizumab since NHS England approved its use on an interim basis last year. Although there was clear evidence that the drug is clinically effective, the NHS England commissioning policy was only valid until guidance from NICE was available. We’re hoping that NICE will now make a final firm recommendation which will hopefully mean that all aHUS patients in England will be entitled to the drug in the future.

Q

What does this mean in practical terms for people with aHUS? We now have an opportunity to prevent kidney failure in people with aHUS. In addition, we can now successfully transplant aHUS patients – people like Shaun McCowie. This wasn’t possible before because the disease tended to come back in the transplanted kidney and destroy the kidney, so many patients had no choice but to stay on dialysis for the rest of their lives.

Q

What causes the condition?

aHUS is a condition in which the blood vessels within the kidney’s tiny filters become blocked by blood clot. The disease is caused by over activity of the complement system – an ancient immune system which coats both foreign cells (such as bacteria and viruses) and our own cells (including those of the kidney) with a substance called C3. This substance will eventually lead to the destruction of bacteria and viruses by damaging the cell wall. If our own cells are not protected against C3 they can suffer a similar fate. In aHUS, the proteins which should protect kidney cells from C3 are faulty, the cells are damaged, and kidney failure occurs.

Q

How does Eculizumab work?

Eculizumab works by blocking the complement system and stopping it causing unnecessary cell damage. The drug was actually developed to treat another disease caused by an abnormality in complement so we hypothesised that it might also be beneficial for aHUS patients.

We and several other research teams around the world tested this out and the results were successful.

Q

You’ve been researching this particular kidney disease since the mid-1990s, what drew you to aHUS in the first place?

I was involved in the care of a family from the North East of England, where multiple members had been affected by aHUS. At that time the cause of the disease was unknown. We felt that studying the form of the disease that runs in families would give us a unique opportunity to identify its genetic cause. If you can understand what causes a disease at a genetic or molecular level it gives you a much better chance of developing a rational, logical treatment.

We studied DNA samples from the family from the North East and two other families from the South West and Belgium and found that one of the families had an abnormality in a complement gene. This led us to believe that complement N was likely to be an important factor in the development of the disease.

Q

Do you still plan to continue your research into aHUS?

Definitely. We know that 60 per cent of patients have got an underlying complement abnormality but that means that for 40 per cent of patients we don’t know what the underlying abnormality is. We still need to look at these patients to try to identify the cause of their disease in some of whom it may not be complement.

As this magazine went to print NICE was expected to make a final decision on the use of Eculizumab on the NHS in England.

If you can understand what causes a disease at a genetic or molecular level it gives you a much better chance of developing a rational, logical treatment.

Since that time we and other groups in Europe and North America have been able to identify that in patients with this very rare disease around 60 per cent will have an abnormality in a complement gene.

Q

How has Kidney Research UK supported your research?

Kidney Research UK has been one of several major funders of our research and has given us several grants over the past 20 years.

Without its support we might not be where we are now.

Case Study When he was 29, Shaun McCowie was diagnosed with aHUS. The disease had been rampant through Shaun’s family for years, and as a result he lost two brothers, two sisters, his uncle, his nephew and his dad. Shaun had to accept that he would probably spend the rest of his life on dialysis.

But in 2014, after 25 years on dialysis, Shaun had a successful kidney transplant thanks to Eculizumab. One hour before the transplant, he was treated with a dose of the drug, and since his transplant, things are looking

good for Shaun. He still has monthly check ups to make sure everything is ok, and has one dose of Eculizumab every fortnight which is administered by a drip.

Shaun said: “Now I’ve had my transplant, my family aren’t worrying about me having a heart attack because of the strain dialysis puts on your body. To be honest, I wasn’t sure how much longer I’d last on dialysis. Eculizumab changed my life.”

Call our donation line: 0800 783 2973

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HEALTH & LIFESTYLE // P08

Christmas Gift

It’s nearly time for Christmas – we don’t know about you, but we’ve been counting down since June!

Although it’s the most wonderful time of the year, it can also be tricky to find gifts that suit everyone.

So, we’ve put together some ideas to inspire you this year.

List

Queensgate, Peterborough

Gift of Research

You may have heard that Queensgate Shopping Centre in Peterborough have selected us as their charity partner for 2014/15.

We’ve already organised a ‘Kick it for Kidney’ event at the centre, and now we’re gearing up for our Christmas wrapping fundraiser too.

For the person who’s got everything, why not give the gift of research? Your gift will help fund the very best research into kidney disease across the UK – you can read about some of the projects we’re funding in our Research Round-Up on pages 12 and 13.

If you’re local to the area, Queensgate is the perfect place to go to pick up some Christmas gifts. With over 90 shops including John Lewis and H&M, you’re bound to find something for everyone. And when you’re fed up with shopping, there are lots of places to sit and have a bite to eat!

You can choose to gift up to £100, which would pay for two days consumables for one of our research fellows.

Visit: www.queensgate-shopping.co.uk

www.charitycardshop.com/kidneyresearch

You can buy your Gift of Research from our online shop. And if you’re planning for next year, you can also pick up your 2015 diary! Visit:

Phone case

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HEALTH & LIFESTYLE // P09

Phone Case

Clothes for Charity

Show your phone the love and devotion it deserves with an Armadillo case – perfect for technology lovers! Christopher Hackman owns Armadillo Cases and suffered from kidney failure. In February 2013 Christopher’s mum, Raymonde, gave him a kidney, and now the family are helping to raise funds for the charity.

The transplant was totally successful and Christopher and Raymonde have both been doing well since.

What happens if you get a dress for Christmas that’s too big, or a ‘stylish’ jumper that’s not quite your style…?

If you get in touch with Clothes for Charity, you can recycle your presents without feeling bad, as you’ll be raising funds for Kidney Research UK!

All Kidney Research UK supporters can receive a 10% discount on mobile phone cases purchased from Armadillo Cases. And the company will donate £1 directly to Kidney Research UK for every case sold.

Clothes for Charity provides a secure and simple way to donate your clothes and raise money.

For every tonne of clothing that’s donated, Kidney Research UK will receive £200.

Cases are available for iPhone, Samsung Galaxy & Blackberry phones. To get your 10% discount, make sure you enter kidney10 at the checkout.

All you need to do is visit the website and request a donation bag. When it arrives, fill it to the brim with your good quality, unwanted clothing. Once the bag is full, simply click back onto the website and choose when and where you’d like the bag to be picked up from. A courier will come and whisk it away, and you’ll get an e-mail telling you when it’s been safely received.

Visit: www.armadillocases.com

Visit: www.clothesforcharity.org.uk

Winter warmer Chris Coates is Head Chef at the Lambert Arms in Oxford. He has supplied us with a delicious ‘winter warmer’, and as always, Jan Flint, Renal Dietitian at the Royal Free London NHS foundation trust is on hand with her tips.

For more information about the Lambert Arms, visit: www.bespokehotels.com/lambertarms

Do you have a favourite recipe?

Why not send it in to update@kidneyresearchuk.org? You could be featured in one of our future issues!

Haunch of venison, sweet potato puree, roasted shallots, winter greens, juniper sauce Ingredients:

4 venison haunch steaks @ 160-180g 2 large sweet potatoes

1 savoy cabbage 12 small peeled shallots 1/2 litre of game jus

2 large courgettes 20g juniper berries

Method:

oil, 7 . Heat a frying pan and add a little ks slowly fry the seasoned venison stea turning them frequently till they are these coloured evenly on all sides, place shallots in the oven for 8 mins . Place the . in, to colour along with the venison and 8 . Remove the steaks from the oven is This . mins few a for rest allow to r now the time to reheat all the othe s. ingredients and place onto the plate and s slice thin nice into son Slice the veni e on top of the cabbage and finish plac 4 . Cut the courgettes in half to form with the sauce before serving .

4 cylinders and then cut these into or roast Jan says : If you are on a potassium wedges through the cross section, the that re Ensu . on little ricti a rest a phosphate these lightly in the oven with portion of meat is no more than dried herbs .

100g/4oz per portion .” boil in 5 . Crush the juniper berries and ld be Jan says : The sweet potatoes shou the game jus for 1 minute and then d as boile then and s . piece e ler infus smal cut into leave for the flavour to r to increases the surface area in orde this .” ent cont ssium 6 . Keep all of these now prepared pota the ce redu e ingredients warm for the final stag up. of plating

until 1 . Peel and boil the sweet potatoes rve rese and r wate d salte ly light in soft for mashing . a 2 . Place the shallots in a tray with foil little sugar and water. Cover with soft until c 160 @ oven an in e plac and to touch . s and 3 . Cut the savoy cabbage into strip and boil gently in a little butter and water until tender.

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FOCUS ON... // P10

Living well on dialysis Kidney Research UK Trustee Jan Cooper leads a busy life. She’s a blog writer, co-editor, fundraiser and hands-on granny who loves to cook, entertain, garden and socialise with friends and family. She also has a part-time job that must take priority over everything else – the job of self-dialysis.

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FOCUS ON... // P11

We decided between us that home dialysis would be the best option for us even though it does present some stresses as well as advantages.

Jan is featured in our new Dialysis Choices DVD – which has been specially designed for people with kidney disease and their families. Using personal experiences from people across the UK, it compares and contrasts the different types of dialysis to help others decide which method would best suit them.

In addition, a comprehensive new booklet entitled Dialysis: Making the right choices for you has been produced which explains, in detail, all the treatment options available to patients. It was developed through a study by the Yorkshire Dialysis Decision Aid (YoDDA) research team at the University of Leeds, which we supported.

There are currently over 23,000 people on haemodialysis and 4,000 people on peritoneal dialysis in the UK. Jan, who has hereditary polycystic kidney disease, self-dialyses at home. Initial attempts at peritoneal dialysis were unsuccessful. She has been on home haemodialysis for the past two years. Jan is supported by her care partner and husband Alan.

“We decided between us that home dialysis would be the best option for us even though it does present some stresses as well as advantages,” says Jan. “Our decision was based on the freedom it would give us, especially the freedom to choose when you actually use the machine. So, if Alan or I have a meeting I can dialyse in the evening or in the morning. We can juggle it a bit but what we can’t ever do is miss it – that’s the critical bit.

“A major plus for me is a comfortable room with a TV, a radio, an iPad and a telephone.

Alan brings me snacks and cups of tea to keep me going. I’m one of the fortunate renal patients who isn’t on a restricted fluids regime. I can’t dialyse without him

however because I need him to attach me to the machine. I can’t physically do it myself. During the dialysis various alarms ring when the machine needs adjustment, and he has to sort that out too.

“You need to be systematic, organised, and you need to give yourself control over the situation you’re in. You’ve got to have the motivation and the right attitude. For me, I see dialysis as a part time job. I didn’t choose it but if I want to stay alive I’ve got to get on with it – I’ve got to go to work!

“There are disadvantages. I dialyse every other day and it takes between three to four hours. I also have to spend 40 minutes preparing the machine beforehand and then it takes me a further 15 minutes to sort myself out and tidy up afterwards. There are costs involved.

We had to buy a reclining chair and set aside a room for dialysis in which as well as dialysing I keep all the boxes and equipment which are part of the process.

And our machine – which we have named Chugley because of the noise it makes sits in the centre.

“There are additional ongoing costs such as extra heating, and increased water use, if you’re on a water meter like us. It can be very stressful when things don’t work properly. If the needling goes wrong you have to go back to hospital to get scanned for a new needle site. This can knock your confidence. But overall, home dialysis really works for us.”

Because he can’t be too far away Alan uses his time productively. He is a novelist so he writes as Jan dialyses. Jan does a lot of reading, watches a bit of TV, writes emails, searches the internet or nods off.

Friends and family call in occasionally but usually it’s a quiet time.

Over the last few months Alan and Jan have worked on their new book, which was launched in the summer at their annual fundraising garden party. It’s called Staying Alive. As the title suggests, it’s a very positive book containing accounts from actual dialysis and transplant patients plus a few related fictional stories. One reviewer describes it as, ‘enlightening, funny, deeply moving but ultimately the remarkably frank and sometimes intimate exchanges of people who are confronted with this life changing experience every day of their life.

‘Staying Alive costs £6 (or £1.44 as an eBook) and all proceeds go to Kidney Research UK. To order a copy visit www.thestayingalivebook.co.uk

c To order a copy of our new Dialysis Choices DVD visit www.kidneyresearchuk.org/ DialysisChoicesDVD c The Dialysis: Making the right choices for you booklet is now available to download at www.kidneyresearchuk.org/ DialysisDecisionAid

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RESEARCH ROUND UP // P12

Research round up – innovative projects funded by you Your vital donations enable us to fund worldclass research into all aspects of kidney disease.

In this issue we’re focusing on three exciting new projects at the University of Leicester.

The University has a diverse renal group made up of doctors, scientists and other healthcare researchers who are looking into the causes of kidney disease and trying to find new ways to prevent and treat it.

Together, they are studying the disease at molecular level in dedicated labs and working with kidney patients in hospitals and clinics to tackle the issues that affect them the most.

See how your money can help

£10 £15 £50

per month would pay for one hour’s work by a student researching better ways to treat kidney disease. per month could help pay for one hour of research by a senior researcher investigating new treatments for kidney disease. per month would help to pay for culture dishes, pipets and other lab equipment that our researchers need to use and replace frequently.

Please help us fund even more ground-breaking projects – projects that could lead to potential cures or new treatments for kidney diseases.

Call our donation line: 0800 783 2973 Make an online donation at www.kidneyresearchuk.org/donate

New exercise programme could improve fitness and quality of life for kidney patients We are funding a year-long project which aims to develop an innovative new way to help kidney patients enjoy more healthy and active lifestyles.

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.

Dr Alice Smith, Team Leader of the Leicester University Kidney Exercise Team, will use a £38,962 innovation grant to create and test an exercise programme that can be personalised to each patient, allowing them to set and work to their own realistic goals.

The programme will include: c a motivational interview session for each patient c a n information manual, containing frequently asked questions, suggestions, activities, inspirational patient stories and space for personal details.

Based at Leicester General Hospital, Dr Smith and her team will work with 50 people with early stage kidney disease, their families, carers and other healthcare professionals to develop, test, modify and re-test the programme.

They hope the resulting programme will be further tested in a larger project involving many more patients from across the UK.

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RESEARCH ROUND UP // P13

New study to investigate muscle loss in patients with chronic kidney disease We are funding an important year-long study which aims to better understand why and how chronic kidney disease (CKD) can cause muscle wastage.

Many people with CKD find that their muscles get weaker and smaller – especially their leg muscles. This can make everyday activities like walking and climbing stairs very difficult.

Dr Emma Watson from the Department of Infection, Immunity and Inflammation at the University of Leicester will use an £11,000 innovation grant to try to discover why this happens and whether muscle wastage can be slowed down or reversed.

She will grow thigh muscle from seven kidney patients and seven healthy people in the laboratory and compare the process of muscle renewal in both groups, paying special attention to the different proteins involved in the continual cycle of muscle regeneration.

Dr Watson will monitor the speed at which particular proteins appear in these muscle cells in order to try to understand exactly what goes wrong in the muscle of patients with CKD. Data from this preliminary study will be used in a larger project to see if exercise can help to prevent, slow down or reverse muscle wastage.

New study aims to greatly increase our understanding of the causes of IgA Nephropathy The Leicester IgA Nephropathy group A protein called Immunoglobulin A (IgA) will be at the centre of a three-year study into the causes of IgA Nephropathy (IgAN) – a common chronic kidney disease that is initially diagnosed in people in their 20s and 30s.

The protein normally helps the body to fight infection but in IgAN it becomes trapped in the very fine filters of the kidney, causing damage and scarring to the whole kidney.

Many people don’t realise they have the condition until it has damaged their kidneys and there is currently no specific treatment other than strict blood pressure control.

Around 30 % of patients will go on to experience kidney failure and will need to have dialysis or a kidney transplant.

We have given a £191,121 research grant to Dr Jonathan Barratt, Dr Karen Molyneux and their team from the Department of Infection, Immunity and Inflammation at the University of Leicester to investigate exactly what happens when the IgA protein gets caught in the kidney’s filters.

Using kidney biopsies, blood and urine samples donated by patients at Leicester General Hospital, the team will also try to identify a ‘marker’ which could predict whether a patient will need a kidney transplant in the future.

They hope that a better understanding of the disease could help to identify new and more effective treatments.

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FOCUS ON... // P14

Three cheers for our volunteers “Our amazing volunteers are the lifeblood of our charity,” says Christian Cornforth, Volunteer Programme Manager at Kidney Research UK.

Some of our volunteers who have helped to raise awareness and fundraise this year

“They are at the heart of everything we do.

Without them, a lot of our vital work just couldn’t be done.”

c Event volunteers – who make it possible for us to run our main events and who also organise their own

Approximately 500 volunteers of all ages and from all backgrounds regularly support us in a wide variety of ways.

c Shop volunteers – who keep our five shops open nationwide

These include: c Trustees and Lay Advisory Committee members – who steer our charity and help to set our key research objectives c Patient Involvement volunteers – who give a patient voice to our research and support other patients involved in clinical trials c Community Champions – who act as our ambassadors in their local areas, raising vital funds and raising awareness of kidney disease c Collection Tin Coordinators – who place fundraising tins in their local communities and regularly collect and bank the money raised

c Office-based volunteers – who provide a wide range of skills from administrative support to project management “Some volunteers have direct experience of kidney disease while others want to gain new skills and experiences,” says Christian.

“And, whether they can spare 12 hours a week or are just able to commit to doing one or two things a year, they are all equally important to us.

“We like to highlight our appreciation during National Volunteers’ Week each June. This year we sent out thank you cards and invited all of our volunteers to five celebration events across the UK. We also highlighted their amazing efforts in our quarterly newsletter, Volunteer Matters! and posted thank-you messages on all of our social media sites.

“The reason for our gratitude is simple – our volunteers are absolutely pivotal to the work we do and the work we want to do. They are a vital part of our present and our future.” elp make a difference to the lives of H over 3 million people who are currently living with kidney disease in the UK. To find out how you can help and learn more about volunteering with us please email: volunteer@kidneyresearchuk.org

Volunteers are absolutely pivotal to the work we do and the work we want to do. They are a vital part of our present and our future.

Find out more: www.kidneyresearchuk.org KR8231 Update Winter 2014 V4-ART.indd 14

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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.

Star Tweets In #bristol for @Kidney_Research conference & will be speaking to the room this afternoon.

Anna-Maria Steel @realAnnamaria (08.09.14)

Dear Sirs Yet again I missed out on the walk across the bridges in London – this time as I am still suffering the effects of losing my beloved husband of 43 years. The transplant was successful but sadly he had a series of strokes followed by the return of the cancer he had beaten years before. In three months he was dead – just one year after the transplant.

STAR !

ER LETT

I was so privileged to be able to gift him one of my kidneys and in spite of only surviving one year I would urge any spouse to do the same. It gives a new dimension to the marriage bond!

Please accept the enclosed donation of £200 to divert towards research into ways to improve haemodialysis in patients who suffer badly from its side effects.

Yours faithfully,

Some of our supporters have chosen to donate to Kidney Research UK whilst participating in the recent #IceBucketChallenge on Facebook and Twitter. We are extremely grateful to those who took part and donated to us; thank you for your continued support.

PB for my first @CheltenhamHalf marathon ;) raising over £500 for @Kidney_Research.

Could do with some new knees now Tobas Louis @tobaslouis (07.09.14)

Mrs P Maxwell

Star Facebook posts

My husband and I are celebrating our 25th Wedding Anniversary on Tuesday and are having a big garden party to celebrate this evening with around 100 family and friends. Preparations just about finished for our purple and silver themed garden party. We have asked guests to donate to Kidney Research UK in lieu of gifts. Almost ready to party! :)

Winner announced!

Earlier this year we ran a competition and asked our readers to redesign the mugs that are sent to our ‘Star Letter’ writers.

We’re pleased to announce that the winner of our competition is Rosa from London! Here is Rosa’s original design, and here’s a picture of her with the final product. Rosa’s mum Jill has told us that Rosa is really happy with it, which is great to hear.

To be in with a chance to win a mug, just get writing! You never know, you may be ‘Star Letter’ in the next issue!

Lisa West (06.09.14)

London to Paris finished for Kidney Research UK. Great cycling, fantastic weather, brilliant crew, plenty of food and drinks, but most of all, such wonderful people, giving their all for charity.

James Maxwell (23.06.14)

Call our donation line: 0800 783 2973 KR8231 Update Winter 2014 V4-ART.indd 15

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