Update Magazine Nov 12

Update Winter 2012

THE MAGAZINE FROM KIDNEY RESEARCH UK

How close are we to growing new kidneys?

PAGE 04

Introducing our new CEO

Have yourself a kidney-friendly Christmas

The therapeutic benefits of gardening

PAGE 06

PAGE 08

PAGE 10

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05/11/2012 14:17:35

Welcome to the Winter edition of Update.

Every mile is two in winter, according to the English poet George Herbert. Many of us can relate to this when winter sets in. The black evenings and chilly grey days can make it seem as though even the smallest task requires much more effort.

But it doesn’t need to be like this.

Especially if you spare a thought for those who are feeling under the weather (pardon the pun) – where every mile is two, no matter what the season.

If you’re a kidney patient receiving dialysis treatment, you may have to travel miles to your local dialysis centre. The prospect of facing a wintery journey to dialyse, when you’re already feeling tired, is something kidney patients are facing right now.

Thanks to your support we are working hard to find better treatments to help make dialysis a thing of the past. What if we could develop a new treatment in which we could grow a new kidney for patients – wouldn’t that be amazing? If you turn to page 04 you can read about how your money is helping us find ways to do just that.

We also believe that genetics play an important role in helping us discover new treatments. Turn to page 14 to find out about a breakthrough new drug that will help those with rare kidney diseases.

There is still a lot more we need to do to find better treatments and a potential cure for the illness. But with your help, each mile along the road we take with our research, brings us much closer to saving the lives of kidney patients.

Rachel Andrews, Editor

Contributors

Designed by

Mathew Waik Mike Daracott Dr Peter Hohenstein Dave Hamilton Jan Flint Sharlene Greenwood Sandra Currie Professor Tim Goodship Professor Neil Turner

www.adeptdesign.co.uk

Photographers Matthew Roberts Rupert Watts

Printed by Print 4 Business Ltd Contact us Kidney Research UK Nene Hall Lynch Wood Park Peterborough PE2 6FZ Tel: 0845 070 7601 Fax: 0845 604 7211 www.kidneyresearchuk.org

We help deliver award-winning care A GP surgery in North Wales has been nominated for two national awards for successfully implementing our primary care programme.

The Hillcrest Medical Centre in Wrexham has been shortlisted for ‘Nursing Team of the Year’ and ‘Clinical Team of the Year – Long Term Conditions’ as part of the 2012 General Practice Awards, which recognise success in primary care.

Our primary care programme (known as ENABLE) has been developed over the past couple of years and aims to improve the quality of care on offer to people with chronic kidney disease (CKD). Following on from previous studies to identify where improvements could be made, we devised ‘Care Bundles’ to help doctors and Practice Nurses better support people with CKD. We also developed educational materials, to help patients manage their condition themselves, and provided special training for Practice Staff.

Finally, the programme has succeeded in identifying a number of patients at risk of CKD who might have otherwise gone undiagnosed.

The winners of the 2012 General Practice Awards will be announced at a special ceremony in London later this year, with more than 900 GPs, nurses and practice managers expected to attend.

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05/11/2012 14:17:36

NEWSROUND // P03

Campaigning for kidney patients Since November last year, we’ve been working closely with the Glasgow Evening Times in Scotland to help promote their Opt for Life campaign for organ donation.

Thanks to the efforts of our Fundraising Manager Liz McGuinness, the paper now has more than 10,000 signatures supporting a move to a system of presumed consent across Scotland, and recently lodged its petition with the Scottish Parliament.

Led by Liz, our volunteers have been instrumental in promoting the petition, with kidney patients, health professionals, members of the public and top businesses such as Sainsbury’s and WHSmith all pledging their support. Liz also managed to get well-known Scottish actor Robert Carlyle to put his signature to the campaign.

We support the introduction of a ‘soft’ system of presumed consent to help improve transplant rates throughout the UK. At the moment, a staggering 90 per cent of all patients on the NHS transplant waiting list need a kidney, while only 2,700 operations are carried out annually. As a result, 300 people in the UK die every year waiting for a kidney transplant.

Organ donation survey reveals shocking results We recently carried out a survey which revealed that, shockingly, the majority of people in the UK are prepared to receive an organ but not donate one. Results from the poll indicate that while 87 per cent of people in the UK would accept a transplant if told they needed one, only one in three are actually on the organ donor register. More than half of those questioned (54 per cent) would also favour introducing a system of presumed consent for organ donation, where individuals would have to opt-out of becoming organ donors, rather than signing the register.

Have you signed up to the organ donor register to help save lives?

If not, you can sign up via our website: www.kidneyresearchuk.org

Transplant recipient Jim Farrell

Glasgow Evening Times, August 2012

Record numbers Joining forces In July, we announced at legacy an exciting new collaboration with reception the British Kidney

Beaulieu Motor Museum, Hampshire

We welcomed a record number of attendees to our September Legacy Reception at Beaulieu Motor Museum in Hampshire, which holds a stunning collection of classic cars.

A total of 46 people joined us for the afternoon, which featured a presentation from Dr Xiong Ruan on his work that we’ve funded into cholesterol and cardiovascular disease. Dr Ruan’s project looks to find the answers to reducing the risk of heart problems in kidney patients who are more likely to develop heart problems due to their illness.

Patient Association (BKPA), which will lead to improved support for kidney patients and more funding for renal research. Part of this Dr Tony Wing collaboration means we will no longer be providing a welfare grants service for kidney patients – handing over all our existing grant applications to the BKPA, instead. Alongside these changes, Kidney Research UK and the BKPA are working together to create the Dr Tony Wing Award – a three-year award which aims to improve care for young kidney patients through better collection of data.

Don't forge

t!

Research UK y e n id K t r o p p u S y buying this Christmas b and gifts from s d r a c s g n ti e e r g . Just visit: our online shop p archuk.org/sho se e r y e n id .k w w w Call our donation line: 0800 783 2973

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05/11/2012 14:17:37

HOW YOUR MONEY’S HELPED // P04

Will we ever grow new kidneys?

Imagine a world where kidney patients weren’t forced to wait for transplants - left to queue in their thousands because of a shortage of donor organs.

Imagine instead that we could build new kidneys from scratch, using little more than a patient’s own cells to create tailor-made kidney tissue. Sound impossible?

Such a world might not be as far-fetched as you think…

It’s been a busy few months for Dr Peter Hohenstein and his team of researchers at the University of Edinburgh. As well as moving to a new laboratory, inside the university’s £60 million Roslin Institute, their study looking at whether induced Renopotent Stem cells (iRS) could one day be used to treat kidney patients has begun to produce some extremely promising results.

Dr Peter Hohenstein

Taking time out from the move, Dr Hohenstein tells us about his work and how it could benefit people with kidney failure in years to come:

“As we know, chronic kidney disease (CKD) is a serious and widespread illness that can lead to kidney failure, leaving patients entirely dependent upon renal replacement therapies such as dialysis and transplantation.

“Of these two treatments, transplantation is by far the most effective. However, for thousands of kidney patients, dialysis is their only option due to the severe shortage of donor kidneys.

“The work of recent Nobel Prize winners Sir John Gurdon and Shinya Yamanaka shows us that mature cells can indeed be reprogrammed into other, completely different cell types.

“What our research aims to do is change any adult cell into embryonic kidney cells – the building blocks involved in the very earliest stage of the kidney’s development as an organ.

“Yamanaka’s experiments showed that adult cells can be reprogrammed to behave like stem cells in the early embryo – capable of making a whole new body. This makes them powerful but potentially risky. Our experiments aim to reprogram them to behave like foetal stem cells, capable of making just new kidney tissue.

“This ability to ‘create’ new, foetal kidney cells – which are specific to individual patients – might then allow us to develop fully functional kidney tissue and could all but eliminate the need for donors.

“Because different types of cells express different genes, we’re able to look at which genes are expressed by cells before and after we’ve reprogrammed them. This then tells us whether any kind of transformation has taken place and, if so, what the cell has become.

“We’ve done just this. Excitingly our results have shown that we can reprogram cells into something that looks like an embryonic kidney cell and may well be able to make patient-specific kidney cells.

“This would open up a wide range of possible alternative therapies to kidney transplantation, not least the potential to one day create new kidneys from scratch and thereby significantly reduce our dependence on organ donation.”

Find out more: www.kidneyresearchuk.org KR6761 - Update Winter 2012 V4.2 REPRO.indd 4

05/11/2012 14:17:41

HOW YOUR MONEY’S HELPED // P05

The next step

Katherine Hall (left) with

If that kind treatment had been around when my kidneys first failed, I wouldn’t be in the position I am now.

sister Alex

Katherine Hall Katherine Hall was just eight years old when she was first diagnosed with kidney disease. Now 30, Katherine is in need of a third transplant but, due to high levels of antibodies in her blood and a shortage of UK donors, has only a seven per cent chance of receiving another organ.

“I remember when my parents were told I had kidney failure; they were so shocked. Doctors originally thought I was anaemic and by the time they realised it was actually a renal problem my kidneys had got so bad that they’d stopped working completely. At that point, I was rushed to hospital in Newcastle and put onto peritoneal dialysis to keep me alive.

“Since then, I’ve had two transplants – one which lasted about ten years and another which failed after just 18 months. The antibodies I’ve been left with make it very difficult for doctors to match me up with another donor.

“It’s not very nice being back on dialysis and I know from my previous transplants exactly how I could be feeling if I was able to have another. If doctors were able to grow tissue to repair damaged kidneys or even replace them, it would be incredible for me, not to mention the thousands of other people in the country that desperately need a kidney.

If that kind treatment had been around when my kidneys first failed, I wouldn’t be in the position I am now.”

The next step for Dr Hohenstein, together with his post-doctoral researcher Dr Karamjit Singh Dolt and co-applicant Professor Jamie Davies, is to further improve the reprogramming process and continue tests into making the embryonic kidney stem cells from which the kidney’s filter units develop. After this, he and his team will attempt to use the same process to create the cell type which forms the remaining part of the organ. Once they have both components, they will turn their attention toward creating functional kidney tissue from these two cell types.

Such a step will take some years of research, with the ultimate aim being to take cells from a kidney patient, reprogram them into the cell types required to form an embryonic kidney and then use it to restore that patient’s renal function. This would not only do away with the need for the majority of kidney transplants but would also eliminate the problem of transplant rejection. Because the new kidney would be the product of a patient’s own genetic material, it would, in every sense, be a perfect match.

We need your on-going support to help Dr Hohenstein continue with his project, in the hope that we can create a new method of treating kidney patients in future.

We need your help The Charity needs to raise significantly more funds to e, so take this project to the next stag and UK the in ts ien that kidney pat across the globe can benefit from earch this new technique. Kidney Res nt spla tran the ke ma UK would like to can – t pas the of g waiting list a thin you help us? e If you would like to help us rais ject pro money to take this through to clinical trials please make a donation using the form ine which accompanies this magaz or by visiting: nate www.kidneyresearchuk.org/do

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05/11/2012 14:17:45

THE BIG INTERVIEW // P06

Taking the helm In August, Charles Kernahan stepped down as Chief Executive of Kidney Research UK, after nine years in charge. In her first official interview since taking the helm, Sandra Currie tells us a little about herself, her first impressions of the organisation and her vision for the future.

Find out more: www.kidneyresearchuk.org KR6761 - Update Winter 2012 V4.2 REPRO.indd 6

05/11/2012 14:17:46

THE BIG INTERVIEW // P07

Kidney Research UK is renowned for consistently punching above its weight, funding the right kind of research and ensuring outcomes are turned in to treatments and improvements for patients.

“As I’m sure you can imagine, I feel very excited and extremely privileged to be here at Kidney Research UK. “Immediately before coming on board as CEO, I was with Sense – the charity for deafblind people – prior to which I spent 15 years with Marie Curie Cancer Care, raising the money needed to fund ten hospices and 3,000 specialist nurses across the UK. “Before all this, though, I was myself a nurse, and worked and trained in a large teaching hospital in Glasgow. Over the past three years I’ve missed working to support people in a medical environment. Now I’ve joined Kidney Research UK, I’m looking forward to once again helping improve the lives of patients and families who are living with the challenges of kidney disease.

“Before joining the Charity in September, I didn’t think I had any history of kidney disease within my family or among my friends.

However, as soon as I told people that I’d taken up the post, they would say, “Oh, my mum’s had a transplant,” or, “my brother’s only got one kidney.” People I’d known for many years were affected by kidney disease, I just didn’t know about it.

“For us, as an organisation, it’s hugely important we encourage people to be aware of and talk about the dangers of kidney disease. Not just to help early detection and better diagnosis but to gather more support to our cause. You, as supporters and readers of this magazine, have a vital part to play in this.

“Before joining the Charity I thought of it as an organisation funding scientists in labs, in order to help kidney patients. Having settled in, I can tell you that it’s so much more than this. It’s not just scientists looking at cells in labs (though this is a critical part of what we do); we’re also doing lots of important research into clinical and bedside care; dialysis and transplantation; the things that really make a difference to doctors and patients.

“I’ve now met a number of dialysis patients and it’s been interesting to hear directly from

them about the kind of things that would improve their quality of life. Hearing from them first-hand, I began to realise dialysis has much more of an impact on people’s lives than I had imagined.

“Being a tea-lover, I struggled to think how it would feel to be limited to one or two cups of fluid per day. Along with these strict diet and fluid restrictions, I discovered many renal patients also leave dialysis sessions feeling worse than when they arrived. They’re often so exhausted that they have to go home and sleep and won’t feel the benefits of their treatments until much later. This is a clear example of why we do what we do as a charity, and any improvements we can introduce to improve life for kidney patients will make a real difference.

“My role as Chief Executive is to make sure the Charity is run as effectively as it can be and that we carry on increasing our spending on research. We’re not going to reach a stage where we can say we’ve done everything we possibly can. Every year we turn down projects which may lead to breakthroughs because we don’t have enough money to pay for them. We must continue to grow, ensure we get the best value from our supporters’ donations and see that the research we fund is translated into improvements for kidney patients.

They must be at the heart of every decision we make and everything we do.

“This is a charity with lots to be proud of and I’m incredibly impressed with what’s been achieved, even in a period of economic downturn.

Kidney Research UK is renowned for consistently punching above its weight, funding the right kind of research and ensuring outcomes are turned in to treatments and improvements for patients. Our work doesn’t just stay in the lab and excite scientists; it becomes part of how we treat, manage and support kidney patients.

“You only have to look at the breakthrough in normothermic perfusion that was featured in the last edition of Update to know that every penny you donate matters.

The research you help to fund really does save lives.

“Along with its supporters, Kidney Research UK’s greatest assets are its focused approach to research and the fantastic people who make up the Charity. Because we’ve been funding research for five decades, we have in our midst some enormously clever and passionate people, who really want to do make a difference in the world of kidney disease.

“We’re also really fortunate to have people who volunteer their time to help the Charity.

Whether it’s someone here, at our head office, or in a shop in Cardiff, Dalkeith or Redcar, volunteers make a real difference to what we do and we value their hard work immensely.

“When I’m not at work it’s all about family for me and, as ever, I’m looking forward to spending Christmas with my nearest and dearest.

“Having settled into my new role, Christmas will be particularly special this year, and I’m very much looking forward to taking Kidney Research UK into 2013 and beyond.”

Don't forget !

Kidney patients are being urge d to get the winter flu jab this year, to reduce their risk of catching the virus and develop ing serious health complications. As k your GP for more informatio n.

Call our donation line: 0800 783 2973

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05/11/2012 14:17:47

HEALTH & LIFESTYLE // P08

The alternative Christmas dinner

Jan Flint

Christmas is there to be enjoyed, but, if you’re a kidney patient on dialysis, your diet and fluid allowances are still important.

With that in mind, Update has teamed up with specialist renal dietician Jan Flint and top executive chef Mike Darracott to provide you with a kidney-friendly alternative Christmas dinner.

Simply follow the instructions below for your festive family feast!

Chef Mike Darracot

Roast chicken with sage and onion stuffing and trimmings (Serves 5 - 6)

t

Roast potatoes What you’ll need:

1kg bag of white potatoes 4 tbsps unsalted butter

Chicken and stuffing

Method: 1 Preheat oven to 200°C (gas mark 6).

What you’ll need:

1 fresh or frozen chicken - 2kg 2 onions, peeled and diced 7 fresh chopped Sage leaves 2 tbsps of olive or vegetable oil 135g white breadcrumbs Freshly ground black pepper 1 small egg, beaten 3 tbsps of unsalted butter

Method:

2 Peel, wash and cut the potatoes into quar ters.

Jan says: “When preparing vegetables like spuds and parsnips, which are high in potassium, cut them into quarters before boiling. This increases their surface area so more potassium is lost during cooking than if they were simpl y halved” 3 Place in cold water and bring to the boil.

Cook for 12 minutes and drain.

4 Add butter to a hot roasting tray until melted.

5 Fill tray with potatoes and roll in the melted butter.

6 Roast in oven for 30–40 minutes.

Mike says: “Lots of people get hung up on cooking Turkey for Christmas, which I think is a mistake. Personally, I prefer Chicken: it’s cheaper, less dry and just as tasty!”

Jan Says: “A small amount of stuffing can be eaten at Christmas but remember that packet stuffing can be high in salt. Homemade is much better and try to use white bread, as it’s lower in phosphate.”

Honey glazed parsnips

1 Heat oil in a frying pan and gently soften onions for 6 to 10 minutes, stirring in chopped sage for the final minute.

2 Stir in breadcrumbs, butter and egg and mix into a paste.

3 Wash your Chicken and stuff mixture inside and right out to its bottom. Place some stuffing under the flap of skin where the neck was and use a skewer to close the neck and bottom areas.

4 Place the chicken in a baking tray, rubbing the butter over the breast and top of the bird.

5 Place in a preheated oven at 190°C (gas mark 6) and roast for about 1 to 1.5 hours.

ips Jan says: “Parsn um ssi ta po in h are hig ter ar qu a ve ha so only d of one parsnip an boil rt pa to er rememb ting.” them before roas

Mike says: “To make sure your meat is cooked, push a skewer into the bird and check that the juices are clear.”

What you’ll need:

500g peeled parsnips 60g unsalted butter 50ml olive oil 1 tbsp of honey 3 tsp chopped Thyme Ground black pepper

Method:

1 Preheat your oven to 180°C (gas mark 5).

2 Boil parsnips until half boiled.

3 Drain parsnips and place in an oven proof dish.

4 Add olive oil, butter, honey, Thyme, and black pepper to a saucepan and bring to the boil.

5 Pour mixture over your parsnips and roast in the oven for 20 to 25 minutes.

Find out more: www.kidneyresearchuk.org KR6761 - Update Winter 2012 V4.2 REPRO.indd 8

05/11/2012 14:18:01

HEALTH & LIFESTYLE // P09

Caramelised onions with Brussel sprouts Method in and cut a small cross Mike says: “This is a 1 Clean your sprouts, cook. to m the up n ow live all to great way ttom of each one, to bo the boiling water and boil a traditional Christmas Add to a saucepan of ve Lo t. ien dinner ingred until soft. the onions on them or hate them, a frying pan and fry to oil dd A

2 the be n’t uld Christmas wo a very low heat. ok same without sprouts!” d in the sugar and co 3 After five minutes, ad lour. co in n ow y or br til the onions turn stick un : ed ne u’ll yo s. t ion ha W with the on Drain sprouts and mix 1 large red onion (sliced) er on top.

4 Sprinkle black pepp 20 Brussel sprouts high in potassium.

Black pepper s: “Sprouts are very say n Ja 4 tbsps of olive oil nt you limit yourself It’s therefore importa u ar sug ter cas of tsp 1 four. Alternatively, yo to a single portion of h suc for other green veg, could substitute them st Ju n beans or broccoli. as runner beans, gree well.” remember to boil them rs’ ve Chef with more than 30 yea Mike Darracott is a top Executi , one this like pes e fantastic reci experience in the trade. For mor .com visit: www.chefmikedarracott

Carrots with garlic and chive butter

Jan says: “Whether or not you’re a kidney patient, always use unsalted butter to keep your salt intake down.”

What you’ll need:

1kg of small carrots (washe d and peeled) 20g unsalted butter 2 tsp garlic powder 6 stems of finely chopped chiv es 1 tsp of ground black pepper

Method: 1 Boil your carrots whole until cooked.

2 Melt butter in a saucepan and blend in the garlic powder, followed by the black pepper and chives.

3 Add the drained carrots, mix well and serve.

Beat the winter slump Sharlene Greenwood is the lead renal physiotherapist at London’s King’s College hospital and Chair of the British Renal Society Rehab Network. With Christmas on its way, we asked her to share her top tips for beating that inevitable winter slump: “Most people’s reaction to the approach of winter is to enter ‘hibernation mode’. It seems the closer we get to Christmas and the colder the weather becomes, we just want to stay indoors, take more naps, or start baking (and of course eating) all those lovely Christmas foods. As a result, exercise falls further and further down our list of priorities!

“As the days get shorter and the nights get colder, even the best of us can feel a little down, and the ‘winter blues’ are characterised by mild depression, lack of motivation and low energy. Luckily, exercise is a great way to keep the blues at bay.

Five top tips: 1. I f you enjoy exercising outdoors, don’t stop. Just make sure you do a proper warm-up beforehand, wear appropriate clothing, and beware of icy surfaces.

2. D ress in layers if you’re exercising outside. This way you’ll stay well insulated but can easily adjust as your body temperature rises by taking layers off.

Don't forget your hat and gloves as well!

3. Your winter workouts don't have to be a jog or run. Try walking to the shops or train station, or taking the family ice skating. Activities such as this not only help break up the monotony of winter workouts but are a fun family gathering.

4. I f you find the weather is just too cold for you to venture outside, try an indoor fitness class such as yoga or spinning. Alternatively, why not invest in a workout DVD? 5. To avoid unwanted weight gain and stay healthy over winter, be sure to stick to a regular exercise routine. If you’re short on time then break your exercises into short 10-minute bouts throughout the day. The idea of taking a “break” from exercise and starting again in the New Year will just make it harder to get back on track.

Call our donation line: 0800 783 2973 KR6761 - Update Winter 2012 V4.2 REPRO.indd 9

05/11/2012 14:18:13

HEALTH & LIFESTYLE // P10

Garden therapy

by Dave Hamilton, professional garden writer and kidney patient.

It has been found that light to moderate exercise, such as that carried out when gardening, cannot only help restore fitness levels but also reduce stress. This can be everything from a little weeding and pruning, to the much more physical stuff, such as digging and turning the soil.

Even for those whose health is too bad for exercise, just spending time in the garden can be beneficial.

“Health authorities are cottoning on to the fact that gardening is therapeutic for their patients.

“In Totnes, Devon the local health service has teamed up with the University of Plymouth to study the benefits of gardening on both physical and mental wellbeing. The study takes place in the Lamb community garden, situated in the centre of the town. This makes it possible for patients who don’t have a garden can get involved.

“Community gardens exist right up and down the country and they are always happy to take on volunteers. The Federation of city farms and garden’s website (www. farmgarden.org.uk) lists both city farms and community gardens throughout the UK. There are often workdays, workshops and talks in both city farms and gardens.

“Having a kidney problem can really drain you of energy. When my condition is acute it feels like I’ve ran a marathon and then decided to swim a dozen lengths of an Olympic sized swimming pool! During this time, anything other than bed rest seemed like a distant dream. I found this particularly difficult as I love to go on walks in the country and of course I love to garden. Right from the start I decided not to give in to the illness and to take regular short walks. I did this even when I was in hospital waiting

for a diagnosis. I would only go as far as my health allowed and would return while I still had some energy (rather than when I was completely wiped out!). In time, this slowly built into longer walks and I found just being outside helped my mood no end. As my health returned, the walks led to short burst of gardening such as light weeding and planting seeds. At first I would be out of breath simply emptying a wheelbarrow but after a while I could spend hours pruning overgrown shrubs and I could do much heavier work such as dig over beds ready to plant up.

I found this particularly difficult as I love to go on walks in the country and of course I love to garden.

“A little bit of exercise, be it walking, gardening or cycling can do wonders to both physical and mental wellbeing. You are of course the best judge of how much you can do as you know your own limits.

However, your doctor or specialist should be able to suggest the safe level of exercise for your specific condition.

To me the real benefit of gardening is it takes you away from yourself. The sense of satisfaction I get harvesting a crop of beans or digging over a plot of land is hard to find elsewhere. It can be the perfect antidote to hospitals and doctors waiting rooms.

What’s more it doesn’t need to cost the earth, my book ‘Grow your food for free’ is full of money saving advice for all kinds of gardeners (not just food growers).”

Find out more: www.kidneyresearchuk.org KR6761 - Update Winter 2012 V4.2 REPRO.indd 10

05/11/2012 14:18:14

HEALTH & LIFESTYLE // P11

Five light winter tasks Remember wildlife Fill bird feeders and put up fat balls for the birdlife in your garden. Don’t forget the ground feeding birds, a few apples or pieces of bread on the ground can help feed a more diverse mix of birds in your garden. Piles of twigs and branches can make an ideal home for hedgehogs, so be sure to have a few of these around your garden. As they will home in on piles of wood always check bonfires before you light them for signs of our prickly friends.

Sow garlic

Make leaf mould Rake up any old leaves and place into an open topped cage made from chicken wire. You can use this as a rough mulch to improve ground in the first year or leave for two years as substitute for peat compost in potting mixes.

Plan for next year Winter is a good time to go through seed catalogues and decided how you are going to set out your garden for the following year. It may be that your health means you will spend less time in the garden in the coming year so why not consider planting perennials like fruit bushes, rhubarb and/or ornamental shrubs instead of annuals?

Winter pruning Pruning shouldn’t be a complicated matter. Just remember the three Ds and prune away the dead, dying and diseased branches. Once that is done, prune away anything that is crossing or rubbing other branches. Finally prune to encourage flowers or fruit the following year and never cut more than 1/3 of the living plant away.

Sow garlic on the shortest day and harvest on the longest as the saying goes. In reality you can sow garlic from November right through to January. Garlic grown in Spain, Italy or further afield will be suited to that particular climate. So rather than sow any old garlic, choose either seed garlic from a reputable supplier or UK grown garlic bulbs.

Dave Hamilton’s book Grow You Own Food for Free is now available to buy in book shops.

Key Fact

syndicate, g in c a r e s r ho rtnership, Our charity a P h c r a e s e or R the Racing f and has so s r e ld o h e r a sh now has 27 £15,000 to n a h t e r o m far raised r work. u o d n u f lp e h

Health uncovered Professor Neil Turner is a Trustee and former Chairman of Kidney Research UK, as well as being Professor of Nephrology at Edinburgh University.

The Professor says: Water load of nonsense!

“We’re often told to consume copious glasses of water throughout the day, in order to stay hydrated. All this leads to is people dashing back and forth to the loo – there really is no health benefit. Just use thirst as your guide, rather than these faddy rules. We get plenty of fluid from our diet because everything you eat contains water, from fruit and vegetables to fish and even toast. I love drinking tea rather than gulping back bottles of water – especially now the cold winter months are starting to set in.”

Call our donation line: 0800 783 2973 KR6761 - Update Winter 2012 V4.2 REPRO.indd 11

05/11/2012 14:18:17

IN THE LAB // P12

In the lab: progress report With applications for our next round of Project and Innovation Grants expected in January, we’re already looking ahead to the research that we’ll be supporting in 2013. For now, though, we thought we’d bring you up to speed on two incredible projects which you’ve already helped to fund.

Measuring single kidney function Dr Steven Sourbron, University of Leeds January 2013 to January 2016 – Project cost: £149,000 Physicist Dr Steven Sourbron is about to embark on an innovative three-year study looking at an alternative way to measure individual kidney function in renal patients.

The ability to accurately measure kidney function, or glomerular filtration rate (GFR), is critical when diagnosing and treating kidney disease. Currently, the easiest way to do this is by testing a sample of blood for Creatinine – a natural waste-product of the body. Because Creatinine is normally removed by the kidneys as part of the filtration process, a high level of Creatinine in the blood is a strong indication that the organs are damaged in some way.

Testing blood for Creatinine is straightforward but not entirely accurate. A test will measure a patient’s renal function across both kidneys but cannot determine the individual health of each organ. This is a particular problem in illnesses such as renal artery stenosis, which is categorised by a narrowing of the renal artery and affects each kidney differently.

Radio-isotope techniques, where mildly radioactive substances are introduced into a patient’s bloodstream and then tracked around the body, offer an alternative. This type of nuclear medicine can be used to measure individual kidney function but is costly, time-consuming and exposes the patient to radiation – albeit in small amounts.

Faced with these problems, Dr Sourbron is investigating whether less invasive MRI scans can be used to measure GFR. Commonly associated with assessing brain injuries, magnetic resonance imaging (MRI) can produce detailed images of almost any part of the body.

He has begun by looking at 64 kidneys in patients with renal artery stenosis – measuring their GFR using both radio-isotopes and MRI scans. A direct comparison of the two techniques has found MRI to be very accurate in measuring GFR, with a discrepancy of just six per cent compared to radioisotope results.

Dr Sourbron now aims to improve his MRI technique further and hopes to develop a prototype software package for clinical use. If successful, this could lead to the introduction of a much more effective way of measuring single kidney function in renal patients; potentially even replacing the use of nuclear medicine in this area.

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IN THE LAB // P13

An update from our researchers September saw our twelfth annual Fellows Day conference take place at St Anne’s College in Oxford.

Close to 100 of our researchers from across the UK joined us to discuss their work.

Learning about kidney disease through fruit flies Dr Barry Denholm, University of Cambridge September 2012 to September 2013 – Project cost: £177,000 Dr Barry Denholm is halfway through a three-year study which is using fruit flies to learn more about a condition called nephrotic syndrome.

Nephrotic syndrome is a severe kidney disease where excessive amounts of blood and protein leak into the urine because the filtration barrier that would normally prevent such a leakage breaks down. Dr Denholm first developed an interest in this area while looking at the kidney filtration process in insects and, in particular, the nephrocyte – the specialised cell that filters the insect’s blood.

There are striking similarities between the cellular and molecular structure of the filtration barrier of fruit flies and those in humans. Because of this, studying the fly nephron can teach us more about how our own kidneys develop and function, what molecules are important in this process and how they’re affected by various kidney diseases.

Dr Denholm is particularly interested in mutations in a specific gene called CD2AP, which forms part of the kidney’s filtration barrier; although it’s exact role is unknown. By manipulating the CD2AP gene in the filtration barrier of a fruit fly kidney and observing what effect this has, Dr Denholm hopes to learn more about how the gene normally works. This will help him determine exactly how its malfunction leads to nephrotic syndrome.

This could in turn lead to new and improved treatments for nephrotic syndrome and, possibly, with further research, a cure.

The event took place over two days, with medical undergraduates and senior researchers presenting overviews of their projects.

Emma Whitehall, from the University of Sheffield, is looking at whether a natural Chinese herb can be used to treat polycystic kidney disease (PKD).

Dr Nimesh Patel is based at the Queen Mary University of London and is carrying out research aimed at decreasing mortality rates among kidney patients who develop sepsis.

Dr Sian Piret, of the University of Oxford, is investigating a rare kidney disease called familial juvenile hyperuricaemic nephropathy (FJHN), which is caused by mutations in single genes.

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OUR FOCUS ON... // P14

Can genetics provide the key to unlocking rare kidney diseases?

‘It’s all in the genes’, or so we’re told. But what exactly is genetics? Simply put, it’s the study of our genes: the biological coding which is responsible for determining everything about us, from gender to eye colour and even our susceptibility to certain kidney diseases.

Professor Tim Goodship, Chairman of Kidney Research UK and Professor of Renal Medicine at Newcastle University, is an expert in the field of genetics and tells us how this fascinating specialism is helping us to tackle rare kidney disease:

“This is an ancient immune system that identifies agents which cause disease and enables them to be destroyed. The system could also damage our own cells were it not for certain regulator proteins.

“My major research interest is renal genetics and throughout my career I’ve been particularly interested in an inherited condition called atypical haemolytic uraemic syndrome.

“The faults that we’ve found in the genes for these regulator proteins impair their activity and make our own cells – particularly those lining the kidney filters – susceptible to damage by complement. We’ve found such abnormalities in approximately 60 per cent of patients with aHUS and, knowing that over activity of complement predisposes to aHUS, looked to try and treat the condition with substances that block complement.

“Haemolytic uraemic syndrome (HUS) is a condition in which the blood vessels within the kidney’s tiny filters become blocked by blood clots and occurs most commonly following a gastrointestinal infection with certain strains of the bacteria E.coli.

“The bacteria release a toxin which damages the cells lining the blood vessels in the kidney filters, resulting in the blood clot.

Although individuals affected by this develop kidney failure, this is usually temporary and the kidneys recover. This form of the disease is called typical HUS. There is, however, a rarer form – atyplical HUS (aHUS) – where individuals sustain a similar kidney injury but without any preceding E.coli infection.

“The prognosis in aHUS is not so good, with a significant number of individuals needing long term dialysis. The outlook for kidney transplantation is also gloomy because the disease tends to recur quickly in the transplant. aHUS can run in families. By studying DNA samples from those affected, we have identified faults in genes which are responsible for producing proteins that regulate the activity of a system called complement.

“In fact, we have just participated in a worldwide study of a complement inhibitor called eculizumab. The results, which will shortly be published, have shown a dramatic response to this treatment.

“This breakthrough in the treatment of aHUS would not have been possible without the genetic studies that identified the faults in the complement regulators and I was fortunate to receive funding from Kidney Research UK to undertake these studies. Other studies funded by the Charity have also used genetics to identify the underlying molecular abnormalities responsible for a wide range of kidney diseases, including glomerulonephritis and diabetes, bringing us closer to new treatments for these conditions also.

“In addition to this research, the Charity has funded the collection and storage of DNA samples from individuals with rare kidney diseases – providing a unique resource for researchers wishing to study these illnesses.

“The Charity is also funding the establishment of registries of people in the UK with rare kidney diseases. This project called RaDaR (Renal Rare Disease Registry) will enable not only the collection of DNA samples for genetic studies but also identify patients who wish to participate in trials of new treatments, if and when they become available. If there were unlimited resources we would like to establish a biobank of samples from all patients with kidney disease for future studies.”

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

“This photograph of my Grandson, Lloyd, his girlfriend, Holly and myself was taken at London Bridges Walk 2012 – with Lloyd and Holly walking the course three-legged.

By putting it on Facebook, their university colleagues helped swell the sponsorship to over £500. The reason for walking was that I have another Grandson and Granddaughter-in-law suffering from polycystic kidneys.

I do volunteering, by regularly going to the General Hospital in Milton Keynes and the Community Desk at Milton Keynes Shopping Centre – plus fetes and any other venues – selling Kidney Research UK merchandise and ‘bric-a-brac’. My colleague, Irona, and I have also recently been to a school to highlight the Charity’s work.”

STAR LETTER !

Rosalie Osborne

Your tweets £98 has been raised by someone donating their old car to charity using Giveacar’s car donation service!

Giveacar (@Giveacar)

Launched my lithograph at Trinity Hall Cambridge last night for Kidney Research UK. Along with Richard Pitman, thanks to all that attended.

Liz Armstrong (@ArmstrongArt)

A massive THANK YOU to everyone who donated to our Great North Run efforts, we raised over £5,000 for Kidney Research UK. Thomas Waters (@_TomWaters)

The word on Facebook “In July, I was offered a London marathon place with Kidney Research UK. This week I found out I have a ballot place! So excited to do my first run for a charity close to my heart! Keep up the good work! : ).”

Michelle Krstic – 29 September

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“Thanks to all your hard work over the years, my Dad has now had his kidney transplant for 15 years, this month. He walked me down the aisle this year and is grandfather to my two beautiful nieces. Life-changing for all. Thank you x x x.”

Sarah Henbra-Vella – 17 September

Key Fact “My 11-year-old daughter did a sponsored silence at school as my Mothers’ Day gift. She didn’t tell me until after she’d done it and shocked me after she managed to raise nearly £100, which she wants to donate to Kidney Research UK! I’m super proud of her!”

Ellie Hickman – 27 March

Thanks to all Update readers who have made donations to the Charity, and particularly those took the time to write to us. As always, the author of our favourite letter receives a limited edition Kidney Research UK mug!

appeal is for g in is a r d n fu .

Our latest artha Stringer M d e ll a c l ir g a little suffers from d n a e in n st u .

Martha is j se called FSGS a e is d y e n id k a rare lp her, here: e h n a c u o y w ate Find out ho chuk.org/don r a se e r y e n id www.k Call our donation line: 0800 783 2973

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d n a n o ti p e c re y c a g le a t a s u Join s e v li e g n a h c n a c u o y w o h e e s

By leaving a gift in your Will you can ensure that years from now our researchers will find a cure that could save and transform lives, young and old.

Our legacy receptions are the perfect way to see just how your support would help. c

It’s FREE to attend and friends and partners are welcome too.

c

eet a researcher who has been funded by Kidney Research M UK, hear more about their work and how important your support is to their research.

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FREE tea, coffee and buffet lunch.

c

isit some of the UK’s outstanding V museums, spectacular galleries, and stunning buildings and explore them afterwards (varies from location to location).

PLAC E FILLI S NG FAST !

To find out more or to book a place at a legacy reception, please call: 0800 021 7707 or email: legacies@kidneyresearchuk.org

We are planning some fantastic receptions for 2013 in the following areas: London – January Warwickshire – February Berkshire – March Surrey – May Cambridgeshire – July Cheshire – September Visit our website below to see what superb locations we have chosen for you. www.kidneyresearchuk.org/ supportus

Registered Office: Nene Hall, Lynch Wood Park, Peterborough PE2 6FZ. Kidney Research UK is a limited company registered in England.

Registered company No. 905963 Registered Charity No. 252892.

Registered Scottish Charity No. SC039245

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