Update Magazine Autumn 2015

Update Autumn 2015 Issue 8

THE MAGAZINE FROM KIDNEY RESEARCH UK

BBC Lifeline Appeal Lauren Laverne PAGE 06

Welcome John Feehally

Christmas Gift List

Our fantastic fundraisers

PAGE 02

PAGE 08

PAGE 14

Welcome

to issue 8 of Update magazine Whilst I enjoy the summer months, I absolutely love this time of the year! Wrapping up warm, log fires, decorating the house for Christmas and spending time with my family. Anyway, welcome to your winter edition of Update.

So what has this edition got in store for you…

Earlier this year you may have seen our BBC Lifeline Appeal featuring the lovely Lauren Laverne? The appeal raised a fantastic £26,849.

Find out how Lauren would spend her perfect day, and how her dad’s kidney disease affected her whole family in our Big Interview on page 6.

I don’t know about you, but I always struggle for gift ideas for my friends and family at Christmas time. We have a range of gift ideas to inspire you, including the beautiful handmade kidney jewellery from LucyQ Designs on pages 8 and 9.

We have been asked previously to cover what happens if your transplant fails. This is quite an upsetting subject to cover, yet a very real one.

Christy, one of our Community Champions has kindly shared her story with us, and you can read about what helped Christy get through the challenges life had thrown at her on pages 10 and 11.

And last but not least, thanks to your support we have been able to invest a record £5.1 million into vital research this year. This would not have been possible without you. Thank you!

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

Contributors

Printed by

Angela Bolton Allison Parkinson Harriet Williams Aazam Ahmed

Print 4 Business Ltd

Matthew Roberts Designed by www.adeptdesign.co.uk

We would like to welcome Professor John Feehally, as our new Chairman of the board of trustees.

John is a Consultant Nephrologist and Professor of Renal Medicine at the University Hospitals of Leicester.

His own research over the last 30 years has focused on a common kidney disease, IgA nephropathy. He is a past President of the Renal Association, and more recently of the International Society of Nephrology.

He was also a founding member of the international committee which launched World Kidney Day. Through his current role as Programs Chair for the International Society of Nephrology he remains actively committed to supporting the growth of nephrology in the developing world.

Professor John Feehally

He has a long-standing, successful career in renal research, including international nephrology. John’s extensive experience in the renal world is enormously valuable to the charity and a significant contribution to the governance of the organisation.

Fellows day 2015 Renal researchers are striving to change the lives of people living with kidney disease and nowhere is this more apparent than at Kidney Research UK’s annual Fellows Day conference.

This unique event brings together researchers at different junctures in their careers, from intercalated BSc medical students to those undertaking Postdoctoral Fellowships, to the leading nephrologists in the UK, as well as patients living with kidney disease and charity representatives.

This year’s Fellows Day was held at the University of York in September and almost 100 attendees enjoyed a packed programme of oral and poster presentations and keynote speeches from experts in renal research.

The event provided a fascinating insight into some of the research Kidney Research UK is funding, the standard of all presentations was very high, and the feedback was very positive.

Thanks to the generosity of our supporters, we were able to raise over £9 million for Kidney Research UK last year. This enabled us to continue our current projects and release a further £5.1 million into new research grants, an increase of £550,000 over 2013-14. The number of grants that we could award increased yet again, including our intercalated degrees, which help trainee doctors develop an interest in renal research.

Nicola Davies, Editor

Photographers

Welcome John Feehally

Contact us Kidney Research UK Nene Hall, Lynch Wood Park Peterborough PE2 6FZ Tel: 0845 070 7601 Fax: 0845 604 7211 www.kidneyresearchuk.org

Find out more: www.kidneyresearchuk.org

NEWSROUND // P03

Team challenge targets kidney disease A team of accountants from Afford Bond in Nantwich recently took on the gruelling Yorkshire Three Peaks Challenge event for Kidney Research UK, walking 24 miles up to heights of over 5,000 feet in less than 12 hours.

They were keen to support our fight against kidney disease because one of their Senior Directors, John Clarke, had been on dialysis for several years. He recently received a kidney from his brother in law and was well enough to travel to Yorkshire with his wife Michelle to cheer the team on.

“It gave the whole team a huge lift to see them,” says Director Paul Edwards. “Even though we were starting to feel the miles on our legs it gave us the lift we needed to carry on.”

The event, organised by Senior Manager Sarah Fern, broke its £5,000 fundraising target by more than £2,500 and money is still rolling in.

Sarah says: “It was great to be a part of this. All of the team worked really hard before the event and everybody gave their all on the day. We were all determined to finish the walk as Kidney Research UK means so much to us all’. c Turn to page 14 to read more inspirational stories from our fantastic fundraisers

Specsavers Opticas Mallorca raise €1,300 for Kidney Research UK After donating one of his kidneys to his brother in law, Martin Blake, Store Director of Specsavers Opticas in Santa Ponça has been fundraising for Kidney Research UK with an event in store and campaign to collect donations throughout July. As a result of their hard work and the community’s support they have raised €1,300.

Martin Blake commented “We all feel great to have raised so much and would like to say a big thank you to everyone who got involved. Due to our personal connection with the cause we’re committed to supporting the charity and have set ourselves the challenge to raise €2,000 next year and will be organising another great event in autumn 2016.”

Afford Bond , Nantwich

Dates for your diary 2016

World Kidney Day March 10

London Marathon 24 April

London Bridges Walk 3 July

British 10k 10 July

London Ride 100 31 July

Call our donation line: 0800 783 2973

HOW YOUR MONEY’S HELPED // P04

g n i g r Our ound- break research is re-writing the medical textbooks A scientific study, funded by you, has significantly changed our understanding of cystinuria – a hereditary and rare form of kidney stones which, if left untreated, can lead to kidney failure.

Dr Hannah Rhodes

Your support enabled us to invest £200,000 in the two-year research project which saw Dr Hannah Rhodes, a Kidney Research UK fellow and Professor Richard Coward, of Bristol University collaborate with Dr John Sayer, Senior Clinical Lecturer in Nephrology at Newcastle University.

The team came together through their involvement in the Rare Disease Registry (RaDaR) – a database that catalogues detailed information about rare kidney diseases in the UK and also enables medical professionals and patients to share knowledge, ideas and expertise.

They studied the genetic information from 76 patients in the North East and South West of the UK who had been diagnosed with cystinuria and their findings have shed new light on the causes and effects of the disease. They now hope this new information will help clinicians to diagnose the condition earlier and create more targeted treatments for patients.

Find out more: www.kidneyresearchuk.org

The study has now been published in the highly prestigious Clinical Journal of the American Society of Nephrology and has generated interest from patients and physicians worldwide.

Dr Sayer explains: “Our study showed us just how important it is to do genetic testing because you can’t make any assumptions.

Part of our work involved defining every patient’s genetic type but it was much more complicated than we expected. If you read a textbook it says you need two faulty copies of a particular gene but what we found was that some patients just had one faulty copy of the gene and this was sufficient to cause the disease, while some patients had three faulty copies of the genes involved.

Our study showed us just how important it is to do genetic testing because you can’t make any assumptions.

Dr John Sayer

HOW YOUR MONEY’S HELPED // P05

But we found that quite a lot of patients were diagnosed after 40,” adds Professor Coward.

“So this is a disease that everybody should think about, especially since 10 per cent of the population gets kidney stones – that’s a lot of people in the UK. This really is an important condition that we should recognise, follow up and treat optimally.”

The next step

The study also revealed wide variations in the treatments being offered, with many doctors prescribing a foul tasting and unpopular syrup to make urine more alkaline.

Dr Sayer says: “There’s currently a real mish mash of treatments with no uniformed approach so there is much more room for improvement to get patients on more established treatment regimes that will hopefully work.”

“People also tend to think of kidney stones as painful things that don’t tend to do the kidneys much harm. But we had a set of patients in the study that had complete kidney failure from cystinuria, while others had quite significant chronic kidney disease. Again textbooks don’t tell you about that either.”

“As cystinuria is an inherited condition, you’d have thought that most of the cases would be in young people and children.

This really is an important condition that we should recognise, follow up and treat optimally.

Professor Coward and Dr Sayer now aim to plan a clinical trial to test treatments in this condition. They will be asking patients and other health professionals for their views at a special patient information day in Newcastle on March 5 2016.

“It might be as simple as conducting a clinical trial involving the use of drugs that bind cysteine in the urine and make it more soluble, rather than prescribing the foul tasting syrup,” says Dr Sayer. “But it will be up to the patients to decide.” c T he Clinical Journal of the American Society of Nephrology is not openly accessible but an abstract of the team’s study can be found at http://tinyurl.com/ppol8oz For more information please go to: www.eventbrite.co.uk/d/united-kingdom/ cystinuria

Your support enabled trainee paediatric surgeon Dr Hannah Rhodes to take time out of her clinical training and perform this study as part of her PhD.

Cystinuria fact file

“This large, multi-faceted project enabled me to get a wide experience of many different elements of research including setting up a national patient registry, obtaining ethical approval for the study, genetic testing and laboratory techniques, says Dr Rhodes.

c It affects approximately 1 in 10,000 people.

“I can now take all of these skills forward in my clinical work and in future research.

For example, a lot of conditions we deal with in paediatric surgery and urology are congenital or inherited so I now feel I’m in a really good position to apply my acquired knowledge of genetics to other clinical conditions.”

c Cystinuria is a rare inherited condition which is caused by mutations in the SLC3A1 or SLC7A9 gene.

c The disease is characterised by the buildup of the amino acid cysteine in the urine. Rather than being reabsorbed into the bloodstream, cysteine forms crystals or stones within the urine as it passes through the kidneys which can cause kidney damage and even kidney failure.

Cystine stones passed by a patient over a two month period.

Be part of the next scientific breakthrough You could help us fund more ground-breaking research projects that could help save lives.

Please make a donation at www.kidneyresearchuk.org/donate

Professor Richard Coward

Call our donation line: 0800 783 2973

THE BIG INTERVIEW // P06

Lifeline Appeal Lauren Laverne Radio and TV presenter Lauren Laverne recently told the nation about our Making Every Kidney Count appeal when she hosted the influential BBC Lifeline Appeal, a 10-minute TV programme which was broadcast on BBC One and BBC Two in July.

Kidney disease is a subject she cares about deeply after her father suffered kidney failure last year and became one of the 27,000 people in the UK on dialysis.

We caught up with Lauren recently to find out more about her dad, her passion for music and her heroes.

Find out more: www.kidneyresearchuk.org

THE BIG INTERVIEW // P07

Kidney disease is a huge problem that is massively on the rise, yet awareness and funding are lacking.

Q

Q

I had known that he had kidney problems for a few years, though the problem itself went back a long time. My parents hadn’t wanted me or my brother to worry, so didn’t tell us about it until we were grown up. Then in the autumn of 2013 he had to have a kidney removed. It was hoped this would improve his health, but in fact his remaining kidney deteriorated rapidly and he was very ill, and hospitalised over that Christmas.

With my family. Hanging out, laughing, reading, listening to music, eating too much and watching the kids play. If it’s near a beach, even better!.

When did you find out about your father’s condition?

Q

How did you feel?

Really awful. I was so worried about him, and my Mam. Plus I was stuck in London looking after my sons and working a lot of the time, which was awful. The distance doesn’t normally make much difference, but obviously at times like that it feels huge.

Q

Did you know anything about kidney disease prior to his diagnosis?

A little. We don’t all have great kidneys in our family, unfortunately ... I know much more now.

Q

Why did you decide to support Kidney Research UK?

For my Dad, really. I wrote about the changes to NHS dialysis commissioning for The Observer Magazine last year, and talked about what happened to him, and Kidney Research contacted me after that. Kidney disease is a huge problem that is massively on the rise, yet awareness and funding are lacking.

Plus people aren’t registered organ donors, or don’t understand they can become living donors if they want to. There’s quite a long way to go with it all, and they asked me to help out so of course I said yes.

How would you spend your perfect day?

Q

What is your ideal weekend soundtrack?

It depends on the weekend! Soundway records Kenya Special compilation is my go-to Sunday afternoon record.

Q

What has been the highlight of your career so far?

Getting to interview so many of my heroes. Paul McCartney, Smokey Robinson, Iggy Pop, Stevie Wonder, Patti Smith, Madonna, Meryl Streep and Beyoncé ... it’s such a privilege to do my job. I love it.

Q

Who is your hero?

I have so many, apart from those mentioned above. And of course the people in my own life who are my heroes – like my Mam and Dad, who are so kind, clever, hardworking and funny.

They inspire me the most.

Q

Are there any bands you’ve not yet seen that you are desperate to see?

I’m very lucky to get to see a lot of the bands I really love live as part of my job. I’m hoping to see Sufjan Stevens play live when he comes to London this autumn. And there are tons of artists I haven’t caught yet – Blick Bassy’s new record Ako is just gorgeous. I’m off to see him very soon and can’t wait.

Q

If you had the chance to go back and talk to your 20 year old self, what advice would you give?

Be brave, be bold and trust your instincts.

Read more. Learn to cook as soon as possible.

Stop spending time with people who are not kind, especially that one particular guy.

Q

2016 is fast approaching, have you made any New Year’s resolutions yet?

I always make a list! Well, I usually do.

The New Year my Dad was in hospital and we’d just found out he was going to be ok I only had one thing on it which was “Appreciate the beauty in what I already have and where I already am.” That’s top of my list every year now.

You can watch the BBC Lifeline Appeal programme on our website www.kidneyresearchuk.org/bbclifeline Our Making Every Kidney Count appeal is committed to raising £3 million to accelerate ground-breaking research in the area of transplantation. You can support our appeal by making a donation today.

Visit: www.kidneyresearchuk.org Call: 0800 783 2973

Call our donation line: 0800 783 2973

HEALTH & LIFESTYLE // P08

Gifts from

Mini Club Baby Unisex Hat Christmas Pudding

£7

Find out more: www.kidneyresearchuk.org

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.

Vtech Kidizoom Duo Digital Camera Blue

£49.99

No7 Men’s Manicure Kit

£8

Ted Baker Men’s Redbridge Duo

£8.50

HEALTH & LIFESTYLE // P09

Courgette and brie soup with toasted almond brie croutons Manchester born BBC fusion chef, Aazam Ahmed, serves up a delicious winter warmer recipe, and Harriet Williams Clinical Dietitian Renal Lead and Chair of the Renal Nutrition Group, tells us how to make it more kidney patient friendly.

Reiss Nail Paint A/W Collection

£20

mad

Chef Aazam Ah

Ingredients 500g Grated courgette 200g Brie c 100g Chopped leeks c 50g Carrot chopped c 1 litre Vegetable stock c 4 tbsp Vegetable oil c 2 tbsp Cornflour c Seasoning c c

D&G EDP Exclusive Set

£97

Method Sanctuary Signature Candle

Champneys Heavenly Days, Bath Crystals

£6

£6

Soup c

ently fry the leeks, onion and carrots first until they are G transparent then add the courgette and cook further 2-3 minutes.

c

ow add the stock and bring it to the boil and simmer N for 25-30 minutes.

c

arefully blitz / blend all the ingredients and return to the heat.

C Add the cornflour to thicken to a coating consistency.

Toasted Almond Brie Get your grill nice and hot, mean time slice your bread or French stick in to thick slices of about 1 inch and place thinly sliced brie on one side, topped with almonds under the grill. Toast and serve hot with your soup. This really is the cherry on top of the cake.

Using the middle of the cheese and not the rind roll little balls or nuggets and drop them in the hot soup before serving.

Comments from Harriet:

LUCYQ Kidney Cufflinks

Kidney Necklace

If you are on a low potassium diet it’s best to pre cook the vegetables to wash out some of the potassium before making the soup. Using a large pan of boiling water, blanche the vegetables for a couple of minutes before draining in a sieve and then using in the recipe.

Brie contains half the phosphate of hard cheeses so it can be eaten in moderation if you are on a low phosphate diet. If you’ve had a transplant – be sure to check that the brie is pasteurised.

If making vegetable stock using a stock cube, check the labels on packets to choose the one which is lowest in salt.

£165

£90

www.lucyqdesigns.co.uk

(20% of profits go to Kidney Research UK)

Remember this will count towards your fluid restriction (if you have been advised to follow one), so budget for it by cutting down on other drinks during the day.

Nuts are high in potassium and phosphate, a small scattering of flaked almonds is ok – try not to have more than this.

Call our donation line: 0800 783 2973

FOCUS ON... // P10

What happens when transplants fail: Christy’s story A kidney transplant can herald a fresh beginning – a new and active life, totally free from the restraints of long-term dialysis.

But what happens if the new kidney fails?

Christy Millar was faced with this question in 2009 when her new kidney failed due to complications arising from the operation itself. She spent five more years on dialysis before receiving her second successful transplant in September 2014.

After everything I’ve been though I’ve learned to try to stay as positive as possible but also remain realistic too because sometimes things don’t go the way you want them to.

Now a Community Champion Volunteer for Kidney Research UK, Christy raises money for the charity and raises awareness of kidney disease whenever she is able. She also writes regular blogs about her ongoing adventures with ‘Betty’ her new kidney.

“My life completely changed in 2006,” says Christy. “My appendix ruptured and the subsequent blood poisoning left me in hospital for six months. Complications following surgery resulted in complete kidney failure and I had to begin an exhausting dialysis routine immediately – three days out of every week.

“My husband Steve, who was my boyfriend at the time, was desperate for me to be spared from the regular dialysis so he offered to donate one of his kidneys. He turned out to be a perfect match but Steve’s kidney worked for just 30 seconds due to complications arising during the operation itself.

Find out more: www.kidneyresearchuk.org

Christy and Steve Millar on Christy’s first post-transplant holiday

“We just couldn’t believe this was happening to us. I was in exactly the same situation as I was before the operation but now Steve had lost a kidney. We were crushed.

“I had no option but to go back to the same dialysis regime as before but I wanted to get back on the transplant list as soon as I

was well enough to do so. I got called in as a reserve for a potential transplant after being on the list for three years but it wasn’t to be that time. Finally, two years later, I got Betty.”

It hasn’t been an easy ride for Christy and Betty. She has been hospitalised with potentially life-threatening blood pressure levels and has also had to endure several more operations as a result of her original illness, coupled with side effects from some of her immunosuppressant drugs.

“After everything I’ve been though I’ve learned to try to stay as positive as possible

FOCUS ON... // P11

Help us provide hope for the future Ground-breaking research is already underway which could change the way transplants are carried out forever. It may, one day, even make the transplant waiting list a thing of the past.

Scientists are using new techniques to make more kidneys available and viable for transplant; exploring new ways to extend the lifespan of transplanted kidneys.

but also remain realistic too because sometimes things don’t go the way you want them to,” says Christy.

“I’m lucky that I’ve got a great family and group of friends that support me but if you want to live you just need to keep going. I like being alive too much to give up!

“I would recommend anyone going through a similar situation to mine to write a bucket list. I’m glad I wrote one, I think it gives me things to aim for. Plus it’s very satisfying crossing things off it.

“I’ve already done white water rafting and indoor sky diving and I’ve been up in a hot air balloon and visited the Blue Mosque in Istanbul. Next year we hope to spend three months in Japan, New Zealand and Australia if me and Betty are well enough – so fingers crossed!”

Christy has no idea why she chose the name Betty for her kidney.

“The donor was actually an elderly man but for some reason the name Betty just stuck,” she says. “So, as well as my Kidney Research UK blog I’ve now got my own personal blog called ‘The adventures of Betty the kidney’.

“I like writing blogs because I’ve always loved writing and I like helping other people too. I’ve got to know quite a few transplant patients from around the UK and abroad – and some cystic fibrosis patients too. We’ve got our own little online community.

There’s a really good Facebook page called Women’s Renal Failure – it’s nice because you can ask anything.

“I think it’s good to talk to people who’ve had similar experiences but sometimes it can bring you down when it gets too much so I just dip in and out of some of the online groups and leave the ones that are too miserable!

“I’ve been a Kidney Research UK volunteer for years and I love getting involved with people locally. I recently held a family fun day event at Ellesmere Port in Cheshire. I’ve never arranged anything so big. It was exhausting, it was traumatic… actually, it was great fun!”

To follow Christy’s blog visit www.kidneyresearchuk.org/ blogs/christy-millar

You could help us fund the next vital study. Please make a donation at www.kidneyresearchuk.org/donate

Support for you If you or a loved one have been affected by any of the issues raised in this article, you can get information and advice from our website www.kidneyresearchuk.org/ health-information/kidney-transplantation and from the following organisations: The British Kidney Patient Association (BKPA) c www.britishkidney-pa.co.uk/patient-info c BKPA Support phone line (offering a free

counselling and support service): 01420 541 424 The National Kidney Federation (NKF) c www.kidney.org.uk c Helpline (freephone UK Landlines):

0845 601 02 09 The National BAME (Black, Asian and Minority Ethnic) Transplant Alliance (NBTA) c www.nbta-uk.org.uk

NHS Blood and Transplant (NHSBT) c www.nhsbt.nhs.uk c 0300 123 23 23

Call our donation line: 0800 783 2973

RESEARCH ROUND UP // P12

Research round up – innovative projects funded by you Three exciting new studies, funded by you, could lead to the discovery of new and improved treatments for kidney disease.

This ground-breaking research may ultimately save and transform lives, young and old.

We urgently need your help Right now, the lives of over three million people in the UK are threatened by kidney disease. We need your continued help to fund more research into better prevention, treatments and ultimately a cure.

There are many ways in which you can support us including leaving us a gift in your Will, supporting our appeals, arranging monthly donations or making a single donation.

For more information: Visit: www.kidneyresearchuk.org/support-us Call: 0300 303 1100

Zebrafish study may lead to a clearer understanding of kidney cell function A small tropical freshwater fish may hold the key to the development of new treatments for renal vascular disease and abnormally high blood pressure (hypertension).

Professor John Mullins and Dr Sebastien Rider from the University of Edinburgh have developed a new process which will enable them to study how zebrafish – which are transparent during early life – store and secrete an enzyme called renin.

We have given them a £125,470 research grant so they can use this process for the first time in a new two-year study which aims to discover how renin is made, stored and secreted in specialised kidney cells called juxtaglomerular cells (JG cells).

Renin plays a vital role in the regulation of blood pressure through a process called the renin-angiotensin-system. This system often “resets” itself to neutralise drug treatments which adversely affect blood pressure.

It has been extremely difficult to study JG cells in the past but Professor Mullins and his team, in collaboration with Dr Helen Christian from Oxford University, hope that this new process will enable a clearer understanding of how zebrafish JG cells work. This will, in turn, shed more light on how human JG cells process and release renin.

Their research findings could eventually lead to new treatments for renal-vascular disease and hypertension.

A blood vessel with renin-producing JG cells highlighted in red

Find out more: www.kidneyresearchuk.org

RESEARCH ROUND UP // P13

New fruit fly study to investigate diabetic kidney disease

New study could lead to rare disease treatment breakthrough

The humble fruit fly is at the centre of a 12-month project which could eventually pave the way for new and improved treatments for diabetic kidney disease – a leading cause of kidney failure worldwide.

Podocytes are specialist cells that are essential for preventing protein leaking into the urine (a condition known as proteinuria) and maintaining normal kidney function. However these cells stop working properly in patients with diabetic kidney disease because their bodies stop responding to insulin, or can’t produce enough of the hormone.

Fruit flies have podocyte-like cells called nephrocytes which can be quickly and easily studied and we have awarded a £35,900 innovation grant to Dr Paul Hartley and his team from the University of Bournemouth to investigate how insulin affects these cells.

They want to find out what happens to the nephrocyte cells when insulin signalling (messages sent by insulin to the cells to ensure that they function properly) is disrupted.

Fruit flies share 75% of the genes that cause disease with humans so, by gaining a better understanding of how insulin affects nephrocyte cell function, the team hope to shed more light on how insulin signalling affects human podocyte cells.

Dr Hartley hopes that this study could ultimately reveal new ways to control podocyte cell function and so prevent proteinuria and kidney failure from occurring.

Podocyte cells. The fluorescent areas highlight how specific genes can be controlled in a lab setting.

UMOD

We are funding a one-year pilot study which could help to find a way to slow down or eventually even prevent the kidney damage associated with uromodulin (UMOD) nephropathy – a rare inherited condition that currently has no effective treatments or cure.

Why the kidneys fail in UMOD nephropathy, and why it is associated with gout, are unknown. Problems can start in childhood and there is usually kidney failure by middle age.

Patients have a reduced quality of life and currently live with a ‘ticking time bomb’, knowing they face the prospect of being dependant on dialysis or receiving a transplant to keep them alive.

Professor Fiona Karet and her team at Cambridge University have identified mutations in the UMOD gene that cause the disease.

Each affected person has one copy of the normal gene and one that contains a reading error. We have given them a £77,412 research grant to explore if these mutations can be switched off, initially in kidney cells grown in a dish.

They plan to do this by creating strands of DNA called antisense oligonucleotides (ASOs) that they hope will bind to the faulty gene and deactivate it – rather like turning a light off. This should then restore normal function of the UMOD gene.

They hope their research findings will move us closer to offering patients hope of a treatment that will slow down or even cure this cruel disease.

Call our donation line: 0800 783 2973

FOCUS ON... // P14

Our fantastic fundraisers Every year, thousands of people take on personal challenges to raise as much money as possible for Kidney Research UK. Each person has their own unique reason for supporting our charity but all are united in their desire to fund vital kidney research that will save lives.

Gary Froy devised Challenge271 in memory of his dad Colin who died in December 2013 after “many years of trauma from kidney failure’’.

Gary explains, “I decided to tie in Dad’s love and passion for his job as a police officer with a personal challenge in order to put myself through some of the pain he went through in his final years.

I hope the money raised will go some way to helping find a cure for kidney related diseases, in order that other families don’t have to suffer as we have.

I took the collar number Dad proudly wore for 40 years, 271 and combined it with the place he loved to visit more than anywhere else, Cromer. So Challenge271 had me running a marathon, cycling 73km, running a second marathon, cycling 73km and finally running a third marathon in just five days – covering a total of 271km.”

On 29 July Aaron Jackson and friends Ben Charles, Matthew Bucknall, and Ali Chapman set off from the small Cotswold market town of Lechlade to cover the 150 miles of the River Thames to London in an open rowing boat.

After months of relentless training and fundraising with his mum, Gary’s Challenge271 began in Cromer, Norfolk on 26 May and finished in Watford High Street on 30 May.

They planned their Length of the Thames Challenge as a direct and defiant response to kidney disease and ended up doubling their initial £1,000 fundraising target.

“We aimed to raise £17,204 – signifying Dad’s 40 years as 271 when read backwards – but in the end we raised over £22,000 and a lifetime of memories,” says Gary.

“Dad was a hero, a man who would do anything for anyone else. I hope the money raised will go some way to helping find a cure for kidney related diseases, in order that other families don’t have to suffer as we have.”

For more Challenge271 images go to www.youtube.com and type in ‘Challenge271’

The keen rowers overcame locks, blistered hands, and sore legs and backs to land, tired but triumphant, near Tower Bridge on 1 August.

“As a healthy active man, I never thought that I could be a candidate for it until I was diagnosed with chronic kidney disease and acute focal segmental glomerulosclerosis following routine blood tests,” says Aaron.

“But I’ve learned that with the support of family, friends, and the wonderful doctors and nurses of the NHS these things can be managed and moderated.

“All four of us undertook this challenge to show that you don’t have to be defined by a disease just because you have it; to show that life is in the living of it, and that challenges like kidney disease are things that we can face and overcome together.”

Aaron, Ben, Matt, and Ali

Get involved too Sign up to take part in one of our events or organise your own fundraising challenge – you’ll be making a real difference to those threatened by kidney disease.

We’ve put together a fundraising toolkit which is packed full of ideas, hint, tips and fundraising stories. So whether your plans are big or small, this is the guide for you!

For further information visit: www.kidneyresearchuk.org/get-involved/fundraising-ideas

Find out more: www.kidneyresearchuk.org

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.

We write following our celebration of our 10th Wedding Anniversary, where we held a church blessing to renew our vows followed by a reception at Nottingham Forest Football ground.

R STA R! TE LET

Instead of receiving gifts from our guests, we decided to ask for donations to two charities close to our hearts, one being Kidney Research UK.

Star Tweets Thank you @Kidney_Research for your support yesterday!

Loved the massage! You caught sheer relief with this picture!

My dad completed his last of four races for @Kidney_Research last Friday! He’s raised over £3,000 so far.

Melanie Flowers @mel_f2

Jack @Jackadder1

As a dialysis patient myself for the past 20 years, both my husband and I appreciate all the hard work you do to raise awareness and support others.

My mum passed away 10 December 2013, who was also a dialysis patient, who would have loved our special day.

We had a great day, which was captured by a fantastic photographer.

We received donations from our blessing totalling £289 and further donations were made directly.

Finished the @Kidney_Research Doughnut Dash! A fantastic day, some yummy treats and all for a good cause! Thank you!!

Keep up the good work!

Our pin badges can make great wedding favours!

Call our supporter care team on 0300 303 1100 to find out more.

Maria Mayhew @mayhew_mm

Loved the #BBCLifeline appeal for @Kidney_ Research, so poignant and only confirms how vital the @NHSOrganDonor is #EveryKidneyCounts.

Sadie Olivia Wandrum @SadieOlivia_

Call our donation line: 0800 783 2973

Make your Christmas shopping count for something very special You get top-quality cards and gifts, and people like Stevie get hope for a brighter future.

• Christmas cards • Gift wrap • Advent calendar • Christmas crackers • And much, much more…

Help fund life-saving research this Christmas

View our Christmas range at:

www.kidneyresearchuk.org/shop

Follow us on: Registered Charity No. 252892, Scottish Charity No. SC039245