Update Summer Issue 16

Summer 2018 Issue 16

THE MAGAZINE FROM KIDNEY RESEARCH UK

KIDNEY DISEASE AND PREGNANCY: ONE FAMILY’S AMAZING STORY PAGE 04

Why you should do the Bridges Walks

Baby Ruby takes it all in her stride

Revolutionary research discoveries

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NEWSROUND // P03

Welcome Welcome to the latest issue of Update.

It’s so rewarding sharing the stories of people whose lives have been changed through our research.

In Hannah’s case, her chance to start a family may have never come if she hadn’t been able to have a transplant thanks to the introduction of a new drug for her rare form of kidney disease. Baby Florence was the amazing result, as you can see on pages 4-5.

Stay in touch

Roving for research

We’re always keen to hear from our supporters and it’s never been easier to get in touch. You can follow us on Twitter, where we’re @Kidney_Research, and we’re also on Facebook, Instagram and LinkedIn. If you’d like to send us a letter, the address is: Update Magazine, Kidney Research UK, Nene Hall, Lynch Wood Park, Peterborough PE2 6FZ or email: pressoffice@kidneyresearchuk.org.

This month a group of supporters will set off on an epic journey across the country to raise awareness and funds for Kidney Research UK.

Star Tweet

Little Ruby Simpson has had a rough start to life, being born with congenital nephrotic syndrome. Our pioneering biobank has the power to change her future for the better – see pages 14-15.

Alongside stories of success, other research reveals the grim realities facing patients and can be a hard read. On pages 6-7 you’ll see Dr James Fotheringham and Dr Mark Findlay are helping us to identify the complications of dialysis and how to develop clinical practice to improve quality of life and outcomes for patients. Only by shedding light on the limitations of treatments such as dialysis can we hope to improve them. Their work also illustrates how crucial anonymised patient data is to help us find trends and seek answers.

Other research is longer term, such as the journey in regenerative medicine and stem cell research. Being able to grow replacement kidneys or useable kidney tissue (pages 12-13) may be some years off, but it’s awe-inspiring stuff.

We know though, that many patients cannot afford to be patient; they simply do not have the time. We have to work faster and your urgent help is needed.

Some people are going to amazing lengths to help us – by cycling to Helsinki and kayaking across Canada and the USA – as you can see on the page opposite.

Anyone can make a difference. Whether you choose to donate to our appeals, or raise invaluable sponsorship through taking part in our fabulous Bridges Walks shown on pages 8-9, we really appreciate your support.

Rosie Contributor Allison Parkinson

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

Designed by www.adeptdesign.co.uk

Tel: 0300 303 1100 www.kidneyresearchuk.org

Editor Maria Thompson

Find out more: www.kidneyresearchuk.org

“We will be avoiding major roads and motorways as much as possible. The kidney shaped route will take us around the UK, covering about 2,500 miles, taking us over all types of terrain. We will be camping out in the Great British wilderness.

Happy birthday to my bestest bud @alexolivant! đ&#x;Ž‰ Since my kidney function started to decline, I wanted to raise as much money as possible for @Kidney_Research. More about how later, but Alex raised over ÂŁ500 by doing #runforresearch Have a good day @ActiveBPFarming

Barry said: “A long time ago my father had a transplant but it didn’t work. I was 16 at the time and the doctors said to me don’t worry if it happens to you – by then there will be better ways to transplant kidneys.

Matthew Denby via @FarmersOfTheUK

“But when it did come to me needing treatment for the hereditary condition of polycystic kidney disease, I found myself taking the same medication my dad was given and realised nothing had changed.�

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“We want to raise awareness and a substantial amount of money for Kidney Research UK.

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2018 - issue 15 REPRO.indd

THE MAGAZINE FROM

Diabetes study could have global significance

Dame Jacqueline Wilson talks about her kidney transplant

1

Event (Location)

Date Type

London Bridges Walk (London)

1 July

British 10K (London)

15 July

10 km run

Ride London 100 (London)

29 July

100 mile cycle

Great North Run (Newcastle)

9 Sept

13.1 mile run

Glasgow Bridges Walk (Glasgow)

14 Oct

7 mile walk

Race For Research (Anywhere)

January 2019

26.2 mile run

Race For Research (Anywhere)

January 2019

50 mile walk

Race For Research (Anywhere)

January 2019

100 mile cycle

7 mile walk

“We will visit UK transplant centres for both mainstream and children’s hospitals as well as other locations to raise money while spreading the name and work of Kidney Research UK and Kids Kidney Research.�

Barry added that the challenge celebrates the lives saved by transplant, those still waiting and the many friends and relatives lost along the way.

He will be joined on this journey by friends Stuart Mason and his 1958 Series 2,

One man, his kayak and 6,000 miles of North American water A 15-month, 6,000+ mile kayak trek through the waterways of the eastern seaboard of America and Canada is Steve Chard’s dream come true.

Spring 2018 Issue 15

Diary dates 2018/19

Rosie Loft, Communications Manager pressoffice@kidneyresearchuk.org

Led by transplant patient Barry Jacobs, the group of Land Rover Defender enthusiasts will drive their vehicles over 2,500 miles visiting renal transplant centres between June 23 and July 8.

KIDNEY RESEARCH UK

Steve is kayaking what is known as The Great Loop. He started in Halifax, Nova Scotia, on June 1, and will finish at the same place in September 2019, having kayaked through four Canadian provinces and 22 US states.

MEET ISABELLA AND OUR OTHER YOUNG HEROES PAGE 08

DJ Danny Howard and fundraising in memory of his father

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06/02/2018 12:34:38

For Steve, this extreme challenge is his way of celebrating his retirement and he’s doing it for charities close to his heart, including Kidney Research UK. After a career in the Royal Navy, in 2005 Steve started work as a healthcare assistant for Dorset County Hospital in the renal ward and on the haemodialysis unit. “The amount of time you spend with a patient, their family and friends, in such difficult circumstances, makes you become very close to them. You see people when they are their most vulnerable. “Wanting to help kidney patients has stuck with me. Hence my ongoing fundraising for kidney charities.� “It’s a bit scary as I’m doing this by myself. But as I’ve shared my story on

social media, so many people have been in touch offering help and support for when I pass through their local areas.�

Steve’s daily plans are totally dependent on local weather. “Essentially, I’ll be living by the weather forecast. If it’s more than a Force 4, I’ll not be able to be on the waterways. “I aim to be in Chicago by the end of September because I must be off the Great Lakes before they begin to freeze over in October.� www.justgiving.com/fundraising /kayaker-steve

Dr Jonathan Levy and his Defender 90, Mat Hobbs, Simon Michaels, Paul Lawrence and many others.

The group plan to publish a list of dates, times and places so supporters can visit them on our way around the UK. You can support the campaign by donating through JustGiving at www.justgiving.com/ fundraising/defenders4kidneys and you can follow them on Twitter @DKidneys

Your data matters The General Data Protection Regulation (GDPR) is a new EU law that came into effect on May 25, replacing the current Data Protection Act. It’s an update to existing data protection laws and places renewed focus upon individuals’ rights.

Kidney Research UK takes our supporter’s privacy very seriously and this new law will provide greater protection of your personal information. There may be occasions when we will need your consent and will always ask before we communicate with you for this purpose. For example, we will only email or phone you about our fundraising activities if we have an accurate record of your recent and freely given consent to do so.

Sandra Currie, Chief Executive of Kidney Research UK, said: “We work to the highest standards in order to meet all our legal obligations and our stakeholders’ expectations. We have worked hard to ensure our communications comply fully with the law – this is a priority for us. And supporters who entrust us with their health data can be reassured that the storage and handling of this data is subject to the most stringent policies and permissions.�

If you would like to find out more about how we store, use and collect your data you can view our updated privacy policy, here: www.kidneyresearchuk.org/privacy

To donate to Kidney Research UK call: 0300 303 1100

HOW YOUR MONEY’S HELPED // P04

The power of research Thanks to funding provided by Kidney Research UK, the team at the National Renal Complement Therapeutics Centre (NRCTC) at Newcastle University discovered the cause of aHUS, which ultimately resulted in a treatment to prevent kidney failure. aHUS is a condition in which the blood vessels within the kidney’s tiny filters become blocked by blood clots. Historically the prognosis in aHUS was not good, with most patients requiring long-term dialysis. The outlook for kidney transplantation was also poor, as the disease quickly recurred causing the transplant to fail.

By studying DNA samples from those affected, the Newcastle team identified faults in genes in the ’complement’ system – part of the immune system that fights infection.

The complement system is centred around a substance called C3, which coats and destroys viruses and bacteria. Our bodies naturally produce protector proteins that prevent the C3 from attacking our own bodies. However, some people have a genetic fault that stops these proteins working. As a result, the complement system attacks the body’s own cells, especially those that line the blood vessels, and this leads to clots in the filters of the kidney.

This key discovery of the role of complement in aHUS highlighted the potential of a preexisting drug – Eculizumab, a drug that works by blocking the complement system.

Professor David Kavanagh said: “aHUS is a great example of how Kidney Research UK has helped to revolutionise patients’ lives.

The funding from Kidney Research UK to the NRCTC over the past 15 years led directly to a treatment that can prevent kidney failure.”

Kidney Research UK continues to fund research at the NRCTC with Dr Vicky Brocklebank, a clinical research fellow, investigating pregnancy and aHUS to allow more patients like Hannah to have happy, healthy babies.

Find out more: www.kidneyresearchuk.org

HOW YOUR MONEY’S HELPED // P05

How research shaped the lives of baby Florence and her amazing mum When her family were told her kidney function was in decline, the research into a treatment which would save a young mum’s life hadn’t even begun.

Every kidney patient has a story to tell, but Hannah Skeet’s is made all the more remarkable by the fact that she became a mother when all the odds were stacked against her.

Hannah, a nurse from Lincolnshire, was diagnosed with a very rare disease called atypical haemolytic uraemic syndrome or aHUS. aHUS is a serious condition affecting around 200 people in the UK.

Hannah’s kidney function had been in decline since she was 18 months old culminating in a transplant, donated by her mum, in 2011.

Hannah said: “Two years after the transplant I started to feel unwell.

My consultant thought it was either rejection of my new kidney or aHUS. My bloods were sent to a specialist hospital in Newcastle and it came back as positive for aHUS. “My treatment was a drug called Eculizumab, which had only just been approved by NICE for use in England. This amazing drug is now available to some patients with my condition in some parts of the UK – without it the outcome for people like me was pretty poor.”

Two years after starting treatment Hannah’s health had improved and having finished her nurse training she married her long-term partner, Jack Skeet.

“After getting married we decided we would like to start a family and went to see my consultant. He was really positive because my kidney function was really good. Unfortunately, there was no data from patients who were on Eculizumab and had managed to have successful pregnancies.

“I was referred to Leicester, but they didn’t think it was a good idea and even sent me a letter to say it could be a risk to me and the foetus. My consultant in Lincoln, however, remained positive and said he would support us.”

Hannah became pregnant and at eight weeks she went back to Leicester where she was scanned and all looked good.

At 20 weeks, she developed preeclampsia, but this was controlled. When she developed it again at 29 weeks Hannah was admitted to hospital and underwent an emergency caesarean.

Hannah and Jack’s daughter, Florence, was born weighing 2lbs and 1oz. She was healthy but very small.

“That was really scary. She was taken to the neonatal unit and at about 5am the next morning she was transferred to the Leicester Royal because she was struggling to breathe.

I stayed at the Leicester infirmary and was given a big dose of Eculizumab.”

I certainly don’t want anyone to feel sorry for me, I have a really good life. I just hope it helps people. I’m a nurse and I believe in research 100 per cent – it’s amazing how it can change lives.

Florence proved to be a fighter and following 54 days in a neonatal unit, proud parents Hannah and Jack were able to take their daughter home.

Eight months later Florence is hitting all the development milestones expected for a happy, healthy baby.

And Hannah’s kidney function is stable as she continues to receive Eculizumab every 14 days at home.

“I put a video diary up on YouTube about my experiences and since then I have had so much positive feedback from people.

It seems to have given people hope – and hope for future medical advancements.

“I certainly don’t want anyone to feel sorry for me, I have a really good life. I just hope it helps people. I’m a nurse and I believe in research 100 per cent – it’s amazing how it can change lives. If it wasn’t for research into Eculizumab I wouldn’t be where I am now and neither would Florence.”

To donate to Kidney Research UK call: 0300 303 1100

YOUR DATA // P06

YOUR DATA // P07

Saving lives with health data

Tackling stroke risk

Supported by a Kidney Research UK Training Fellowship, Dr Mark Findlay from the University of Glasgow, investigated patient data from the Scottish Renal Registry and the Scottish Stroke Care Audit.

He examined the data of almost 9,000 patients who were receiving renal replacement therapy between 2005 and 2013, together with the data of over 61,000 stroke patients from the same time period.

The data showed an increased stroke risk following haemodialysis, compared to other treatments of end stage kidney disease. In addition, Dr Findlay discovered significantly higher rates of stroke in all people with end stage kidney disease, irrespective of their treatment, and differences in their care following stroke.

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0.80

0.90

1.00

recipients were less likely to be admitted to a specialist stroke unit and receive specialist care, presumably due to a perceived need to remain in a renal ward.

Haemodialysis

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The risk of stroke is substantially higher for people with end stage kidney disease, compared to the general population. For patients on dialysis and for those that have been transplanted the outcomes could be life threatening.

Stroke Free Survival

Renal Transplant

Peritoneal Dialysis

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Access to patient data from several large national databases has helped to identify potential reasons for increased stroke risk and mortality rates in people with end stage kidney disease. These are major concerns for Kidney Research UK.

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2,000

3,000

4,000

Follow-up (days) Graph showing greater risk for stroke in people on haemodialysis compared to those on peritoneal dialysis or with a kidney transplant (information gathered by Dr Findlay and his team)

“Dialysis is an essential lifesaving treatment.

However, it is increasingly recognised we must develop ways to limit its effects on brain blood flow and function,” says Dr Findlay, who also treats patients at South Glasgow University Hospital.

“We also noted differences in stroke care, which could play a role in the poor poststroke outcomes for people with end stage kidney disease. For example, dialysis

On May 25, a new national opt-out programme was introduced in England, enabling people to opt-out of having their personally identifiable health and care information used for research and NHS service planning.

“There are many reasons why this might happen but we hope that by recognising these discrepancies and sharing our findings as widely as possible, clinicians, patients and researchers will be able to start thinking and talking about these issues.”

It seeks to give patients and the public more control over how their confidential patient information is used. This follows recommendations from the National Data Guardian (Dame Fiona Caldicott).

Under the new rules:

Having access to highly secure retrospective patient data enabled Dr Findlay to use complex statistical analyses to mimic the closest thing to a randomised controlled trial, which is regarded as the ’gold standard’ for evidence.

●Y ou will be able to opt-out of having your confidential health data shared for reasons beyond your individual care. For example, you will have to give consent for your personally identifiable data to be used in a specific research study.

“It would be completely unethical to run a trial where stroke care was given to some people and not to others. So without this data it simply wouldn’t have been possible for us to gain such a clear understanding of the day-to-day care of these kidney patients or explore potential discrepancies in their care,” says Dr Findlay.

●Y ou will not be able to opt-out of the use of anonymised information. ●Y our personally identifiable data cannot be used for insurance or marketing purposes without your consent.

Vital insights from dialysis data Kidney Research UK’s research using patient data is helping the urgent drive to find ways to reduce hospital admissions and death rates for people receiving renal replacement therapy (transplants or dialysis).

Dr James Fotheringham

Find out more: www.kidneyresearchuk.org

In a study funded by the charity and completed in 2015, Dr James Fotheringham and a team from the University of Sheffield linked patient data from the UK Renal Registry with Hospital Episode Statistics data to investigate admission rates and survival in patients receiving dialysis in England.

The data of more than 20,000 patients who had started renal replacement therapy between 2002 and 2006 was examined. The team discovered that in patients receiving three times a week dialysis, after the two days without treatment hospital admissions were 69 per cent higher, and deaths were 22 per cent higher than the rest of the week.

They also found differences between renal centres. Dialysis and transplant patients in some renal centres were four times more likely to be admitted to hospital than similar patients receiving treatments in other centres.

The strength of these findings enabled Dr Fotheringham to obtain funding for a clinician scientist award from the National Institute for Health Research (NIHR) for further ongoing research work.

“We want to understand how we can reduce these increases in hospitalisation and deaths in the most acceptable way for patients,” said Dr Fotheringham, who is also a consultant nephrologist at the Sheffield Kidney Institute.

“So far our investigations have revealed that longer dialysis sessions three times a week make you live longer, but patients are still more likely to be admitted or die after the two day break. We are now looking at other potential treatments for patients including having four dialysis sessions per week, rather than the usual three.

“We’re using data from 4.5 million dialysis visits to hospital to help us try to understand how, why and when patients are most affected by a two-day break in their dialysis treatment.”

None of this research would have been possible without access to existing patient data.

“This type of routinely collected and anonymised data is essential when patients are facing significant harm, but you need a lot of patients in order to measure that harm. If we were restricted to only using new patient data collected through new studies it would take us much longer to identify problems, and sadly more people would die before we could even begin to explore potential solutions,” said Dr Fotheringham.

We hope these new measures will reassure people about the safety and security of their health data and highlight the vital importance of patient data to renal research.

Kidney Research UK has been following this issue closely, and contributed to the National Data Guardian’s review. “We know there is a willingness amongst patients and the public to share their personal data for the benefit of research, as long as their information is kept safely and securely,” said Peter Storey, Kidney Research UK Director of Communications.

“Being able to draw insights from large amounts of anonymised data is vital in diseases such as kidney disease. The more we can learn about the early stages of Chronic Kidney Disease (CKD), the more we can do to slow or halt progression of the disease and prevent more people from experiencing kidney failure and other health problems.”

For rarer renal diseases, collecting as much data as possible helps researchers and clinicians to predict patient outcomes and develop new therapies.

Many renal researchers rely on patient data for some of their studies, researchers like Dr Mark Findlay and Dr James Fotheringham.

There are strict controls on how researchers can access data.

Their studies must be approved beforehand, they are only given access to the minimum amount of data necessary and, wherever possible data is anonymised.

“We hope these new measures will reassure people about the safety and security of their health data and highlight the vital importance of patient data to renal research.

We hope this will encourage even more people to consent to the use of their data for research studies,” said Mr Storey.

Find out more about the uses of health information for care and research on the Understanding Patient Data website: www. understandingpatientdata.org.uk For further information about the national data opt-out, visit the NHS Digital website: www.digital.nhs.uk/ national-data-opt-out

To donate to Kidney Research UK call: 0300 303 1100

OUR HEROES // P08

OUR HEROES // P09

Walk with Ashleigh and help save lives Teenager Ashleigh Taylor does our London Bridges Walk every year. That’s a journey of seven miles in her wheelchair.

She attempts to walk as much of the route as she can but unfortunately her legs get too painful.

Ashleigh and her family do the walk because they know research is her only hope.

For Ashleigh the walk is tough. She has Focal Segmental Glomerulosclerosis (FSGS), a genetic condition which her dad also has, and two years ago when her kidneys finally failed Ashleigh had to have them both removed.

Ashleigh was only 13 months old when her kidney disease symptoms began to show, causing her body to swell up. Her mum, Tanya, takes up the story:

I walk the walk because I trust medical research; one day it will find a cure for me.

Thousands of people, including kidney patients, their families and friends join us each year for our Bridges Walks. Held in Newcastle, London and Glasgow, these walks are a great way to fundraise for lifesaving kidney research.

“One of the things I love most about my daughter is her determination not to let her condition rule her life. Her main motto is ’never give up’.

She never moans about it, never says why me?

Why not join us this year? Every pound you raise, every mile you walk, every bridge you cross, gets us closer to saving Ashleigh’s life – and thousands of others like her.

“Ashleigh hadn’t been well for a little while.

She was so hot, she was sleeping all the time, wouldn’t eat or drink, and could barely open her eyes as they were so swollen. The worse part was that her nappies were black when she had a wee. We later found out this was blood in her urine.

“After many hospital tests, Ashleigh was diagnosed with FSGS, and everything changed for us as a family.”

Ashleigh had a kidney biopsy and then began the treatments: the dialysis, the tablets, the injections, the restricted diet and fluid intake, regular clinic appointments, constant blood tests, surgery, a feeding tube. She’s now 14 years old and these treatments keep her alive.

After her kidneys were removed in 2016 Ashleigh was put on peritoneal dialysis (PD), dialysing between 10-14 hours seven nights a week.

“The hardest part for us is seeing her on the down days. There’s nothing worse than seeing your child upset and knowing there’s nothing you can do to fix it. She does struggle with anxiety but has some great friends that help her through her down times.

She understands she can’t do what her friends do.

“Her body is full of scars but she is not embarrassed by them. She always tells me ’they saved my life’ when she talks about the tubes in her body. She calls them her lifelines and decided a while ago, that if she was a superhero, her superhero name would be Supertubes!”

Ashleigh as a baby in hospital

“Ashleigh is very caring and wants people to know it’s not all that bad. She’s met some amazing nurses and friends, and if it wasn’t for her kidney disease then these people would never have crossed her path.

“She said to me, ’mummy I want to be able to put poorly children at ease, because I know what it’s like to be scared of treatment.”

Ashleigh should be able to have a transplant in the future, currently she’s not well enough. She lost a lot of weight when her kidneys were failing, but now has a feeding tube in her tummy to have overnight feeds which adds extra calories.

Her family hopes that later this year she will be stronger and able to go on the transplant waiting list.

Speaking about the Bridges Walks, Tanya said: “Ashleigh loves doing the London Bridges Walk; she loves being a part of such a big event and walking with all those people right through the heart of London!

However, in March this year, she was admitted to hospital again because fluid overload had pushed her blood pressure dangerously high.

Ashleigh’s consultants made the decision to remove her dialysis line and put in a centre line. She must now go to hospital five days a week for haemodialysis.

Tanya added: “It’s hard on family life. When Ashleigh was on PD at home we couldn’t do evenings out because of the time restraints of her machine. Now though, with her change of dialysis we must work around who takes her to the hospital five days a week. Luckily both our employers have been very supportive.

Ashleigh wants to be a medical professional when she grows up and is currently volunteering as a member of St John’s Ambulance.

The London Bridges Walk

“We do it every year because we love to give back to the people that have helped us. Without kidney research we wouldn’t be where we are. My husband has had his kidney for 25 years due to research.

Our family loves being a part of the walk and I love the feeling of handing over the money we have raised. It makes us happy knowing it’s going to fund more research.”

Ashleigh and her mum Tanya at the London Bridges Walk 2017

R E H T E G O T K L WA SUNDAY 10 JUNE 2018

SIGN UP TODAY AT

SUNDAY 1 JULY 2018

www.kidneyresearchuk.org/bridgeswalks Find out more: www.kidneyresearchuk.org

SUNDAY 14 OCTOBER 2018

RAISE MONEY SAVE LIVES To donate to Kidney Research UK call: 0300 303 1100

TRANSPLANT GAMES // P11

TRANSPLANT GAMES // P10

Let the games commence Every year the British Transplant Games showcases amazing people and their achievements, both on and off the sporting field.

Taking place in Birmingham from August 2-5, the Games are open to transplant recipients, donors and donor families.

The British Transplant Games is the flagship event of Transplant Sport, developed by the surgeon Maurice Slapak in 1978, who went on to found the World Transplant Games Federation.

Mr Slapak’s vision was to demonstrate the benefits of transplantation through sporting achievement and to increase public awareness of the need for more people to join the NHS Organ Donation Register and to discuss their wishes with their families. It was hoped that this could all be achieved through bringing together the transplant community to celebrate the gift of life.

Lynne Holt, former transplant coordinator at Newcastle Freeman Hospital, is the manager for Team GB. She has been involved with the Games since the early 1980s.

Lynne said: “There have been many changes, but the main difference between the Games now and how it was, is the number of competitors and sports. We had 99 competitors at the beginning and it was a one-day event with four sports, now it runs over four days and there are 23 sports and more than 900 transplant recipients involved.

whatever their ability. It’s just a really great social and family occasion and you get to meet lots of new people, there’s a great atmosphere.”

“The aim when Maurice started the Games was to demonstrate the benefits of transplant surgery to the public, who may have no idea that people can live a full and varied life after a transplant, rather than seeing them as frail people who need to be cared for. Taking part in the Games can also change the mindset of patients, teaching them that they can embrace exercise, which can also help with their recovery and overall wellbeing.”

Tracy was only 35 when she ’crash landed’ with just six per cent kidney function. Her blood pressure was through the roof and she was placed in a high dependency unit for four days.

Lynne is at pains to stress the Games are for everyone, even people who might not consider themselves sporty in any way.

The majority of events are for transplant recipients and in the last couple of years, also post-transplant dialysis patients, with some specific events for live donors.

A full social programme complements the sporting schedule, and the 5K Donor Run is open to anyone who wants to take part – donor families, patients, transplant recipients, their friends, family and the general public.

And Lynne added: “It’s all about the support, friendship and the Games family, it embraces grass root athletes through to elite athletes, there is something for everyone and people might even surprise

Do you want to join us?

In 2011 Tracy received a kidney transplant from her mum, Angela.

Writing on her blog in 2015, she said: “The difference this transplant has made to my life is enormous.”

“I had been feeling unwell on and off for about a year. I kept going to the doctors and saying I didn’t feel right, but they put it down to a virus.”

Lynne Holt

themselves with what they can achieve. It truly is a celebration of life.”

Transplant recipient Tracy Carroll is the finance director for Cornish organic clothing company, Frugi. She will represent the Plymouth Hospital transplant team again this August. It will be her fifth Games, she has also been to the World Transplant Games twice, once in Argentina and again in Malaga.

“I have won 20 medals so far,” she said, “I really enjoy the Games, they are great fun. Swimming is my thing though, I’m not a runner.

“What I like the most about the Games is how it motivates me to keep fit. It can be very easy, when you are not feeling on top of the world, to not exercise. It’s encouraged me to do more, but I must stress the Games are not just for fit people, everyone can take part

During August 2010 she began to feel worse and worse. Her symptoms included tiredness, nausea, vomiting, bruising and an ’almighty’ headache.

Tracy’s doctor thought it may still be a virus but did blood tests and asked her to return in a week.

She said: “I was fortunate enough to get a blood test that day and after they were taken I thought no more about it.”

This event is a celebration of who we are, what we have been through and all the donors that have got us here.

Tracy Carroll

However, her results were so concerning the police were sent to her house because she had fallen asleep and couldn’t hear the phone – and she was rushed back to hospital.

Following treatment, she spent four months on dialysis before her mother was found to be a match for a transplant.

“I think I’m extremely lucky to have had a transplant; I love life and I want to live it to the full.”

Registration for this year’s Games has now closed, but spectators are still welcome to attend.

Transplant recipient and Kidney Research UK’s Patient Involvement Co-ordinator, Sarah Harwood, is helping to lead the charity’s team at the Games this year.

Team registrations are now closed, but there is still time for you to get involved at this year’s Games in Birmingham.

Anyone interested in joining the 5k Donor Run can sign up and raise funds for Kidney Research UK here: www.kidneyresearchuk.org/ get-involved/events/ british-transplant-games Alternatively, if you have bags of enthusiasm and would like to volunteer your time to cheer on athletes and help the charity’s awareness activities over the Games, please email: volunteer@kidneyresearchuk.org

She said: “The Transplant Games are my favourite time of year! They bring together transplant patients of all ages and backgrounds, from around the UK, to compete in sport and have fun. We share our experiences and cheer each other on to do more. As patients we all have times where we struggle, but this event is a celebration of who we are, what we have been through and all the donors that got us here. That is why it is so special.”

Jelina Berlow-Rahman who competed in 2017 for #TEAMKIDNEY

Find out more: www.kidneyresearchuk.org

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Scientists create functioning kidney tissue – a first for medical science

Regenerating kidneys A revolutionary field of renal medicine is gaining momentum which could lead to groundbreaking advances in the race to find a cure for kidney disease.

Renal regenerative medicine therapies (RRMTs) aim to regenerate, repair or replace damaged renal tissue using cell, drug or gene therapies or tissue engineering in order to restore normal kidney function.

RRMTs encompass a broad range of approaches, many of which involve the use of stem cells. Natural stem cells in the body are essential for replacing injured tissues and cells that are lost every day (eg skin, hair and blood) as they are able to make new stem cells or new tissue cells as the need arises.

“We’ve already seen some wonderful work from research teams in the UK and the Netherlands. For example, the study led by professors Sue Kimber and Adrian Woolf from the University of Manchester, and part-funded

by Kidney Research UK, which successfully produced small quantities of human kidney tissue within a living organism,” added professor Davies.

“Similarly, I’m leading two research projects, partly funded by the charity, which are focusing on making a miniature lab-grown and simplified version of a new kidney that

Studies involving regenerative medicine and stem cells help us to understand how the kidney forms and works, genetic disease, damage to the kidney and regeneration after injury – all key areas in helping to deliver the UK Renal Research Strategy.

“This field holds great promise,” said Jamie Davies, who is professor of experimental anatomy at the University of Edinburgh and co-chair of the UK Renal Regenerative Medicine Network (UKRRMN) – a group set up to bring together all those involved with and interested in regenerative medicine and to forge new partnerships. Members include kidney patients, biologists, bioengineers and renal clinicians.

Professor Jamie Davies

“Ultimately the end goal for us all is to be able to build entire human kidneys from stem cells for transplant but we are still a long way away from achieving this.

“Kidney Research UK is playing a crucial role in all of this by helping to set up the UKRRMN, enabling us to discuss and share new ideas with research groups from other renal fields, and bringing in potential industrial partners and funding bodies.”

“The potential for advancement is very exciting,” said UKRRMN member Dan Beech.

Dan had a kidney transplant nine years ago after being diagnosed with Focal Segmental Glomeruloclerosis (FSGS) as a child. He joined the network at its inception last year after spending six years on the charity’s Lay Advisory Committee.

“I wanted to get involved to give something back to the renal community,” added Dan. “I’ve never expected anything in return but who knows; in the years to come, advances in

WITHIN 5 YEARS

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Making simple, small human kidneys in the lab for investigating renal diseases and testing new, better therapies.

The Regenerative Medicine study led by Professors Sue Kimber and Adrian Woolf from The University of Manchester, marks a significant milestone in the development of the treatment for kidney disease.

“What is particularly exciting is that the structures are made of human cells which developed an excellent capillary blood supply, becoming linked to the vasculature of the mouse.

They were combined with a gel like substance, which acted as natural connective tissue, and then injected as a tiny clump under the skin of mice.

Kidney tissue made in the lab from human stem cells: the different colour stains show different components of the kidneys, in this case glomeruli (red), nephrons (blue) and urine collecting ducts (green). Photo: Weijia Liu, Davies lab

regenerative medicine may be able to help me by making transplants last longer or by eventually creating fully functioning lab-grown kidneys which can be transplanted directly into patients.

“There’s a real appetite for progress and collaboration across the UK and with other countries. It’s great to be a part of this and, as a kidney patient, I can keep asking the question ’how will this new work, partnership or development help people like me?”

If you are a patient and you would like to get involved in the UKRRMN, contact: patientinvolvement@kidneyresearchuk.org To get involved as a researcher, contact: jamie.davies@ed.ac.uk or visit: www.kidneyresearchuk.org/renal -regenerative-network

5–10 YEARS Using a recipient’s stem cells to recondition a donated kidney prior to transplant to help the kidney work better and last longer.

“We have proved beyond any doubt these structures function as kidney cells by filtering blood and producing urine – though we can’t yet say what percentage of function exists,” says Professor Kimber.

Kidney glomeruli were generated from human embryonic stem cells grown in plastic laboratory culture dishes containing a nutrient broth known as culture medium, containing molecules to promote kidney development.

can be used for investigating renal diseases and testing new therapies.

“We’re at the start of that long journey but it promises lots of gains along the way – gains such as improving the state of kidneys currently available for transplant and finding potential ways to regenerate kidneys or at least slow down their degeneration in disease.

Scientists partly funded by Kidney Research UK have successfully produced human kidney tissue within a living organism which is able to produce urine – a first for medical science.

After three months, an examination of the tissue revealed that nephrons: the microscopic structural and functional units of the kidney, had formed.

The new structures contained most of the constituent parts present in human nephrons, including proximal tubules, distal tubules, Bowman’s capsule and Loop of Henle.

Tiny human blood vessels – known as capillaries – had developed inside the mice which nourished the new kidney structures.

However, the mini-kidneys lack a large artery, and without that the organ’s function will only be a fraction of normal. So, the researchers are working with surgeons to put in an artery that will bring more blood the new kidney.

“Though this structure was formed from several hundred glomeruli, and humans have about a million in their kidneys, this is clearly a major advance.

It constitutes a proof of principle – but much work is yet to be done.”

“We are tremendously excited by this discovery – we feel it is a big research milestone which may one day help patients,” says Professor Woolf.

“However, there is much more to learn: building on our generation of kidney filtration units we must now turn to developing an exit route for the urine and a way to deliver this technology to diseased kidneys.”

Developing mini kidney made from stem cells stained to highlight key renal elements

10+ YEARS Using cell-based regenerative medicine therapies to repair or regenerate damaged kidney tissue in the body and prevent/postpone dialysis or transplant.

Using stem cells and cells from other parts of the body to engineer ’kidney substitutes’ to help improve dialysis.

Using bioengineering techniques to grow functional human kidneys from stem cells for eventual transplant into patients.

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Research provides hope for one in a million baby

NURTuREINS Study The academic team for the NURTuRE-INS study is led by Professor Moin Saleem and supported by Dr Liz Colby, study coordinator.

Liz has a background in laboratory science having gained her PhD with Cancer Research UK, followed by a role as Data Manager on breast cancer radiotherapy trials before becoming part of the NURTuRE initiative.

Liz said: “We’re creating a powerful resource of high quality samples and clinical data.

This has enormous potential to improve treatments for patients with nephrotic syndrome and Chronic Kidney Disease (CKD).

The beauty is how straightforward it is for patients to take part, and the rich rewards that will be reaped in future.”

Baby Ruby’s parents, Chloe Gauld and Danny Simpson, are looking forward to taking their baby home. Ruby has been in hospital since she was just nine days old.

Ruby, who is now 19 weeks old, was home for six days after her routine discharge from the maternity ward following treatment for jaundice. Chloe (22) and Danny (22) took her back to the hospital for repeat cord blood – and that’s when their world was turned upside down.

Ruby’s genes – which led to her developing Nephrotic Syndrome (NS).

Chloe said: “The doctors sent extra bloods away and every one came back off-kilter. We were told she was showing signs of renal failure. Ruby was kept in the Special Care Baby Unit overnight and the following day was transferred to Paediatric Intensive Care Unit (PICU) in the Royal Hospital for Sick Children in Glasgow. She’s been there ever since.

Genetic testing showed Ruby had a mutation on the WT1 gene, which is known for causing congenital NS, but the specific mutation that Ruby has, is one the laboratory hadn’t seen before. She could potentially be the only person in the UK with this specific mutation.

“We were told on that first day in Glasgow she had congenital nephrotic syndrome and we later found out through genetic testing that she has a very rare and aggressive form.”

Both adults and children at participating renal centres can be part of the NURTuRE-INS study, by providing samples and the 800 or more patients who take part will have baseline assessment and follow-up at times of relapse or transplantation.

Doctors believe the chances of it happening again, should Chloe and Danny decide to have another child, are so unlikely they cannot even put it into numbers.

Ruby is being treated at the same hospital as kidney patient Daniel, who many will recognise from previous issues of Update. Daniel’s family are able to give insight into what lies ahead for Ruby and hers.

So rare in fact that Ruby is believed to be the only case of her specific mutation in which neither parents are carriers, but a ’hiccup’ in mum and dad’s genes led to a ’hiccup’ in

Chloe said: “This certainly hasn’t made life any easier for the doctors, as they have no one else to compare her to, and therefore can’t roughly predict how things will go in the future. The lab is now looking internationally to see if they can find anyone anywhere that has the same.

It is hoped that in developing this resource, more light will be shed on the causes of nephrotic syndrome by focusing on: Genetics – including whole genome sequencing – currently over 50 genes are associated with nephrotic syndrome.

Above, Ruby and Chloe celebrate their first Mother’s Day. Top, Ruby as Superwoman

We’re hoping the dialysis will work until the point where she weighs enough to get a kidney transplant.

What is Kidney Research UK doing to help?

While Ruby’s condition is extremely rare, there are currently over 900 children in the UK whose kidneys have failed and who are kept alive by dialysis or a transplant.

samples and kidney patient data from the UK Renal Registry which will be accessible to specialists who want to develop new treatments for nephrotic syndrome and CKD.

Research offers hope for patients such as Ruby. Last year the charity launched a groundbreaking biobank designed to enhance and propel our understanding of some of the most common causes of kidney disease. NURTuRE, (the National Unified Renal Translational Research Enterprise) – is a unique biorepository of

Facilitated by Kidney Research UK, the project is being jointly delivered through the University of Bristol, led by Moin Saleem, professor of paediatric renal medicine and the University of Nottingham, led by Maarten Taal, professor of medicine. The vision and passion of both professors has

Find out more: www.kidneyresearchuk.org

been a huge factor in bringing the project to fruition.

Funding for the development of the NURTuRE biobank comes from Evotech, UCB, AbbVie Inc, Retrophin and Kidney Research UK. In a revolutionary move researchers who accesses the samples for their own studies will agree to share their analysis after publication, further enriching the resource, helping the progress of renal research in the UK. This could provide a springboard for similar developments on other aspects of kidney disease.

“Myself and Danny have both had blood taken to be sent away for screening too, this is to see if the lab can find out how Ruby’s genetics have formed this mutation based on our own genetics, as neither of us have any kidney problems ourselves.

“So far she has had three operations, one for her Hickman line on 10 December, and one for her peritoneal dialysis catheter on 1 January, (her Dad’s birthday) and another to remove the Hickman line.”

Ruby has been on dialysis for roughly two months now and so far it seems to be going well. Her blood pressure and heart rate have been controlled by medicines and are now stable.

Mum and dad are currently learning how to work the dialysis machine so they can get Ruby home.

Identifying risk factors for disease progression and recurrence of the disease post-transplant which could ultimately lead to developing a test to identify those patients most at risk.

Identifying common disease mechanisms so that new treatments can be developed.

So far Professor Saleem and his team have made groundbreaking progress to achieve their goal. They now plan to bring together world-leading academic expertise to analyse the large amounts of data collected. They hope to re-classify one of the most difficult to understand and rare conditions suffered in renal medicine – idiopathic nephrotic syndrome (INS).

“Hopefully we will have our results soon and that might give the doctors a bit more information.”

“We’ve already been trained how to use her nasogastric tube for pump feeds, gravity feeds, and medicines, as well as passing the tube itself.

The plan is to also make use of the infrastructure and methodologies developed, to gain insight into CKD, and find out why some patients decline faster than others – a key unanswered problem.

Ruby spent a total of 21 days in PICU altogether during her time in Glasgow, the rest has been on the renal ward.

“We’re hoping the dialysis will work until the point where she weighs enough to get a kidney transplant.”

To find out more about NURTuRE visit www.nurturebiobank.org or our website at www.kidneyresearchuk.org

To donate to Kidney Research UK call: 0300 303 1100

Meet Daniel

Daniel’s kidneys have failed. As a baby, only a machine kept him alive. This year he had a transplant but it’s likely he will need more.

It’s only with the help of people like YOU that we can pioneer new treatments that help find cures for children like Daniel.

Sadly we have to turn away exciting and potentially lifesaving ideas, because we don’t have the money to fund them.

Thanks to our recent merger with Kids Kidney Research, paediatric renal research has an even brighter future.

To find out more about leaving a gift in your Will please call: 0300 303 1100 Email: supportercare@kidneyresearchuk.org Visit: www.kidneyresearchuk.org/legacy Registered Charity No. 252892, Scottish Charity No. SC039245