Update Autumn 2020

Update.

Autumn 2020

Issue 23

The magazine from Kidney Research UK

Teaming up to find a new cause of kidney disease Page 10 Inspired grandfather’s cross Channel swim Page 08

New online wellbeing service helping kidney health at home Page 04

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News

New techniques reviving kidneys for transplant New research from Newcastle University researcher Dr Emily Thompson suggests it could now be possible to revive and repair kidneys for transplant that would otherwise go to waste, using warm perfusion and stem cell therapy. Published in the American Journal of Transplantation in June this year, Emily’s work may one day help to improve the number and quality of donated kidneys.

Welcome.

We are so fortunate to have such a loyal and committed group of supporters. Many of you are facing tough times, yet you send encouragement, reassurance and financial support. You have kept the charity going. The supportive messages show us you recognise the perilous position we, along with most charities, are in. Thank you. We are doing all we can to re-establish a research programme when the time is right, and the funding is in place.

This exciting research shows that stem cell treatment could improve the quality of donor kidneys.

Along with another funder we hope to establish a revised clinical trial that aims to protect kidney patients against Covid-19. We funded this emergency project from savings made across the charity. More news on this soon.

You can read about Beam, the new platform we have helped launch to support kidney patients’ physical and mental health, on pages 4-5. The early investment needed to make Beam available to kidney patients during lockdown, was urgent and critical. We hope the evidence from this pilot will show how vital this support is and will lead to this becoming established as part of an improved all-round healthcare approach.

Researchers are gradually returning to their roles; we expect to see this grow over the autumn. The disruption to their vital work has been difficult to watch, during a time when patients need improvements more than ever.

We face a difficult few years ahead, as we rebuild our work. Ambitious plans are in place, and we are focused on delivering them. You can read more in our annual report recently published on our website for the year ending 31 March 2020.

Please let us know if you would like a copy.

Thank you for the part you play in keeping research going.

Sandra Currie, Chief executive

To give more people the chance to receive a transplant, doctors must consider using ‘marginal’ kidneys that may not be in an ideal condition.

Emily is using human kidneys in the lab and a technique called normothermic machine perfusion (NMP) with a stem cell treatment. NMP pumps warm oxygenated blood through a donated marginal kidney. This keeps the kidney working after it’s removed and helps to avoid damage that can otherwise occur when a kidney is warmed up before transplant.

In this study, Emily treated kidneys with stem cells called multipotent adult progenitor cells. She discovered this treatment reduced inflammation and kidney injury, improving blood flow to damaged cells and producing more urine - a sign the kidney is working better.

Dr Emily Thompson

Right now, there are not enough transplants available for everyone who needs one, and a transplant doesn’t last for life. We hope this treatment ultimately means more kidneys become fit for transplant and are able to last much longer.

Dr Maria Tennant, Head of Communications at Kidney Research UK

Emily and her team are the first to use NMP to deliver stem cells directly into a kidney to revive and repair damage before transplant.

Contact the editorial team Kidney Research UK, Nene Hall, Lynch Wood Park, Peterborough PE2 6FZ 0300 303 1100 pressoffice@kidneyresearchuk.org Website: www.kidneyresearchuk.org Designed by www.adeptdesign.co.uk Cover photo Researchers Dr Aoife Waters and Dr Jennifer Chandler; their work into childhood kidney disease features on pages 10-11 Registered charity no. 252892. Scottish charity no. SC039245.

We need your help more than ever. If you can donate, please visit www.kidneyresearchuk.org/donate

News

Remember your loved one and continue their story 2020 has been a challenging year for many, but it’s been particularly difficult for those who’ve lost loved ones or have been grieving during the pandemic.

Many families experiencing loss during lockdown find consolation in setting up an online tribute fund to celebrate and remember their loved one.

Jenny Pitham set one up in memory of her mum, Carol. She says: “Mum was diagnosed with kidney failure in 2008. Dad was tested to see if he Pitham’s mum Carol was a compatible Jenny is fondly remembered. donor and the transplant was successful. Although recovery was hard, life was good for the next few years. Unfortunately, in October 2016 mum was diagnosed with non-Hodgkin’s lymphoma and was told the cause was probably her

Diary dates

anti-rejection medications and her body had begun to reject her kidney. She started dialysis and got used to being hooked up to the machine every night.

She hated it, but knew it was necessary!

Slowly she began to recover and thought her luck was changing, but in February 2020 she became terribly ill and lost her battle due to septic shock.

“The pain of losing her is still raw. She was a brave, strong lady and we miss her dearly. Setting up the tribute page and raising money for Kidney Research UK was a great comfort as we felt we were doing something positive on her behalf.

It’s also become a place we can all go to celebrate her life, share stories and photos and keep her memory alive.”

For more information on tribute funds visit www.kidneyresearchuk.org/support/ fundraise/in-memory-giving

It was launched virtually after the Covid-19 pandemic postponed its tour of public galleries and exhibition spaces across the UK.

Step into Christmas 1-24 December Skydives – various locations Saturday 6 March World Kidney Day Thursday 11 March Peterborough Marathon Sunday 11 April The Andy Cole Fund Gala Dinner – The Dorchester Hotel, London Thursday 13 May Kidney Research UK Charity Golf Day – The Belfry, Sutton Coldfield Monday 7 June

London Marathon Sunday 3 October Kidney Research UK Gala Dinner – The Brewery, London Saturday 9 October

Asif Ali, as featured in the exhibition

Survivors: Life Unfiltered is a creative project by award-winning photographer and director Richard Booth, and kidney patient advocate Maddy Warren, jointly funded by dialysis technology company Quanta, Kidney Research UK and Kidney Care UK. The exhibition features over 30 people affected by kidney disease, of all ages, from all walks of life.

We hope the following events will take place in the next year.

Please keep an eye on our website for details and other ways you can support us.

Great North Run – Newcastle Sunday 12 September

Exhibition brings life with kidney disease into focus

An art exhibition featuring photographic portraits and compelling stories of kidney patients has launched online.

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Exhibition co-creator Maddy said: “Kidney disease can devastate everything from family, relationships and education, to work, socialising and playing a fulfilling role in your community... yet perversely, the condition also provides a unique perspective into what it means just to be alive. That’s the reason we created our exhibition – to share the amazing stories of strength, vulnerability and resilience of those living with chronic kidney disease, and to raise awareness of this littleknown disease which affects millions.”

To take your tour, visit: www.survivorslifeunfiltered.co.uk

Our NEW weekly lottery is here How does winning a jackpot of £10,000 sound? Playing our weekly lottery gives you the chance to do just that – as well as helping to fund more of the research you will read about in this edition of Update magazine.

For just £1 a week, you will receive a unique six-digit lottery number and be entered into a draw every Friday. All you have to do is match the numbers in the correct place to win. Prizes range from £5 to a massive £10,000 jackpot.

So what are you waiting for?

For your chance to win, visit: https://lottery.kidneyresearchuk.org or call 01628 201952

disease To make a gift to Kidney Researchkidney UK call: 0300ends 303 here.

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Kidney Beam: online wellbeing at home.

We have helped launch a new online wellbeing service to support kidney patients managing their physical and mental health through lockdown and beyond. Beam for Kidney Disease, affectionately known as Kidney Beam, offers patients living with kidney disease a way to improve their physical activity and boost their mental health from home, through live and on demand movement classes and expert advice videos.

To make a gift to Kidney Research UK call: 0300 303 1100

Kidney Beam

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his free online service is a collaboration between King’s College Hospital, Kidney Research UK and Beam, a health-tech platform supporting people with a variety of health conditions to stay physically active.

Hosted by professionals Kidney Beam is hosted by specialist kidney professionals, including renal physiotherapists and renal counsellors, from a number of different NHS Trusts and backgrounds, as well as people living with kidney disease. It is aimed at anyone over 16, with any level of fitness or ability, any kidney condition, and at any stage of disease. Before and after classes participants can chat to other patients and the instructors, building new friendships that can help to motivate.

Kidney Beam is an excellent opportunity to bring something new and exciting to the kidney community at a time when it is most needed.

Our funding is enabling the King’s team to test the Beam platform for kidney patients over the next few months and they hope to secure further funding to continue.

Sandra Currie, chief executive of Kidney Research UK, said, “When the team from King’s College Hospital asked us to support this pilot, we could see enormous potential of the project, and were delighted to respond quickly.

Right now, it is more important than ever to give kidney patients options to keep moving and explore new ways to maintain good mental health.”

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“We think the platform will give patients an easy, fun way to improve their health,” said Sandra. “And the more people who join, the more evidence we will have to help secure the platform’s future to benefit all.”

Helping people shielding at home Sharlene Greenwood, consultant physiotherapist in renal and exercise rehabilitation at King’s College Hospital was inspired to begin developing Kidney Beam after her usual rehabilitation classes for patients at King’s had to stop due to the Covid-19 pandemic.

She said, “During lockdown, I became increasingly worried about my patients with kidney disease who were shielding at home. There were real concerns about physical and mental wellbeing, and many patients said they missed coming to our renal rehab classes that we offer at King’s College Hospital, and interacting with people. At the time, I was also working on the frontline and seeing many patients with kidney disease who had been admitted to hospital with Covid-19. The rehabilitation needs for this patient group, not only at King’s but across the country, was very apparent.”

Sharlene linked with the online health platform, Beam to develop a service specifically for patients with kidney disease. “Kidney Beam is an excellent opportunity to bring something new and exciting to the kidney community at a time when it is most needed,” she explains. “It also offers expert advice videos for kidney patients on topics such as sleep, mindfulness and social isolation, and art therapy classes too.”

You can improve your physical and mental health, sign up for free at: www.beamfeelgood.com/kidneydisease

Our trustee Angela Watt appreciates Kidney Beam as both a patient and a former renal nurse.

I have I had chronic kidney disease for a number of years. At the end of last year I was told I would be needing either dialysis or a transplant soon. I know I need to lose weight to get on the transplant list and Beam is part of my plan.

I’ve tried the beginners Pilates live class with Sharlene and I really loved it. She’s incredibly supportive and explains everything really well. And because I’m doing it in my own home I don’t have to worry about comparing myself to those who might be more experienced or fitter.

I hadn’t really done much formal exercise before this. I don’t drive and I do a fair amount of walking, but I’ve always avoided anything more organised. I was a bit anaemic before Christmas and struggled with exercise then, but at the moment I’m feeling pretty good and am making the most of it.

I love the fact that there are a range of classes, and for different levels and abilities.

If you can’t make the live class you can follow it on demand, so it’s easy to fit into your everyday life. And the best bit is it’s free – no guilt about paying a subscription that you don’t use as much as you should!

I’m planning to continue to use Beam and maybe even work my way up through the levels. It may even give me the confidence to join a class locally!

Kidney disease ends here.

Could controlling a brain chemical protect against kidney disease?

New research reveals lowering levels of a chemical called neuropeptide Y could stop kidneys becoming leaky, and maybe even help prevent kidney failure, heart attacks and stroke.

Dr Abigail Lay

We need your help more than ever. If you can donate, please visit www.kidneyresearchuk.org/donate

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eurotransmitters are chemicals in the brain that transmit signals between nerve cells. Serotonin and dopamine zip around the brain at high speed, while neuropeptides such as the hormone oxytocin and neuropeptide Y tend to act a little slower.

Neuropeptides are not just found in the brain; they find their way into most parts of the body where they play a role in many things, from metabolism to sleep.

So, what does this have to do with kidney disease? Dr Abigail Lay’s research at the University of Bristol has discovered that levels of neuropeptide Y are linked with a condition called albuminuria, where a protein called albumin leaks into the urine.

And since albuminuria is a major risk factor for kidney failure, understanding how neuropeptide Y levels could cause or even prevent disease in this instance is incredibly important and exciting.

Leaking proteins and kidney disease When you’re healthy and everything’s working as it should, your kidneys are exceptionally good filters for your blood, filtering out waste into urine and holding on to important components, like protein.

The glomerulus is the ‘sieve’ of the kidney.

Within it are cells called the podocytes. If the podocytes (which work like a barrier) aren’t working properly then proteins like albumin leak into the urine.

Albumin in the urine is a classic early sign of chronic kidney disease and is a warning sign of future kidney failure and heart disease. Abigail’s work suggests that neuropeptide Y is at least one of the culprits here.

Neuropeptide Y in the kidney We already know that neuropeptide Y is present in the central nervous system (your spinal cord and brain) and very common in the peripheral nervous system (the nerves outside the brain and spinal cord). When it is released, neuropeptide Y influences your mood, your heart, your immune system and even your appetite.

But it also plays a role in diseases like obesity, diabetes and heart disease.

When it comes to the kidney, levels of neuropeptide Y are higher in the blood when a person has general protein in their wee (we call this proteinuria). These higher levels tend to signal chronic kidney disease (CKD) is progressing very quickly. But exactly how neuropeptide Y contributes to albuminuria was, up until recently, a bit of a mystery.

Turning neuropeptide Y down Abigail initially used genetically modified mice with the gene for neuropeptide Y completely removed, so they couldn’t produce neuropeptide Y. When the scientists induced conditions like diabetes, the mice were protected from albuminuria and damage to their kidneys. Abigail’s experiments suggest that turning down levels of neuropeptide Y might protect cells from damage.

Abigail then delved into more detail. She used a whole suite of techniques with mice, human podocytes and even a glomerulus or two in a petri dish. It became abundantly clear that turning down neuropeptide Y is protective in her models of albuminuria. Even using chemicals to stop the mechanism that switches on neuropeptide release managed to protect mice from albuminuria, kidney and podocyte damage.

Blocking neuropeptide Y: a new treatment?

The tremendous work from Abigail leaves no doubt that drugs capable of lowering levels of neuropeptide Y have the potential to treat albuminuria in kidney disease.

Dr Richard Coward, who oversaw the research said: “In the future, we would like to investigate if blocking this pathway with medicines prevents albuminuria in our patients and helps stop the devastating consequences.”

There are already chemicals that can affect the neuropeptide Y receptor and scientists are working out if they could be a possible treatment for obesity.

In the future, we would like to investigate if blocking this pathway with medicines prevents albuminuria in our patients and helps stop the devastating consequences.

Abigail’s recently published work has provided invaluable insight into the processes underpinning albuminuria and may reveal a new way to treat patients.

Find out more about our research, visit: www.kidneyresearchuk.org

kidney disease ends here.

Swimming against the tide.

Andrew Butler is a role model for positivity after his charity Channel swim was cut short near the port of Calais.

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fter swimming the English Channel for a gruelling 15 hours and 34 minutes Andrew Butler spotted the signal he never wanted to see – his boat pilot telling him to stop immediately.

Andrew had drifted too close to the ferry channels near the French port of Calais and for his own safety had no choice but to get in his support boat and go home.

For some, two and a half years of training for a swim abruptly ending within sight of French shores, would drop them into deep disappointment or worse, depression.

To make a gift to Kidney Research UK call: 0300 303 1100

Fundraising

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Inspired by his granddaughter But for mental health nurse Andrew, inspired to fundraise for Kidney Research UK by his bundle of fun three-year-old granddaughter Rosie, he knows only too well the power of staying positive in the face of adversity.

Andrew said: “The English Channel is a complex challenge, swimming across tides as they change with pilots who must plot a route according to tides, weather window and swimmer’s pace.

“There are often uncontrollable variables.

One of the tides ran at two knots instead of three, the winds were not forecasted to pick up, resulting in swimming against chop and an old shoulder injury was aggravated resulting in losing power. The variables prevented me from being pushed away from the Calais approaches.”

However, none of this dampened his spirits for an incredible opportunity to raise awareness and funds, having watched little Rosie on her rollercoaster ride since her kidneys were removed at 10 weeks old to save her life.

“I have seen the struggles of Rosie, who is waiting for a kidney transplant from my son Luke. Through my work as a mental health nurse and our family life I know the biggest part of staying positive for life is learning to change how we react to difficult and traumatic situations, which often can be easier said than done,” he said.

“So, while it may not be ideal that the swimming challenge was stopped, I remain positive that I was able to fund and have this incredible opportunity in the first place, thankful for the overwhelming support and encouragement and the fact I enjoyed an incredible experience. One day I will return to touch France.”

“On a good day Rosie is fantastic, going at 100mph, she roly polys around the house, laughing and having fun like any other three-year-old. But then she can get poorly with problems breathing or with her blood pressure.

“To witness people who you love endure trauma, and the initial chaos it causes to their world, is never easy. Since being home my son Luke and Hannah his wife have had to adapt to a whole new world of administering dialysis and several other medical procedures, as well as allowing support networks to be part of their world,” Andrew said.

“I will never forget the fears, the numbness, the shell-shocked conversations I had with my son driving to Bristol considering questions to ask, that no parent would want to consider, let alone have discussions on.

Living with uncertainty Luke, Hannah and Henry have had to adapt, face the brutal challenges thrust upon them learning to live with uncertainty, relentless telephone calls and unplanned two-hour journeys to Bristol hospital in response to Rosie’s condition becoming life threatening.

This is only touching the surface. What is alien to most people, is their normality.

My swim ending early is nothing compared to this.

Rosie is a very strong young lady with a real sense of fun and spirit which will do her well for life.

“People who know my son and daughter in law will be aware they are incredible parents, who have become my heroes.

Along with their son Henry, they are such a special family and every day I feel lucky, despite challenges that we continue to overcome.”

Sign up for your fundraising challenge at: www.kidneyresearchuk.org/getinvolved

Andrew’s swim has raised more than £7,400 for Kidney Research UK and other charities including the North Devon Wave project, which teaches young people in difficult circumstances how to surf and help them feel more positive about their lives.

Learning to adapt His passion comes from bubbly Rosie and her big brother Henry, who has learnt to deal with a little sister often rushed to A&E with no warning, plus their amazing parents Hannah and Luke, Andrew’s heroes.

Rosie was born with a life-threatening condition needing specialist treatment at Bristol Hospital for Children. Since then she has endured numerous operations and treatments, in and out of intensive care, including two emergency admissions during the Covid-19 lockdown.

Rosie Butler and her mum Hannah

Kidney disease ends here.

How scientists are using zebrafish to unlock the secrets of a new kidney disease.

Working at Great Ormond Street Hospital, it’s not surprising that Dr Aoife Waters, a consultant paediatric nephrologist, has seen a range of kidney diseases. However, one morning a family came through her clinic doors with a set of symptoms that puzzled her.

We need your help more than ever. If you can donate, please visit www.kidneyresearchuk.org/donate

New kidney disease

Unusual kidney cases and coincidences

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Dr Dr Jennifer Chandler (left) and Dr Aoife Waters

Aoife has helped hundreds of families over the years and has a good eye to spot conditions associated with kidney disease – where their symptoms are a clear sign that their kidneys not working properly. These signs could be anything from rashes, to swelling, children who wet the bed or who have blood in their urine.

When Aoife sat with a family who were suffering from hearing loss, blurred vision, inflamed intestines and scarring inside the kidney – on a part called the glomerulus – she realised that this was unusual. The family also told her about tragic events within their family, of another child passing away at an early age with similar features. She immediately knew she had to investigate this and fast.

A short while later at a conference, Aoife was speaking with Dr Kalman Tory, a scientist working at Semmelweis University in Budapest, about the unique family she was seeing. Remarkably, he had also discovered a second family with the same symptoms and they started to work together to uncover answers. They wanted to help these families and others in the future, to understand how the condition was likely to progress and find treatments that could help.

A collaboration to find answers The pair teamed up with Professor David Long and Dr Jennifer Chandler at Great Ormond Street Hospital Institute of Child Health.

The scientists started to look closely at the DNA from both sets of patients. They found that the patients in the UK had a variation in one gene and the patients in Budapest had a variation in a different one.

At first, this was confusing as they weren’t expecting to see two families with the same symptoms with variations in different parts of their DNA. But using sophisticated computer modelling the scientists found that the changes to the two genes worked in tandem, which is why the two families had the same symptoms.

The variations in the DNA of the patients were responsible for a specialised process called pseudouridylation. Pseudouridylation is a complex process that helps to turn genes on or off. This process is part of epigenetics – where the environment influences your genes. In the case of pseudouridylation it specifically affects our RNA (an important molecule present in all our cells that’s like a working copy of your DNA).

Identifying these genes was just the first step of a long road. The scientists still had to figure out how these gene changes translated into particular symptoms and how they were causing the disease.

Surprisingly, 84% of genes involved in human disease have an exact zebrafish counterpart, making them especially useful for biomedical modelling.

Using fish to understand human disease Scientists use a variety of lab techniques to search for genetic causes of human diseases, including kidney disease. They use patients’ cells or samples where possible, but to find if a mutation in a specific gene can cause a patients’ symptoms they often have no choice but to use animal models.

Zebrafish might not seem an obvious choice as humans appear to be extremely different from zebrafish, but we are more similar than you might think. Surprisingly, 84% of genes involved in human disease have an exact zebrafish counterpart, making them especially useful for biomedical modelling.

Using zebrafish model of loss of the same gene discovered in the families, the team discovered that the RNA (the important molecule present in all our cells we mentioned earlier) was not processed normally and is a key feature of the new disease being shown by the two families.

This discovery is a new cause of progressive kidney disease and it plays a key role in our understanding of the complex features of childhood kidney failure. The work has already received considerable attention from the scientific community; Jennifer went to Berlin and presented the findings to hundreds of other researchers. She says, “I hope this work will lead to new ways to treat families affected by kidney disease.”

This exciting research is a great example of how understanding a disease at the genetic level in fish could help scientists to one day identify new ways to treat disease in people and stop more children dying.

Find out more about our work in childhood kidney disease at: www.kidneyresearchuk.org

kidney disease ends here.

I decided to take up my own Bridges Challenge for Kidney Research UK because of its amazing work which transforms lives. It is a cause which is close to my heart.

My Bridges Challenge – how much have you raised?

To make a gift to Kidney Research UK call: 0300 303 1100

My Bridges Challenge

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A thirty-year tradition was sadly disrupted this year by the Covid-19 lockdown when our Bridges Walks events had to be cancelled. 2020 would have been the 30th anniversary of these flagship events. Thousands of kidney patients, their friends and families, and our researchers have enjoyed these walks over the last three decades, raising funds, remembering loved ones and making lasting bonds.

But this hasn’t deterred people up and down the country from devising fantastic ‘My Bridges Challenges’ to help us stop kidney disease in its tracks.

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mong the challenge participants were best friends Vivienne Allway and Margaret Cambell from Chelmsford who walked a route that took in seven locks, completing the Chelmer and Blackwater Navigation path in Essex. The best friends were inspired to raise money for Kidney Research UK following Margaret’s diagnosis of kidney cancer.

Margaret and Vivienne were pleased to be able to raise money for their favourite charity while continuing to social distance and stay safe.

Being involved without risks Margaret’s recent treatment for kidney cancer puts her at risk from coronavirus but this challenge has been a perfect way to stay involved without risking her health.

Vivienne said: “This really worked for us because we could do it together and keep safe. I’m also at risk as I have a lung condition.”

Margaret said: “We were signed up to do the London Bridges Walk but this had to be cancelled so it was suggested everyone try to do something that included the number seven. We decided to walk past seven locks along the Chelmer and Blackwater Navigation canal.”

Biking seven miles Ten-year old Molly Clayton from Surfleet led her family in a seven mile cycling challenge around the Lincolnshire countryside. Having contracted sepsis as a baby, Molly now lives with stage two chronic kidney disease and now has regular check ups at the hospital to monitor her blood pressure and fluid levels.

Molly said: “I decided to take up my own Bridges Challenge for Kidney Research UK because of its amazing work which transforms lives. It is a cause which is close to my heart.”

Swords out for kidney disease Meanwhile, martial arts coach Robert Boyd from Glasgow was sponsored to make 700 iaido sword cuts without stopping. The 33-year-old was inspired to use his passion for iaido, the Japanese art of sword drawing, which has been an outlet for coping with the physical and mental challenges of his kidney disease, particularly since his transplant.

“I went along to classes, and realised it wasn’t just swinging swords, it was a good way for me to have some focus and let off some steam without damaging myself,” he explained. His network of family and friends have helped him raise over £900.

Building a better future Also taking part despite not being able to leave their bubble were a family from Kent, who not only completed a seven mile walk – a welcome break from lockdown isolation – but also held a sponsored Lego bridge build.

Chelsea’s five year old son Olly has nephrotic syndrome which is currently controlled with drugs. However, Olly faces the possibility that he may need a kidney transplant at some point in his life.

Chelsea said: “Olly was diagnosed when he was one and a half years old. He has good kidney function with his medication but that could change in the future.”

Olly was keen to get involved with fundraising and used his time on lockdown to make

seven Lego bridges for his challenge, asking family and friends to sponsor his efforts.

Thank you Fundraising director for Kidney Research UK Marc Stowell said: “You don’t need us to tell you that the past months have been incredibly difficult, but during this time we’ve been overwhelmed by the kindness and dedication of our supporters.

“Fundraising has looked very different for us this year, so it’s been amazing to see our supporters raising vital funds and awareness for Kidney Research UK and taking part in our virtual events such as the #MyBridgesChallenge and My Ride London.

“We know that many of those taking part are themselves facing difficult times and we want to say a huge thank you to each and every one of you for choosing to fundraise and support the charity. Now more than ever we need to come together and ensure we support those with kidney disease and continue the vital research to find a cure in these uncertain times.

“Our fundraising continues, and we hope you’ve been inspired by our ‘My Bridges’ challengers as much as we have.”

Visit www.kidneyresearchuk.org or call our supporter care team on 0300 303 1100 to start your own bridges challenge today.

Kidney disease ends here.

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Research round up

Our research progress in action.

Featured below are some of the exciting new paediatric research grants we funded earlier this year before the pandemic took hold, thanks to our merger with Kids Kidney Research. This has significantly increased our capacity to invest in research specifically related to kidney disease in children, and we were able to award a total of £592k across a number of projects.

Genes and faulty bladders

Predicting kidney disease in IgA vasculitis

Over 900,000 children in the UK have bladder problems that cause bed-wetting, incontinence, constipation, infections and even severe kidney damage. More than almost any other medical condition, these bladder and bowel issues can really hurt children’s self-esteem, education and relationships.

For people with IgA vasculitis, there’s an abnormal protein from their immune system, IgA, that settles in throughout body. Once settled, IgA causes rashes, sore joints, tummy pain or, in some cases, kidney damage. While most children make a full recovery, a few (1–2 in every hundred) develop severe kidney disease. At the moment we have no way of knowing who will get better and who won’t.

Professor William Newman at the University of Manchester has spent the last decade trying to find the genes that cause inherited forms of severe bladder problems that often result in kidney failure.

These inherited conditions usually affect young children, who then need expert care. They have already discovered changes in several genes that result in severe bladder problems. But there’s still more to know. In this research, William is using new genetic techniques to look even deeper into this issue.

Dr Louise Oni from the University of Liverpool wants to develop a way to predict that kidney damage. Louise thinks that looking at different types of IgA is the key. The team will start with 40 patients in total, looking at healthy individuals and comparing their IgA with those who already have IgA vasculitis.

Success would mean doctors could explain to families the reason for their children’s bladder problems, check to see if they need regular check-ups and find new ways to develop treatments. William and his team are also working with affected families to seek input to guide the way they approach these studies and share information about them through charities like ERIC, the Children’s Bowel and Bladder Charity.

The project could offer doctors the ability to better predict which children with IgA vasculitis will get kidney problems. This would give parents and carers a clearer understanding of the path ahead of them. Louse has a vision that “No child with IgA vasculitis will get chronic kidney disease” and this project will provide a step to achieving this vision.

William is funded by a Paediatric Innovation Grant for £136,253.

Louise’s work is funded by a Paediatric Innovation Grant for £196,694.

We need your help more than ever. If you can donate, please visit www.kidneyresearchuk.org/donate

Research round up

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Improving dialysis for children

Cell catcher: kidney cells from wee

Children on haemodialysis already have to go through a lot: every week their blood is pumped out of their body and into a dialysis machine through a special tube called a central venous line. But the lines used in children are just miniature versions of the ones used in adults. And these can cause lots of problems, like slowing the flow of blood or even the tip of the line getting stuck and damaging the vein it goes into.

In fact, 45% of all central venous lines in children need to be removed and replaced, which means having an operation under anaesthetic.

What if your doctors could simply get kidney cells from your wee?

No needles needed. Professor David Long from the Institute of Child Health at University College London may have a “cell catcher” that could do just that.

Dr Rukshana Shroff and her team from University College London have teamed up with doctors from Great Ormond Street and biomedical engineers from UCL to fix this situation. These scientists are using computer simulations and scans to create accurate 3D printed models of children’s hearts and blood vessels.

But there is another way to get cells. Every day, dozens of cells from your kidney come out in your wee. This is completely normal but, of course, those cells usually end up in the toilet.

This amazing technology will let the scientists identify what causes these problems in children’s lines and give them a way to test new ideas.

Rukshana’s work is funded by a Paediatric Innovation Grant for £39,969.

Bardet-Biedl syndrome (BBS) is a rare genetic disease with lots of symptoms that include blindness, kidneys not working properly and even extra fingers or toes. Sadly, there’s no treatment for BBS. To get a handle on this disease, scientists need cell samples. Skin biopsies are an option, but this isn’t always the most comfortable procedure – especially for children.

To get these kidney cells, patients would normally need to travel to the hospital to give a wee sample since a lab needs to process it right away. But David’s team is looking at a way that children with BBS can wee at home, using a special “cell catcher” device, and send their samples to the lab.

This simple method could help researchers diagnose and treat this disease much faster.

David’s work is funded by a Paediatric Innovation Grant for £39,997.

kidney disease ends here.

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