Update magazine - Summer 2022

Update.

Summer 2022

Issue 28

The magazine from Kidney Research UK

Demands of dialysis – insights from a renal nurse Page 6 Harnessing technology to fight kidney disease Page 4

Have your say on mental health support Page 8

2

News

News

Tapeworm drug Covid-19 trial expanded into India

Transforming treatments

PROTECT-V, a clinical trial we helped to fund in its initial stages investigating whether a tapeworm drug can prevent Covid-19 infection in vulnerable kidney patients, has now expanded to India.

Researchers at the University of Newcastle have shown for the first time that donor kidneys can be treated with a new type of therapy to repair damage prior to transplant.

I am writing this note as we prepare for Volunteers Week.

The last two years have been incredibly difficult, but it has been truly inspiring to see the kidney community step up and volunteer to support us. Far from just helping us keep ticking over, you see volunteering as an opportunity to push boundaries and think creatively to make sure we remain true to our values.

We’ve seen so much commitment from people across the UK who sit on research panels, lay advisors who provide a steer across our work, volunteers who serve in our shops, experts who help select research projects for funding. From families who share stories and take part in campaigns in parliaments. From health care professionals who inform our work and from those on our trustee board. It all combines to make the charity thrive and grow. This year there are more of you than ever. And you’re working with us in new ways. Your expertise, experience and skills are invaluable. We are sincerely grateful for your continued support.

The magazine is full of the great progress made, and some of the changes you may notice in this issue of Update are thanks to our volunteer readers’ panel who have helped us find different ways to share research news.

On pages 6-7 you can read about renal nurse Rachel Cox who has volunteered to give us an insight into a typical day working on the dialysis unit at University Hospital Crosshouse, in Kilmarnock. And on pages 13-15 you’ll see just a few of the wonderful supporters who have taken on challenges, attended an event or volunteered their time to raise money and awareness.

If you’re inspired to get involved, our brilliant team will be delighted to hear from you and will support you all the way. You can contact us on 0300 303 1100 or supportercare@kidneyresearchuk.org.

Thank you – happy reading.

Sandra Currie, Chief executive

Dr Emily Thompson and her team are investigating therapies that can be delivered via normothermic perfusion – a technique pioneered by our researcher Mike Nicholson which flushes donor kidneys with warm oxygenated blood prior to transplant – to revive and repair these marginal kidneys.

Despite the successful roll out of vaccinations against Covid-19 in the UK, many patients with kidney disease remain vulnerable to infection.

lining of the nasal cavity twice a day.

Trial participants were randomised to receive either a placebo (dummy) drug or niclosamide for up to nine months.

The PROTECT-V trial was set up with funding from Kidney Research UK, LifeArc, the Addenbrooke’s Charitable Trust and UNION therapeutics and support from the NIHR Cambridge Biomedical Research Centre to test drugs that may prevent Covid-19 infection in people on dialysis, people who have had a kidney transplant, and people with auto-immune diseases affecting the kidneys.

The trial began in February 2021 at Addenbrooke’s Hospital in Cambridge and has since been rolled out to over 40 hospitals across the UK. The team aims to recruit at least 1,500 kidney patients across the UK and they recently passed the exciting milestone of recruiting over 1,000 people.

The first drug being tested is niclosamide, a drug usually used in tablet form to treat tapeworms. Early lab tests showed it could stop the virus that causes Covid-19 from multiplying and entering cells of the upper airways. For this study, niclosamide was reformulated into a nasal spray to deliver the drug directly to the

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

In an exciting new development that will both strengthen the study and potentially accelerate the results, the niclosamide arm of the PROTECT-V trial has now expanded to India.

In India, the study is being funded by the George Institute for Global Health India and being led by Professor Vivekanand Jha. The team aims to recruit at least 750 kidney patients, with the first patients already enrolled.

Cover photo Lead nurse practitioner Rachel Cox takes us behind the scenes of the dialysis ward at University Hospital Crosshouse in Kilmarnock.

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

Covid vaccination study extended

New hope for donor kidneys

To make more kidneys available for transplant, doctors are accepting ‘marginal’ kidneys that may not be in an ideal condition – but these may work less well after transplantation and patients may then require another transplant.

Welcome.

3

Ribonucleic acid (RNA) is a molecule that converts genetic information from our DNA into the body’s proteins. MicroRNAs are very small strands of RNA that have been shown to play a role in kidney injury.

In this study, Emily used normothermic perfusion to deliver a novel drug that interferes with the specific microRNA that researchers think is involved in injury.

The team showed that the drug was delivered directly to the damaged cells, and it restored the levels of the target proteins to normal levels.

Emily said: “This is really exciting as it offers a new way to make more kidneys suitable for transplant. It could offer hope to more people on dialysis and potentially shorten the waiting list.

Dr Emily Thompson

“This work has completely changed our thinking as it shows that we can pre-treat the kidney directly, instead of treating the whole patient before or after transplantation. We can now explore other therapies in this setting, for example, treatments that could potentially reduce the need for lifelong immunosuppression.

Currently these tests are done in the lab but if they transfer to the patient setting, as we hope they will, those who receive a transplant may receive better quality kidneys that last a lifetime.”

The study was published in the American Journal of Transplantation.

Striving to stop transplant rejection Our researchers at Imperial College London have shown that an existing drug may be an effective therapy to prevent antibody-mediated rejection of transplanted kidneys.

One of the main reasons kidney transplants fail is because the recipient’s immune system attacks the transplanted tissue.

This is called ‘antibody-mediated rejection’.

If a patient has been exposed to foreign tissue types, for example during pregnancy, transfusion or previous organ transplant, then they will develop antibodies against them. Patients with exceptionally high antibody levels that react to foreign tissue are referred to as ‘sensitised’. This makes it harder to find a match for transplant.

Professor Fred Tam and his team have discovered greater levels of an enzyme, called ‘spleen tyrosine kinase’ (SYK) in rejecting transplanted kidneys, compared to normal kidneys, and these have previously been shown to be involved in stimulating the immune system in several autoimmune diseases.

A known treatment called fostamatinib can turn off this enzyme. With our funding, as part of our Making Every Kidney Count campaign, Fred and the team have tested whether fostamatinib could reduce the levels of antibodies in sensitised animal models. They found that early treatment with the drug prevented the production of these incompatible antibodies, which could increase sensitised patients’ chances of finding a suitable transplant match.

Fred and the team also have an ongoing pilot clinical trial to study the effect of fostamatinib in patients with kidney transplants to see if it helps to treat rejection.

Fred said: “It will be important to investigate whether early treatment with SYK inhibitor may be useful in reducing the production of tissue type incompatible antibodies in potential transplant recipients, so that more patients may be offered kidney Prof Fred Tam transplantation.”

Monitoring of kidney patients to understand how well protected they are by Covid-19 vaccines is continuing through the Melody study. We are supporting researchers at Imperial College London who are also testing for antibodies against the virus in young transplant recipients (aged 12–17) and in transplant recipients who participated in the study after their third vaccine dose but have since had a fourth dose.

We are funding the MELODY study alongside the Medical Research Council, Blood Cancer UK, Vasculitis UK, and the Cystic Fibrosis Trust, with support from NHS Digital, NHS Blood and Transplant and the Department of Health and Social Care.

Immunocompromised adult patients, including those with cancer, autoimmune diseases, and kidney and other organ transplants are given a home-based, self-administered test to see if they have developed antibodies against the virus that causes Covid-19.

In late 2021 the UK government announced that people who are severely immunocompromised should have a fourth vaccine dose three months after their third primary dose. This also now includes immunosuppressed children and young people (12–17 years old).

With these guidance changes in mind, we expanded the MELODY study, which is led

by Dr Michelle Willicombe.

Dr Aisling McMahon, executive director of research, innovation and policy at Kidney Research UK said: “We were excited to see this study get off the ground at incredible speed and begin to identify those who remain at risk from COVID-19 after three doses of vaccine. It is important that, in line with the updates in vaccination guidance, we continue to monitor how well the vaccines are working in kidney patients and identify individuals who are still vulnerable to Covid-19 infection and may benefit from additional treatments.”

kidney disease ends here.

MedTech researchers

h c e T d e M ers

research

new venture In an exciting we launched for the charity, competition h c e T d e M y e our Kidn e to accelerate th r e b m e v o N in of nd availability a t n e m p lo e v de l technologies a n o ti a rm o sf tran hallenges of c e th g in ss re add . kidney disease

We were thrilled to receive more than 25 individual applications from a range of sectors including artificial intelligence, engineering, and wearable technology.

Lead investigators Dr Sergei Krivov and Dr Stefan Auer

Lead investigator Professor Rukshana Shroff

Applicants demonstrated the highest quality of innovation and clearly outlined the positive impacts their research could have on kidney patients. Twelve projects were shortlisted, and the researchers pitched in a ‘Dragons’ Den’-style assessment to compete for seven prizes worth £30,000 including attendance on our bespoke academy programme. We are delighted to introduce the winners!

Lead investigator Professor Neeraj (Bean) Dhaun Location:

Location:

University of Leeds

University of Edinburgh

University College London

Challenge:

Challenge:

Challenge: Monitoring means quick

Acute kidney injury, when the kidneys stop working properly, can be very severe so early diagnosis is vital.

It can be hard to predict decline in kidney function but thinning at the back of the eye can be a sign.

Target:

Target: People in the early stages of

People at risk of acute kidney injury

kidney disease

Mission: Sergei and Stefan are using

Mission: Bean and his team are testing

Lead investigator Dr Laura Denby

fast, non-invasive eye scanning techniques that are available in most high street opticians to see if they can be used to reliably detect kidney damage.

Lead investigator Dr Tim Bowen

Location: University College London Great Ormond Street Institute of Child Health

Location:

Location:

Challenge: Dialysis lines are designed

Challenge: Current methods of

monitoring kidney health provide very limited information.

Challenge: The only way to test if

for adults and don’t account for the differences in anatomy and blood flow in a child’s body.

Target: Children who need life-saving dialysis treatment

Mission: Rukshana and her team are

using a bioengineering approach to improve the design of dialysis lines so that this lifesaving treatment can be performed safely in children of all ages.

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

Lead investigator Professor Alan Salama

Location:

artificial intelligence based on routine blood tests to predict which patients will suffer from acute kidney injury so that healthcare providers can intervene early and prevent or reduce injury.

University of Edinburgh

Target: People with kidney disease who need regular monitoring

Mission: Laura and her team are

developing a novel method using ultrasound technology to burst tiny bubbles that they have injected into the patient which cause the kidney cells to release molecules that can report on the health of the kidney, thereby creating a ‘liquid biopsy’.

5

Cardiff University

a kidney fails to work straight after transplant is with a painful and risky biopsy.

Target: People who have recently had a kidney transplant

Mission: Tim and his team are

developing a quick urine dipstick test to monitor how well kidneys are functioning after transplant without the need for unpleasant biopsies.

intervention if kidneys start to deteriorate but most tests need processing in specialist laboratories.

Target: People with kidney disease, from early-stage to advanced

Mission: Alan and his team are

developing two types of microsampling devices – one for blood and one for urine – which would enable patients to provide samples remotely so that their kidney disease can be monitored easily and efficiently.

Lead investigator Professor Maria Grazia De Angelis Location:

University of Edinburgh

Challenge: Haemodialysis uses a lot of

water – approximately 78,000 litres of tap water per year per patient – and requires a big machine.

Target: People undergoing haemodialysis treatment

Mission: Maria and her team of

engineers are developing a novel technology to recycle the water used during haemodialysis, to improve efficiency, sustainability, cost, and to allow the development of lightweight, wearable artificial kidneys.

kidney disease ends here.

6

Day in the life of a dialysis unit

Day in the life of a dialysis unit

Lifting the lid on the demands of dialysis.

Rachel Cox has been working in renal medicine for 30 years. Now a renal practice educator for NHS Ayrshire & Arran, she trains staff and is responsible for best practice. Helping kidney patients is Rachel’s passion – so much so that she donated a kidney to a stranger. Here she tells us about life on a dialysis ward.

I check my emails and diary and sort out what I am up to. A full-on day ahead. At University Hospital Crosshouse we look after chronic kidney patients on dialysis and patients with acute kidney injury are treated in the high dependency unit. Patients also dialyse at University Hospital Ayr. Today I’m at Crosshouse.

Visit the Home Haemo section to see my colleague Wilma and ask her how her training is going. Our Home Haemo team help support 7.7% of the dialysis patients in Ayrshire and Arran to dialyse at home.

A spot of lunch then a quick walk, fresh air does us the world of good.

Our patient May lets me use her treatment to show staff nurse Kirsty how the blood volume monitor works on our machines.

This allows us to monitor closely the effect of fluid removal so we can make modifications before someone becomes unwell.

Database time.

It’s not everyone’s cup of tea but the information helps us keep tabs on our patients and keep them as well as possible.

I’m the IT guru so people often come to me for help.

Marion is being weighed on our stand-on scales which we use for patients who would struggle with normal scales. Being able to get an accurate weight is essential to help maintain cardiac health.

Chat with long-term patient John. He introduced me to the fundraising team, which led me to running the London Marathon for Kidney Research UK in 2019.

He’s such a big supporter of the charity as his tattoo shows! He sadly can’t have a transplant. His other tattoo says: “Dialysis: damned if I do, dead if I don’t” Dialysis can be tough. The morning haemodialysis patients are getting up at an ungodly hour to come in, have their dialysis, go home and sometimes that is all they manage all day – unless they’re very lucky. Or they’re coming in halfway through the day and they’re getting home early evening. And they’re doing that three times a week.

I’ve just sent an email to a body composition monitor company as our monitors are due to be renewed so we’re having a look at some new products out there. These machines tell us how much fat, lean muscle and excess fluid someone does or doesn’t have. This is part of the drive to help people get better fluid management.

A wee trip into the library to look at the latest renal books to make sure we are up-to-date. I use a mixture of tools to keep myself abreast of the current thinking in renal, which is vital in my role. I like bringing in changes to make people’s lives better. New practice comes out of new research evidence, so we can make things even better than they were before.

I’ve seen a lot of developments in my career.

A stand out one was the new treatment for people with atypical-haemolytic uraemic syndrome (aHUS), which can help prevent kidneys failing, it’s absolutely phenomenal.

And then there’s the shift we’ve made to using haemodiafiltration machines over haemodialysis machines. I think these help people feel better during their dialysis.

In some ways everything has changed and yet nothing has changed. The treatments are

Off for a run. It really is the magic pill for me! It keeps me out of mischief and allows me to eat a few cakes! I’ve competed in a few ultra marathons since donating my kidney. maybe easier to carry out, and sometimes patients don’t feel as unwell. But the impact it has on people’s lives hasn’t changed.

That said, I want to do the best I can for patients. I like to think I do a good day’s work and it makes a difference.

Will you join Rachel in supporting our campaign to Transform Treatments? Visit www.kidneyresearchuk.org/transformtreatments to find out how you can help.

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

7

Having one less kidney hasn’t impacted my ability to do anything.

Actually, since giving my kidney my confidence in myself has improved because I know that I’ve done something that has made a difference. So I benefited more from giving my kidney than I’ve lost.

kidney disease ends here.

8

Mental health

Mental health

9

67% of kidney patients experience symptoms of depression.

T

imed to culminate on World Kidney Day, the first wave of our campaign saw over 1,000 kidney patients respond to our mental health survey* with concerning results. The survey revealed that two thirds (67%) of kidney patients experienced symptoms of depression while living with kidney disease, with 27% of those surveyed saying they have considered self-harm or suicide as a result of their kidney disease.

Shaping the future of mental health support.

Despite this, 68% of respondents said they had not been offered any mental health support. The survey pointed to additional serious consequences, with a third of kidney patients saying their poor mental health meant they were not able to fully take care of their physical health.

This year kidney patients have been sharing their mental health experiences as part of our campaign calling for improved access to specialist mental health support from renal counsellors.

Now, a new Government consultation on mental health provides a key opportunity for kidney patients’ voices to be heard.

With this information, we launched our campaign, targeted at politicians, calling for all kidney patients to have access to renal counsellors from the point of

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

Kidney Research UK will be responding to the consultation, and we encourage patients and families to share their views too.

Alison Railton, Head of policy and external affairs at Kidney Research UK

Many participants admitted the emotional and physical strain involved in kidney disease and its treatments left them despairing and isolated. Patients often felt unable to talk to nursing staff about their mental health; many who did access psychological support felt a more specialist knowledge from providers would have resulted in better empathy and support.

The more kidney-related responses which are submitted, the louder the kidney voice will be. diagnosis. Over 130 people petitioned their political representatives to raise the issue with the health ministers in each devolved nation.

“We were pleased to see MPs and MSPs engaging on the topic, meeting with patients and writing to the minister,” says Alison Railton, head of policy and external affairs at Kidney Research UK. “It was a positive start to the campaign.”

The Government has since published a consultation on a new Mental Health and Wellbeing Plan for England. This ‘call for evidence’, which gives everyone the chance to share their experiences, will shape a new 10-year mental health plan to prevent mental health conditions, improve mental health support across the country and put mental and physical health on an equal footing. The consultation is open until 7 July.

“Kidney Research UK will be responding to the consultation, and we encourage patients and families to share their views too,” says Alison. “The more kidneyrelated responses which are submitted, the louder the kidney voice will be. Our survey shows many kidney patients are living with mental ill-health, yet access to support is poor. This consultation gives the kidney community the chance to call for change . We will be seeking similar opportunities in the other nations.”

* The survey ran for three weeks from 22 January 2022 and the results were independently verified by the research agency SAPIO Research. Adults at all stages of kidney disease were surveyed, including those on dialysis or waiting for a transplant.

For more information on the consultation and how to feed in your views and experiences, visit: www.kidneyresearchuk.org/mentalhealth

Renal counsellor offered me a lifeline Ayesha Edmondson has focal segmental glomerulasclerosis (FSGS) and faces a six-year wait for a kidney transplant, likely to be preceded by dialysis. Forced into retirement after a 30 year career in retail, due to ill-health, perhaps it is unsurprising that her mental health has suffered.

“A routine visit to the hospital during the pandemic in 2020 triggered a chain of events that would change me forever. I must have said something to my regular renal nurses about how I was struggling.

A few days later I received a phone call from a member of the renal counselling team. She asked was I happy to have a chat as my nurse had noticed I wasn’t myself at the last visit. I remember crying because I didn’t realise I had got to the point where I needed to talk to someone.

I was spiralling and I didn’t know how to stop it. My mind was full of questions, ifs and buts. I couldn’t control it, let alone manage it.

The call couldn’t have come at a better time; being isolated from family and friends because of Covid made things worse in my head. But after months of therapy I came out the other end with an understanding of how I can cope with my journey. So when I was invited to take part in the mental health survey planning group I was excited to share my experience. It’s crucial to people to know what they are feeling is kind of normal and that help is available.

I was happy to talk to my MP, Christian Wakeford to gain his support to make mental health services available to all kidney patients. People should have what I had: fantastic support. If I can help make a difference, I want to try.

kidney disease ends here.

10

Research round up

Research round up

Research in action.

Thanks to you, our supporters, we’ve pledged to fund a number of new projects in the last few months. Here’s just a selection, with thoughts from our readers’ panel about the difference they will make.

Understanding health-related quality of life and its impact among people with chronic kidney disease

Creating special immune cells to reduce kidney injury and scarring

Dr Simon Fraser’s work is funded by a research project grant from Kidney Research UK for £120,000.

Professor Giovanna Lombardi’s work is funded by a research project grant from Kidney Research UK for £185,000.

The problem Chronic kidney disease (CKD) affects about one in ten adults in the UK. As CKD is a long-term condition, it is vital that we understand more about how it can affect a patient’s quality of life. So far, most studies looking at health-related quality of life have focussed on patients with kidney failure, but we know very little about the relationship between earlier stages of CKD and quality of life.

What this might mean for kidney patients

The problem

The team hopes to identify factors that could be changed to improve the lives of people with CKD; to investigate the impact of other long-term conditions on health-related quality of life; to understand how and why health-related quality of life changes over time for people with CKD; and to explore how having lower health-related quality of life might affect the chances of experiencing future problems, such as unplanned hospital admissions, worsening of CKD, heart and blood vessel disease or death.

Ischaemia-reperfusion injury is a process that occurs when the blood supply returns to a tissue that has been starved of oxygen for a period of time. This can be a common cause of acute kidney injury, for example following a period of very low blood pressure, or during kidney transplant and it can lead to irreversible scarring and the development of chronic kidney disease. A type of immune cell called regulatory T cells (Tregs) have been shown to protect kidneys from scarring after ischaemia-reperfusion injury. However, Tregs have also been shown to be less stable and function less well in environments where there is a lot of inflammation, such as in the kidney after ischaemia-reperfusion injury.

The solution We have awarded Dr Simon Fraser from the University of Southampton a research project grant to investigate the factors that affect quality of life for patients with CKD who are not on dialysis using data collected in the National Unified Renal Translational Research Enterprise (NURTuRE-CKD) study – a long-term research study, using information from 3,000 people with CKD from 16 kidney outpatient clinics across the country.

As a patient, a diagnosis of CKD can seem like the start of a waiting game. This research could lead to empowering us to participate in improving our outcomes rather than passively waiting for the next appointment. Gillian Mundy

The solution We have awarded Professor Giovanna Lombardi from King’s College London a grant to alter Tregs so that they are protected from

Understanding the causes of childhood kidney failure and delivering therapies to treat them

Investigating links between changes in the structure of cells and cyst formation

Dr Jennifer Chandler’s work is funded by an Intermediate Training Fellowship from Kidney Research UK for £200,000.

Professor Albert Ong’s work is funded by a joint research project grant of £230,000 from Kidney Research UK and The PKD Charity.

The problem Up to two in 100,000 children per year worldwide are diagnosed with diseases that they have been born with that cause damage to their glomeruli- the tiny filtering units of the kidney. There are currently no treatments available to slow the decline to kidney failure in these children, leaving dialysis or transplant as their only options.

Most of these diseases occur because of faults in the genes in special cells called podocytes, which form part of the glomeruli and help to prevent proteins and other large molecules from leaking out of the blood.

The solution Using detailed genetic analysis in animal models with the most common gene faults that cause damage to the glomeruli, Dr Jennifer Chandler from the University College London Great Ormond Street Institute of Child Health will identify potential targets for treating the

disease. She will then test a new approach to deliver genetic therapies directly and specifically to the podocytes to restore the levels of these promising therapeutic targets back to normal.

What this might mean for kidney patients This project has the potential to both identify new treatment targets for preventing damage to the glomeruli and provide an efficient method to deliver treatments specifically to the cells that are damaged, offering hope that children with this type of kidney damage may not progress to kidney failure.

Childhood kidney failure is not well understood at all and so studies like this one could begin to help identify new treatment targets to benefit so many children around the world. Bekki Velounias

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

11

The problem Autosomal dominant polycystic kidney disease (ADPKD) is the most common genetic kidney disease and affects 70,000 people in the UK. Over time, fluid-filled sacs (cysts), replace the healthy kidney tissue leading to a progressive decline in kidney function. However, it is not fully understood why or how cysts form.

The solution Professor Albert Ong and his colleagues at Sheffield have discovered that a structure called the actin cytoskeleton could be important early in the disease. The actin cytoskeleton is a flexible internal scaffold that supports the shape and size of a cell, and it is markedly different in healthy and cystic cells. An enzyme called RhoA-associated protein kinase (ROCK), remains ‘switched on’ in cells that form cysts. Albert and his team are going to study how common and rare gene faults found in ADPKD patients modify the function of the relevant protein and enzyme so they can alter the actin scaffold and test new drugs that could reverse these changes.

the inflammatory environment, but also so that they specifically bind to the kidney. By targeting the cells to the kidney, the therapy is more likely to be effective. The team will first test these cells in an animal model of kidney injury as a proof of concept for future clinical studies in patients with AKI.

What this might mean for kidney patients This project offers hope that one day we may be able to fully repair the long-term damage caused by ischaemia-reperfusion injury.

This research project could potentially prevent permanent kidney damage to many patients, so avoiding the potential need for dialysis and transplant, and could be less costly. Judy Marks

Normal

PKD

Image supplied by Dr Andrew Streets, University of Sheffield.

What this might mean for kidney patients Through a detailed study into the mechanisms of two different gene variants that can cause ADPKD, Albert will be able to define new molecular targets that are common to how all cysts form and test new drugs that could stop cysts from forming in the first place.

Amazing that once again Kidney Research UK is sponsoring ground-breaking work that will benefit the ADPKD community in finding the root cause of the disease to enable future solutions to prevent the disease from occurring. Barry Jacobs

kidney disease ends here.

12

Research round up

Thank you

Can changes in gut bacteria cause kidney disease in people with diabetes?

Our thanks to...

Dr Kaitlin Wade and Dr Abigail Lay have been awarded a grant of £85,000 from Kidney Research UK for a PhD student to carry out this work.

The problem Over one-third of people with diabetes suffer from diabetic kidney disease (DKD) but we still don’t fully understand why it develops and progresses. The human gut is host to over 100 trillion micro-organisms – including bacteria – collectively called the gut microbiome. Recent studies have shown that changes in gut bacteria are linked to the development of DKD.

The solution We have awarded Dr Kaitlin Wade from the University of Bristol and Dr Abigail Lay from the University of Manchester a grant to recruit a PhD student to study whether, and how, changes in the gut bacteria are causing DKD, or whether it is purely a marker of disease using a combination of human genetics, population health research, and laboratory studies using human kidney cells.

Both outcomes would be equally important. If it is the case that the gut microbiome has a role in causing DKD, then it might be possible to modify it, for example with diet or lifestyle changes, pre-/pro-biotics or

antibiotics, and prevent DKD. If it turns out that the changes to the gut microbiome are only associated with DKD, rather than causing it, this is still very useful information as it could be used as a predictor to identify those at risk of developing DKD.

What this might mean for kidney patients This research has the potential to highlight if, and how, gut bacteria can be either measured or modified for the diagnosis, prevention, and treatment of DKD.

As a diabetic on haemodialysis this research appears exciting, whether the link is proven or not, because it could in the future lead to advances in preventing DKD and to helping diabetics modify their diet/lifestyle etc at the early stages of both diabetic and kidney diseases, which can only be very beneficial. Georgina Revell

Does a common childhood virus hold the key to reducing cancer risk and improving kidney survival in transplant patients?

Kidney transplant patients develop ureter (the tube connecting the kidney to the bladder) and bladder cancers much more frequently than the general population, but we currently don’t know why this happens.

The solution ‘BK’ virus infects most people during childhood. Once you have been infected with the virus, it can stay dormant in the kidney unless it is reactivated. Reactivation can happen in around one-in-five kidney transplant patients due to the medication used to stop transplant rejection. Dr Simon Baker from the University of York has collected evidence that BK virus infects human urothelium – the layer of cells lining the bladder and ureter – leaving changes that could lead to cancer and he will now test this further.

Simon will infect cells from the urothelium with BK virus to study changes to the cells’ DNA caused by the virus. He will then compare this to the DNA of tumours taken from kidney transplant patients with a history of

Thank you to everyone who’s joined us to help end kidney disease.

Here’s a handful of our Team Kidney heroes!

Ema and Adam Todd

BK virus infection to see if he can see any similarities. Simon will also analyse cells from the urothelium that are shed in the urine of patients with active BK virus infection to identify biomarkers for monitoring progression of the disease.

Sara, Matt and Joseph Turkentine

Ema and her husband Adam walked 10,000 steps every day during the month of April to help raise money for Kidney Research UK. While still pregnant with their son Freddie, Ema’s doctors detected that he had a blocked kidney.

The problem is common in boys and typically clears up after birth, but as soon as Freddie arrived, his condition was identified as being serious. Still just five months old, Freddie has been through a number of invasive procedures to understand the problem.

Ema’s challenge has raised vital funds to help people like Freddie, and has allowed her to focus on her own thoughts and mental health during the process.

Dr Simon Baker’s work is funded by an Intermediate Training Fellowship from Kidney Research UK for £250,000.

The problem

13

“Fundraising has given me an opportunity to self-distract and not focus on what is going on,” she says. “When I go on my walks to boost my steps, it gives me

much-needed time out, and is also great as a way to spend time as a family away from the TV and other electronics.

I have loved exploring new places whilst raising money for this fantastic charity and my son.”

A massive thank you to Sara and Matt Turkentine for sharing their family’s story with us for our latest fundraising appeal which, so far, has raised £11,000. They were getting ready for their three-year old son, Joseph, to have his first kidney transplant operation – mum Sara is donating one of her kidneys to him.

Unfortunately, they found out the night before the surgery it could not go ahead.

For now, the family are waiting for a new date for the transplant and Joseph will stay on dialysis a while longer.

We’re collecting good luck messages for Joseph ahead of his transplant operation, visit: www.kidneyresearchuk.org/ wishes-for-joseph

What this might mean for kidney patients If Simon’s theory is correct, this study will highlight the importance of monitoring BK virus closely in kidney transplant patients and provide evidence to support a trial giving kidney transplant patients a vaccine against BK virus prior to transplant, or to test preventative treatments to reduce their risk of cancer and transplant rejection.

This research could have a positive and beneficial impact on renal transplant patients by stopping the occurrence of life-threatening cancer related disease. Paul Cummins

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

Harry Greenwood As part of completing his Duke of Edinburgh Bronze Award, Harry has been volunteering with us using his social media skills. Harry has been helping get our new TikTok channel off the ground, editing videos and sharing his knowledge with our social media team as we look to reach new audiences. Thanks so much Harry.

Follow us on TikTok: kidney_research_uk

RAISED £11,000

kidney disease ends here.

14

Thank you

Thank you

The Headings family

Shannon Moore

Clare Purkiss

Beryl Headings has raised £2,500 at a series of fundraising events at the Ormskirk Golf Club where she’s a member. Beryl organised mixed golf competitions, guess the weight of the pumpkin, a Christmas raffle and a post-match luncheon where she gave a talk focusing on how kidney failure affects children and adults and their loved ones. When she was appointed Ladies’ Captain in January 2020, retired nurse Beryl was inspired to nominate Kidney Research UK as her chosen charity as her granddaughter Isabella had been on dialysis since she was just two days old.

Shannon was diagnosed with a rare kidney disease called Fanconi syndrome when she was just 17 years old after falling seriously ill and being admitted to intensive care. Fanconi syndrome is a disorder that affects the tubes leading to the kidney. Essential substances the body needs like water, phosphate and potassium aren’t able to be retained but are all wasted and passed through the urine. Without daily medication to keep her electrolyte levels stable, Shannon’s condition would be fatal.

This year, Clare is celebrating five years since her transplant by raising money for Kidney Research UK. She received a living donation from her mum in 2017 and has found the five-year road to recovery difficult. With her health now more stable, Clare wanted to mark her kidneyversary this year by organising a swimathon at her local David Lloyd club. With the help of swimming coach Ash Tuck from Kinetic Sports, Clare and her group swam a total of 3,000 lengths and raised £1,400 for Kidney Research UK. Clare is now looking to continue her sporting endeavours with the hope of competing at the transplant games in July this year. We wish her all the luck in the world!

In addition, Isabella’s mum Emma and dad Neil are also avid Team Kidney supporters, having joined the team that reviews research applications from a lay perspective. Emma also took part in the 850 Challenge last year and wouldn’t think of buying Christmas cards from anywhere else.

RAISED £2,500

Isabella is now three years post-transplant and doing well despite some continuing challenges. Huge thanks to the whole Headings family and the generosity of the ladies at Ormskirk Golf Club for their amazing support.

Sanjay Mistry Sanjay has diabetic kidney disease and recently received a transplant.

Passionate about raising awareness of the gruelling side effects of treatments and amongst people who are at risk of kidney disease, over the past year Sanjay has been involved in numerous projects with Kidney Research UK. He is now a patient representative on the chronic kidney disease and diabetes group, sharing his patient experience to influence research priorities and help design effective research studies.

Sanjay has also joined the steering group for one of our current studies on how itchy skin affects kidney patients.

He worked with the lead researcher to shape the survey and interview questions used. Sanjay was also featured as part of the World Kidney Day 2022 patient stories that helped raise awareness to new audiences.

Shannon now lives with her partner and son in Glasgow and is expecting her second child. She recently started to give regularly to Kidney Research UK to help research towards new treatments for kidney patients. “I started donating to Kidney Research UK a couple of months ago as I think everyone that has a kidney disease deserves help and treatment. I currently donate £5 a month but I have recently raised £115 through donations from friends and family.”

Shannon’s generosity means that more research can be done into rare conditions such as hers. Every donation matters in the fight against kidney disease.

Fred Gibbs

Elaine Horne Kidney donor Elaine is gathering sponsors and lacing her trainers to celebrate her son’s ‘kidneyversary’ at the Edinburgh Kiltwalk.

Elaine’s son Luke was experiencing symptoms of Covid-19 but tested negative. He was called into his GP for a urine sample only to be admitted to intensive care. Doctors explained if he had not come into hospital, he may have suffered a fatal cardiac arrest.

Luke soon started gruelling five-hour dialysis sessions three times a week.

Elaine donated her kidney to him in September 2021 and the two have since made a full recovery.

Kiltwalkers can choose from different length routes and The Hunter Foundation will add another 50 per cent onto any sponsorship. Join Elaine and #TeamKidney on 18 September 2022, register for just £5 here: www.kidneyresearchuk. org/fundraising-events/kiltwalk/

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

Richard Bennett Richard was born with Alport syndrome and has received two living donor transplants and had dialysis along the way. He joined our lay advisory group last year and has been heavily involved in our research grants rounds. He has attended full day meetings as part of our grants committee panels sharing collated patient opinions on funding applications and helping to influence which are recommended for funding.

Richard has also been key in helping us evaluate what has worked well and what needs to be improved. This process would not be possible without patient representatives like Richard.

All our guests at the Gala Dinner Joanna Lumley and Andy Cole provided the star factor at our Gala Dinner at The Brewery in April which raised over £130,000 thanks to the combined generosity of more than 300 guests and sponsors. It was an incredible night of entertainment and fundraising and wouldn’t have been possible without the dedication of Prof Sunil Bhandari, Barry Jacobs, Prof Liz Lightstone, Gary McGuire, Laura Plumptre, Kate Rolfe and Amanda Walbuck from the events committee, poignant speeches by patient Eric Douglin and researcher Dr Emily Thompson, and the kind support of our sponsors and volunteers.

Sasha Bellamy

RAISED £1,400

This April, Fred and his father Pete ran the Brighton Marathon to raise money for Kidney Research UK. The duo took part in the 26 mile event to support Fred’s nan Sue Fairthorne who is living with stage five kidney failure and receiving peritoneal dialysis three times a day. Fred and Pete raised over £1,500 which will help to accelerate research into much-needed improvements in gruelling treatments like dialysis.

Even after crossing the finishing line on Brighton’s seafront, Fred’s fundraising work is still not done.

“I want to continue challenging myself and run more marathons for the charity to help fund future research,” he says. We say, go Fred!!

Sasha first shared her story with us last year when she was waiting for a new kidney, and the great news is she has since undergone a successful transplant!

Sasha has been documenting her story with a series of short videos, including the day she had her operation, to shine a light on the transplant journey. She is passionate about raising awareness of kidney disease, particularly amongst young people, and hopes her videos will encourage others to share their stories and know that they are not alone.

Weekly Lottery Thank you to all our fantastic Weekly Lottery players, together you have raised over £110,000 – to help us fund more life-changing research. In the 19 months since we started the Weekly Lottery, more than 1,600 prizes have been won!

RAISED £1,500

15

RAISED £130,000

Diary dates We’d love to see you at our events – visit our website for details!

Skydives (nationwide) Sunday 3 July London Bridges Walk Sunday 31 July #850CycleChallenge July/August Big Garden Party Monday 29 August (bank holiday) Tour o the Borders Sunday 4 September Great North Run Sunday 11 September London to Brighton Cycle Ride Sunday 11 September Kiltwalk Sunday 18 September Charity Golf Day Thursday 29 September TCS London Marathon Sunday 2 October Andy Cole Fund Gala Dinner, The Dorchester, London Thursday 3 November

Feeling inspired?

Request your fundraising pack here: www.kidneyresearchuk.org/ tell-us-about-your-fundraising

If you would like to get involved, you can start playing today for £1 per entry: lottery.kidneyresearchuk.org

kidney disease ends here.

You can change the future of kidney disease.

Write your Will for FREE today Entrepreneur Laurence Isaacson CBE left us a generous legacy gift which enabled us to launch three new research awards into transplantation. Laurence had an enormous zest for life, which he channelled into the restaurant and performing arts industries and into his support for research. His passion and drive will live on in our work, transforming the lives of kidney patients.

Visit farewill.com/update22 to setup your FREE Will today.

Kidney Research UK is limited company registered in England. Registered charity no. 252892. Scottish charity no. SC039245. Registered company no. 905963.