Update Spring 2021

Update.

Spring 2021

Issue 24

The magazine from Kidney Research UK

Urgent trial to protect kidney patients from Covid-19 Page 04 Research confirms obesity is a cause of kidney disease Page 06

Keeping mums and babies safe through research Page 10

2

News

Organ donation moves for Scotland and Northern Ireland The laws around organ donation continue to shift for people in the UK, with new legislation coming into effect in Scotland this spring, and a consultation opening in Northern Ireland.

Welcome.

This year, we mark our 60th birthday. In 1961 a group of people with the vision to improve the lives of kidney patients set up a charity called the National Kidney Research Fund, which later became Kidney Research UK. We’ve achieved so many things across six decades and this year, we’ll share and celebrate the success that many of you have made happen. There is so much more to do. On pages 8 and 9 read how you can help us move our work forward and fund the decades ahead.

Wales was the first UK nation to introduce opt-out legislation in 2015, with England following suit in May 2020. This means people are assumed to be potential organ donors after they die, rather than having to opt-in. This opt-out system (or ‘deemed consent’ system) means people need to sign the opt-out register if they do not wish to donate their organs when they die.

Scotland will now follow Wales and England, when the Human Tissue (Authorisation) (Scotland) Act 2019 comes into effect on 26 March 2021.

Robin Swann, the minister for health in Northern Ireland, has launched

Our 59th year wasn’t quite what we planned.

The consistent growth we’ve seen in recent years was severely disrupted by the pandemic. Despite that, we’ve continued to fund some amazing science, launched the Andy Cole Fund and established a network focused on research into organ donation and transplantation.

Sandra Currie, Chief executive

To take part in the Northern Ireland consultation, visit: www.health-ni.gov.uk/ consultations/organ-donation

Look out for the yellow kidney enclosed with your magazine! You can use this kidney to take part in the awareness campaign we’re running with the Kidney Charities Together group for World Kidney Day. Log onto www.worldkidneyday.co.uk for more information.

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 Registered charity no. 252892. Scottish charity no. SC039245.

“The UK has come a long way in the last five years, and the new systems of opt-out will open up more transplant opportunities for more people,” commented Dr Aisling McMahon, research and policy director for Kidney Research UK. “Every week five people in the UK die while waiting for a kidney transplant, so these changes are welcome and we would encourage those in Northern Ireland to have their say.”

The opt-out system still allows people to choose whether or not you want to be an organ and tissue donor. Simply register your decision and tell your family. Your faith, beliefs and culture will always be respected.

We are helping the community through the current crisis. Firstly, we are supporting an urgent clinical trial into a new drug which may protect kidney patients from Covid-19 (see page 4).

And we funded the development of Kidney Beam to better understand how to sustain people’s physical and mental health through lockdown and beyond. The pandemic looks set to dominate much of our time in 2021, and we’ll reflect that in our research strategy for the future.

You have helped us keep research going in 2020, and I know you’ll be with us as we mark our 60th year. We are even more determined to end kidney disease.

a consultation to invite the public to comment on how to introduce an opt-out organ donation system for Northern Ireland. This would require new legislation to change the current system, from opt-in to opt-out.

Cover photo Vulnerable dialysis patient, Farhan Narwaz contracted Covid-19 last year. He has welcomed news of our trial into whether a tapeworm drug can protect kidney patients from Covid-19.

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

News

Virtual world provides real life solutions for awareness work Our community outreach work on organ donation in Scotland has gone digital so we can continue spreading important information to different communities during the pandemic.

The charity has been running a Scottish South Asian (Sikh, Hindu and Muslim) organ donation awareness project in conjunction with the Scottish Government for the past seven years.

Bushra Riaz, peer educator coordinator at Kidney Research UK explains: “The peer educator programme works with community volunteers from the South Asian community. Many of Bushra Riaz, peer educator coordinator in Scotland the peer educators are from different faiths. They work together to educate, discuss and answer questions on kidney health, disease, organ donation

Securing the future for Kidney Beam

(deceased and living) and most recently educating audiences on the new organ and tissue donation legislation which will come into effect in March 2021 in Scotland.

“Our peer educators usually visit and take part in events at mosques, temples and gurdwaras to share information and engage with communities about the additional kidney disease risks faced by people from these communities and about organ donation. Due to Covid-19 we have adopted virtual, online webinar services via Zoom to continue raising awareness within Scotland.”

Working closely with Scottish faith leaders, community members and external stakeholders, the team is running specially tailored Muslim, Sikh, Hindu and multifaith webinars in different languages, which have been very well received. Each webinar is recorded and you can watch them on our website – visit www.kidneyresearchuk.org/ south-asian-webinars

“We’re really pleased the charity has been able to continue to support patients at a time when access to traditional services has become so difficult,” said Sandra Currie, chief executive of Kidney Research UK. “The research we are also funding will show whether Kidney Beam will overcome the barriers to physical activity and emotional support services in an efficient and financially sustainable way. If positive, the outcomes will be submitted to the NHS with the intention that Kidney Beam will get commissioned, offering security for the service beyond 2021.”

Diary dates We hope the following events will be able to take place this year, please keep an eye on our website for details and other ways you can support us #850mChallenge Choose your date #MyBridgesChallenges Various dates Ben Nevis Trek Various dates Tough Mudder Various dates World Kidney Day Thursday 11 March Virtual Kilt Walk Friday 23 to Sunday 25 April Jurassic Coast Challenge Saturday 15 May Edinburgh Marathon Festival Saturday 30 May Vitality London Virtual 10K Monday 31 May

King’s College Hospital renal rehab team are leading the service

The Lake District Challenge Saturday 12 June Skydives – various locations Saturday 3 July South West Coast to Coast Saturday 24 July

We helped launch Kidney Beam in July 2020, an online service helping kidney patients take care of their physical and mental health. We have now extended our funding, so the platform is free for the kidney community to enjoy for another year and so research can take place to help secure its future.

The first research project on Kidney Beam will assess how well it improves quality of life and if it is cost effective.

3

Go Swim – Lock Lomond Saturday 28 August Glasgow Kilt Walk Sunday 29 August Kidney Research UK Charity Golf Day – The Belfry, Sutton Coldfield Wednesday 1 September The unique service was originally developed to help kidney patients who were shielding during the first lockdown and is likely to also help those who struggle to access in-person classes in future.

Tour O The Borders Sunday 5 September

Over 1,000 people have signed up to the service which offers a range of live or recorded fitness and wellbeing classes led

by NHS kidney health professionals, and other qualified instructors including people living with kidney disease.

Virgin London Marathon Sunday 3 October

Why not give Kidney Beam a try? Find out more about the range of classes and support here: beamfeelgood.com/ kidney-disease

Great North Run – Newcastle Sunday 12 September

Kidney Research UK Gala Dinner – The Brewery, London Saturday 9 October Andy Cole Fund Gala Dinner – The Dorchester Hotel, London 2022

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

1100

Our coronavirus trial brings hope in dark times.

We are supporting a new clinical trial to protect high-risk kidney patients from Covid-19.

There are a number of existing trials searching for an effective Covid-19 preventative treatment, but patients with impaired kidney function are largely excluded.

Dr Rona Smith, senior research associate at the University of Cambridge

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

Covid-19 trial

K

idney Research UK is helping to fund a clinical trial to investigate if a drug usually used to treat tapeworm can prevent Covid-19 infection in vulnerable, high risk kidney patients and reduce the number of people who become seriously ill or die from it.

“The vaccine roll out can’t come fast enough,” he explains “Kidney patients should have the vaccine as soon as they are offered it. We hope our trial will add an extra layer of protection for kidney patients both now and in the future. It could even reveal a way to prevent Covid-19 in other vulnerable people.”

The trial is investigating a new nasal spray version of the tapeworm drug niclosamide. If successful, it may pave the way for a new treatment to prevent or alleviate the impact of Covid-19 in people on dialysis, people who have had a kidney transplant, and people with auto-immune diseases affecting the kidneys such as vasculitis.

Dr Rona Smith, senior research associate at the University of Cambridge and honorary consultant nephrologist at Addenbrooke’s Hospital, is leading the UK study.

The news comes as the coronavirus vaccine is being rolled out across the country. Participants can receive the vaccine and still take part in this trial, which will identify whether niclosamide can protect people from the virus either on its own, or in combination with any of the vaccines currently available.

“There are a number of existing trials searching for an effective Covid-19 preventative treatment, but patients with impaired kidney function are largely excluded,” she says. “The vaccine developments are exciting and patients should have the vaccine wherever possible.

Usually used to treat worms in the gut and taken as a tablet, niclosamide has shown real promise in the lab. Early tests revealed niclosamide could stop the virus multiplying and entering cells of the upper airways.

“We must do everything we can to protect kidney patients, who are at serious risk from Covid-19,” says Professor Jeremy Hughes, kidney doctor and chair of trustees at Kidney Research UK. “Sadly, one in five kidney patients receiving dialysis in hospital or who have a kidney transplant who tested positive for the virus, died within four weeks.”

Slow Covid-19 recovery Farhan Narwaz had been on dialysis for a year when he contracted Covid-19. The 34 year old pharmacist from Sutton Coldfield was in hospital for 23 days.

As Covid-19 crept across the globe Farhan and his family got organised with provisions and supplies of sanitiser. Then he started shivering while he had his dialysis. First he was given antibiotics to treat a suspected infection in his chest line, but three days later his Covid-19 test was positive.

Led by scientists from the Cambridge University Hospitals NHS Trust and the University of Cambridge, the trial is starting in Cambridge and it is hoped it will expand to other UK healthcare centres. Kidney patients will receive either a placebo (or dummy) drug, or niclosamide as a nasal spray, in addition to all their usual treatments.

In the trial, people will take one puff of the nasal spray up each nostril twice a day.

5

“I wasn’t in a good state,” he said. “The most extreme thing was the tiredness, I found it really difficult to walk and my appetite had gone. I couldn’t even face my favourite breakfast – toast and an egg – it didn’t taste of anything.” When his oxygen meter reading suggested he needed additional oxygen, he reluctantly called an ambulance.

Lead investigator, Dr Rona Smith at the end of a long week on the Covid ward “However, we believe testing niclosamide remains particularly important for people who are immunosuppressed and have kidney disease, because their immune responses to vaccines can sometimes be less effective,” Rona explains.

“While the vaccine will offer a level of protection, niclosamide may provide further protection against Covid-19 that doesn’t rely on the immune system mounting a response.”

“If this trial is successful niclosamide could benefit kidney patients more widely within months.”

The trial is funded by LifeArc, Kidney Research UK, the Addenbrooke’s Charitable Trust and UNION therapeutics and is supported by the NIHR Cambridge Biomedical Research Centre. UNION therapeutics is supplying the drug.

“My breathing did deteriorate, I couldn’t string a sentence together without coughing. The tiredness I can’t describe. Even peeling the seal from a sandwich wrapper was difficult. It was almost a month before I saw my little one.

Then she came to visit me, standing outside the window. Just seeing her gave me that extra lift.

“When I found out I was well enough to go home it was joyous.”

Recovery was – and still is – slow. Farhan still gets extremely tired and has to think of the least strenuous way of doing things. And the mental impact of being so unwell and isolated from his family at such a scary time has taken its toll.

“I wake up in the middle of the night thinking about it. I know others haven’t been as lucky as me, patients in my dialysis unit have passed away.

“This trial is fantastic news. I wouldn’t want any other kidney patients to go through what I’ve been through, or even lose their lives as others have.”

kidney disease ends here.

6

Kidney disease

New research reveals obesity is a cause of kidney disease.

Scientists at the University of Oxford have used genetics to show obesity can increase the chances of someone developing kidney disease.

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

Kidney disease

7

They searched over 1,000 gene variations that predispose people to a higher body mass index (BMI) or more fat deposited around your middle.

T

his new study, funded jointly

by Kidney Research UK and the Medical Research Council through the David Kerr Fellowship, has found that fat all over the body increases risk, not just fat around the middle (tummy fat). It suggests controlling weight could be a new way to manage kidney disease risk.

This research was published in the Journal of the American Society of Nephrology.

Previous studies had found that obesity is linked with an increased risk of kidney disease. But it wasn’t clear whether obesity directly caused kidney disease or whether other factors were involved, such as more salt in people’s diet.

The power of genetics In this latest research, the team studied almost 300,000 DNA samples from a large collection of blood and urine and detailed health information called the UK Biobank.

They searched over 1,000 gene variations that predispose people to a higher body mass index (BMI) or more fat deposited around your middle – tummy fat. People with these gene variations are more likely to become overweight or obese.

Professor Will Herrington, from the University of Oxford, who coled the research explains: “In this study, we found these genetic variants were Professor Will Herrington consistently linked to kidney disease. Each 5 kg/m2 increase in BMI – that’s equivalent to moving from being an ideal weight to being overweight, or from overweight to being obese – caused roughly a 50% increased risk in chronic kidney disease. Our genetic approach meant we could be more rigorous and rule out other factors.”

It doesn’t matter where the fat resides The team found kidney disease risk increased by the same amount regardless of whether fat was deposited centrally (around the organs) or across the body generally (such as around the legs and arms).

This is different to some diseases linked to obesity, such as heart disease, where fat deposited around the abdominal organs (tummy fat) puts people at higher risk than people with fat that accumulates around the buttocks, because fat sits around their organs.

These results show that, regardless of where it is deposited in the body, fat increases the risk of kidney disease.

Finding the driving causes To understand why this happens, the researchers tested whether the gene variants that predispose certain people to obesity were also associated with diabetes or high blood pressure – which both lead to kidney disease.

The team found that for most cases of obesity-associated kidney disease, diabetes and blood pressure were the driving causes. When fat was deposited around the central organs, kidney disease was caused almost exclusively by diabetes. On the other hand, when fat was deposited generally across the body, both diabetes and high blood pressure contributed to kidney disease.

Professor Herrington explains: “This is good news, because we already know a lot about diabetes and high blood pressure, and we have treatments for them. If we can prevent diabetes and control blood pressure in those who are overweight or obese, we may be able to prevent many cases of kidney disease from developing in the first place.”

He continues: “A new class of drugs called gliflozins help the body get rid of excess sugar and salt. This helps people with diabetes control their weight and blood pressure, and recent trials are revealing they are particularly effective at treating diabetic kidney disease, and other kidney diseases.

We’re running a large clinical trial to find out if this is true in a wider range of people with kidney problems.”

A sensitive subject “The team analysed the data without prejudice and with absolutely no intention to shame anyone,” he says. “The topic of lifestyle and its impact on our health is a challenging one to present, but our aim is to provide reliable information so people can make their own, informed choices.

“It is also important to remember that excess weight only accounts for around a third of kidney failure in the UK. This means there are plenty of other causes of kidney failure which those who have more ideal weight still suffer. We are trying to find ways to prevent these as well.”

Our research and policy director, Dr Aisling McMahon said: “By identifying obesity as a new risk factor for kidney disease, this important research has revealed new reasons for patients and healthcare teams to renew focus on weight management and encourage people to look at ways they can improve their own health.”

“We’re watching the gliflozin trials with interest – if clinical trials reveal these drugs can benefit an even wider group of patients, we would like to see these research findings brought into clinical practice quickly so they can benefit patients across the country.”

kidney disease ends here.

8

Fundraising

Get involved in our 60th year.

Kidney Research UK turns 60 this year! Our research has made some major advances in that time, some of which you’ll read about here in Update.

But there is still so much more to do. We are working harder than ever to drive progress and we can’t do it without you.

Join us in 2021, as and when Covid permits, to celebrate our success, raise money and share your time and voice so we can transform the future for all kidney patients. To sign up for any of the opportunities shown, visit www.kidneyresearchuk.org

Celebrate your transplant with us Transplants can change lives and the anniversary of an operation (or ‘kidneyversary’) can be a joyful time. Perhaps you mark the date you received your new kidney each year, perhaps you gave a kidney. We would love you to celebrate your kidneyversary with us.

Whether you are a donor or a recipient, we can help you plan a celebration to remember – digital or in person. Raising money and sharing your story will help us bring hope to kidney patients.

Sports coach Fred Midgley, 28 (pictured below), celebrates his 13th kidneyversary this year and is hoping he can host his annual one night festival event with around 150 guests. His events have raised almost £10,000 for Kidney Research UK.

“My kidney was nicknamed Ken and every year me and my mates host a Ken party!” said Fred.

“Last year the Ken12 event was cancelled because of lockdown.

I’m hoping Ken13 can go ahead in November. There’s around 150 people, various DJs, it’s a huge party. It’s not just a great night, it’s really important to me to raise awareness and money for a cause that is close to my heart.”

Play our lottery Playing our weekly lottery is an excellent way to support the charity and have some fun at the same time. For just £1 a week you could be in with a chance of winning a jackpot of £10,000.

Players receive a unique six-digit lottery number and are entered into a draw every Friday. Match the numbers in the correct place and you could win anything from £5 to £10,000.

Graham Murray is on dialysis and hoping to receive his mum’s kidney next year. “I feel very fortunate that I can still work full time, despite my health situation,” Graham says.

“I know that I’m in a much better position than a lot of people so I really want to help others. Playing the charity lottery is a really easy way to do this.”

Rikki Guy had a transplant in September 2020, and suffers from atypical haemolytic uraemic syndrome (aHUS), an immune condition that attacks the kidneys.

Without Kidney Research UK’s work which led to a treatment for aHUS, Rikki wouldn’t have been able to have his transplant. “I feel so lucky,” Rikki says. “I play the lottery because my family and I just want to give something back.”

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

Fundraising

9

Volunteer with us We treasure our volunteers enormously. We are looking for people to join us as research network volunteers and community ambassadors. Both roles offer the chance for people to bring their time, experience and perspective to our work.

The research network volunteer role is a chance for people with experience of kidney disease, whether as a patient, a carer or family member, to help review research applications from their own homes. You could help us decide what we should be funding. You don’t need a scientific background, or any experience in research.

Alternatively, if you are someone who likes to interact with others, why not consider joining our team of community ambassadors? Make the most of your local opportunities, be the face of Kidney Research UK and help us spread the word in your community, encouraging others to support us.

ITV arts editor Nina Nannar came to one of our events in early 2020 with footballers Andy Cole and Shae Hutchinson.

Live it up at our Gala Dinner If you really want to push the boat out, joining us for our Gala Dinner is a fantastic way to celebrate our 60th year and continue supporting the charity. Taking place at The Brewery, a fabulous historic venue in East London on Saturday 9 October, you can enjoy fine wines, a sumptuous three course meal from award-winning chefs and live entertainment.

The evening provides a great opportunity to shake off the blues of recent months, all for a great cause. Perhaps you are celebrating a big birthday or anniversary, or just want to soak up a party atmosphere whilst supporting your favourite charity.

After the difficult times we have all been through, taking a table with friends and family that you perhaps haven’t seen for months on end could be just the ticket.

Bid for handpicked, money-can’t-buy items in our auctions and dance the night away with live musical entertainment!

It was an amazing evening and I got such a lot out of it. Being in that room and hearing all those stories was so powerful. We’d love to attend other events with Kidney Research UK.

I joined the charity because of my own experience having a kidney transplant. My aim is to help people over anything else, allow people to get the information they need for support and promote research in chronic illnesses to progress to a brighter future.

Elodie Lee (pictured below) recently took up both new volunteer roles.

ITV arts editor Nina Nannar

kidney disease ends here.

The midwife striving to protect pregnant mums.

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

Kidney disease and pregnancy

11

A London midwife is determined to prevent pregnant mums and their babies being harmed by acute kidney injury (AKI) through her pioneering research project.

K

atherine Clark wants to develop a routine test for this highly dangerous condition where the mother’s kidneys suddenly stop working, putting both mum and baby at risk.

Katherine’s research will establish the normal creatinine ranges in pregnancy and see if the levels are different for women from different ethnic backgrounds. She hopes to then establish which women are most at risk.

Thanks to funding by Kidney Research UK, Katherine hopes her work will lead to a routine simple finger prick or urine test so women know if they are at risk of developing the condition.

As part of Katherine’s work, she aims to work out if midwives can use a quick fingerprick test or urine test to predict those at risk and diagnose AKI more quickly.

A qualified midwife for 10 years, Katherine, of King’s College Hospital, London, said: “Sadly, I have now looked after two women whose babies have died Katherine Clark and the mum was in intensive care with an acute kidney injury. I could see how we could make things better, so I had to try. I hope my research work makes a huge difference for women. I want us to be able to step in sooner, even before women develop AKI, to prevent, then treat the condition and prevent it worsening.”

Irreversible damage High blood pressure and pregnancy can lead to AKI – left undetected, AKI can cause irreversible damage. Doctors and midwives diagnose it using a blood test to detect raised levels of toxic chemicals in the blood called creatinine. But creatinine levels usually fall during pregnancy, can vary according to ethnicity, and nobody knows what the normal range is in pregnancy.

We don’t check creatinine routinely. This all means it is harder to judge when there could be a problem. Rather than waiting for the creatinine to go sky high I hope we can see subtle changes and provide interventions.

More than 1,600 women will be asked to take part in Katherine’s research at three London hospitals (King’s, Barts and The Royal London and Guys and St Thomas’) as well as hospitals in Nottingham and Bristol.

Although the Covid-19 pandemic delayed recruitment of women to the research project, this should be underway early in 2021.

A four-year study The four-year study is split into four components and is in its first year.

Study A will work out the normal range of creatinine levels in pregnancy.

Study B will use big international data sets to determine how to detect AKI in pregnant women. Medics know creatinine in pregnancy can safely rise by as much as 1.5 times, yet out of pregnancy that rise can trigger concerns.

“We need a different way of knowing who is sick and who isn’t sick,” Katherine said, who is using data sets from Sweden, the UK and Canada. She will trawl the data of around one million women to find her answers.

Study C will use a finger prick and a urine test to determine which is best to help predict acute kidney injury.

Study D is a project aimed at finding interventions and treatment options.

“My hypothesis is that the test can be done once a woman is admitted to hospital in labour or because of an issue and she is admitted early,” explains Katherine.

“We would screen the woman on a traffic light system. Green is OK, at amber we would do simple things like reduce any drugs that could put extra pressure on the kidneys and be careful about the amount of fluids, then constantly monitor. Red is where the woman is likely to have an AKI already and so needs specialist input.

Without the test this could be missed, and the woman could be much sicker before we notice.”

Passionate about Kidney Research UK Away from her day job and her research work, Katherine is passionate about supporting research, recently running the virtual London Marathon 2020 raising more than £2,800 for Kidney Research UK. She aims to do the real thing around the streets of the capital in 2022.

“Katherine’s commitment is commendable,” said Dr Aisling McMahon, research and policy director at Kidney Research UK. “Her project has the potential to save lives and is a great example of how healthcare professionals who are not already kidney doctors or nurses can impact kidney health through research. We’re looking forward to seeing how it unfolds.”

kidney disease ends here.

Leaving a gift in your Will is a powerful way to show you care.

Every legacy makes a difference to our life-saving research.

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

Leaving a gift

A

gift in your Will can help fund research into better treatments for future kidney patients. People don’t have to be rich to show they care either, as every penny makes a difference, from small donations of £50, to entire estates worth hundreds of thousands.

“Leaving a Will is incredibly powerful as it allows you to take care of your loved ones; make sure your wishes are carried out; and is a chance to remember causes you care deeply about,” said legacies officer Elaine Saggers, who recently retired after 11 years with Elaine Saggers Kidney Research UK.

Gifts in Wills to us mean people’s compassion lives on, helping our world-class researchers discover new preventions and treatments for kidney disease.

Legacy donations make up around a third of the funding for Kidney Research UK. From small donations to entire estates, the average value of each gift is around £20,000 and can make a huge impact for research.

13

her entire estate valued at £590,000. The donation came as a complete surprise.

Research UK and in her will, asked a friend to take care of her beloved pet dog, Josh.

“It is both humbling and sometimes a strange feeling, knowing people have left all their worldly belongings to us, yet we don’t know why,” says Elaine. “It’s remarkable to think they want to support our vital research for future patients.”

“Josh had a terrible skin condition that needed regular vet visits,” Elaine says. “But the lady had clearly forgotten about the dog’s vet bills, so I discussed his condition with the other 11 charities and made sure all of Josh’s care was paid for,” Elaine said.

Family history influences gifts

“It was important Josh’s needs were taken care of as that’s exactly what the owner would have wanted.”

Most legacies, however, are given because of personal experience. One example is a woman whose daughter died of kidney disease. Experiencing the devastation of losing a child meant she left her entire estate of £450,000 to help fund research into finding a cure so that other families did not have to go through what she suffered.

Essential funds for our work

Some of the legacy donations to Kidney Research UK require careful communication between many partners.

Like the man who wrote in his Will that he wished to share his estate between nine charities. In his final days, however, he asked that the hospice who was caring for him, could be added to the list of beneficiaries.

“We said yes straight away,” Elaine says.

“Nobody should deny a person their final wishes.”

Elaine fondly remembers the elderly lady who left part of a very large estate to Kidney

Legacy donations are a key part of funding for smaller charities like Kidney Research UK, Elaine says.

“Knowing that kidney disease can happen to any of us, at any stage of our lives, with no known cure, makes such donations vital to carry on essential research work,” she says.

“Existing treatments can be tremendously hard on people.

“Too many lives are turned upside down and too many people are dying, at too young an age, because of it. A gift in your Will can do something incredible: it can drive vital research until a cure for kidney disease is found. It can improve the treatments people are given. Leaving a legacy is a wonderful gift.”

Mystery donors Elaine has overseen these gifts since 2011 and is passionate about the role and the people, but at the tender age of 68, says it is time to hand over the reins to a new capable pair of hands.

With her goes a wealth of amazing stories of the people who’ve supported us over the years and how Kidney Research UK ensures people’s final wishes are taken care of. Sometimes, the donations remain a mystery.

They include a man who left £757,000 but didn’t tell anybody why.

“We have no record of him, no correspondence at all, so we have no idea why he chose to support us,” she remembers. “Such an incredible gift.”

Another memorable donor was a woman known only to the charity as a regular Kidney Research UK raffle player. The woman left

It is both humbling and sometimes a strange feeling, knowing people have left all their worldly belongings to us, yet we don’t know why. It’s remarkable to think they want to support our vital research for future patients.

Elaine Saggers

Write your Will for FREE. We’ve teamed up with specialist Will writers Farewill to offer you a free Will writing service. You don’t have to leave us a gift to use the service, but please consider us if you can. Simply visit farewill.com/update21 to setup your free Will.

Offer ends 31 July 2021.

kidney disease ends here.

14

Research round up

Our research progress in action.

Before the pandemic took hold, we funded some exciting research grants. This work continues, as our scientists work hard to stop kidney disease destroying lives.

Developing a new scan to spot and monitor dialysis side effects

Could our body clocks reveal the best time to give kidney treatments?

For patients with end stage kidney disease, haemodialysis is their lifeline.

But it also brings problems, and sudden issues with the heart are among the most feared. Over time, the heart muscle can become scarred and the extent of the scarring predicts whether someone is likely to have problems with their heart rhythm, which can sometimes even be fatal.

Chronic kidney disease, or CKD, is when your kidneys become damaged, and it can lead to kidney failure. One of the most common causes is glomerular disease, which affects the tiny filters in the kidney called the glomeruli. These usually keep important proteins in the blood, but in glomerular disease, they become leaky and protein escapes into the urine.

With our funding, Professor James Burton, Dr Matthew Graham-Brown and the team at the University of Leicester have been looking at how best to measure scarring caused by dialysis. They can’t perform the usual MRI scan used in checking heart disease, because it uses a contrast dye which is harmful to people with kidney failure, but they have discovered a new MRI technique called native T1 mapping that may work instead.

Urine protein levels and kidney filtration rate vary throughout the day, and this pattern coincides with our daily rhythm, or our body clock.

This 24-hour internal clock runs in the background of your body. The most well-known body clock is the sleep-wake cycle, but there are other biological clocks in the body too.

In this project, they will find out if this technique can accurately measure heart scarring in those on dialysis. They’ll do this by comparing scans from people on dialysis, with scans of donated hearts from dialysis patients who have passed away, which have also had biopsies taken and been tested in the lab.

Dr Rebecca Preston from the University of Manchester thinks there is a link between glomerular disease and disruption of your kidney’s body clock, which makes the kidneys more leaky. Her research project will investigate the daily rhythm of the kidney filters in mice, and they will hunt for genes in the kidney which might be controlled by our body clock.

A new scanning method that accurately detects scarring could offer hope to those on dialysis.

It may reveal a new way to monitor this unpleasant side effect of treatment and help us find ways to prevent sudden, and potentially fatal problems with the heart.

The Manchester team hope that by understanding more about how the body clock controls the kidney filters, they can guide development of new treatments, including what time of day is best for people with kidney disease to receive them.

James’ work is funded by a research project grant for £47,744 and is due to complete in February 2023.

Rebecca’s work is funded by a clinical training fellowship for £231,802 which ends in October 2023.

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

Research round up

Understanding how dialysis affects blood vessels and causes heart disease

Can kidney cells switch roles and does this process go wrong in kidney disease?

Having chronic kidney disease places strain on your heart, increasing your risk of having a heart attack by three to four times. If you are a young adult on dialysis, you are more than 100 times more likely to die of a heart attack or a stroke than your peers who are healthy. These are shocking statistics which London-based trainee doctor Isaac Chung wants to change.

Each part of your kidney has specialised cells that do specific jobs. The collecting duct, which carries waste from the kidney’s filters out to the bladder, has two types of cells. Principal cells ensure our sodium levels are balanced, and intercalated cells keep our acidity levels balanced.

Treating the usual suspects that increase the risk of heart attacks and strokes - including diabetes, blood pressure and an unhealthy lifestyle has only partially helped to lower these statistics. Plus, we don’t yet fully understand how blood vessel changes cause heart attacks and strokes, and how quickly these changes happen in people with kidney disease.

Isaac, a trainee doctor at St George’s, University of London, has studied how blood vessels change in the short term, over three to six months of dialysis, but no one has studied longer-term changes and how to resolve them.

In this research project, Isaac will look at blood vessel changes by doing an ultrasound test of the blood vessels in the arm, legs and the neck of people with kidney disease. He hopes his project will tell us more about blood vessel changes and how they progress, and the risk factors underpinning them. This work may reveal new ways to prevent heart attacks and strokes in the future.

Isaac’s work is funded by an intercalated degree for £5,000, which ends in September 2021.

15

Scientists have recently discovered additional cells that are ‘in transition’ because they have both these properties. They believe principal cells and intercalated cells can switch roles with each other – a process we call ‘cell plasticity’.

With our funding, Professor John Mullins and his team at the University of Edinburgh will confirm whether there is a relationship between the two cells (see image courtesy of Dr Adrienne Assmus) and if they are able to change their functions.

They will study these cells in detail and work out if their properties change in healthy and diseased kidneys, how they do this, and if this process is different in unhealthy kidneys.

If this project reveals cells can change and that the process is different in kidney disease, it may uncover new ways to treat kidney disease by intervening in the transition process.

John’s work is funded by a research project grant for £179,230 which ends in July 2021.

kidney disease ends here.