Update - Autumn 2022 by Kidney Research UK

Update. Autumn 2022

Issue 29

The magazine from Kidney Research UK

Family ties inspire transplant research Page 4 School pupils dip their toes in kidney research Page 6

Cambridge researchers change donor kidney blood type Page 8

News

Raising awareness of early diagnosis in Parliament

I’m writing this during Organ Donation Week, an important time to acknowledge the brave decisions made by organ donors and their families. With around 5,000 people on the waiting list for a kidney transplant, as part of our transforming treatments campaign we are focused on making transplants possible for more people. We feature two projects with exciting potential for patients in this issue, both using a technique called normothermic perfusion, which might be familiar to readers. Professor Mike Nicholson is the UK’s pioneer in kidney perfusion; your funding has supported his research for many years. With his colleague Serena MacMillan, he is on the cusp of showing it’s possible to change the blood type of kidneys before transplant. Find out on pages 8-9 why this is bringing hope to those without a good match.

Meanwhile we are seeking opportunities to innovate in dialysis through our latest Med Tech competition. Drawing on the expertise of professionals from broader specialisms such as technology and engineering could improve the quality of life for people reliant on dialysis to stay alive. We can’t do this vital work without those who fund and support us in so many ways. Thank you all. Often unseen, our trustees volunteer to provide the necessary governance of the charity and have overseen great progress, despite the recent challenging times. Trustees Professor Sir John Cunningham and Lisa Chan feature on page 14. If you would like to find out more about the progress we’ve made for patients, you can read our annual report online: www.kidneyresearchuk.org/about-us/annual-reports Enjoy this issue of Update.

Sandra Currie, Chief executive

Baroness Floella Benjamin talking to our head of policy, Alison Railton.

This summer we teamed up with Kidney Care UK and the National Kidney Federation to raise awareness of kidney disease and the importance of early diagnosis in Parliament. The event was organised by Healthy-io, who manufacture a home urine testing device for kidney function. Thanks to our supporters

who emailed their MP about the event, over 70 MPs and peers attended. They learned how an early diagnosis enables access to advice and treatments as soon as possible, with the aim of preventing further decline in kidney function. Home urine testing could form a key part of early detection.

will participate in this study to share their experience and offer their perspective,” explained Michael Nation, director of development at Kidney Research UK. “We are excited to see how this research unfolds as fibrosis impacts the lives of so many, including kidney patients.”

The Medical Research Council has awarded a research grant to a consortium of UK academics and industry partners to explore and understand how genetic and environmental risk factors interact to promote the development of fibrosis in multiple organs. This will inform approaches for prevention and how doctors across disciplines can work together to reduce the burden of treatment. “Lay advisory volunteers at the charity who experience multi-morbid fibrotic disease

We will bring our experience of patient involvement to strengthen this important work even further.

Kidney Beam extends to young people

Research Showcase

Kidney Beam, the platform helping kidney patients’ wellbeing through live and on demand exercise classes and programmes, is extending its remit to children in a research project funded by Kidney Research UK.

Supporters and researchers joined us at the Royal College of Physicians in September to help celebrate our recent research milestones, share our vision for the future and discover how we are transforming treatments for those living with kidney disease. Our thanks to all who attended.

Since Kidney Beam was set up by Dr Sharlene Greenwood from King’s College Hospital in partnership with online platform providers Beam, we have seen the enormous impact it has had on adult kidney patients. But why should adults have all the fun (and health benefits)?

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.

Kidney Research UK is helping to shape the implementation of patient involvement in a project that aims to address the challenges of people developing more than one disease (multi-morbidity), a key priority for the organisation. Fibrosis (scarring of organs) can happen in many diseases including kidney disease and can occur in different organs at the same time. Fibrosis can be caused by environmental factors such as smoking and obesity, or genetic factors. It significantly affects health and can cause death but also greatly affects the quality of life of the individual, requiring multiple, different treatments for each affected organ.

Welcome.

Dr John Stone’s project features on pages 4-5. He is using perfusion to buy more time prior to operations, so that surgeons have more flexibility over when to operate and time to find the best possible donor organ, so even more kidneys reach those who desperately need them.

Preventing fibrosis in multiple organs

Cover photo Researcher Dr John Stone describes how his nephew's journey with kidney disease has inspired his research into making more transplants possible on pages 4-5

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

Dr Pelagia Koufaki from Queen Margaret University has now received a Kidney Research UK paediatric research project grant to create a bespoke version of the portal where the unique combination of tailored exercise classes

that is used in Kidney Beam will be made available to children and young people.

Dialysis focus for next Med Tech competition Following our first MedTech competition, we are excited to launch a brand-new competition which will focus solely on innovations in the field of dialysis. Six awards worth £30,000 each are available to UK-based teams working to transform dialysis treatments. This year’s competition will encourage scientists, academics, engineers and even app developers to propose dialysis-related innovations. Dr Kirsty Frearson, dialysis programme manager at Kidney Research UK, explained: “Dialysis is a harsh and gruelling treatment that has a significant impact on the lives of the patient and everyone around them. With the support of those at the forefront of technological development, we can bring about meaningful change that will make the differences patients need.”   A total of six successful applicants will receive funds to progress their innovations and will be enrolled into a bespoke academy programme to help develop their business skills so solutions reach patients quicker. With a closing deadline of Monday 7 November, we are excited to bring more news on this latest competition soon. Visit www.kidneyresearchuk.org for more details.

Whilst we continue to support the platform, in partnership with other charities, we are excited to see how this initiative progresses to help children and young people with CKD. If you have a young family member living with kidney disease and want to register to use the platform, please talk to their consultant.

Dr Pelagia Koufaki

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John Stone project

Transplant research inspired by family journey.

John’s motivation. John’s nephew Luke was just a few weeks old when he was diagnosed with polycystic kidney disease. Medics warned his kidney function would eventually drop to the point he needed a transplant. Ten years on, the moment they had been dreading finally arrived. Last summer, the family were told he needed a transplant, and Luke prepared to go on dialysis while dad Carl underwent a barrage of tests to become his donor. Mum Tori leant on her brother John for support, bombarding him with questions.

Spurred on by his 11 year old nephew’s experience of kidney disease, Dr John Stone is trying to buy surgeons valuable time so fewer kidneys go to waste.

ith funding from Kidney Research UK, the team at Pebble Biotechnology Laboratories based at Alderley Park in Macclesfield, are hoping to extend the window during which a deceased donor kidney can be kept viable before transplant.

there could be a transplant planned, but the theatre is needed for an urgent trauma case. This results in the transplant being cancelled, and the kidney is put back into the pool, but sometimes, due to logistics and time outside of the body, ends up being discarded. We want to tackle this to ensure every donated kidney is transplanted.”

Currently, it is standard practice to store kidneys on ice before transplant, but this causes damage that might stop the kidney from working properly after transplant. With the help of our funding, researchers have developed a pioneering technique called normothermic perfusion, which pumps oxygenated blood through donor kidneys at body temperature before it is transplanted. This appears to give donor kidneys a better chance of surviving to the point of transplant than being kept on ice, but John and the Pebble team want to push this even further.

Leaving no kidney behind The team worked with surgeons from transplant centres in Glasgow and Birmingham to identify the main problems that need tackling. It became clear that one of the major obstacles was the effective organisation of transplant procedures within very tight timeframes. John’s work is funded by an intermediate fellowship from Kidney Research UK. He explains: “Our transplant centres can do a lot of organ retrievals, but sometimes a donor kidney cannot be used because surgeons run out of time. For example, some transplant centres share theatres with trauma units, so

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

Transforming kidney storage The team, led by Professor James Fildes, has the ambitious goal of extending the preservation of a donor kidney from hours to days. They believe this is the only way to ensure all donor kidneys can be transplanted. If they achieve this, then the technology could be used to deliver nextgeneration therapies to the kidney before transplant, potentially reconditioning organs that currently would not be considered usable.

We want to ensure every donated kidney is transplanted. Dr John Stone

After one false start, the operation went ahead successfully in May. Tori said: “The whole day was just a whirlwind of emotion. Now Luke’s growing, he’s got his colour back, he’s putting on weight. It’s amazing how well the kidney is working.”

Starting dialysis meant Luke missing three afternoons a week from school. Tori says: “Luke took it all in his stride – he adapted well to being on dialysis, although he had to give up playing football, which he loved.”

Luke’s situation proved to be careerdefining, John says: “I started my career studying perfusion in the lungs, and then Luke was diagnosed just as my supervisor James was thinking of branching into kidney research. Luke’s diagnosis was definitely the trigger to start working on the kidneys, and since then it has been my driving factor. “It wasn’t until Luke started going for dialysis, and I was going in with him, that you see it from a different perspective. And that brings it home to you when you're working in a lab all the time, that there is a real need for it.” It’ll be a little while longer before John and the team know for sure if their research has been shown to work, but it'll be worth the wait, Tori says: “I’m so proud that John’s research could help future transplant recipients and people like Luke. Although it’s not something we really want to think about now, in the future Luke may well need another transplant and it’s amazing to know John’s research could help benefit him.”

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Bristol Renal team

Inspiring the next generation of kidney researchers. In July the Bristol Renal team opened the doors of their lab to a group of Year 10 pupils from City Academy Bristol, to showcase their work and discuss careers in science. Here, our researcher Dr Carl May shares some of the questions they put to him:

What are you working on? I have recently been funded to look at using virus delivery systems to send small treatments to the podocyte for non-genetic forms of kidney disease. Podocytes are cells that help the kidney filter our blood. The podocytes wrap themselves around the small blood vessels of the kidney, holding hands tightly with their neighbour to stop protein leaking into the urine. During disease the podocytes stop holding hands quite so tightly and protein begins to leak. Rather than sending in functional copies of genes to rescue damaged ones, we can send in DNA with the recipe for small pieces of protein that might be helpful in treating kidney disease. In this case we plan to send in some inhibitors that can protect the podocyte during disease. If this work goes well, I will apply for more funding to develop this work into a new therapy.

What’s it like being a scientist?

What would this mean for patients? Most drugs or treatments find their target via the bloodstream. This means they can act on many different targets causing side effects, which range from being mildly inconvenient to quite severe. At the severe end drugs can quickly become useless if they cause more problems than they solve. We can reduce side-effects by targeting treatments. Viruses can be changed so that they deliver treatment to certain cells. Additionally, the contents of the virus can be tweaked so that it will only work in the target cell.

What do you do all day? This was a brilliant question and helped me immerse the pupils in what life is like as a professional scientist. We generate questions (hypotheses) and then design experiments to answer the questions. Each answer we get usually generates more questions. On a typical day we might get a result in the morning, then read some published papers to help us understand our results and tweak our experiments for the afternoon based on the fresh data.

I hope to develop a new treatment that will be more effective and with fewer side effects than current treatments.

Do you ever get bored?

Researcher: Dr Carl May Position: Research associate, Bristol Renal Age: 35 Family: I live in Bristol with my wife Sadie and my two children, Jasper, age four, and Matilda who will be two in November. Interests: Brewing my own beer…during lockdown I made a fortified stout. At 32% ABV it must be enjoyed in moderation! I also like to sing, currently with the Key Note Voices, a five-piece acapella group based in Bristol.

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

It’s great! We are very privileged to be the first people to discover things and push the boundaries of human knowledge. Obviously, this doesn’t happen every day, but it could happen any day. There is great satisfaction in developing new approaches, workarounds and new techniques.

Why the kidney? The kidneys are fascinating organs in charge of some essential tasks. They clean our blood, balance the pH, control water levels and stop protein leaking into the urine. Hopefully, we will never even know that they are there. Once we fully understand how they work we can protect them during injury or disease, or maybe even improve the function of damaged kidneys. Great strides have been made in the last few years in understanding kidney development. There are so many amazing avenues to kidney research, but at the heart of all of them is the need to help patients.

No! It is impossible to be bored by science, there’s just the wrong science for you. There are teams like ours working on cells, drugs and viruses. Then there are teams who specialise in clinical trials looking at the latest evidence base for medicines. Then there are psychologists and sports scientists who work to improve patients’ quality of life. There really is space for everyone and we need as diverse a community as possible to train as scientists and think of new ideas.

The students were engaged and curious. I find these days highly motivating. They allow me to see my own work through fresh eyes. We demonstrated a wide range of techniques and hopefully enthused the next generation. Aged 15 I knew I wanted a job in science but didn’t know much more than that. I think if my 15-year-old self could see what I do now, he’d be pleased. kidney disease ends here.

Transplant hope

Altering donor kidney blood type offers new transplant hope. Supported by our funding, a team from the University of Cambridge have successfully altered the blood type on three deceased donor kidneys – a ground-breaking discovery that could have major implications for kidney patients, especially those from minority communities.

rofessor Mike Nicholson and PhD student Serena MacMillan used a normothermic perfusion machine – a device which connects with a human kidney to pass oxygenated blood through the organ to better preserve it for future use – to flush blood infused with an enzyme through the deceased kidney. The enzyme acted like “molecular scissors” to remove the blood type markers that line the blood vessels of the kidney resulting in the organ being converted to the most common O type.

We need now look to whether our methods can be successful in a clinical setting and ultimately carried through to transplantation. Prof Mike Nicholson

One of the biggest challenges that transplant surgeons face when trying to match a patient with a donor is whether they will be blood type compatible. Someone with an A blood type cannot be transplanted with an organ that is a B blood type and visa versa. The body produces antibodies which attack any organ that does not correspond to the correct blood type. However, the O blood type is considered “universal” as anyone with A or B blood types can receive organs from O type donors. This is because O blood types do not carry antigens that attack organs of other blood types. The Cambridge team took this principle and applied it to their research. Serena said: “Our confidence was really boosted after we applied the enzyme to a piece of human kidney tissue and saw very quickly that the antigens were removed. After this, we knew that the process is feasible, and we just had to scale up the project to apply the enzyme to full-size human kidneys.

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

“By taking B type human kidneys and pumping the enzyme through the organ using our normothermic prefusion machine, we saw in a matter of just a few hours that we had converted a B type kidney into an O type. It’s very exciting to think about how this could potentially impact so many lives.” Serena MacMillan The project builds further on previous research into normothermic perfusion led by Professor Nicholson which we also funded. “One of the biggest restrictions to who a donated kidney can be transplanted to is the fact that you have to be blood group compatible,” Mike explained. “The reason for this is that you have antigens and markers on your cells that can be either A or B. Your body naturally produces antibodies against the ones you don’t have. Blood group classification is also determined via ethnicity and ethnic minority groups are more likely to have the rarer B type. After successfully shifting blood group to the universal O type, we need now look to whether our methods can be successful in a clinical setting and ultimately carried through Professor Mike Nicholson to transplantation.” The discovery could be particularly impactful for people from ethnic minority communities

It’s very exciting to think about how this could potentially impact so many lives. Serena MacMillan

who are more likely to have B type blood and with current low donation rates from these populations, there are simply not enough kidneys to go around. The Cambridge team now need to see how the newly changed O type kidney will react to a patient’s usual blood type in their normal blood supply. The perfusion machine allows them to do this before testing in people, as they can take the kidneys which have been changed to the O type, use the machine to introduce different blood types and monitor how the kidney might react, simulating the process of transplant into the body. They will then look at how the approach might be used in a clinical setting. Having made great progress so quickly they are hopeful for the future. Dr Aisling McMahon, executive director of research at Kidney Research UK said: “The research that Mike and Serena are undertaking is potentially game-changing. It is incredibly impressive to see the progress that the team has made in such a short space of time, and we are excited to see the next steps.”    The full paper on Mike and Serena’s work has been published in the British Journal of Surgery.

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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 dialysis patients’ immune response to vaccination

Treatments and genetic counselling for ARPKD

Professor Alan Salama’s work is funded by a Kidney Research-Stoneygate research project grant for £233,000.

Dr Joe Cockburn’s work is funded by a joint PhD studentship (non-clinical) grant of £83,000 from Kidney Research UK and the PKD Charity.

The problem Although dialysis has saved countless lives, there are still significant drawbacks. It can be gruelling and it weakens the immune system, leaving patients more prone to illnesses such as Covid-19. During the first waves of the pandemic, dialysis patients had a higher risk of hospitalisation and death from Covid-19 infection. Additionally, despite vaccination, some dialysis patients show little or no response in terms of building up immunity, while others do respond. The reason behind this difference is not fully understood.

The solution Professor Alan Salama from University College London and his team will test if they can identify dialysis patients who are at risk of poor antibody responses. They will then try to manipulate their cells and immune system to improve responses to vaccinations, so they create more antibodies.

What this might mean for kidney patients Alan’s work could enable dialysis patients to benefit from vaccinations just like everyone else. This is not just important during the coronavirus pandemic but could help protect against seasonal flu and other illnesses. Effective vaccinations would allow dialysis patients to participate fully in their communities without fear.

This project sounds amazing. So many dialysis patients are often hospitalised when they get simple illnesses like the common cold or flu, when really, they should be able to stay in the comfort of their own home instead of being admitted to a lonely hospital bed. Ama Basoah

Professor Moin Saleem’s work is funded by a paediatric research project grant from Kidney Research UK for £109,000.

Nephrotic syndrome (NS) is a condition where the kidneys leak large amounts of protein into the urine. It is usually first diagnosed in children under five and can have many different causes or no known cause. Some patients respond to steroid treatment, others don’t. We currently don’t know enough about why NS develops, and we don’t know which patients will respond to different therapies.

The solution Professor Moin Saleem and his team at the University of Bristol have a huge database of information of hundreds of people with NS in the UK. They also have access to similar data from India, Sri Lanka and South Africa. Moin will use computers to sift the data and identify patterns and useful ways to tell patients apart based on what is causing their form of NS.

The problem Autosomal recessive polycystic kidney disease (ARPKD) is a genetic kidney disorder that causes problems for kidney development during pregnancy. Around a third of babies born with ARPKD die within four weeks. Those who survive generally go on to develop kidney failure by the age of 20. Genetic counselling for would-be parents is therefore essential, but so little is known about the genetic faults causing the disease that this is of limited use.

The solution Dr Joe Cockburn from the University of Leeds wants to study the genetics of ARPKD to determine what exactly is causing the problem. ARPKD is almost always caused by faults in a gene called PKHD1 which produces the protein fibrocystin. Joe is going to employ a PhD student to look through 650 faults in PKHD1 and the effect that these have on the protein fibrocystin.

What this might mean for kidney patients This information could be used to develop new treatments for ARPKD and offer informed genetic counselling to tell parents and would-be parents about the possible course of ARPKD given their specific gene fault.

Studies such as this could be massively beneficial. Our daughter has been a miracle throughout her journey, but we only found out about her condition two days prior to her being born. More information would have helped us understand ARPKD better. Amrik Kandola

Developing dietary phosphate literature for children and young people

Analysing international datasets to identify causes of nephrotic syndrome

The problem

Professor Rukshana Shroff’s work is funded by a paediatric research project grant from Kidney Research UK for £129,000.

What this might mean for kidney patients This work could lead to much faster, more accurate diagnoses with better targeted treatments. By looking at data such as blood pressure, weight, level of proteinuria, and identifying the very subtle differences between patients, Moin’s work will take us closer to personalised medicine: treatment plans almost directly tailored to the individual.

This project is exciting as the trial-and-error phase of finding the most effective treatment plan could be reduced significantly, which would mean minimising potential medication side-effects and effectively treating the condition sooner! Aphria Sheridan

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

The problem When the kidneys don’t work well, harmful substances can build up in the blood and helpful substances can accumulate to the point where they are no longer helpful. One such substance is phosphate. High levels can weaken bones and damage the heart. Children and young people who are on dialysis, or those with chronic kidney disease, are placed on restrictive diets and medication to decrease phosphate absorption but find it difficult to follow them.

The solution Professor Rukshana Shroff and her team at Great Ormond Street Hospital want to know why the regimes are difficult to follow by listening to young patients and their carers. They aim to relieve some of the anxieties by providing useful and relevant information. They will assess current educational material and use focus groups to see how well this works. Working with all involved, new literature will then be developed and tested.

What this might mean for kidney patients It is hoped that the newly created bespoke literature will be accessible and easy to read, addressing the struggles, helping the children and young adults to stick to recommended regimes. This would help improve phosphate levels and could also improve other concerns such as salt and fluid control.

I get a bit obsessed with whether what I am eating is okay. There is a lot of information to remember about what I can and can’t eat, so having easy to read literature would allow me to be more independent and responsible for my kidney disease. Charlie Frieland

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African and Afro Caribbean community

Thank you

Collaborating with high-risk communities to identify kidney disease early. Among the African and Afro Caribbean community (AACC), kidney disease is known to be more common but also more often undiagnosed. With funding from Kidney Research UK, Roseline Agyekum, Dr Kate Bramham and team at King’s College Hospital, are developing a peer educator led approach to improve early detection of kidney disease in the AACC. This is being done in collaboration with Africa Advocacy Foundation (AAF), a black owned media company Eagle London, and members of the AACC.

ithin groups like the AACC, chronic kidney disease (CKD) awareness, and engagement with healthcare is low, despite them being at high risk. Access to healthcare could also impact early diagnosis and intervention. Roseline and Kate want to understand this and develop ways to better serve this high-risk group.

Making information relatable By running focus groups with AAF, and surveys among the AACC, the team identified that CKD information booklets in King’s College Hospital are not relatable or accessible enough. They also found that although people within the AACC would be interested in getting their kidney function checked, most preferred someone of the same cultural background test them. Lack of CKD knowledge and immigration status were also found to contribute to low engagement from the AACC, reinforcing what is currently known about the social factors that influence people’s health, leading to health inequalities. Roseline said: “I have learned that building and fostering trust within the black and ethnic minority community is important to health outcomes.”

Roseline and her team will use peer educators whom they call community champions (individuals from the same community who are trained to provide information and support) to work with the AACC. They have been recruited and are being trained using Kidney Research UK’s peer educator model. Roseline Agyekum

App use for immediate results The team will develop culturally appropriate information, then patient participants will be identified by local GP practices in south east London with low rates of urine testing for people with high blood pressure. Patients will be sent a urine testing kit to measure people’s albumin (protein) levels which will produce on the spot kidney function results when scanned into the smartphone app. Community champions will contact them to provide reassurance, support and encouragement to do their testing. Results will also be uploaded into a database monitored by the project team and sent directly to the participant’s general practitioner (GP) for follow up. After six months, Roseline and her team will contact participants to see if they have seen their GP, and if they haven’t, why not?

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

Roseline said: “We hope that through this research and collaboration, we will reduce kidney health inequalities, empower peer educators, and promote optimal kidney health for all”. Neerja Jain, health equalities programme manager at the charity said: “Our multi-award-winning peer educators have demonstrated that, through the right ‘messenger’, the lives of people in underserved communities can be improved. Roseline’s work seeks to take this evidence-based model to the next level by providing crucial education and actively encouraging self-care and testing in this high-risk community.”

82BPM

A huge thank you!

Thank you to all our Team Kidney heroes for your help in ending kidney disease. We can’t do it without you!

Sakshi Dewan Sakshi Dewan joined hundreds of people taking part in our London Bridges Walk in July. The 38-year-old was inspired to join the event after developing pre-eclampsia when pregnant with her second child, which affected her kidney function. At 33 weeks Maya was born by emergency caesarean. She was perfectly healthy, but Sakshi was anxious: “I constantly worried about whether I’d face kidney failure and go on dialysis or have a transplant, to the point that I couldn’t enjoy life with my new baby girl,” she said.

A private specialist reassured her that her kidney function shouldn’t worsen. “I thought the least I could do was to fundraise and raise awareness about kidney disease. I’d first heard of the London Bridges Walk in 2015, when my father was diagnosed with kidney disease. He died last year and when I walked through the streets of London I was thinking of him. It was very emotional.” Thank you to Sakshi and all our brilliant walkers!

Paddy Ions

Paddy Ions took on the Monster Triathlon in June to raise money for two charities close to his heart in tribute to his gran who required dialysis care for five years before passing away in 2011. The triathlon included a 5km (3.1 miles) swim across Loch Ness, a fiveday cycle from Loch Ness to Windsor covering 1,000km (621.3 miles) and finally a 50km (31 miles) run from Richmond to Windsor. Paddy has raised over £4,500, with half of this coming to Kidney Research UK. He’s a champ! Go, Paddy!

RAISED £4,500

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Thank you

Lucy Mackintosh RAISED £500

Volunteer trustees

The Sutherland family

We are grateful to all 15 volunteers on our board of trustees who bring vast expertise from medicine, business and patient experience. Here’s a spotlight on two recent recruits.

Paul and Liz Sutherland, from Surrey, have set up The Sutherland Family PhD Award with Kidney Research UK; a donation which will fund a PhD research project affiliated with Great Ormond Street Hospital.

Professor Sir John Cunningham Professor Sir John Cunningham has always recognised the importance of relationships – through his research into the corelation between the kidney and other body systems and through his close bonds with his patients, students and colleagues. Now he is working with Kidney Research UK to fight kidney disease and highlight its true cost to the nation.

Congratulations to everyone who has abseiled from the top of London’s ArcelorMittal Orbit for us. Lucy Mackintosh, a senior research assistant at the University of Hertfordshire, braved the 80m drop raising £500 for Kidney Research UK. “For the past 18 months I have been working closely with kidney organisations to help improve patient reported experience of care,” she said. “I know through my work how important research is for kidney patients in improving treatment and prognosis.

John, is professor of nephrology at University College London Medical School and The Royal Free Hospital, honorary fellow of Trinity Hall, University of Cambridge, and former Physician to the late Queen. He joined our board of trustees in 2020. “We need to bring groups together and encourage people away from ‘silo mentality’ so we can capitalise on opportunities to do more research and give more support to people affected by the disease,” says John. “Although we have much work to do, I do feel encouraged and optimistic about the future. It’s an exciting time to be a trustee for the charity.”

Lisa Chan Lisa Chan is a seasoned financial expert and a specialist in risk management. Using skills gained from an international career in corporate and investment banking, Lisa is now helping us to accelerate kidney research – a cause close to her heart. Recently retired, Lisa joined our Board of trustees in 2020. Already a supporter, due to her late mother’s chronic kidney disease, Lisa jumped at the opportunity to do more. “When I was working, I was only really able to contribute money to the charity but now I can give my time and get much more involved,” says Lisa.

Nick raised a fantastic £1,258 in this fitting tribute to his friend Phil Appleby, who he calls “one of the good guys”.

Phil passed away last year aged 48. After many years of declining health and a year on dialysis, Phil had a kidney transplant in 2010. He recovered spectacularly and within four months of having the transplant he was camping and hiking in Cornwall. Phil’s partner Ann said, “The new kidney was an incredible gift that enabled us to enjoy many years discovering many wonderful places and landscapes.” Well done, Nick.

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

Best friends since college, the two girls from the New Forest were very close. “She was there for me when I lost my dad,” Kerry said. “I’m godmother to her two boys, Elliot and Owen.

RAISED £1,258

Thanks so much to the Sutherland family for their invaluable support.

“Owen used to be Niki’s carer and he inserted her dialysis line for her and set up the dialysis machine,” she said. “Elliot inherited the condition and struggled with the thought that it might be him one day. I’ll be cycling 850km over 85 days, to represent the 850 million people with kidney disease all over the world.” Niki’s memory continues to inspire her. “She was the bravest person I’ve ever met.”

Weekly Lottery We have now officially given away over £20,000 in lottery prizes since our first draw in December 2020! Morag won £1k in April 2022: “I started playing the Weekly Lottery after my husband started dialysis. I never realised before just how much of a daily, life-changing impact the process would be, not only for him but for me and our whole family.” Thank you to Morag and all our Weekly Lottery players who have helped us raise over £130,000! If you would like to get involved, you can start playing today for £1 per entry: lottery.kidneyresearchuk.org

The Solomon family After Lady Judith Solomon passed away last year aged 82, her husband Sir Harry Solomon and children decided to set up an award to further research into kidney conditions. Lady Judith had been affected by kidney disease for many years after suffering from pyelonephritis while pregnant with her son Daniel.

We’re sending a big cheer to Kerry Brindle, who has taken on the 850 Cycle Challenge in a tribute to her best friend Niki Power, who passed away five years ago with polycystic kidney disease.

Check out our website for the next chance to take part: www.kidneyresearchuk.org/events

Nick Price wanted to raise as much money as he could for Kidney Research UK and do something would stretch him both physically and mentally, so in May he took on the Jurassic Coast Ultra Challenge. This 58km (36 mile) walk follows the spectacular world heritage coastline in Dorset from Corfe Castle, Swanage, Lulworth Cover past Durdle Door finishing in Weymouth.

Kerry Brindle

“It’s an honour to be a trustee and it’s very rewarding to be able to offer ideas, advice and support. It’s different from working for a company where your main goal is usually just to make more money. What we are trying to do is to make people’s lives better – and you can’t put a dollar sign next to that.”

“We had so much fun and we’ll never forget the views from the top. If you’re thinking about a Team Kidney challenge, just do it, you won’t regret it!”

Nick Price

The Sutherland family has been touched by kidney disease in many ways. When Paul Sutherland was 11 years old he was diagnosed with reflux (a condition where the urine flows backwards from the bladder), but had already suffered significant kidney scarring. When son Jamie, now 21, was born, he was also diagnosed with reflux, but had successful treatment as a baby. The award recipient, a PhD student supervised by Professor David Long, will look into the causes of vascular damage in children with chronic kidney disease.

The couple said, “We’ve seen first-hand how research made a difference to our son’s life compared to what Paul experienced. Identifying and treating kidney issues in childhood is key to improving quality of life in adulthood.”

This year’s award will support two projects, one at the University of Warwick, looking into the use of ultrasound in dialysis patients, and the other at the Royal Hospital for Children, in Glasgow, to help the development of virtual reality headsets to help families learn about the process of dialysis. Juliet, Lady Judith’s daughter, said, “We are incredibly proud to set up this award in my mother’s memory.” Thank you so much to the Solomon family for their generous donation.

Diary dates We’d love to see you at our events – visit our website for details! The Andy Cole Fund Gala Dinner Thursday 3 November Driving Discoveries Conference Wednesday 9 November Advent service, Peterborough Cathedral Sunday 27 November World Kidney Day Thursday 9 March 2023 London Marathon Sunday 23 April 2023 Glasgow Kiltwalk Sunday 30 April 2023 London Bridges Walk July 2023 Great North Run 10 September 2023 Skydives and bungee jumps Various dates Ultra challenges (Jurassic Coast, London to Brighton, Lake District, Thames Path, North Downs) Various dates

Want to join Team Kidney?

You can get your fundraising pack here: www.kidneyresearchuk.org/ tell-us-about-your-fundraising

kidney disease ends here.