Update.
The magazine from Kidney Research UK
Transplant recipient Khalid Mahmood MP supports urgent action on kidney disease
Page 6
Is there ever an ‘ideal’ kidney journey?
Page 4
‘Make Your Mark’ campaign boost to living donation
Page 10
Spring 2024 Issue 33
Welcome.
Sharing your story to increase people’s understanding of kidney disease is one of the most powerful things our supporters can do. Huge thanks to everyone who has helped us in this way. We were delighted when Khalid Mahmood MP agreed to share his experience with us to help make the case – within and beyond the walls of Westminster – for preventing and limiting the terrible damage that chronic kidney disease can cause. We have had an excellent response to the Chronickidney diseaseandprevention report Khalid helped us launch in January.
Preventing and delaying kidney disease are key themes for World Kidney Day this year, on 14 March. Please look out for the ways in which you can continue to help us amplify messages and help others access useful resources on page 3.
Another launch that looks set to make a huge difference to kidney patients is the Robert Dangoor Living Kidney Donor Programme, introduced on pages 10-11. We are so proud to work with Robert’s brother David and the charity Give a Kidney to raise awareness through this new programme. If you or someone you know want to find out more about living kidney donation, please visit the website www.donateakidney.co.uk
There are so many exciting things taking place, and projects making great progress, we can only bring you some of them in this issue of Update –I hope the news continues to inspire and help you and others in the kidney community.
Thank you for your ongoing support.
Sandra Currie, Chief executive
Experts call for improved prevention and early diagnosis
In January, we went to Westminster to launch a new report setting out how we want to see the government improving the early diagnosis and prevention of chronic kidney disease in England.
Based on expert insights, the new report identifies specific ways in which the diagnosis, monitoring and management of kidney patients could be improved to help slow disease progression and improve patient care.
The launch of the report Chronic kidneydiseaseandprevention: Harnessingthepotentialof earlyinterventionanddisease management was sponsored by Khalid Mahmood MP, who spoke of his own experiences of struggling with dialysis, his subsequent kidney transplant and losing his brother to kidney failure. Learn more about Khalid’s experiences on pages 6-7.
New Wales project for underserved communities launches
On World Diabetes Day, our new project in Wales aiming to stop diabetes patients from under represented groups developing kidney failure launched at the Senedd (the Welsh Parliament).
Funded by NHS Wales Executive, this project is being delivered in partnership between Kidney Research UK, Diabetes UK Cymru, Kidney Wales and a number of community organisations.
Contact the editorial team Kidney Research UK, Stuart House, City Road, Peterborough PE1 1QF 0300 303 1100 pressoffice@kidneyresearchuk.org
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News 2
Cover photo Khalid Mahmood MP is kindly supporting our latest report into chronic kidney disease, and tells his transplant story on pages 6-7.
Khalid Mahmood MP at the report launch with our chief executive Sandra Currie
To make a gift to Kidney Research UK call: 0300 303 1100 or donate online: www.kidneyresearchuk.org/donate
Downing Street recognition for Charlie
A young Kidney Research UK supporter has received an award from the Prime Minister for his incredible efforts raising funds and awareness.
Charlie, 13, from Rutland, received Prime Minister Rishi Sunak’s Points of Life award in recognition of his outstanding and inspirational voluntary work.
Charlie was first diagnosed with nephronophthisis, a type of kidney disease, at the age of eight. Since then he has been determined to help other children going through similar circumstances. He has facilitated courageous conversations about the importance of organ donation, produced educational materials and offered in-person peer support to others. He has raised thousands of pounds for charity, most recently raising £9,000 for us by walking the distance of Land’s End to John O’Groats over 365 days.
World Kidney Day
“We are incredibly proud of Charlie and couldn’t be more delighted that he has won this award,” said Sandra Currie, our chief executive. “We deeply appreciate the honest patient perspective he brings to any project he is helping with and are just so impressed by his constant efforts to help others.”
This year World Kidney Day takes place on Thursday 14 March and we have many ways you can get involved. After something straightforward? Help us spread the word about the challenges of kidney disease. We’ll be working with the Kidney Charities Together group so keep an eye on our social media channels for posts to share far and wide.
You can also help kidney patients get our unique wellbeing kit, or raise vital funds for research.
The March March
Why not take on our virtual challenge in honour of World Kidney Day – and ask friends and family to sponsor your efforts. Take on The March March to walk 10,000 steps a day, for 31 days, and fundraise to support life-changing research. Full details on our website: www.kidneyresearchuk.org/ fundraising-events/March
Potentially life-saving treatment recommended
The National Institute for Health and Care Excellence (NICE), has issued guidance recommending a new treatment for patients with chronic kidney disease (CKD) called empagliflozin, a type of medicine known as an SGLT2inhibitor, usually given to people with diabetes. This has been shown to slow down progression to kidney failure and reduce the risk of heart attacks and strokes.
Kidney patients will have to meet certain criteria in order to access the drug, however this is the first SGLT2-inhibitor to become available to CKD patients with severely impaired kidney function without the requirement for them to also have type 2 diabetes or proteinuria.
We are very pleased to see the range of SGLT2-inhibitors being recommended for patients with chronic kidney disease is broadening.
Free wellbeing kit
If you know someone recently diagnosed with kidney disease, invite them to sign up for our free kidney kit. Packed with expert information about diet, exercise and living life to the full with kidney disease, it’s available by signing up here: www.kidneyresearchuk.org/kidney-kit
In June this year, our report Kidneydisease:A publichealthemergency recommended this class of medication be made more widely available to CKD patients, as part of a package of measures urgently needed to save patients’ lives. The approval of empagliflozin for patients in England and Wales is an important step in the right direction.
Dr Aisling McMahon
executive director of research and policy at Kidney Research UK
News 3
Charlie with MP
Alicia Kearns
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Is there ever an ‘ideal’ kidney journey?
Early detection of kidney disease can increase treatment options, providing an opportunity to slow progression and protect kidney function. This can drastically improve quality of life for patients as they may be able to delay or avoid the need for dialysis completely, something kidney patient Adam Musa is all too aware of.
To make a gift to Kidney Research UK call: 0300 303 1100 or donate online: www.kidneyresearchuk.org/donate
Many patients are currently undiagnosed until they reach the later stages of kidney disease. This is even the case for individuals who are known to be at greater risk, including those living with diabetes, high blood pressure or cardiovascular disease.
Ethnicity and family history are also significant risk factors, with kidney failure up to five times more likely in people from minority ethnic groups.
Being from a British Asian background, Adam Musa was unknowingly at greater risk and his life was turned upside down overnight when, aged 21, he went to A&E with difficulties breathing and was rushed to intensive care. His kidneys had failed, and he needed immediate dialysis to keep him alive (commonly known as ‘crash landing’). He says: “If I had left it any longer, I don’t think I’d be here today. When I went for dialysis, the nurses were amazed and told me they’d never seen anyone with blood results as bad as mine.”
Hidden disease
Adam had lived a very active lifestyle, working full-time, playing sports and socialising. It was only in November 2008, five months before he was in intensive care, that he recognised changes in his health which, in
hindsight, were signs of his kidney disease. Adam says: “I was not eating much, not feeling great, sleeping a lot, getting occasional swelling in my legs and not passing as much urine. Something wasn’t right.”
As his health declined, Adam made an appointment with his GP, but this did not lead to any further tests and didn’t uncover any health problems. Adam says:
If a simple blood test was done at that point, maybe I wouldn’t have been so ill down the line where my kidneys completely failed.
Adam initially thought his symptoms were just the result of life circumstances. Redundancy during the financial crisis caused low mood and he thought that his fatigue and swollen legs could be due to intense five-a-side football sessions. He says: “Health-wise I was fine until I was 21 years old. Then suddenly, I ended up being diagnosed with end stage renal failure. Spending four hours at a time hooked up to a dialysis machine, multiple times a week, was completely alien to me. I was the youngest guy there surrounded by older people and thinking what am I doing here?”
Life has been tough
Although his kidney disease seemed sudden, it transpired that Adam had been born with congenital renal dysplasia which had gone undetected. His kidneys had never fully developed; one had stopped functioning altogether long before the second failed in 2009.
Although Adam received a transplant from his dad that year, after six months on dialysis in 2018, this kidney failed. Dialysis has been necessary again for the past five years and Adam is now waiting for a second transplant.
Adam says: “I try to live my life to the fullest despite the setbacks, particularly for my wife and two children who I am blessed with. It’s frustrating to know that if my kidney disease had been detected sooner, I might not have gotten so ill, so it is my hope that new patients are diagnosed much sooner.”
Alison Railton, head of policy and external affairs at Kidney Research UK, says: “Early detection is crucial to enable patients to access appropriate treatment and advice that can help maintain a better quality of life.
“In June 2023, we published a report into the economic impact of kidney disease in the UK. This demonstrated that early diagnosis and improved management of kidney disease can save lives and money. We’re raising awareness amongst GPs and other clinicians of the increased risk of kidney disease faced by people from Black and South Asian backgrounds so opportunities to treat people like Adam earlier aren’t missed.”
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Adam with daughter Aaisha
kidney disease ends here.
Adam with daughters Aaisha and Safaa.
Bringing the personal to parliament.
Khalid Mahmood is the UK’s longest serving Asian MP, having represented his Birmingham Perry Barr constituency since 2001. Motivated by his own dialysis and transplant experiences, the 62-year-old Labour politician is the parliamentary sponsor for the launch of our new report into chronic kidney disease in England.
Whilst details of his kidney disease were once kept private, today Khalid is open and enthusiastic in sharing an honest account of his experiences to try to help others. It’s nine years since his good friend, former MEP Siôn Simon donated a kidney to Khalid, effectively saving his life, and he is clearly still making the most of this precious gift.
Khalid’s kidneys were irreversibly damaged in 2008 after a viral infection in his lungs led to cardiomyopathy (a serious heart condition) and his blood pressure sky rocketed. He was warned his kidneys would continue to deteriorate, and in about ten years they would stop functioning, “Literally ten years to the week
they did a check-up and kept me in, saying that I’d now have to be put on dialysis,” he recalls.
“I was taken into hospital and for a few days I was completely out of it, then I woke up and was vomiting. It really hit me in a very drastic way. They’d put lines in through my neck to be able to dialyse me. And it was very difficult, trying to comprehend that I was a different person now.”
Determined to carry on with his political duties, Khalid and his team set about organising his time to fit in dialysing three times a week, face to face constituency and parliamentary meetings and attending the House of Commons.
“Thanks to all the people that worked with me, we managed to get through all that,” Khalid remembers. “Dialysing and then getting off to a
meeting isn’t very easy. I would need at least an hour and a half to recover after dialysis. Then I decided to dialyse at home, which gave me more time to do my work. It was pretty exhausting, but I was determined to do what I could.”
A transplant would offer a far better quality of life. Two people wanted to donate to help Khalid, but weren’t able to because of their own health issues. “The third person who literally forced his kidney on me was a very good friend, Siôn Simon, who was an MEP at the time,” he says.
“He was really unbelievable. He just literally said ‘I want to do it for you. If you don’t want to do it, give me your consultant’s number and I’ll sort it out myself’.
“Luckily, he was a very fit person and his kidney was brilliant.”
To make a gift to Kidney Research UK call: 0300 303 1100 or donate online: www.kidneyresearchuk.org/donate
Dialysing and then getting off to a meeting isn’t very easy. I would need at least an hour and a half to recover after dialysis. Then I decided to dialyse at home, which gave me more time to do my work. It was pretty exhausting, but I was determined to do what I could.
Nine years on, Khalid’s friendship with Siôn is stronger than ever and his kidney is faring well.
“I think if the transplant had not come through it would have been a different game,” he acknowledges. “I would have gradually got weaker. On dialysis I often fell over. It was difficult after being on dialysis just trying to climb steps and do those sort of things. I realised how difficult it is for disabled people who are not supported properly.”
Today, Khalid is anxious that kidney disease is better prioritised. He fully supports the recommendations from our new report Chronickidney diseaseandprevention, including targeted testing for CKD in ‘at-risk’ patients, upskilling more primary care practitioners on kidney disease, diagnosis and treatment and more investment in research.
“Research is the key to everything,” he says. “The cost of research is much less than actually dealing with people once they’ve ended up with kidney failure. So I would certainly urge any government to look at
much more research to provide a better way forward for people with kidney disease.”
To read the extended interview, please visit: www.kidneyresearchuk.org
MP interview 7
Our new report Chronickidneydiseaseandprevention kidney disease ends here.
Keeping an eye on kidney disease.
We are determined to find new, kinder ways to monitor disease progression, which is why we are excited by the results of a study by researchers we are funding at the University of Edinburgh.
The team have shown that specialised eye scans using an imaging technology called optical coherence tomography (OCT) could potentially be used in the future to monitor kidney disease progression.
Kidney health is currently assessed by blood tests or invasive kidney biopsies (taking a small tissue sample). However, performing multiple biopsies over time to track any changes in kidney function can be unpleasant for patients and comes with some risk.
The way that the blood vessels develop is similar in the eye and the kidney, so some diseases might appear in a similar way in both organs. This enables researchers to gain important insights into kidney function by studying the eye. The Edinburgh team, led by professors Neeraj (Bean) Dhaun and Matt Bailey, have used a fast and noninvasive imaging technology called OCT, which creates a detailed map of the eye’s layers, including the choroid layers (structures at the back of the eye that play important roles in helping you see and keeping the eyes healthy).
With funding from Kidney Research UK, in partnership with The Stoneygate
Trust and the British Heart Foundation, the Edinburgh team investigated whether measurements taken by OCT changed in line with changes in kidney function.
Eye measurements reflect changes in kidney function
The team compared eye scans from healthy volunteers with those from patients with different levels of kidney function. They found that compared with healthy volunteers, patients with CKD had thinner retina and choroid layers, which became even thinner over time as their kidney function declined. As early as one week after a kidney transplant, patients who had previously had kidney failure had thicker retina and choroid layers, which kept getting thicker for at least 12 months as their kidney function improved. The team also showed that in patients with CKD, this thickness could be used to predict a future decline in kidney function.
With further funding from Kidney Research UK, the team are now working to understand the exact
mechanisms that cause these eye changes to occur in line with kidney changes.
A kinder way to monitor disease
Together, these results suggest that OCT measurements of the retina and choroid layers of the eye could be used as a non-invasive and sensitive way to monitor kidney disease progression and treatment response and might predict which patients may experience further health problems allowing doctors to intervene and treat them earlier.
Bean, professor of nephrology at the University of Edinburgh’s Centre for Cardiovascular Science, said: “This research shows that the eye is a useful window into the kidney. We hope with further research this technology will help identify more people with early kidney disease, providing an opportunity to start treatments before it progresses. It also offers potential for new clinical trials and the development of drug treatments for a chronic disease that, thus far, has proved extremely difficult to treat.”
A new project 8
Neeraj Dhaun
To make a gift to Kidney Research UK call: 0300 303 1100 or donate online: www.kidneyresearchuk.org/donate
Matt Bailey
Kidney patients often face invasive procedures to monitor their kidney health, often on top of receiving treatments like dialysis, which can be exhausting. We are proud to have funded this fantastic research that shows the potential for a far kinder way of monitoring kidney health, and we are continuing to support the team as they investigate whether their approach could also be used to diagnose and intervene in kidney disease earlier.
Dr Aisling McMahon, executive director of research and policy at Kidney Research UK
A new project 9
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Make Your Mark and boost living kidney donation .
Kidney Research UK has joined forces with Give a Kidney, a charity devoted to living kidney donation, to deliver the Robert Dangoor Living Kidney Donor Programme. This exciting venture has been made possible by businessman and philanthropist Dr David Dangoor CBE who previously donated a kidney to his brother Robert.
To make a gift to Kidney Research UK call: 0300 303 1100 or donate online: www.kidneyresearchuk.org/donate
The programme has been created to raise awareness and encourage more people to make their mark on the world by considering donating a kidney during their lifetime. Together, the two charities will help more people understand what it means to be a living donor, as well as supporting and guiding them throughout their donation journey. The programme will also be working closely with NHS Blood and Transplant.
The need for living kidney donation
Despite ongoing work to encourage kidney donation from both living and deceased donors, around six people die each week in the UK waiting for a kidney transplant.
Enabling more transplants could help patients with kidney failure to come off or avoid life-limiting dialysis treatment, whilst a 2023 Kidney Research UK report found that increasing rates of transplantation, specifically from living donors, would not only improve outcomes for patients but would also be cost-saving for the NHS.
The chance of finding a suitable match for people on the deceased donor transplant list is higher from a donor of the same ethnicity. Currently, people from Black and Asian backgrounds are more likely to need a transplant but people from the same backgrounds are less likely to donate, so patients often wait longer for a suitable donor to be found. Living donation enables potential donors to come forward and be tested, increasing the opportunities for everyone waiting for a transplant.
Impact of the initiative
A new website, www.donateakidney.co.uk, launched in January to help support people who want to learn more about living kidney donation. The website takes prospective donors and their families through each stage of their donation journey, from considering donating through to their surgery and support after leaving the hospital.
The website is part of a nationwide promotional campaign called
‘Make Your Mark’ also launched to further raise awareness of living kidney donation, sharing stories and experiences of previous donors and healthcare professionals who have made a lasting, positive impression on the world.
About David Dangoor
Dr David Dangoor CBE spent his early life in Baghdad as part of Iraq’s Jewish community, arriving in the UK with his parents and his brothers in the 1960s, where he was educated at Carmel College and Imperial College London.
He then worked as a systems analyst at IBM, before joining the family property business.
David’s philanthropy is focused on healthcare/medicine, education and promoting inter-faith harmony.
In 2019 David donated a kidney to his brother Robert, whose kidneys had been damaged by medication for another illness. Sadly, Robert died in 2022 and David and his family wanted to do something positive in his memory.
Get involved
Discussing the project, David said:
The growing rate of kidney disease here in the UK and across the world means that every day, lives are lost to this awful condition.
Having donated a kidney to my brother, I know first-hand that it is perfectly possible to do this and to carry on living a normal life.
Through this programme, I hope that more people can learn about the possibilities of living donation and may be inspired to take that step and change the life of someone living with kidney disease. Our ultimate vision is that no one should die waiting for a kidney.
The Make Your Mark campaign wouldn’t be possible without the help and experience of previous living kidney donors and our supporters.
Visit www.donateakidney.co.uk or follow us on Facebook, Twitter and Instagram on @donateakidneyuk to discover more, including how to contact the programme team and support this life-saving cause.
Living donor campaign 11 kidney disease ends here.
Simon Froggitt donated a kidney to his wife Diane in 2022. They are among many donor-recipients supporting the new programme.
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.
Can ‘prehabilitation’ benefit kidney patients preparing for transplant?
Juliet Briggs from King’s College Hospital NHS Foundation Trust has been awarded an Allied Health Professional Fellowship of £252,000.
The problem
Kidney transplant is usually the best treatment for kidney failure, and having a healthy, active lifestyle will increase the chances of successful transplant. Waiting for a kidney transplant can be a long process, often requiring dialysis treatment, and can impact a patient’s mental health and ability to exercise.
The solution
‘Prehabilitation’ is a term used to describe a proactive approach to preparing a patient emotionally and physically to make sure they are in the best possible condition for an upcoming surgery or treatment.
Juliet will develop and test a 12-week online prehabilitation programme, using the Kidney Beam online platform, tailored to the needs of patients undergoing kidney transplant.
What this might mean for kidney patients
This would provide a valuable addition to routine NHS pre-transplant care, aiming to make sure that patients are in the best mental and physical health possible before their transplant to increase their chances of a smooth recovery and successful transplant.
A programme aimed at helping kidney patients like me prepare for transplant is very welcome. Waiting for a transplant is an anxious time, so a programme like this could help patients become as physically and emotionally robust as possible before surgery.
Linda Broome
Development of an organ-on-a-chip model of polycystic kidney disease for testing new therapies.
Professor Martin Knight from Queen Mary University London has been awarded a Start Up grant of £40,000.
The problem
PKD is a genetic disorder where fluid-filled sacs called cysts form in the kidneys, affecting their function over time and often leading to kidney failure. Autosomal dominant PKD (ADPKD) is the most common form, affecting 13 million people worldwide. We currently don’t have suitable systems to accurately test new treatments before testing them in people, and this is holding back the development of effective therapies for PKD.
The solution
Martin and his team will develop an organ-on-a-chip (an advanced technology that combines tiny fluid channels and living cells to make small-scale models of organs that mimic how they work in the body) model of ADPKD. In collaboration with a commercial company, who will use gene-editing technology to make cells with the most common gene faults seen in patients with ADPKD, Martin’s team will grow the cells within their organ-on-a-chip model. This will allow researchers to study how potential treatments may affect organs, providing valuable information for developing and refining new therapies.
What this means for patients
This novel technology has huge potential to support research and speed up the development and testing of new therapies for ADPKD.
The development of an organ-on-a-chip model for ADPKD is hugely exciting news. There’s no doubt that this will accelerate creating new therapies and ensuring they are safer when offered to patients like me.
Zahra Seyyad
To make a gift to Kidney Research UK call: 0300 303 1100 or donate online: www.kidneyresearchuk.org/donate
Finding new treatments for diabetic kidney disease.
Professor Richard Coward from the University of Bristol has been awarded a Research Project Grant of £229,655.
The problem
Diabetic kidney disease (DKD) is the leading cause of kidney failure in the world. Current treatments only slow down the progression of disease but do not provide a cure.
Podocytes, cells which form part of the kidney’s filters, lose their sensitivity to insulin in diabetes and this is thought to be an important step in the development of DKD. Richard and the team used human podocytes in a dish to screen over 1,250 different drug classes, to see which ones made the cells more sensitive to insulin.
The solution
Richard and the team will now study one of the drugs that was shown to increase insulin sensitivity in detail to see how it works, how it affects podocyte cells, and whether it also affects other cell types.
What this means for patients
This work will help to establish whether the new drug could be used to treat patients with DKD. Understanding how this drug increases insulin sensitivity in the podocytes may also reveal other ways to treat this devastating disease.
Many patients with long-term conditions are anxious and realise that they are at risk of many more conditions. With diabetes this can be overwhelming, especially as initial kidney failure can be symptom-free, so this would appear to be a major step forward.
Andrew Freeman
An artificial intelligence device to predict acute kidney injury.
Dr Sergei Krivov from the University of Leeds has received a Research Project Grant of £220,000.
The problem
Acute kidney injury (AKI) is a sudden, rapid loss of kidney function. If not treated early, it can mean long hospital stays and increased risk of developing chronic kidney disease, or death if the kidneys shut down completely. The current NHS AKI alert system uses changes in blood test results to recognise AKI, but there is no current way to accurately predict who will develop it.
The solution
Using historical patient records, Sergei and the team developed an artificial intelligence device – ‘AKI-Predict’ – using an algorithm based on the current NHS AKI alert system, which quickly and accurately calculates a patient’s risk of developing AKI. The team will test to make sure AKI-Predict works in different hospitals and patients, and in real-time. The team will use this evidence to promote the use of AKI-Predict in hospitals across the UK.
What this might mean for kidney patients
AKI-Predict could enable doctors to quickly treat at-risk patients, meaning less severe illness, fewer complications, and shorter hospitalisation. It could also help medical staff and researchers understand which factors increase or decrease the risk of AKI.
An early prediction of the risk of developing chronic kidney disease? Kidney patients who have experienced an AKI will understand what a game changer this might be if AKI-Predict proves to be accurate and reliable.
Alan Hancock
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A huge thank you !
Thank you to all our Team Kidney heroes for your help in our mission to end kidney disease. We can’t do it without you!
A step beyond our Bridges Walks
We met hundreds of inspirational people at our Bridges Walks in the summer of 2023, including Melissa Lanigan, Steven Moffat, and Ian Alexander. They have each taken their fundraising one step further by organising their own events to support our work, and we’d like to say thank you.
Melissa, founder of top Glasgow fashion brand, Kiwi & Co, is currently on the transplant list and hosted a pop-up shop event for local small businesses which raised nearly £5,000. Steven, club captain at Bothan Victoria AFC, lives with kidney disease and has the support of his football team in raising money at each game. And Ian, a transplant recipient and competitive strongman, will be hosting his own competition at a local gym in 2024.
Inspired to get involved? Join our Bridges Walks in Glasgow, London, and Newcastle in 2024. Register interest for an event on our website: www.kidneyresearchuk.org/events
JOIN US IN 2024!
A year of inspiration in one book
Celebrities from the worlds of TV, film, sport, politics, literature, news and science have shared their wise words in a book raising funds for Kidney Research UK.
We’re hugely grateful to Juliet Solomon who has compiled The Book of Nuggets in memory and honour of her mother Lady Judith Solomon, drawing together over 390 ‘nuggets’ of wisdom which people from all walks of life have found important in their lives.
Some of the contributors are well known including Sir Michael Palin, Dame Judie Dench, Delia Smith, Dame Shirley Bassey, Dawn French and Stephen Fry. Their insights sit alongside many others, including kidney patients, their families and researchers.
An inspiring gift for yourself, or others, the book is available to buy from our online shop, with all proceeds coming to the charity.
Visit our website and search Book of Nuggets to buy your copy.
Ian Alexander
To make a gift to Kidney Research UK call: 0300 303 1100 or donate online: www.kidneyresearchuk.org/donate
Patient voices creating change
We are incredibly grateful for the work our lay advisory group does to strengthen patient and public involvement in influencing decisions about kidney disease. Helen Rogerson has been at the forefront of the group for six years, making a huge contribution to its successes.
Helen has represented our charity at dialysis information days multiple times this year, using her experiences to equip patients with knowledge to inform decisions about their treatment. Her passion for supporting others is inspirational. We’d like to say thank you to Helen, as she moves on to a new role with us as a community ambassador. Volunteer to support others on our website: www.kidneyresearchuk.org/support/volunteer
Walking all over kidney disease
Thank you to everyone who joined our first Peterborough Cathedral Winter Walk in December 2023. On a snowy Sunday, our community came together to complete the five-mile circular walk, taking in the scenic surroundings of Nene Park.
A special mention for Simon and Diane Froggitt who joined us on the day and shared their incredible story with media outlets to raise awareness of kidney disease. Simon donated his kidney to Diane in 2022 as her kidney function reached a critical point. He says, “Diane is everything to me. We’ve been together for 28 years, so there was never any doubt that I’d help if I could.”
Register your interest in joining our 2024 walk on our website.
Patient experts influence approval of new treatment
A big thank you to Ben Stokes, who joined an expert panel of patients in sharing his insight to influence the approval of a new treatment for IgA nephropathy. Targeted-release Budesonide is a type of corticosteroid now recommended by the National Institute for Health and Care Excellence (NICE) to help slow disease progression.
Ben spoke openly to decision-makers about his personal experience of kidney disease to highlight the life-changing impact this new treatment could have by prolonging kidney function for patients. His contribution will make an enormous difference for others undergoing treatment.
Double delight for lottery winners
Congratulations to our winners of the weekly Kidney Research UK lottery, including Louise who has won £1,000 for the second time! By playing the lottery, our supporters provide funding for vital research to improve the lives of kidney patients. Martin, a fellow winner of £1,000, reacted to his win by saying: “I support Kidney Research UK because my Grandad died of kidney disease and I wanted to help and potentially win some money, I’m delighted!”
Play the Kidney Research weekly lottery today at: lottery.kidneyresearchuk.org
Diary dates
Make a note of these vital dates and visit our website to register your interest in our events.
The March March
March 2024
World Kidney Day
Thursday 14 March 2024
World Kidney Day Skydive
Saturday 16 March 2024
London Marathon (volunteers needed!)
Sunday 21 April 2024
Garden Party
Weekend of 25/26 May 2024
Ride London
Sunday 26 May 2024
Lake District Challenge
Saturday 8 June 2024
Glasgow/London/ Newcastle Bridges Walks
Summer 2024
Andy Cole Fund Golf Day
Wednesday 5 June 2024
Andy Cole Fund Gala Dinner
Thursday 7 November 2024
you 15
Thank
Find out more about other ways to support us and get involved: www.kidneyresearchuk.org/support Ben post transplant 25 14 48
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