for a new way

To Keep Bone And Blood Vessels Healthy In Chronic Kidney Disease Patients

Dr Donald Ward from the University of Manchester is supported by a Kidney Research UK grant of £245,000.

Improving our understanding of polycystic kidney disease (PKD) and discovering new treatments

The problem

Small glands in our neck, called parathyroid glands, release parathyroid hormone (PTH) to control how much calcium is in our blood and bones. In patients with chronic kidney disease (CKD) too much PTH is released, leading to bone loss and hardening of blood vessels. Parathyroid glands contain a calcium-sensing receptor (CaR) that controls PTH secretion, however, in CKD the receptor does not work properly. Donald and his team think that the high levels of phosphate in the blood that can occur in CKD may cause problems with the CaR.

The solution

Donald wants to ensure that the parathyroid gland releases less PTH. There are drugs available that lower phosphate, but they don’t stop excess PTH release. Donald will look at treatments that act directly on the receptor, rather than lowering the level of phosphate in the blood.

What this might mean for kidney patients

By understanding how phosphate increases PTH release we can better target our search for improved treatments to avoid bone loss and blood vessel stiffening in CKD. Donald and his team hope that this will lead to important improvements in quality of life and life expectancy for CKD patients.

The problem

PKD is a genetic disease that causes fluid-filled cysts to grow within the kidney. Currently available medications can slow progression, but a better understanding of how the disease develops could lead to more effective treatments.

The solution

The use of ‘kidney organoids’ (miniature, simplified versions of kidneys that can be grown in the lab) offers an improved way of studying human kidneys compared with more traditional approaches. Cristina is going to grow kidney organoids in the lab at the University of Cambridge, to investigate how PKD cysts develop.

What this might mean for kidney patients

Using the organoids, Cristina will learn more about how to limit the growth of the cysts in PKD, and potentially how to prevent their formation. The team will not only learn from their kidney organoids but will also work alongside pharmaceuticals companies to support development of new treatments for PKD.

For PKD patients like me, cysts are that constant, nagging reminder that all is not right with our bodies – the constant discomfort, sometimes pain when they burst, the distended belly. Research into arresting their growth is vital to improving our quality of life, and that of our children who may have inherited this terrible genetic disease.

Wayne Smith (PKD patient)

If you want to get on board at Kidney Research UK but are not sure how, take some inspiration from these volunteers and fundraisers...

The work we do at Kidney Research UK is enabled thanks to a variety of donations, but some of the most crucial contributions are those made by our wonderful volunteers and fundraisers. These incredible individuals are a vital part of what we call Team Kidney. They are pivotal when it comes to driving change, using their time, voice and money to help us fund vital research, spread the word about our work and improve the lives of those affected by kidney disease.

But whilst we’re constantly amazed by the amount of time and energy people are prepared to generously give, Marc Shaw, head of community, events and volunteering at Kidney Research UK, says there’s always room for more people on Team Kidney – anyone can get involved. He said: “If you’re a researcher, you’re part of Team Kidney, if you’re a volunteer, you’re part of Team Kidney, if you’re fundraising, you’re part of Team Kidney, if you’re affected by kidney disease, you’re part of Team Kidney. We’re all in this together. That’s what Team Kidney signifies.”

Talking about the importance of volunteers in particular, Marc said: “Our research network volunteers, our community ambassadors, our lay advisory group members, our peer educators and our events volunteers all form an integral part of Team Kidney, supporting us in our work, often literally cheering us on. The more people who join Team Kidney, the louder our collective voices will be and the bigger the difference we can make together.”

Through volunteering

There’s no doubt that the efforts of our volunteers and fundraisers are hugely beneficial to the charity, but one thing we hear time and time again is how fulfilling it is for them to give something back. One person who can vouch for this is Richard Bennett from High Wycombe, who started doing his bit for Kidney Research UK as a teenager. Richard was diagnosed with the rare genetic condition Alport syndrome, which causes kidney failure, when he was just six years old and grew up learning about the importance of research and charity work.

He said, “I first started as an event volunteer when my dad did the London Marathon for Kidney Research UK when he

Richard Bennett and family was 40. I was 13 at the time and went along to the marathon for a few years after that with a bucket to collect money. Then, when I was 40 I had a midlife crisis and decided to do 12 events in 12 months to raise money.”

But physical challenges aside, Richard, now 47, who has just competed in the World Transplant Games in Australia, tells us that his main contribution to the charity these days is as a member of the Lay Advisory Group (LAG), which drives and strengthens patient and public involvement in Kidney Research UK. “Our objective is to give patient insight and put patient involvement at the forefront of research,” he said. “We’re a diverse group and we’ve all got our own experiences. Some of us are kidney patients, some have family members who are kidney patients, some of us have been on dialysis and some of us have had transplants.”

Richard, who works as a procurement consultant in education, says he thoroughly recommends getting on board with the charity. He told us, “I’d really encourage others to volunteer as it’s so rewarding. You feel like you’re making a difference, and having a bit of influence over how things are done makes you feel useful.”

Raising awareness in the community

Another person who’s thrilled to be part of Team Kidney is 72-year-old Maria Buckley from Milton Keynes, who’s been volunteering with us as a community ambassador since her kidney transplant in 2020. Maria was diagnosed with diabetes in her 30’s and saw her kidneys deteriorate over the years until she was put on dialysis in 2019.

She said: “I organise talks in community groups as I want to help raise awareness of kidney disease. I talk about the risks, the symptoms, and how to keep the kidney fit.” Maria is also on our readers panel, which helps ensure our resources are relevant and accessible, and she tells us that she finds volunteering “very fulfilling”. She explained, “A lot of people say that I’m helping people by doing this, but I also learn so much myself, I think it benefits me more than others. Being a volunteer is all about humanity, empathy and strength.”

Using her patient expertise

Megan Cairns, 26, is also keen to share her experience and knowledge with others, having been diagnosed with kidney failure at the age of five. Megan had a kidney transplant at 12 and has thrived ever since, gaining a degree in pharmaceuticals before starting her PhD at the School of Nursing and Midwifery at Queen’s University in Belfast.

But as well as doing her PhD, which is looking at sexual dysfunction in people with chronic kidney disease, Megan finds the time to be a research network volunteer for Kidney Research UK. This involves having a say in which areas of research will be most beneficial to patients and contributing to decisions around which research projects the charity should fund. She explained: “An email goes out to volunteers to say that grant applications need to be reviewed and we’ll read through the application. There’s a questionnaire at the end which you fill out to say if you think the research will be beneficial and asking if you think there’s enough patient input into how the research project will run.”

But that’s not all Megan does. On World Kidney Day this year she hosted an event in her student union to educate her peers. “I was able to teach students about kidney disease, raise awareness and bust some myths and talk about organ donation. We had 20 people sign up to become organ donors.”