Reflecting on 2020 – a year like no other
This year has been difficult for everyone, especially kidney patients and their families.
But despite the challenges we’ve all faced – from shielding and isolation to events being cancelled and research funding taking a hit – there have also been plenty of achievements worth shouting about!
Here’s a selection of what we’ve achieved together this year – thank you so much to our band of loyal #TeamKidney supporters, including fundraisers, researchers, patients, trustees, volunteers and staff. We couldn’t have done it without you.
Hello 2021 – we’re ready and waiting for you!
2020 began as we planned - our research grants committee met and agreed to fund some fantastic new research projects that were awarded later in the year.
We were also able to celebrate the impact of our research when we found out our short film had been shortlisted in the 2020 Charity Film Awards!
Our film, ‘Saving Lives – how genetics research changed the future for people with aHUS’, tells the story of Ros, a young farrier who received life-saving treatment when her kidneys started to fail as a result of her rare kidney condition. The film reveals how genetics research found a treatment which saved her.
Research we funded was crucial to finding an effective treatment for aHUS. Led by Professor Tim Goodship, the Newcastle University team worked out how to block the biological process causing the kidney damage and stop aHUS in its tracks using a drug called eculizumab – and the drug has now been recommended by NICE. Eculizumab has since been proven to prevent kidney failure in patients with recent onset aHUS and enables those with failed kidneys to have a transplant.
This year, with transplantation a strategic focus for the charity, we established the UK Organ Donation and Transplantation Research Network, in partnership with the British Transplantation Society and NHS Blood & Transplant. By consolidating resources, networks and research activities, it will provide a strong platform to accelerate research and innovation and improve the transplant outcomes for every patient.
In February we had our first network meeting in London, and the final touches were being made, before we launched the network at the British Transplantation Society Congress in Belfast in March.
In March, we joined the biggest ever UK campaign for World Kidney Day by teaming up with fellow kidney charities and professional organisations to spread awareness of kidneys and the vital role they play in our bodies.
Our bigger and bolder campaign – highlighting the fact kidneys are the BIG topic that everyone’s ignoring – showed that the kidneys are the unsung heroes inside our bodies. These small organs have a huge role to play in keeping us healthy, but when things go wrong, the consequences can be devastating.
Our campaign raised awareness to help people look after their kidneys and encouraged those at risk to get their kidneys checked.
The campaign came the week before the pandemic took hold and the first lockdown began. Everyone working at the charity began working from home – but we didn’t know this would continue for months.
Scottish kidney researcher Dr Laura Denby and her colleagues discovered a small piece of genetic material could hold the key to earlier diagnosis and better treatment of high blood pressure – a significant cause of chronic kidney disease.
The exciting new study, led by the University of Glasgow and part-funded by us, looked at how to identify people whose blood vessels are at risk of damage sooner, which could help to develop new treatments, and whether preventing high blood pressure could ultimately help reduce chronic kidney disease and prevent kidney failure.
Lockdown presented challenges to our fundraising. With events cancelled, including the London Marathon being postponed until October, our supporters began to embrace raising money for us in a virtual way.
Now based in Edinburgh, senior research fellow Laura joined dozens of other fundraisers taking part in the 2.6 Challenge, spearheaded by the organisers of the London Marathon as a way of helping charities continue to raise money after the annual event was cancelled for the first time in its history. Laura ran an incredible 2.62 miles every day for 26 days and raised more than £800 for our life-saving research!
From skipping, squatting and hula hooping to cycling, running and even holding a magic show on social media, our supporters pulled out all the stops to get creative and complete a challenge including the numbers 2 and 6. We absolutely loved seeing all the interesting ideas people came up with to raise money!
May saw our ambassador Andy Cole launch the Andy Cole Fund to advance research into kidney disease, to transform kidney transplants, and help patients with their mental health and wellbeing.
This exciting news came the same month we launched our partnership with the charity Centre for Mental Health, to better understand the links between mental health and physical wellbeing for kidney patients and identify the best ways to support them.
The former England star was inspired to set up the Andy Cole Fund with us after his kidneys failed in 2015. He has spent the last five years coming to terms with a ‘new normal’ and is passionate about helping others.
“I’ve been mentally strong enough to play football, but this is the toughest battle I’ve ever had to deal with,” said Andy. “I used to visit the doctor and make out I was fit and strong because I didn’t want to admit how hard it was, yet mentally, I was dying inside. I don’t want anyone to end up struggling like I did.”
Mental health and wellbeing is a core focus of the Andy Cole Fund, which aims to raise at least £0.5 million over the next three years.
Kidney Research UK and Centre for Mental Health pledged to work together to better understand the links between mental health and kidney disease, to work out how we can improve treatment for those in need, and to promote our findings to ensure mental health needs of kidney patients are addressed by others.
In June, despite our fundraising taking a huge hit thanks to the pandemic, we were delighted to award research funding to some fantastic scientists around the country.
We funded a variety of new Kids Kidney Research grant awards. The projects were wide ranging, from understanding how gene faults cause bladder problems in children, working out how to predict which children with IgA vasculitis will develop kidney disease and if we can stop it, to designing bespoke and safer dialysis equipment for children. Other projects are working to identify new biomarkers that ‘flag’ a kidney disease called nephrotic syndrome, and working out how to capture kidney cells from wee so scientists can better study how well kidneys are working.
In a year when the pandemic meant we had to stop funding many research grants because our income had fallen, this was a significant moment for us. It enabled us to fulfil our pledge to fund a minimum of £0.5 million every year into paediatric research.
In July, we were delighted to launch Kidney Beam – a new free, online service for the kidney community, to help kidney patients look after their physical health and wellbeing in their own homes.
Our funding enabled Dr Sharlene Greenwood from King’s College London and the team from Beam to test the platform over the next few months. In November, we agreed to fund this project for another year – which means kidney patients continue to have access to this great resource. It will also be a platform for researchers to use.
The platform was originally developed to help kidney patients who were shielding during the pandemic and unable to attend a gym or other class, but will also be enormously useful post-pandemic. The new platform offers a range of live or recorded classes led by NHS kidney health professionals, and other qualified instructors including people living with kidney disease, initially including yoga, pilates, high intensity training (HIIT), and other online sessions.
It’s not too late to join Kidney Beam! Sign up here.
In August we shared an exciting piece of transplantation research with our supporters, and it really resonated, with many people liking and sharing the story on our social media channels.
The research we funded was looking at how kidneys could be made more suitable for transplant - and built on ongoing research led by Professor Mike Nicholson. Researchers found that it could be possible to revive and recondition kidneys for transplant that might otherwise be discarded.
Kidney researcher Dr Emily Thompson and the team at Newcastle University are the first to use normothermic machine perfusion to deliver stem cells directly into a human kidney before they are transplanted.
It means more kidneys could be made more suitable for transplant, fewer kidneys are wasted, more people are treated and transplanted organs last longer.
Another cause for celebration this month was hitting 6,000 charity followers on Instagram!
During Organ Donation Week in September, and following the law change in England in May this year, we joined the call to encourage everyone to talk to their loved ones about organ donation. We urged people to make sure their loved ones are aware of their wishes to help increase the number of people whose lives can be saved or transformed by an organ transplant.
Knowing what your relative wishes after they die helps families with their decision around organ donation at what is often a difficult time.
Our chief executive Sandra Currie said: “Sadly, many life-saving opportunities are lost every year because families don’t know if their loved one wanted to be a donor or not. Please don’t wait to share your wishes with your loved ones, speak to your family about organ donation today.”
This year the charity team in Scotland have been busy spreading the word about organ donation ahead of the forthcoming law change there in 2021.
We found new ways of sharing information and organ donation and kidney disease awareness in South Asian communities in Scotland. Our peer educators usually visit mosques, temples and gurdwaras to share information and engage with communities. Instead, we adopted virtual, online webinar services via Zoom to continue raising awareness.
Working closely with Scottish faith leaders, community members and external stakeholders our team have been hosting webinars to discuss kidney health and disease and organ donation within South Asian communities. These are available to view.
September was also Polycystic Kidney Disease (PKD) Awareness Month – and this year saw an exciting development when we launched our joint partnership with the PKD Charity to progress research into this condition.
Our vision is to improve the health and quality of life of people affected by PKD. Together, we want to significantly improve PKD patient outcomes over the next ten years, through a joint research programme.
Dozens of our supporters braved the wet weather at the start of the month as this year’s London Marathon went virtual for the first time.
Our solo superstars took to the streets in their communities to fly the flag for #TeamKidney for the 40th anniversary of the iconic event. We were inspired and humbled by their determination to continue, despite the circumstances, and raise much-needed funds to help keep research going.
Heartened by all of this support, we were able to kick-start our research funding, in a new and different way. Thanks to our partnership with the Stoneygate Trust, we asked researchers to send us their proposals for new projects, that fit the theme of transforming treatments. We have had some brilliant proposals come through, and we are now looking forward to reviewing the full applications in the new year. This was a big step for us as it felt like we were getting back on track.
October also saw our national World Kidney Day campaign, which we held in March, shortlisted for prestigious awards. The work was commended by the Third Sector Awards, which recognise the achievements of charities, voluntary organisations and social enterprises.
In November, scientists at the University of Oxford published an important discovery – why obesity can increase the chances of someone developing kidney disease.
This new study, funded by us and the Medical Research Council through a joint David Kerr fellowship and published in the Journal of the American Society of Nephrology, 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.
By studying almost 300,000 sets of DNA samples and health information in the UK Biobank, the team searched almost 1,000 gene variations that predispose people to a higher body mass index (BMI) or tummy fat and make them more likely to become overweight or obese.
Professor Will Herrington, from the University of Oxford, who co-led the research explains: “In this study, we found these genetic variants were 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.”
They discovered that for most cases of obesity-associated kidney disease, diabetes and blood pressure were the driving causes. This is good news, because we already know a lot about these conditions and we have treatments for them – and preventing them may stop many cases of kidney disease from developing in the first place.
November also saw the publication of the results of a survey of young kidney patients’ experiences during the first Covid-19 lockdown. We jointly funded the survey to ensure young patients’ voices were heard during the unprecedented global health crisis. Healthcare teams were encouraged to act upon the series of recommendations that were made as a result, including mental health support and better access to medical teams.
December saw us build the numbers of people involved in our work – with several patients and people affected by kidney disease joining our volunteer team. We are really looking forward to working with them in 2021.
Our amazing supporters joined our Step into Christmas challenge to raise thousands for life-saving kidney research. The challenge was to walk, run, skip or hop 12,000 steps a day for 12 days during December.
Their incredible support has been a wonderful end to a difficult year.
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