PKD Charity & Kidney Research UK research partnership
PKD Charity & Kidney Research UK research partnership
Maegan Smith (Mae) knows only too well the impact PKD can have. Mae, her dad Wayne and sister Stephanie have autosomal dominant PKD. Wayne lost his own father to kidney disease when he was nine years old. When Wayne’s own kidneys failed, he received gruelling dialysis three times a week for two years – until he recently received a kidney transplant from an anonymous living donor. Mae and Stephanie, both in their twenties, go to hospital regularly to have their kidney function checked.
Mae explains: “Most days I don’t think about my kidney disease because I have virtually no symptoms. But some days my mind wanders to my future and the reality hits me smack in the face like a truck. I’m hopeful that before our kidneys fail, new treatments will be available to control our condition. My biggest hope is that if we have our own children one day, they won’t have to live with the same fear of kidney disease that my family has for generations.”
Tess Harris, CEO of the PKD Charity, said: "I am very excited by this collaboration, which is the result of discussions over several years between our two charities. I inherited ADPKD, along with my three siblings, from my father. I have witnessed the premature death of my father and a sister and have recently had a kidney transplant following a period on dialysis. I have an affected niece and nephew.
Over my 15 years with the PKDC, as a trustee and now CEO, I have had daily contact with PKD patients and family members. I have heard their often tragic and painful stories, their battles with the stress of diagnosis and the prospect of an inevitable future blighted by kidney failure or massive cystic livers."
She continues: “Research is critical to improving their lives. As a small charity, we've been able to fund a few important projects at early research stages, including a biobank of kidney tissue donated by PKD patients and families. Kidney Research UK has been a significant funder of PKD research over 30 years. Yet, the amount spent on PKD research is miniscule compared with amounts spent on cancer, whilst the burden and cost of healthcare for PKD patients and the social burden and costs on their families is disproportionately high. Coming together with Kidney Research UK means we can make research happen much faster.”
Sandra Currie, CEO of Kidney Research UK, said: “We are delighted to be launching our partnership with PKD Charity. The coronavirus pandemic has delayed our launch plans by around six months, and it has certainly challenged our plans to combine forces to raise the money we need. But the pandemic has highlighted the need and urgency for this research, because people living with PKD are more at risk of COVID-19. Now, we are even more determined to invest in more research into this significant area of kidney disease.”
Mae comments: “This joint research programme is a huge step forward for people like me living with PKD – it will hopefully drive some incredible research into this condition forward and give hope to so many. Living with this genetic condition is a huge burden with a turbulent future ahead. Having been part of the discussions from the beginning, I can see passion and excitement from both Kidney Research UK and PKD Charity, and I really hope the research will find a breakthrough that changes the future for people living with PKD and our children.”
About Kidney Research UK
As the largest kidney research charity in the UK, nothing is going to stop us in our urgent mission to end kidney disease. We’re here to be heard, to make a difference, to change the future. This is a disease that ruins and destroys lives. It must be stopped.
Over the past 60 years, our research has made an impact. But kidney failure is rising, as are the factors contributing to it, such as diabetes and obesity. Today, we are more essential than ever.
Kidney disease affects three million people in the UK, treatments can be gruelling and currently there is no cure. Only research will end this and nobody can do it but us.
About the PKD Charity
Formed in 2000 by a PKD patient and a kidney doctor, the PKD Charity supports those affected by PKD, their families and carers. We raise awareness and fund research. Our support services blend educational events held around the UK or on web platforms with personalised and peer support – online, face-to-face and by phone.
We fund the PKD Biobank of donated tissue at the UCL Centre for Nephrology Royal Free – which has provided over 2,500 samples and methods to over 90 projects in the UK – and have supported the development of the UK Rare Renal Registry RaDaR.
Our patient advocacy efforts have contributed to global guidelines and consensus publications which have helped improved the care of PKD children and adults worldwide.