Meet our lay advisory group
Our lay advisory group (LAG) drive and strengthen patient and public involvement within Kidney Research UK and influence change externally. They ensure kidney patients are a key aspect in all of our work.
Lay advisory group lead
"I have polycystic kidney disease and had a kidney transplant back in 2006, with a kidney donated by my sister. I have also had both of my polycystic kidneys removed, in an operation called a bilateral nephrectomy, which was major surgery and took a while to recover from.
I’ve had a varied career, from cytogenetics research to tax accounting, antenatal teaching to charity management. For many years I have worked on improving people’s experience of health care particularly in maternity and also in kidney health, with a keen interest in health data.
As Lay Advisory Group Lead, I work closely with the group and with the public and patient involvement staff team to identify and take up opportunities to embed patient experiences and views wherever we can, into all aspects of the charity’s work, such as in research funding decisions, policy work and communications with the public."
Lay advisory group deputy lead
"I was diagnosed with IgA Nephropathy in my early thirties and the diagnosis was a real shock as someone who was still playing rugby and football. Just a few years later the kidney disease and the failing kidneys were having a devastating impact on her life. I especially felt this in my much-loved career in sports development where I held several senior roles in Sport England, Great Britain Wheelchair Rugby and was the first Director of Sport at Stonewall. I was placed on the transplant list mid COVID-19 pandemic and received a call at 9.30pm on New Year’s Eve 2020. On New Year’s Day 2021 I underwent a ‘complex’ transplant receiving a whole horseshoe kidney, for which I will be forever grateful.
"Now the Director of Innovation and Business Development at a disability sport charity, I am passionate about inclusion and enabling the sharing of lived experience to have a key role in driving change. I am keen to use my role on the group to raise the awareness of kidney disease and transplantation as well as ensuring that research into kidney disease can be recognised fully for the life-saving role it plays."
Lay advisory group deputy lead
"My name is Kolawole Ponnle. I am a Civil Servant and married to a General Practitioner with a three-year-old son. I was diagnosed with chronic kidney disease (CKD) in 2007 and started haemodialysis in the same year. It was a challenge adjusting to life with dialysis, but specialised support by the consultant, nurses, and charities like Kidney Research UK, it got a lot easier over a very short period and my life is as close to normal as it can be living with CKD.
"It is a rare opportunity and honour to be invited to join Kidney Research UK Lay Advisory Group. I can now render my personal and acquired professional skills in support of the exemplary work carried out by kidney Research UK to improve treatment and make the lives of CKD patients better."
"I have 20+ years experience in leading, designing and executing large-scale change and transformation programmes. A mother of two sons, I am adept at balancing career and family responsibilities. I have a keen interest in kidney disease and understanding how the care provision continues to evolve to meet the needs of patients. My father suffered from chronic kidney disease and was on peritoneal dialysis treatment for 5+ years. I have witnessed first-hand the impact that this treatment has on the whole family and beyond.
"As a lay advisory member, I am looking to apply my professional skills and practical experience to support the transforming dialysis care initiatives."
Bio coming soon!
"I'm Richard, a lifelong kidney patient, born with Alport Syndrome a few decades ago! The exact illness was identified when I was 5 or 6. I have been extremely lucky to have received living donor transplants, from both of my parents following kidney failure. These were in 1997 and 2004 but I have had experienced dialysis along the journey.
"I am an active member of the Transplant Sport community, competing for my team, Guys Hospital at the British Transplant Games, hoping to qualify to represent in Australia in 2023.
"I am very excited to be part of this group, which has a diverse background of kidney experiences. I'd like to become more involved in promoting the fantastic work that Kidney Research UK do and am very keen to directly represent kidney patients and help shape the patient journey too!"
Bio coming soon!
"I’m delighted to be joining the Lay Advisory Group. My youngest son has chronic kidney disease which has led to complex health needs, he has received both peritoneal dialysis and haemodialysis whilst waiting for a transplant.
"His older brother has ASD, ADHD and Tourette syndrome so I have a vested interest in advocating for improvements in paediatric mental health support. I am passionate about promoting access to educational materials for families and carers and have a strong desire to see continued improvement in paediatric care, including ascertaining and resolving inequalities in care and transplantation.
"I believe that all research, where appropriate, should be mindful and inclusive of the younger generation. I have a background in property and finance, two demanding dogs and one, slightly less demanding husband! Much of my spare time is devoted to supporting other families who are coming to terms with kidney disease and pre & post-transplant related matters."
"My son was diagnosed with hydronephrosis during pregnancy in 2020. This led us to becoming patients of Evelina Children Hospital in London where he was diagnosed with posterior urethral valves, causing reflux and damage to his bladder and therefore leading to him having chronic kidney disease.
"I am a parent seeking who is always looking for information and connections, to learn how best to support our son in managing his health condition. I bring experience as full-time working mum for a global, nonprofit, humanitarian aid organization that supports emergency medical services, with experience in programming, operations as well as grants and contracts. I am delighted to join the Lay advisory group to support the organisation."
"My name is Dale and I’m four years post transplant having been diagnosed in 2012 with IgAN. I was working abroad when I first became ill and managed the condition for a further four years before crash landing into end stage kidney failure at the end of 2016 going straight on to haemodialysis. I received a transplant from my mum in 2017 and everything is going very well now.
I have a pretty full-on work schedule and work in the drinks business. I’ve been involved with Kidney Research UK since 2013 when I climbed Mount Kilimanjaro for the charity and so far, have contributed to ample fund-raising initiatives. I’m honoured to be part of the Lay Advisory Group and look to bring lots of my personal experience and skills to the role and looking forward to working with the team and beyond."
"I am delighted to join the new Kidney Lay Advisory Group and look forward to being involved in the Grants Commitee and spreading the news of good work of kidney Research.
"I was diagnosed with hydronephrosis in my teenage years and neurogenic bladder, for which I have done the ISC technique successfully for over 30 years. My kidneys are now at stage CKD 4-5 and I am monitored by the Preston Team and am on the national kidney transplant register. I am happily married, work for the NHS and live on the Fylde Coast.
"I enjoy being by the sea, playing the organ, swimming, Zumba and when permitted listening and dancing to the sound of the Mighty Wurlitzer in Blackpool Tower Ballroom."
"My name is Lauren, I am very honoured to be part of the lay advisory group which champions the perspective of those with lived experience, maximising the voice of the patient/carer. My wonderful mum had lived with kidney disease from a young age as a result of vesicoureteral reflux, and in 2016, I was a live kidney donor for her at the age of 19. Donation has changed my mum’s life completely and I am looking forward to sharing my experience of being a young donor and our journey as a family.
"Even though I was a live donor, I am particularly passionate maximising the voice of those living with kidney disease. I have 5+ year’s experience within the health and social care sector, as a registered social worker and now specialise in safeguarding. I am a wife, avid baker and reader, who loves spending time with family and friends."
"I am excited and honoured to be part of this important group representing the patient/carer perspective. I have relied on and supported Kidney Research UK for more than 20 years now – whilst supporting my daughter, both practically and emotionally, since she was diagnosed with CKD at aged four.
"My own career journey comprises (in chronological order): lawyer; academic and teacher; Director of knowledge, learning and service quality for an international law firm; external change management consultant; and the last fourteen years as a leadership coach. I have developed along the way a fascination with science and scientific method that complements my experience in legal and management research and research design.
"Now with more time to call my own, I want to do whatever I can to help deliver on our collective goal that ‘kidney disease ends here’."