The chair of our board of trustees is Mairi Everard:
“I have been a trustee of CLDF since 2005. A family member’s son was born with biliary atresia and had one of the early transplants to treat the condition. I have watched him grow up, dealing with the challenges he and his family have faced, and hope that this has helped me in my role with the charity.
Professionally I have worked as a social worker in child care, child protection, and with children with disabilities, and their families. I have also managed family support services within several charities offering services to children with many disabilities, and have an understanding of the difficulties families and young people face, and the role charities can play in helping them.”
Ms Kate Dinwiddy
I joined the board of CLDF because I believe in the charity’s mission and vision and thought I would be able to offer some of my own experiences from managing a small organisation.
I’m Chief Executive of the British Association of Perinatal Medicine, a professional association for people that work in perinatal care. There is some crossover with CLDF as some liver conditions are diagnosed in the neonatal period. It also means I have a better understanding of the health care system for children and young people and the role charities play in funding research and support. I was recently involved in helping to recruit the new Chief Executive for CLDF.
My first interaction with CLDF started in late 2013 when my baby daughter, Lily, was diagnosed with portal hypertension and oesophageal varices. This ultimately led to her having a liver transplant in May 2014 when she was only 14 months old. Shortly after her transplant she developed Post-Transplant Lymphoproliferative Disease (PTLD) which resulted in a fairly long stay in Leeds General Infirmary. During that time, CLDF were there for us, providing leaflets explaining various complicated issues in easy to understand terms, or even just having someone visit the ward for a comforting chat.
Lily is now a thriving young girl who loves life, and I wanted to get involved with CLDF to give back something to an organisation that provided invaluable support when we needed it.
I’m Director of Commercial Development at QTS, a commercial body in the NHS. I’ve previously worked in Cabinet Office and at the Department of Health and held numerous board positions.
My son, Oscar, was diagnosed with biliary atresia at 20 days old and I’ve been in contact with the Foundation ever since. I’ve therefore welcomed the opportunity to put all my board experience to use for a cause which is so important to me. I’m currently chair of CLDF’s Finance and Fundraising Committees.
Professor James Neuberger
I was a consultant hepatologist at Queen Elizabeth Hospital in Birmingham and was also Professor of Medicine at University of Birmingham and Associate Medical Director at NHS Blood and Transplant. I’m now retired from clinical practice but having spent nearly half a century working with adults with liver disease, I’ve seen the huge advances made in the diagnosis and treatment over that time. I’m also all too aware of the huge impact which chronic liver disease has on the individual, their family and their lifestyle, especially for young people as they move into adulthood. So I appreciate the great benefit that early and continued expert support and information has on the short and long term outcomes of those with liver disease, and am keen to use my experience to enhance this in any way I can.
Phil Orme – Vice Chair
I’ve been familiar with the charity’s work for some time because I have known Mairi Everard for many years and have always taken an interest in her role here, so I jumped at the chance to become a CLDF trustee. I was looking for an opportunity to give back and, with grandchildren of my own, I can really appreciate the impact that a diagnosis of childhood liver disease has on the whole family.
I’m an accountant by profession and the owner of a business which operates tug- boats in the Middle East. I’m also director of an IT company so can bring my knowledge of the finance, business and IT sectors to the CLDF board.
I was diagnosed with biliary atresia shortly after birth. Thanks to a Kasai procedure, I had a very normal life, got married, and became a mum twice, which wasn’t without liver related complications but immensely worth it. My liver started to fail in 2019 and in December of that year, I had a transplant. Both my family and I have been supported by CLDF; I have fundraised for them and continue to be a champion for this special charity. As a trustee, I strive to ensure that young people with liver disease have a voice. Having not met anyone in the same boat as me until I was 22, I understand how important it is to share my story as well as making sure parents and patients are supported throughout their journey.