The PBC Foundation is the only UK organisation exclusively dedicated to providing support and information to those affected by PBC
Collette Thain MBE
Collette Thain MBE is the CEO of the PBC Foundation. Having been diagnosed with PBC in 1994, I set about trying to inform myself about my condition, its implications for my life and how best I could help myself. Eventually, I found the PBC Patient Support Group which was enormously helpful, albeit limited: there were patients there but no formally written information which was known to be current or even accurate. This led me to form the PBC Foundation in 1996 and watched it grow into one of the world's leading PBC organisations. I have had many proud moments over the years, from accepting my MBE on behalf of "those suffering from PBC" to seeing the completion of our first PBC Compendium, "Living with PBC". I still love my work as CEO, keeping us on an even keel financially, developing new services, keeping in touch with members and knowing that no two days are ever the same.
David Campbell has been on the Board of the Foundation since 2011. He is a solicitor in Edinburgh where he lives with his wife and son. David enjoys music and theatre and the great outdoors.
Eileen, who lives in Edinburgh, has many years experience of working in the private, public and voluntary sectors. She has been a Trustee of the Foundation since 2005 was formerly the Chairman.
I was diagnosed in 1996 with PBC, I felt my world had been taken from under me, I was 38 years old, a mother of a 13 year old daughter and married to a great man. I have a brilliant consultant who explained everything to me and my husband but most of what he said went over my head, all I heard was liver disease. He then handed a leaflet and a phone number to my husband and said that this lady has started up a group and to contact her.
When we got home I was in total shock and my husband phoned the number and he spoke to the lady, she asked to speak to me but at that time I didn't want to, however, he just thrust the phone into my hand. It was the best thing I ever did as the lady at the end of the phone was Collette and she has become a great friend. I was doing well but in March 2004 I had to have a liver transplant. In 2006 became a volunteer for the Foundation for the Hampshire area with a very dear friend Jo Elliot who sadly passed away last year with cancer. I lost my husband in 2009 in tragic circumstances and if it wasn't for my family, friends and especially the PBC Foundation then I think I would have given up.
I love being a volunteer helping members to cope with their PBC and also showing them that there is life after a transplant and that there is always someone at the end of the phone. This year I was invited to become a Trustee of the Foundation which I was delighted to accept. They are a great bunch of people who are totally dedicated to keeping the Foundation going (money is always tight) and to doing everything possible to raise the profile of PBC and to support every single person diagnosed with this condition.
In 2107 I had to have a second liver transplant and I am very doing well. I have a rescue dog which needs walking every day. This gets me out and about and helps with my energy levels. It’s lovely chatting with other dog walkers too. My two grandchildren keep me on my toes – they and my daughter are a complete joy to me and I am so very proud of them.
James Neuberger is an Honorary Consultant Physician at the Liver Unit, Queen Elizabeth Hospital Birmingham and Associate Medical Director at Organ Donation and Transplantation in NHS Blood and Transplant. He qualified from Oxford and trained in London, Leeds and Birmingham. He has had a long-term interest in liver disease, especially Primary Biliary Cirrhosis, and liver transplantation. He has published extensively on liver disease.
Dr George Mells
Dr George Mells is a Consultant Hepatologist at Cambridge University Hospitals NHS Foundation Trust and co-investigator in UK-PBC, which is a collaborative project aimed at the development of precision medicine for PBC.
Lynn lives in Cheshire and became a member of the PBC Foundation in 2000 shortly after being diagnosed, becoming a volunteer a few years later in 2003.
Lynn is retired after a career as a civil servant which has given her the experience and skills and confidence necessary to contribute fully as a trustee of the foundation.
Lynn has witnessed the growth of the foundation and recognises the knowledge and wide experience of the board members will ensure it continues to do so. She feels her main contribution should focus on giving a members perspective on how decisions made by the board impact on the support given.
I was diagnosed with PBC in 2000 and joined the PBC Foundation soon after. I have been a volunteer for the past four years and held regular meetings in central London which are always well attended. I also incorporated Hertfordshire into my area last year. I became a trustee of the PBC Foundation in July 2019.
Gareth Mackie has worked in a variety of media and communications roles for the past 20 years. A journalist by training, he is a former business editor of the Edinburgh Evening News and online business reporter at The Scotsman. He has also worked in the media relations at Halifax and is now content specialist at LendingCrowd, a peer-to-peer lending platform based in Edinburgh.
Louise has worked in the IT industry for over 10 years and has supported the PBC Foundation in this area of operation for all of this time. She is a firm friend of the Foundation and hopes her knowledge in the technology and social media field can help increase awareness of the wonderful mission the PBC Foundation provides globally to its members.