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.
Chris was instrumental in the launch of the Foundation in 1996 after his mother was diagnosed with PBC. Life as a patient was very different back then. Doctors were not attuned, as they would not expect to see PBC in their lifetime. There was no internet, not even a leaflet, therefore it was almost impossible to access information or support.
Chris saw the importance of addressing these gaps in knowledge and care for those affected by PBC, as well as the need to develop treatments. His shared visions and dedication to these important causes has been crucial in the development and delivery of our services and collaborations over the years. He has remained a stalwart volunteer for 25 years: managing projects, fundraising, and creating strategies with the Foundation before being appointed as Head of Education and Development in 2021.
One of Chris’ early successes as a volunteer was his involvement in the world-renowned PBC 40. Raising Big Lottery grant-funding to resource this project, he spearheaded the launch of this initiative in 1999, bringing the importance of quality of life in PBC patient care to the forefront.
As Head of Education and Development, Chris plays a crucial part in developing the Foundation’s services, outreach and impact upon the world of PBC. His multi-discipline role includes providing information, support and advocacy to those affected by PBC, with a particular focus on addressing the unmet needs within patient care, treatment and quality of life.
Chris has patients at the forefront of all his endeavours as he engages with the world of PBC, which is evident in his collaborations with its many frontiers and communities. Chris strives to connect patients and their families, clinicians, academics, pharmaceuticals, researchers, other patient advocates and the general public to create and develop opportunities to enhance the experience of living with PBC.
When asked how he felt about his new appointment, Chris said “After 25 years of supporting this crucial cause, to be working full time on what, for me, is such a passionate subject feels like coming home.”
Alan is The PBC Foundation's administrative cornerstone! Joining the Foundation as Administrator in February 2009, he works incredibly hard to ensure that everything runs smoothly within the office, and acts as first point of contact with our 10,000 members worldwide, and the public. Other duties include distributing membership packs and information on PBC and the Foundation, dealing with accounts and payments, organising conferences and collating information for “The Bear Facts”. He is also responsible for delegating tasks to our office volunteers, and ensuring that they are well looked after. He loves the outdoors, and was instrumental in the organising of our PBC day climb up Ben Macdui.
Linda commenced work with the PBC Foundation in January 2013 as Liaison Officer working 20-25 hours per week. Part of her role is liaising with our very hard working volunteers and supporting them in their work looking after local members. Linda keeps in regular contact with our Volunteers for anything they may need, even if that is just a chat. She works closely with Robert, our Development Officer, managing his diary, arranging his travel and hotel accommodation for the work he carries out with the Volunteers and members, organising venues for PMA seminars and Nurses in Practice events up and down the country. Always happy to be involved in fund raising events, Linda together with Alan, Rebecca and our member Roy Talbot participated in our Brew with a View, climbing the second highest mountain in the UK - Ben Macdui for National PBC Day. Linda loves walking but even she had to admit that this was on a different level from what she is used to! However, hers was an enormous sense of achievement to climb to the top, not to mention coming back down!
Jacqueline joined the PBC foundation in August 2019 as the Trusts and Grants officer.
After ten years in commercial banking she is excited for the new role within the charity sector.
Her main focus will be to continue to source funding and grants, to ensure the Foundation can continue to provide its invaluable services to its members.