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.
As Head of Education and Development of the Foundation, Robert has a key role in developing the Foundation’s services, outreach and impact upon the world of PBC. A powerful patient advocate, he was one of the leaders in the recent name-change initiative and is perceived to be a "key opinion leader" internationally on the subject of PBC. As a passionate speaker, he has presented to audiences in Japan, Israel, Canada, USA, Russia and many countries around Europe on PBC, AILD and Liver Disease in general. His main role of information provider means he is in regular contact with patients and their families, clinicians, academics, pharma, other patient advocates and the general public. He has led the Foundation’s education programme, hosting self-management sessions, development session, and webinars helping those affected by PBC to improve their quality of life. His mother was diagnosed with PBC in 1994 and was an integral part of the Foundation even before he joined in 2003. He saw with his own eyes the power of information- both diagnosis and finding the right support- and witnessed his mother’s own reaction to both. This is his motivation today and why he believes every single person affected by PBC has the right to free, accurate and up-to-date information. He is proud to serve in the small, focused and successful team that is the PBC Foundation.
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!