Tony Thornburn OBE (Chair)

Tony served in the Armed Forces for 35 years, during which time he notes that he was fortunate to have benefited from a wide variety of appointments and roles, before becoming a Lecturer in Systems Engineering at Cranfield University, where he remains a Visiting Fellow.  He is currently involved with the STEM initiative in schools, the British Standards Institute, a Systems Thinking Special Interest Group and a Human Factors Integration Working Group. He is a Fellow of both the Chartered Management Institute and the Institute of Leadership and Management. A keen musician, he sings with not only his local Bath Bach Choir, near his home in Frome, but also whenever suitable opportunities arise. Tony is married to Kathy and they have two children, Daniel and Hannah, and seven grandchildren.

Tony has been a member of Behçet’s UK (formerly Behçet’s Syndrome Society) since 2006 when his daughter, by chance, was eventually diagnosed with Behçet’s. He feels immensely privileged to have been appointed Chair to such a supportive organisation, and aims to assist in building on all the hard work that has gone before to promote routine awareness of Behçet’s and achieve better coherence between patients and research, and all that should be in place to support them: the ever-expanding network in the medical profession, across and outside the NHS, within the rare diseases community both nationally and internationally, and among the science and research community to name but a few – as he puts it, “a true systems challenge”.

Catherine O’Hara (Vice-Chair)

Some of you may already know Catherine as the support group leader for patients with Behçet’s in Scotland. Catherine has Behçet’s herself so she is all too aware of the difficulties around diagnosis and being referred to a number of specialists, who often don’t talk to one another. She hopes that her appointment to the Board will allow her to raise greater awareness of the condition both in Scotland and the rest of the UK and to work towards breaking down some of the barriers for patients in terms of diagnosis, medication and equity of care and in giving patients a voice.

She has worked as a teacher, development officer, consultant and latterly a lecturer in Teacher Education at Dundee University.  She hopes to use her experience of research to contribute to help the Society’s Research Strategy which is so important for all those with Behçet’s.

Since retiring she has been involved in charity work both for Behçet’s UK and Skin Conditions Campaign Scotland, an umbrella organisation supporting all those with skin diseases. This has given her a good insight into how a charity functions and she hopes to bring this experience to her new role.

Catherine lives in the picturesque village of Kinnesswood with her husband, and she has a married daughter and a three-year-old grand-daughter. Her interests include line-dancing, art, crochet and genealogy.

Alan Lane (Hon. Treasurer)

Before taking slightly early “retirement”, Alan worked for 36 years in comprehensive schools, starting as a teacher of mathematics and computer studies and ending up as head of a large multicultural secondary school in Oxford. After that, he had a part-time role in a project to introduce new financial software into Oxfordshire schools and for the last few years has been a part-time consultant, supporting a number of schools and academy trusts with their finance and governance. 

Alan is also the Finance Director of Behçet’s Patient Centres, the charitable company set up by Behçet’s UK to manage the three centres of excellence for the treatment of patients with this syndrome.   He has been a school governor, Chair of a multi-academy trust and General Secretary of the Oxford Bach Choir, in which he continues to sing regularly.

Judi Scott (Hon. Secretary)

Judi joined the Society in the early 1990s following the diagnosis of her daughter Joanna when she was 7. She has seen the Society flourish to become the hugely supportive organisation that it is today, and she is thrilled to be a trustee.

Before becoming a trustee, Judi helped out by sending welcome packs to new members and information sheets to anyone who requests them following a call to the helpline.

Judi is a retired teacher who worked in secondary and special needs schools. She now volunteers with the National Trust at Canons Ashby House and Marie Curie Cancer Care. She enjoys reading, art and crafts, walking, gardening and history.

She is very keen to offer all the help she can to the Society.

Rachael Humphreys

Rachael was diagnosed with Behçet’s in 2004 after becoming suddenly unwell in early 2003, just 6 months after graduating in theatre acting and moving to Manchester. She got married in 2005, moved to Cardiff in 2007, started a paediatric nursing degree, and had her first baby, Joseff, in 2013. After maternity leave, Rachael began working on a public health campaign that aims to raise awareness of the signs and symptoms of type 1 diabetes in children; it is her ambition to become a paediatric diabetes specialist nurse.

Rachael has actively represented patients from Wales with Behçet’s by attending Rare Disease Day and working alongside Genetic Alliance UK attending forums to discuss and feedback on the Plan for Rare Diseases. She also set up the Support Group for South Wales in 2013 and currently arranges meetings twice a year, around September and March. Rachael aims to contribute to the development of the Society with her enthusiasm, experience and knowledge. She feels very privileged to represent the patients of Wales however, and wherever, she can.

Amanda Moseley

Amanda Moseley has been a solicitor dealing with Family Law for the past 36 years. She was born in Oxford but has lived in Derby for the past 15 years, where she also runs a voluntary Child Contact Centre. Amanda first read about Behçet’s 14 years ago when she was looking for explanations for her 9-year-old daughter’s mouth ulcers. She had no idea how familiar that peculiar name was going to be in her future.

Ruth was 13 when she was diagnosed, and died of pancreatic problems when she was 18. The intervening years were full of the usual rounds of disbelief and drugs that eventually failed. Anyone who remembers Ruth will know that she was a Behçet’s Warrior who gave support and shared information throughout her teenage years – and fully intended to Chair the Society as soon as she was old enough! Amanda feels that the least she can do is to carry on the fight for Ruth and do her best to help in any way that she can.

Mark Friston

Mark Friston is a barrister and former doctor. He was first diagnosed in 1994; he underwent a successful bone marrow transplant in 2016 under the supervision of Prof Moots (Liverpool Centre of Excellence). He is committed to ensuring equal access to high-quality medical care for all patients in the UK.

Fionnuala McKinley

Neil Williams

Neil has worked in various commercially facing roles for over 20 years. After a lengthy period, Neil was finally diagnosed with Behçet’s in 2019. He is a keen fundraiser and aims to make a difference to the lives of fellow patients. 

Neil spends his spare time with his wife Jen, son Lucas and wider family, and is a fair-weather cycler and golfer.