You might have noticed that there have been some recent changes to the board of trustees. Here is an overview of what’s happened.

Firstly, we’d like to say goodbye to Colleen Addicott, who is stepping down after 10 years. Colleen has been a great help to us, using her experience in occupational psychology to make the AKU Society run more smoothly. We wish her the best of luck with her future career.

Joining us is Duncan Batty. Duncan studied Chemistry at Imperial College London and Kingston University before taking a PhD at University College London in synthetic organic chemistry. Following post-doctoral fellowships at the University of Illinois, Chicago, and the Université Paris-Sud, Duncan spent most of his career in pharmaceutical research with UCB Celltech.

Duncan was diagnosed with alkaptonuria as a toddler. He has one younger brother with AKU, and three siblings who are unaffected. He has been receiving treatment for his condition since 1996 and has been taking nitisinone – a drug believed to treat AKU – since 2008. Duncan’s involvement with the AKU Society has lasted over a decade. As well as a new trustee, he is a scientific advisor for the DevelopAKUre consortium, which we set up to run an international clinical trial into nitisinone.

We are also joined by Tony Esmond. Tony grew up in Pembroke, then moved to Carmarthen to train as a registered mental nurse. After qualifying, Tony stayed in Carmarthen for seven years. He worked as a staff nurse, charge nurse, and finally as a Nursing Officer. In 1987, he moved to Brighton, working as a Senior Nurse Manager, Assistant Director of Nursing and advisor for the Health Authority.
In 1991, he moved back to Wales, eventually becoming a Senior Nurse Manager for Rehabilitation and Elderly Mentally Infirm (EMI) in Bridgend.

Unfortunately, in 1997 Tony retired from the National Health Service because of what he now knows to be his AKU. Retraining as a teacher, he took up a teaching post at a primary school in the Vale of Glamorgan. He was able to continue this until 2016, when his AKU worsened significantly. Now, Tony spends time with his six grandchildren: Olly, Chloe, Owain, Amelie, Aled and Arthur. He also serves as a governor for two primary schools and is chairperson and publicity officer for a local choir.

We have also appointed Professor Jim Gallagher. Jim took his PhD at the University of Cambridge, where he studied the metabolism of vitamin D. He then undertook post-doctoral research at Bern and Sheffield, before being appointed to a lectureship at University College, London, in 1984. In 1986, he moved to the University of Liverpool, where he now holds the Derby Chair of Anatomy and Cell Biology. He has published over 150 peer-reviewed publications, 20 book chapters and 5 patents.

In recent years, much of Jim’s research has focused on the way joints are destroyed by AKU. Jim has been the driving force behind our AKU scientific workshops and has met patients at a number of patient workshops. We will benefit from his advice on the board of trustees.