The foundations of a good charity are always built upon good governance. Our trustees are from a diverse range of backgrounds including family members of those with one of our conditions, clinicians, scientists, and business people. Our trustees receive regular training and play an active role at events and in setting our new strategy.
Judith Evans - Chair
Judith was born and brought up in East Anglia, but moved to the west of Scotland with her husband Graham in 1981. They have enjoyed a long association with the MPS Society since their daughter Joanne was diagnosed with MPS IV Morquio in about 1989. Judith has served as a Trustee for many years, including roles as honorary treasurer and vice-chair. In her spare time, Judith enjoys ballet, swimming and choral singing.
Professor Bryan Winchester
Bryan Winchester is an Emeritus Professor of Biochemistry at the UCL Institute of Child Health at Great Ormond Street Hospital, University College London. He has taught Biochemistry and carried out research on various aspects of lysosomal storage diseases at London University for 40 years. In particular, he worked closely with the Enzyme Diagnostic Laboratory at Great Ormond Street Hospital from 1988-2006. He was chairman of the European Study Group on Lysosomal Diseases from 1997-2007. On retirement in 2006, he became a Trustee of the British MPS Society.
Phil is a Client Director at Computer Centre, a major IT solutions provider where he runs a large client servicing team. He became a trustee in February 2019. He is a self-confessed ‘jack of all trades’ and ‘master of none’. His interests out of work include cycling, running and swimming, with a major bike ride planned in July to raise money for the MPS Society. Phil is married to Yvonne and they have two wonderful sons – Oscar (5) and Archie (11). Archie has MPSVI. They live in North Somerset.
Simon Heales PhD FRCPath
Simon is the Director of the Neurometabolic Unit at the National Hospital for Neurology (Queen Square, UCLH) and a Consultant Clinical Scientist at the Enzyme Laboratory based at Great Ormond Street Hospital. He has a strong interest in the diagnosis and monitoring of patients with inherited metabolic disorders. This work is underpinned by a number of basic and translational research projects that are carried out in conjunction with the UCL Institute of Child Health. He has published over 175 papers in the areas of mitochondrial, neurotransmitter and lysosomal disorders.
Wilma Robins - Vice Chair
Wilma has been involved with the MPS Society since its founding in 1982. Her son Gethin was diagnosed with MPSI Hurler disease in 1980 and, having experienced two years of near desolation, the introduction of the MPS Society in 1982 transformed her and her husband’s lives. Gethin died in December 1984 at the age of five and a half, and thereafter Wilma became involved in the work of the organisation, fulfilling the varying supporting administrative roles and becoming a Trustee in 1990. Wilma’s background as a Civil Servant throughout her working life and her experience in devising and implementing policies, especially in the area of HR, has been particularly useful to the Society. Wilma was born and raised in West Wales and Welsh is her first language.
I became involved with the MPS Society when I was about nine years old, after my parents received my diagnosis of Mucolipidosis III, and I have been involved with the MPS Society ever since. I’m proud and honoured to have been asked to be a trustee. Over the years I’ve received so much support from the MPS Society and now hope to do the same for others. I completed my Psychology and Health Studies BSc Degree at Bath Spa University where I received a 2:1. I then worked as a teaching assistant for a few years with the plan of becoming a teacher. However I realised that I wanted to teach young people about life so went back to university to train as a Youth Worker. After completing my Youth and Community Studies degree in 2009 I became a Youth Worker for the YMCA and my local council. Being a Youth Worker is about supporting young people through informal education. I love my job working with young people who are in need of some extra support. In my spare time I enjoy being with friends and family, going to gigs and festivals, travelling and watching sports especially American Football.
Dr Fiona Stewart
Dr Fiona Stewart is a recently retired consultant in Clinical Genetics based in Belfast. She has been involved in the care of adults and children with MPS and related disorders for over 20 years. She has been an investigator in a number of ERT trials. she was very involved in the establishment of genetic testing in the UK and chaired the UKGTN genetic testing and evaluation working group for over 10 years. In 2013 she was awarded the MBE for services to genetic medicine in the UK. In 2017 she was diagnosed with breast cancer. Following surgery, chemotherapy and radiotherapy she made a good recovery and is enjoying life with her husband Sam. She now has time to visit her son in England and her daughter who has moved to Australia. She still has a keen interest in MPS and related disorders.
Derralynn Hughes is Professor of Experimental Haematology at University College London, Clinical Director of Research and Innovation at the Royal Free London NHS Foundation Trust, and Co-Clinical Director of the NCL Cancer Alliance. She is also Chair of the European Working Group on Gaucher Disease. Derralynn has clinical responsibilities in the areas of haematology and lysosomal storage disorders and is Chair of the Anaemia Clinical Practice Group. She is an author of over 150 papers in the area of macrophage biology and lysosomal storage disorders.
James first became involved with the Society in 1996 when his two sons, Tom and Louis, were diagnosed with MPS II, Hunters Syndrome. They have both been on enzyme replacement therapy since 2004, transforming their lives. James became a Trustee in 2013 and then Chair in July 2018. He has spent most of his career leading communications teams in businesses and government. He, his wife Claire, and their three children live in Surrey with a ridiculous Swedish Vallhund dog, coincidently also on enzyme replacement.
David became a trustee in 2017, shortly after his wife, Alison, and two sons, Alex and Oscar, were diagnosed with Fabry. David lives with his family just outside Glasgow. David is currently the Head of Proactive Fraud at the Department for International Development and has significant experience in finance, audit and governance, working previously for PricewaterhouseCoopers.
Katy became a trustee in 2020 but has been involved with the Society since her eldest son, Sam, was diagnosed with MPS IVA Morquio in 2010. She and Sam were both heavily involved in the successful campaign for the NHS to fund Vimizim in 2015. She lives in Yorkshire with her husband Simon, Sam, and his younger brother Alex. Katy is a Programme Manager working for the Co-op, with a wealth of transformation experience. Outside of working she enjoys running, travelling and organising fundraising events.
Our senior leadership team
The senior leadership team is made up of representatives from each department who meet regularly to drive forward the mission of the MPS Society on a day to day basis.
Bob Stevens, Group Chief Executive
Sophie Thomas, Senior Head of Patient Services and Clinical Liaisons
Anna Featherstone, Head of Fundraising (On maternity leave)
Carol Tunstall, Acting Head of Fundraising
John Illankovan, Head of Group Finance
Steve Cotterell, Head of Support and Advocacy
Toni Ellerton, Executive Assistant and Company Secretary
Barbara Cotterell, HR Lead
Helen Crawley, Head of Communications