James Garthwaite – Chair
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.
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.
Judith Evans – Vice 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 previously served as a Trustee for 16 years, including as honorary treasurer for many years, and is now returning to the Board as vice chair. In her spare time, Judith enjoys ballet, swimming and choral singing.
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.
Sukhi is from Wembley (London), where she lives with her husband and two children. She joined the MPS Society in around 2002, after her daughter Simran was diagnosed with MPS I. She became a trustee for the society in March 2017.
Her background is in banking, she worked for Midland Bank/HSBC Bank for nearly 31 years, both in Retail and Commercial Banking.
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.
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.
Professor Mehta, now retired, worked as a Consultant Haematologist and Physician at the Royal Free Hospital in London, part of the Department of Haematology of University College London School of Medicine for 32 years. He completed his undergraduate training at Cambridge University and King’s College Hospital. He then trained in General Internal Medicine at King’s College Hospital and Hammersmith Hospital in London and in Haematology at the Hammersmith Hospital. His Doctorate in Medicine was sponsored by the Medical Research Council and he spent two years examining molecular mechanisms underlying aplastic anaemia at the Imperial College, London. He was also a Clinical Director of one of the nationally designated Lysosomal Storage Disorders Units, which focus on enzyme replacement therapy for LSDs. This is one of the largest centres for adult patients with lysosomal storage disorders in the UK, where he worked with a team of nurses, physicians and researchers who are committed to developing and delivering care to patients and families with LSDs
He is the author of three books, more than 40 chapters and over 200 publications in peer reviewed journals.
Gordon joined our trustees in early 2019. He has over 20 years’ experience in the healthcare industry, working in many varied commercial roles, both within the UK and internationally. Gordon has worked in a number of rare diseases, including metabolic disorders, rare epilepsy and lysosomal storage disorders. During 2018 he also worked for MPS commercial.