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.
Jessica is a Trustee for the Society for Mucopolysaccharide Diseases. Jessica had an elder brother, Daniel, who was born in 1977 and was diagnosed with MPSII Hunter disease at the age of three. Daniel sadly passed away in 1986. Jessica has been involved in the Society since she was little and is an avid fundraiser through her road cycling. Jessica is a family solicitor practising in London.
Tim has been a trustee for the MPS Society since 2005 and lives in Hertfordshire. He first got involved with the MPS Society in 2001 when his daughter was diagnosed with Sanfilippo in 2001 at the age of 3.
Tim is an enthusiastic and self-motivated IT professional with extensive experience in the financial services industry, IT consultancy and shipping, he brings to the board a wealth of experience in audit, governance and risk management.
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.
My name is Daniella but most people call me Dani! I live in Hertfordshire with my husband Mark and our boys Caleb (10) who has MPS II and Gabriel (3) who is unaffected. We are currently expecting our third baby, a daughter, in March 2018. In the last five years I have worked for a local sexual health charity as a outreach worker supporting those living with HIV. I am passionate about advocacy and also help support local mums getting to grips with a difficult diagnosis.
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.