MPS Society

Question 1

Judith Evans – Vice Chair

Answer

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.

Question 2

James Garthwaite – Chair

Answer

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.

Question 3

Katy Brown

Answer

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.

Question 4

Sarah Burgess

Answer

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.

Question 5

David Patton

Answer

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.

Question 6

Professor Bryan Winchester

Answer

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.

Question 7

Gordon Harvey

Answer

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.

Question 8

Sarah Burgess

Answer

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.

Question 9

Katy Brown

Answer

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.

Question 10

Katy Brown

Answer

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.

Question 11

Katy Brown

Answer

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.