Our trustees

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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 – 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.





Bob Stevens, Group Chief Executive


Bob Stevens is the Group CEO of MPS Society and MPS Commercial, he is also Co-Chair of the International MPS Network and Vice-Chair of the LSD Collaborative. Bob was previously Managing Director of a charity supporting people of all ages with learning disabilities and complex needs and was a trustee for the MPS Society for over 10 years before joining the Society as Operations Manager.

Before working in the not-for-profit sector Bob had a successful career in construction and spent over 10 years operating at board level whilst managing a private property development portfolio.

Bob has two sons with MPSII Hunter which is one of the rare genetic diseases that is supported by the MPS Society and says of his role, "it's not a job but a way of life".





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.





Bob Stevens, Group Chief Executive


Bob Stevens is the Group CEO of MPS Society and MPS Commercial, he is also Co-Chair of the International MPS Network and Vice-Chair of the LSD Collaborative. Bob was previously Managing Director of a charity supporting people of all ages with learning disabilities and complex needs and was a trustee for the MPS Society for over 10 years before joining the Society as Operations Manager.

Before working in the not-for-profit sector Bob had a successful career in construction and spent over 10 years operating at board level whilst managing a private property development portfolio.

Bob has two sons with MPSII Hunter which is one of the rare genetic diseases that is supported by the MPS Society and says of his role, "it's not a job but a way of life".





Sophie Thomas, Head of Advocacy and Patient Services


Sophie is a patient advocate with over 24 years’ experience of working within the health and social care field. Sophie started work at the MPS Society in March 2002 and has specialised in patient advocacy for over 17 years, leading the MPS Society’s patient advocacy service since 2005.





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.





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.





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.





Phil Pearson


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.





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.





Our senior leadership team

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.





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.





Bob Stevens, Group Chief Executive


Bob Stevens is the Group CEO of MPS Society and MPS Commercial, he is also Co-Chair of the International MPS Network and Vice-Chair of the LSD Collaborative. Bob was previously Managing Director of a charity supporting people of all ages with learning disabilities and complex needs and was a trustee for the MPS Society for over 10 years before joining the Society as Operations Manager.

Before working in the not-for-profit sector Bob had a successful career in construction and spent over 10 years operating at board level whilst managing a private property development portfolio.

Bob has two sons with MPSII Hunter which is one of the rare genetic diseases that is supported by the MPS Society and says of his role, "it's not a job but a way of life".





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. 

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We are the only registered charity providing professional support to individuals and families affected by MPS, Fabry or a related disease in the UK.

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MPS Society, MPS House,

Repton Place, White Lion Road,

Amersham, Buckinghamshire,

HP7 9LP, United Kingdom

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