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.

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.





Wilma Robins


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.





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.





Sarah Burgess


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.





Wilma Robins


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.





Tom Kenny, CEO for MPS Commercial






Sarah Burgess


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.





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.





Wilma Robins


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.





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

Sarah Burgess


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.





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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.





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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Registered Charity No.1143472 & SCO41012. Registered Company No. 7726882.

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