Based in Buckinghamshire, we are a registered charity which is governed by an independent board of trustees.
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.
Chair
Judith Evans
Judith was born and brought up in East Anglia, moving to live in the west of Scotland with her husband Graham in 1981. They have had a long association with the MPS Society since their daughter, Joanne, was diagnosed with MPS IV Morquio in 1989 when she was three years old.
Judith was first appointed as a trustee in 2000 serving as Honorary Treasurer for several years and more recently as vice-chair. She is currently Chair of the Trustee Board.
Vice Chair
Wilma Robins
Wilma has been involved with the MPS Society since its founding in 1982. Her son Gethin was diagnosed with MPS I 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.
Trustee
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.
Trustee
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.
Trustee
David Patton
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.
Trustee
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 MPS VI. They live in North Somerset.
Trustee
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.
Trustee
Katy Brown
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.
Trustee
Simon Heales PhD FRCPath
Simon Heales is a Consultant Clinical Scientist and a Professor at University College London. He is Director of the Neurometabolic Unit at the National Hospital, Queen Square London, UK. His lab provides highly specialised biochemical testing for patients with inherited disorders affecting neurotransmitter and mitochondrial metabolism.
From 2009 to 2022, Simon was also Head of the Enzyme Laboratory at Great Ormond Street Hospital. His research interests underpin his diagnostic work and include development of new (mass spec based) diagnostic assays for mitochondrial, lysosomal and neurotransmitter disorders. Simon also has a research interest in elucidating the biochemical mechanisms associated with ketogenic diets. Simon has published more than 150 peer reviewed papers and successfully supervised 25+ PhD students.
Trustee
Professor Derralynn Hughes
Derralynn Hughes is Professor of Experimental Haematology at University College London, Clinical Director of Research and Innovation at the Royal Free London NHS Foundation Trust, and Co-Clinical Director of the NCL Cancer Alliance.
She is also Chair of the European Working Group on Gaucher Disease. Derralynn has clinical responsibilities in the areas of haematology and lysosomal storage disorders and is Chair of the Anaemia Clinical Practice Group. She is an author of over 150 papers in the area of macrophage biology and lysosomal storage disorders.
Trustee
Dr Glenn McKee
Glenn has MPS IVA and first heard the term Morquio’s Syndrome in 1978 when, as a student, he was referred to University College Hospital. UCH put him in touch with the MPS Society in the mid-1980s, and he has drawn on it for advice and support since then, most recently during the COVID lockdowns.
Glenn worked for over 35 years in the public service—for the Civil Service and House of Commons, retiring with an OBE. Glenn lives in south London and his outside interests include history, cinema and theatre.
Bob Stevens took on the MPS Society CEO role in 2017. Previously, he was involved with the charity as a parent and later as a Trustee before taking on a senior leadership role. He brings his experience as an MPS dad and a charity leader to the job, giving a unique passion that inspires everyone. He is involved with several organisations where he represents the voice of our community. Click on his photo to read more.
Group CEO
Bob Stevens
b.stevens@mpssociety.org.ukIn 2017, Bob Stevens became the Group CEO of the MPS Society and Rare Disease Research Partners, a global patient organisation with a one-of-a-kind patient logistics support and research subsidiary. Although based in the UK, this organisation has a global impact. Since 1982, the MPS Society has been providing support to the rare disease community, including one-on-one support both in person and remotely, tailored to the patient's needs. Other services include benefits advice, psychological support and working with all parts of the healthcare ecosystem to ensure patients gain access to treatments and therapies that can help improve their lives.
Bob also holds various other roles, both in the UK and globally, including LSD Global Chair, LSD Collaborative Vice Chair, Fabry International Network Board Member, PMCPA Appeal Board Member and International MPS Network Member. He is also a motivational speaker for the pharmaceutical and rare disease community.
"Having been on a rare journey for nearly 25 years and as a dad of two boys with a rare condition, I have experienced many of the challenges and opportunities in the rare and ultra-rare world. I do not have a job, but a way of life dedicated to ensuring global collaboration and supporting our communities to live a rare life better."
Ambassadors help raise awareness of MPS, Fabry and related conditions and support our efforts to improve the lives of those affected by these rare conditions.
Ambassador
Simon Thomas
I am delighted to support the incredible work of the MPS Society, a charity making such a meaningful difference for those affected by life-limiting rare conditions. Their dedication to improving lives is truly inspiring.
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.
Bob Stevens, Group Chief Executive
Sophie Thomas, Senior Head of Patient Services and Clinical Liaisons
Anna Featherstone, Head of Fundraising
John Illankovan, Head of Group Finance
Bethanie Pentecost, Head of Support
Alison Wilson, Head of Projects & Communities
Toni Ellerton, Executive Assistant and Company Secretary
Barbara Cotterell, HR Lead
Helen Crawley, Head of Communications
As the only charity supporting individuals and families affected by MPS, Fabry or a related disease in the UK, we offer the specialist support, information and advocacy that our community needs to make informed decisions, whether about treatment, education or benefits.
We enhance our services with personal experiences, access to a community of peer support and collaboration with healthcare professionals. Every year we reach 1,500 families and recently experienced a 12.6% increase in demand for our services. Our Support and Communities Teamwork across the UK, averaging 2,655 miles per month visiting our members and provide them with vital support and advocacy.
From a single advocacy officer, back in 1986 funded by BBC Children in Need, covering the whole of the UK, the Society’s highly skilled advocacy team and supports over 1,500 families and individuals in all aspects of social care as well as access to special educational needs and clinical management.
Head of Support
Bethanie
b.pentecost@mpssociety.org.ukHi, I’m Bethanie! My background is in healthcare, I have been working for over 20 years as a physiotherapist within the NHS, mainly in the community with individuals with neurological conditions. So I have plenty of experience and insight into the real-life challenges of dealing with health and social care services.
Senior Support Officer
Sally
s.briody@mpssociety.org.ukI have been with The MPS Society for long enough to know many of our members. Knowing that we are living in times where getting even basic needs (and rights met) is so hard, I understand completely how it can get members and their families down. The continuous minefield of how to go about getting anything sorted is enough to make people give up.
Being part of a service that supports members and their families to achieve their needs and hopefully, take a share of the burden in doing so, is a great feeling.
When I get a call or email telling me their issue has moved forward as a result of our support, it makes me realise that even when it is hard and complicated, it ultimately is worth it and we move on to fight another day together!
Support & Advice Officer
Ali
a.sellers@mpssociety.org.ukHi, I’m Alexandra (but most people know me as Ali). I began my career as a Health Care Assistant across two NHS Trusts while completing my university studies. After graduating, I moved into employability services, supporting individuals with health conditions and disabilities to overcome barriers and find meaningful work. I also have experience in staff training and development, helping people grow their skills, confidence and potential.
Head of Projects & Communities
Alison
a.wilson@mpssociety.org.ukI am the Head of Projects & Communities, covering Northern Ireland and Scotland. I have a background as a genetic counsellor and I have a special interest in lysosomal storage disorders and rare diseases.
I also moderate the MPS Support Hub on Facebook, along with Hannah.
Projects & Communities Officer
Hannah
h.farrell@mpssociety.org.ukI'm Hannah and my background has been working as a statutory advocate within the mental health and learning disabilities sector. I recognise the difficulties and barriers that families face to get the support they need.
I enjoy working with individuals and families to hopefully take some of the burdens off and support them along the way, most importantly reaching the positive outcomes they deserve.
