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Our team

Based in Buckinghamshire, we are a registered charity which is governed by an independent board of trustees.

Our 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.

Our senior leadership team

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

  • Steve Cotterell, Head of Support and Advocacy

  • Toni Ellerton, Executive Assistant and Company Secretary 

  • Barbara Cotterell, HR Lead

  • Helen Crawley, Head of Communications

Our support team

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 advocacy 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.