Our trustees are all volunteers with a broad range of skills and experience. They meet around five times a year to review progress against our plans and to plan for the future. As volunteers we do not provide direct contact details for them but if there is something you think needs discussing with them we would encourage you to send us a message.

Stephen Stacey- Trustee since 2017, Chair

Stephen Stacey became Chair in November 2020. He has a background in the motor industry, holding senior management positions. Most recently he was MD for EuroRAP, a European road safety not-for-profit organisation.. He recently completed a charity governance qualification with Bayes Business School in London.

Frances Gawthrop- Trustee since 2001

Frances Gawthrop is Director of Research and Development at Tozer Seeds. She has general management experience as well as an interest in research. She has previously been the charity’s treasurer.

Angela Hunter- Trustee since 1992

Angela Hunter is a retired Speech and Language Therapist and continues to advise the charity in this capacity as well as being a Trustee.

Clare Robinson
Clare Robinson- Trustee since 2014

Clare Robinson  is Head of Research at DEBRA International. She is keen to see EDS UK become a regular funder of high-quality research and advises the charity in this capacity.

Leah Mansfield
Leah Mansfield- Trustee since 2013

Leah is a barrister. She is currently on long-term leave from her legal career and has recently become more involved in the charity’s fundraising efforts.

Jason Pearce
Jason Pearce- Treasurer, Trustee since 2018

Jason Pearce is a qualified accountant and has held several senior finance positions. He set up his own rail telecommunications integration technology business in 2011 and sold it to Panasonic in 2016. He is currently working as a consultant in the same industry. Jason’s daughter has EDS.

Adrian Steel- Trustee since 2018

Adrian Steel is an archivist and held several positions in the culture sector before becoming Director of The Postal Museum for 8 years, culminating in its successful opening in 2017. He secured significant sums to deliver the new museum from a wide range of sources, including trusts/foundations, statutory and private funding, and continues to work in the Culture sector currently leading RIBA’s cultural heritage teams.

Charlotte Williams- Trustee since 2020

Charlotte Williams is Chief Strategy & Improvement Officer at Mid & South Essex NHS Foundation Trust. She is a member of the Trust Board and leads on quality improvement and innovation, planning and system and service redesign, clinical service strategy, quality improvement, Integrated Care System-wide transformation, and strategic intelligence. Alongside several other roles, Charlotte is a member of the Health Foundation Q Community, and has published on the topic of patient involvement in major redesign of health services.

Sarita Aujla
Sarita Aujla- Trustee since 2020

Sarita Aujla is a Partnerships Manager at Diabetes UK, specialising in Trust and Statutory fundraising. She has published health research on the NHS Stop Smoking Services in the Journal of Smoking Cessation and has a BSc (Hons) Psychology from University College London. Sarita lives with hEDS.