Chief Executive and Secretary, Diana Perry

Diana is the founder of the Ectodermal Dysplasia Society and runs the charity from her home in Cheltenham. Diana is married to Ian and has 5 children. Two of Diana’s sons are affected by Ectodermal Dysplasia, one born in 1991 and the other born 1995. Diana has considerable experience advising families, medical professionals and local authority officials on all aspects of the Ectodermal Dysplasias. If you have any questions about ED or how the ED Society could help you, please contact Diana.

Chairman and Webmaster, David Wyatt
David, a Biology and IT Lecturer, is married to Margaret and lives in Wanstead. David and Margaret have two children, one of whom was born 1987 and is affected by Witkop syndrome. David joined the Trustee Board in September 2001 and has been Chairman since 2003. Before joining the Board David created our first website back in 1998 and has maintained it as Webmaster since its conception.

Education and Air-conditioning, Mandy White
Mandy is married and has 3 children, of which one of her sons has HED. Mandy is a registered Nurse in Bournemouth, having worked in both the NHS and Community Setting as Director of Nursing. She now works as a Nurse Advisor in the private sector. Mandy has been a Trustee since September 2001 after her son was diagnosed with ED. It is through her work in the community that she is able to advise and assist families in approaching Social Services with regard to air-conditioning. Mandy is also responsible for School Liaison in which she ensures schools acknowledge and understand the care needed for students who have ED. To contact Mandy via email

Melanie Davis
Mel was born with the EEC form of ectodermal dysplasia. Mel has been an optometrist for the last 18 years. Recently Mel has completed a law degree plus a specialist year course in medical law. Mel has been a Trustee for about 2 years and can offer optometric advice about glasses etc, as well as general advice on many eye conditions. Mel can also offer some legal advice.
In her spare time, Mel has just started as a volunteer for a charity that advises the public as to what legal steps they can take in regards of medical negligence. She also plays table tennis and has represented Great Britain in the Paralympics.

Stephen Ayland

Stephen brings a wealth of educational experience with him, having worked in the primary school sector throughout his teaching career. He retired from being Head Teacher of a junior school. He is married to Sally and they have two grown-up children and one grand-daughterr.  Stephen enjoys singing, walking and gardening.

Simon Lees-Jones

Simon was born in 1966 with a cleft lip & palate, he grew up with all the problems associated with Ectodermal Dysplasia, without knowing about the condition. He is married with 2 daughters and he didn't realise he had ED until his second daughter was born. Simon is a Chartered Surveyor and works for his family brewery and pub company in Manchester.

Dr Steve Preston, Treasurer

Steve was born in London. He has been marrid to Rachel since 1991 and has one son, Charles. Steve's hobbies and interests includes photography and travelling.

Paul Collacott

Paul is a civil servant in Cheltenham and has experience in managerial, development and personnel management. One of his godsons is affected by ED and he first got involved with the Society in the transition to becoming a Charity. He was Chairman for the first year. Paul is married to Sarah and has 3 largely grown-up children. In his spare time Paul does lots off musical things and enjoys the odd crossword.

Administrative Assistant, Sue Beard, Dip. L.A.M
Sue is married to Rob and has two children. Sue had no previous knowledge of ED until she came to the ED Society 4 years ago to work as the Administrator. Sue had previously worked as a Legal Accountant for a large firm of Solicitors.

Back to top >