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     Ectodermal Dysplasia Society


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Who we are

The ED Society is run by a Board of Trustees who give their time voluntarily to make the mission of the ED Society a reality. (See Our Mission) If you are interested in becoming a Trustee, please contact Diana Perry

The Board of Trustees is supported by:

  • 2 Administrative assistant
  • 1 Finance/Website Manager
  • 1 Scottish Representative
  • 1 Irish Representative
  • and a Medical Advisory Board
Board of Trustees
Diana Perry  

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.

Mandy White   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.
marc mcnair   Professor Mark Macnair
Mark Macnair retired in 2010 from an academic career in biology. For most of his career he was at Exeter University becoming Professor of Evolutionary Genetics in 1997. In addition to working at the University, he served as an Exeter City Councillor, and as Chair of Governors of the Maynard School, Exeter. He was Vice-President of the Genetics Society of GB, responsible for Public Understanding of Genetics, from 2002-2007. He is a member of the Chudleigh and Bovey Tracey Rotary Club and plays Association Croquet with Exeter Croquet Club. He is married to Vicky and they have two children, Richard and Emma, and two grandchildren, one of whom, James, suffers from ED.
Melanie Davis   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 several 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.
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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.


simonleejones   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.

Treasurer, Alan Waller
Alan is an accountant who lives in Cheltenham with his wife and two dogs.  He has three children who have all left home for the time being, but this situation may change.  He brings a wide range of accounting experience to the Society and has all the archetypal attributes of an accountant, claiming that the finer points of bookkeeping can be interesting.

paul collacott   Chairman, 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 and took over the position again in 2011. Paul is married to Sarah and has 3 largely grown-up children. In his spare time Paul does lots of musical things and enjoys the odd crossword.


Sharon Cooper

Sharon is married and has a daughter with ED. She works as a Senior Civil Servant for the Cabinet Office in Central London working with government agencies to transform their businesses from paper based services, to digital, online services. She has a long background in publishing, with a strong focus on business and medical publishing and has spent time working with medical professionals, specifically in surgery and genetics. Sharon lives with a slightly mad Labradoodle called Daisy Doodles and three chickens - Snowy, Freckles and Bluebell.



Scott Gallacher

Scott Gallacher lives in Leicester and is an award winning Chartered Financial Planner, personal finance expert and director of Rowley Turton (IFA) Ltd. He is an active member of the Rotary Club of Leicester. He is engaged to Eileen and they have two children, Ryan and Daniel, who both have X-linked HED.

Scott lives in Leicester and is an award winning Chartered Financial Planner, personal finance expert and director of Rowley Turton (IFA) Ltd. He is an active member of the Rotary Club of Leicester. He is engaged to Eileen and they have two children, Ryan and Daniel, who both have X-linked HED.

  Accounts / Website Management, Sue Beard, Dip. L.A.M
Sue has two children. Sue had no previous knowledge of ED until she came to the ED Society in 2003 to work as the Administrator.She maintains the website and manages the Finances. Sue had previously worked as a Legal Accountant for a large firm of Solicitors and has over 30 years accounts and computer experience.To contact Sue via Email
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Administrator, Julie Cox

Julie works as an Administrator for the ED Society and has previously been a Teacher.



Irish Representation, Elaine Aylward

Elaine lives in Ireland and has 3 boys one with ED. She has been a member of the society for many years and has become the family contact for members throughout Ireland.



Administrator, Danielle Gue

Danielle works as an Administrator, she has two young children and she previously worked as part of an accounts team at a hotel. Danielle had no previous knowledge of ED before joining the society.

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