The ED Society is run by a Board of Trustees, who meet three times a year and who give their time voluntarily to make the mission of the ED Society a reality.

They aim to keep the ED Society moving forward,  ensuring their work, including the finances and policies, are in line with the Charity Commission rules, and provide advice and support to the Office.  If you are interested in becoming a Trustee, please contact us.

Our Trustees –

Mandy White – Education and Air-conditioning

MandyMandy White 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.

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-daughter. Stephen enjoys singing, walking and gardening.

Simon Lees-Jones

simonleejonesSimon 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.

Alan Waller – Treasurer

Alan is an accountant who lives in Cheltenham with his wife and two dogs.  He has three children. 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 collacottPaul 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 grown-up children. In his spare time Paul does lots of musical things and enjoys the odd crossword.

Sharon Cooper

Sharon’s first involvement with the Ectodermal Dysplasia Society was when her daughter was first diagnosed with ED, and she has been a trustee since 2012.  Sharon is the Chief Digital Officer for BMJ Publishing Group, where she is responsible for a portfolio of clinical online services that enable doctors to improve their knowledge and skills.  She has a long background in publishing and technology, with much of her recent career involved in change management.  Outside of work Sharon is a keen baker.

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.


Andy Ponting

Resident of Cheltenham for 26 years.  Married with four children and two grand-children.  Semi-retired former Sales Director of an Electronic Company selling into the aerospace industry.  Active member of St. Mary with St. Matthew’s Church, Cheltenham.  Former treasurer of the ED Society during its formative years.  School Governor at Cheltenham Bournside School and Sixth Form Centre.  Hobbies include golf, more golf and still more golf, cycling, my Mazda MX5 and Charity work.

Elaine Aylward – Irish Representation

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.



Stuart Atkiss – Fundraising Co-ordinator

Stuart lives in Dudley and has a son with ED.  Stuart is also fundraising co-coordinator for the Society.  He has done great work helping to support the Society and raise much needed funds.