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The ED Society is run by a Board of Trustees, who meet twice a year and give their time voluntarily to ensure the mission of the ED Society becomes 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 info@edsociety.co.uk

The Board of Trustees is supported by:

  • Chief Executive Officer – voluntary
  • Finance/Website Manager
  • 2 Administrators
  • 1 Representative in Ireland – voluntary
  • 1 Fundraising Co-Ordinator – voluntary
  • A Medical Advisory Board – voluntary

Board of Trustees

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 2 grown-up children and 2 grand-daughters. Stephen enjoys singing, walking and gardening.

Elaine Aylward – Irish Representation

Elaine lives in Ireland and has 3 boys one with Ectodermal Dysplasia. She has been a on the board of trustees for 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 Ectodermal Dysplasia. He has done great work helping to support the Society and raise much needed funds, Stuart is a keen runner and cyclist.

Paul CollacottChairman

Paul is a civil servant in Cheltenham and has experience in managerial, development and personnel management. One of his godsons is affected by Ectodermal Dysplasia and he first became 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 ED Society began when her daughter was diagnosed
with Ectodermal Dysplasia, 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 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. Scott is engaged to Eileen and they have 2 children, Ryan and Daniel, who both have X-linked Hypohidrotic Ectodermal Dysplasia.

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 anything about the condition until his second daughter was born. He is married with 2 daughters and is a Chartered Surveyor working for his family brewery and pub company in Manchester.

Andy Ponting

Andy has been a resident of Cheltenham for 26 years and is married with 4 children and 2 grand-children. He is a semi-retired former Sales Director of an Electronic Company selling into the aerospace industry. Andy is an active member of St. Mary with St. Matthew’s Church, Cheltenham. He is a former treasurer of the ED Society during its formative years and returned to the Trustee Board in 2017. Andy is also a School Governor at Cheltenham Bournside School and Sixth Form Centre. His hobbies include golf, more golf and still more golf, cycling, his Mazda MX5 and Charity work.

Alan Waller – Treasurer

Alan is an accountant who lives in Cheltenham with his wife and 2 dogs. He has 3 children. Alan 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.

Mandy White – Education and Air-conditioning

Mandy is married and has 3 children, of which one of her sons has Ectodermal Dysplasia. 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.

Martin Williams

Martin lives in London and has a young son, Harry. He is a Financial Planner at MJW Wealth Management.Nephew to Diana Perry, Founder of ED Society, Martin has seen the effects of ED first hand.Outside of work Martin loves to stay fit, read and spend time with his family.

Nick Briggs trustee ectodermal dysplasia society

Nick Briggs

Nick lives in London with his partner Jess and 4 children, and became involved with the ED Society in 2015 when his son Thomas was diagnosed with Ectodermal Dysplasia. Nick has worked in Investment Banking around the globe for over 25 years. Outside of work, Nick is an avid Football fan and loves spending time with his family.

Lissa Pelham

Lissa has been working in and out of the charitable sector since 1996 and is currently on Oxfam’s humanitarian response team. She has spent the last 15 years working to help people in low income countries access welfare support from governments and communities. Lissa is mother to two ebullient young children – her son was clinically diagnosed with ED last year and she wanted to join the trustees after the support the EDS gave her. She dreams of having spare time.