The Committee are responsible for the strategic management of the organisation and delivery of our charitable objectives. Our trustees are not paid and they all hold voluntary posts. Our board is made up of very experienced and talented people, many of whom have a direct personal understanding of Primary Ciliary Dyskinesia.
Fiona Copeland is the Chairman of the PCD Family Support Group and is Mum to two boys with PCD. Fiona spent many years working in the banking industry but now is a project management consultant. She is also the Patient Representative for Chronic Supparative Lung Diseases for the BRU CSLD Consortium part of the NIHR Biomedical Research Unit, Royal Brompton Hospital London and is the patient representative for the European Respiratory Society. Her interests include travelling, theatre, running (slowly!), motor racing, rugby and watching her boys do sport.
Mick Wilkin is the Treasurer of the PCD Family Support Group and has held this position since 2005. Mick has two children, the eldest has PCD. Mick is a Fellow of the Chartered Institute of Management Accountants having initially qualified in 1993 and is employed by the British Library where he heads up the Management Accounting function, based at its site in Wetherby, Yorkshire. His interests include most sports but especially football and rugby league, walking and spending time with the family.
Sarah Kirk is the child contact of the PCD Family Support Group. She is the mum of two boys who both have PCD. Sarah has spent many years working in the NHS as a Registered General Nurse. She and her family attended a couple of PCD Family days and from there she became a member of the committee and a child contact. Sarah interests include going on holiday, walking, camping, family time and watching her boys take part in sports such as swimming and football.
Myra Tipping is the Secretary of the PCD Family Support Group and has PCD herself. Myra has held this position since 2006. Her husband Gary is also on the committee. She used to work as a teacher and her hobbies include bridge, yoga, sewing, literature, theatre, music and film.
Sylvie Prouse is the contact for adults with PCD. She was diagnosed with PCD in her thirties. She has two healthy grown up children. Sylvie is retired, giving information sessions on dementia as a volunteer with the Alzheimer’s Society, and is involved in her local Baptist church. She enjoys reading and runs a book group.
Jacob Fries is a general committee member of the PCD Family Support Group. Jacob is based in London and currently works as a business development associate for a global tech company. His interests include rowing, tennis and stand up comedy.
Lucy joined the committee in 2016 and has represented the group at Rare Disease events in Wales since 2014. Diagnosed with PCD (Kartagener’s) when she was 4 years old, Lucy has raised awareness of the condition from a young age, as a demonstration patient in medical exams for student doctors. She studied French and Italian at the University of Cambridge and now works as a Policy Advisor for the Higher Education Funding Council for England.
Other Committee Members
- Justine Currie
- Terry Irwin
- Charlotte Kewell
- Elizabeth Maleady
- Beatrice Redfern
- Gary Tipping
- Nhu Tran