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 adult sons 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.
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 has been supporting the Committee since 2016 and is currently responsible for managing and updating the website. Jacob is based in London and currently works as a product manager for a 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 currently works as Director of University Access at an East London state school. Her interests include music, traveling and the outdoors.
Beatrice is the Treasurer of the PCD Family Support Group and has PCD. She has been supporting the group since 2013, when she also joined the committee, and has been Treasurer since November 2017. Beatrice is passionate about raising awareness of PCD and promoting research and has participated in a handful of investigative medical research studies. She studied Psychology at university, specialising further in Occupational Psychology. Her interests are varied and include ballet, reading, cooking, traveling and sports.
Other Committee Members
- Terry Irwin
- Charlotte Kewell
- Elizabeth Maleady
- Gary Tipping
- Nhu Tran
- Alice Redfern
- Susanne Shanks
- Edel Cloughe