Nicola Carnie - Chair
Nicola became involved in the Campaign in June 2017 when her partner Mark Phillips was diagnosed with sporadic CJD. She was Mark's primary carer until he passed away eight weeks and three days after diagnosis. She is therefore only too aware of the rapid development of this devastating illness and what it is like to see the person you love be taken away in the most cruel way. Her experience led to what will be a lifelong commitment to the Campaign and supporting work to find a treatment or cure for this disease. Her commitment to this Campaign is part of her legacy to Mark. Nicola has been a career civil servant since 1995.
John Camidge - Fundraising Director
John has first-hand experience of how devastating prion diseases are. An inherited form of prion disease (Gerstmann-Straussler-Scheinker, GSS) runs in his family. It has taken the lives of his grandmother, five of her siblings, two uncles, his mother and more recently his sister Diana who passed away in September 2016. With help from family and friends he set up the Diana Camidge Foundation with the specific objective of raising funds and awareness for the Cure CJD campaign. He has worked in the Marketing industry for many years including roles in Vodafone, Centrica and currently Activate Learning who own Schools and Colleges in the Thames Valley area.
Danny Goldsbrough - Treasurer
Danny’s experience with this disease began when Andy French, his brother in law, started showing some symptoms, but no one could diagnose what the issue was. Previously a fit and healthy 52 year old, he was finally diagnosed in February 2017 but sadly died 4 months later. This experience has driven Danny and his family into fundraising for the CureCJD Campaign. He is determined to do all he can to support work to help find a cure for this unforgiving disease and becoming involved directly with the Campaign is part of his commitment.
Peter Mills - Member
Peter’s daughter Holly was diagnosed with variant CJD in 2003. Peter’s involvement with the MRC Prion Unit at UCL to support future diagnostic and novel treatment is a legacy to her memory. Peter has been a businessman all of his working life and has an active interest in farming.
Charlotte Saigne - Member
Charlotte's brother Frédéric was diagnosed with GSS several years ago. They are both French, he lives in Stockholm and she lives in Barcelona. Doctors in several countries all pointed to the MRC Prion Unit at UCL’s project as the most promising for a cure for the prion diseases. Charlotte’s highest hope for a cure lies in the Cure CJD Campaign. Charlotte has a professional career in the media, entertainment and publishing industries, and has worked as business manager for various European countries. She is currently Director for France, UK and Germany in a major Spanish publishing company.
Jaqueline Burke - Member
Jacqueline first learnt of the work on the development of a treatment for CJD when her brother was diagnosed with CJD. At that stage it was too early in the research for it to help her brother.
She joined the Cure CJD Campaign to help prevent other families having to endure the grief of this devastating illness. Jacqueline is an Assistant Professor in a School of Nursing in Ireland.