THE COMMITTEE
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
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.
Hannah Sonnex - Finance
Hannah began fundraising for the Cure CJD Campaign after her father was diagnosed with sporadic CJD in December 2017. He very sadly passed away just 5 weeks later. Unaware of what CJD was prior to her fathers diagnosis, it soon became very apparent how brutal and devastating this disease really is. With no cure or treatment available, Hannah felt passionately that she needed to try and make a difference and raise money for such a worthwhile cause. Anyone diagnosed with CJD deserves the chance to fight and survive this disease, so she will continue to raise awareness and fundraise for the Cure CJD Campaign, with the hope that a treatment can be found.
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.
Danny Goldsbrough - Member
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.
Laszlo Kiralyfi - Member
Laszlo’s wife Carole died at the end of April 2019, within 2 months of being diagnosed with sporadic CJD. During this time she was one of the patients to receive the experimental treatment PRN100. Carole showed enormous courage, she acknowledged the ground breaking work and the commitment displayed by the team at the MRC Prion Unit at UCL and she was keen to play her part in supporting it. This led Laszlo to become involved in the campaign and he hopes a cure or treatment can be found in the near future. Laszlo has been retired since 2005. Previously he founded and developed several companies, principally in Europe, East Asia and the Americas.
Pauline Lincoln - Member
Pauline became aware of the MRC Prion Unit at UCL and its work when her children’s father was diagnosed with an inherited form of prion disease (Gerstmann-Straussler-Scheinker, GSS) in 2010. The disease took his life, as well as his mother's and two of his siblings. This led to Pauline's commitment to the Campaign and supporting the vital research into prion disease, in the hope that future generations do not have to face what her family have.
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 became involved in the Cure CJD Campaign after her brother Frédéric was diagnosed with Gerstmann-Straussler-Scheinker (GSS) in 2015, after first beginning to feel symptoms in 2012. He passed away in January 2020. During his long fight against this cruel degenerative disease he never gave up hope for a cure. Charlotte will continue to be a part of the Campaign to support the MRC Prion Unit at UCL to find a treatment or cure for prion diseases. Charlotte is a French national and is based in Barcelona as a Manager for France, the UK & Germany in a major Spanish publishing company.