Message from the Chairman

Gillian Turner is retiring from her role as National Coordinator of the UK CJD Support Network at the end of September this year.

I first met Gill at the conference organised by the then recently formed UK CJD Support Network at the University of Warwick in 1997. The Alzheimer’s Disease Society had obtained funding, from the Department of Health, for a National Coordinator of a CJD Support Network. Gill responded to their advertisement of the role and had duly been appointed in December 1996. This was a time of enormous general and media interest in CJD because of BSE and the identification of the first individuals with vCJD. I had undertaken research into CJD in the early 1980s and had just returned to the subject, in the same December, in the wake of the BSE/vCJD crisis. 

I remember being greeted enthusiastically by her as I entered the Conference Centre and she was kind enough to mention that she had found one of my earlier general publications on CJD useful when she was learning about the subject. My present journey in the world of CJD therefore coincided with hers and I have witnessed personally the great contributions she has made over the last 23 years.

Gill has been the National Coordinator throughout this period, from the beginning, when the Network was under the umbrella of the Alzheimer’s Disease Society, to its present position as an independent Charity. She developed the Network in many ways with the establishment of annual Family Conferences, a 24 hour Help-Line, a regular Newsletter and the provision of Care Grants for families.  She secured further funding of the Network from the Department of Health up to 2003 and, since then, has been active in attracting funding from public donations. 

In 1997, Gill had the idea of establishing an Annual National CJD Day and CJD Awareness Day (12^thNovember) has become recognised internationally. Under her coordination, the UK CJD Support Network has been, in many ways, a model for CJD support organisations in other countries and Gill contributed often to international events and collaborations. In her Network role, Gill has attended a number of advisory committees, expertly representing the interests and views of those personally affected by prion diseases, who otherwise might not have had so much of a voice.

The years that immediately followed her appointment were very turbulent and demanding ones, as those of us who lived through them can testify. Gill managed to steer the Network through them with skill and good humour, always with the key aim of supporting people affected by disease and surrounding events, in any way possible. 

While one can list all her prominent successes and the fact that she was awarded an MBE for her work, I am sure that her most vital contributions are those individual moments of empathy and practical support that so many people will have experienced over these many years. A great number of people have good reason to be grateful for the huge amount of time and effort she has put into the CJDSN. I write this as my personal acknowledgement and on behalf of the whole Network Management Committee. 

Richard Knight

Chair, CJDSN Management Committee

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