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  • CJDSN National Coordintor Gill Turner retiring

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Latest News

CJDSN National Coordintor Gill Turner retiring

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 (12thNovember) 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

To go to all Latest News items please click here

 

Coronavirus and the CJD Support Network

 

Service as normal
We would like to assure everyone that the CJD Support Network services continue to be available during this time of unprecedented disruption throughout the World.

For the latest information about our 2020 Family Day Meeting, please click here (this will open in a new window)

As well as all our other services our free helpline is always available on 0800 774 7317 .

Through our helpline, we provide information and support 24 hours a day and of course all our information booklets and newsletters are available to download from our website, from which you can also contact us by online email. For any of these services, please use the menu on the left.

To see how the Coronavirus and COVID19 situation has affected the service provided by the National CJD Research and Surveilance Unit in  Edinburgh, please click here to visit their website.

Similarly to see a statement regarding Coronavirus and COVID-19 from the National Prion Clinic at UCL - London please click here to vsit their website.

Finally may we express our best wishes to everyone, to keep yourself and your families safe and healthy during this unique and worrying time.

PLEASE, PLEASE minimise contact with others and follow Government guidelines

 

Donations

A particular thank you to everyone who is continuing to support the CJD Support Network through your donations, despite it not be possible for you to take part in, or organise fundraising events.

We would also like to say how sorry we are, to those of your who have had your planned events cancelled due to the Coronavirus epidemic. We hope that you may be able to reinstate these when life returns to normal.

We rely completely on public donations for our funding, but along with most charities, due to social isolation, we have seen a reduction in these, so it is brilliant that so many of you are continuing to make donations even if your fundraising events have been postponed.

If you would like to make a donation to the Network, please go to our How to donate  page or the How you can Help Us menu item on the left.

Thank you all so much. 

To go to all Latest News items please click here

CJD Support Network selected as a Core Participant in the Infected Blood Inquiry

The CJD Support Network has been selected as a 'Core Participant' in the Infected Blood Enquiry

To find out more about the Inquiry please click here

To go to all Latest News items please click here

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News and Events

  • Coronavirus and the CJD Support Network

    March 27, 2020
      Service as normalWe would like to assure everyone that the CJD Support Network services cont... Read More...
  • CJD Support Network selected as a Core Participant in the Infected Blood Inquiry

    February 08, 2020
    The CJD Support Network has been selected as a 'Core Participant' in the Infected Blood Enquiry To ... Read More...

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