The CJD Support Network Management Committee is made up of individuals with a personal or professional interest in CJD. We work to advance the mission and aims of the network, in the interest of those we support. The below diagram shows our committee links with both the National CJD Research & Surveillance Unit (Edinburgh) and the National Prion Clinic (London).Mapping the Company-3.png

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National coordinator, Beth Marsh
 first joined the Network after her dad passed away with Sporadic CJD in 2016. With a background in mental health and personal experience of the disease, she is committed to supporting those affected by all forms of CJD and those at increased risk. 

 

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Chair, Prof Richard Knight, 
is a clinical neurologist with a special interest in CJD that started in 1982. Currently, he is a Professor of Neurology at Edinburgh University, based at the National CJD Research and Surveillance Unit. Richard has a long standing relationship with the UK CJD Support Network, as well as CJD support organisations in the US and Australia. 

Anita PhotoSecretary, Anita Tipping lost her son David to Iatrogenic CJD when he was 24 years old. She has been involved with the CJD Support Network for over 20 years. The ethos of giving people space to talk, listen and being there for them at their most vulnerable is what first struck a chord for her. 



Andy PhotoTreasurer, Andy Tomaso lost his mother Carmelina to genetic CJD in 2007. The support the Network gives to patients and their families is his motivation for being involved in the committee, as he remembers the feelings of shock and isolation when his mum was diagnosed. 



Simon PhotoProf. Simon Mead is a Neurologist with a special interest in CJD. He is now a consultant and Clinical Lead of the National Prion Clinic based at the National Hospital for Neurology and Neurosurgery, University College London Hospital.



Margaret PhotoMargaret Leitch is the National CJD Care Coordinatory and a Senior Nurse who has been based at the National CJD Research and Surveillance Unit in Edinburgh since 2000.




Kate PhotoDr Kate Dahill joined the Network after losing her Auntie to Sporadic CJD in 2012. Kate set up the Network's Facebook group and it is important to her that we create a supportive community where those affected by CJD can find others to talk to who are or have been in a similar situation. 



Annette PhotoAnnette Beal works in a care home and joined the CJD Support Network after losing her husband to Sporadic CJD in May 2017.

 




Brian PhotoBrian Marsden first joined the Network in 2017 after his wife Ann passed away with Sporadic CJD. He is a retired accountant and joined the CJD Support Network committee to meet other people in a similar position with shared experiences.