Cambridge CADASIL meeting 2019

A day for patients and their families and friends

The third highly successful CADASIL meeting was held on Monday 10th June at the Clifford Allbutt Building Lecture Theatre at Addenbrooke's Hospital, Cambridge. The first session focused on the cognitive and behavioural aspects of CADASIL with a guest talk from neuropsychologist Alexa McDonald featuring discussing highly useful strategies for coping with these problems, and a presentation from medical student Sam Moore highlighted our increasing understanding of the problem of fatigue in CADASIL and the need for future research. 

 

Professor Markus and Jessica Walsh gave an update about ongoing research work, before CADASIL Support UK trustees Karen and Chops Carter gave talks about the stages of coming to terms with CADASIL and the excellent work of the charity. The final session included a discussion by genetic counsellor Heather Pierce about if and when an unaffected family member should be tested, disspelling some of the myths about testing. Phil Jones gave a personal and very well-received talk about his experience with CADASIL and the insights gained from tracing the family tree back several generations. 

 

Please see here for a full report of the event! 

 

Slides for each of the talks can be downloaded below: 

Brief Introduction into CADASIL - Hugh Markus

Managing Cognitive Symptoms in CADASIL - Alexa McDonald

Fatigue in CADASIL - Sam Moore

What's new in CADASIL research? An overview - Hugh Markus

Are blood vessels leaky in CADASIL? - Jessica Walsh

Introduction to CADASIL Support UK and plans for funding a CADASIL studentship - Chops Carter

What happens when you are initially diagnosed and how to deal with it? - Karen Carter

Should an unaffected family member be tested for CADASIL - what should I consider? - Heather Pierce

CADASIL - a family perspective - Phil Jones

 

Thanks to the research and administrative staff who helped to put on a very successful day. We look forward to welcoming you back to Cambridge for the next meeting and details will be available early next year.