Founded in 2005, our aim is to provide support and information for all those affected by cavernoma including friends, family, carers and professionals.
With over 3,500 members in the UK and worldwide, the charity aims to raise awareness of this relatively unknown condition throughout the general public as well as the medical community.
At CAUK we understand how important it is to have the right people in the right positions so we can offer the best help and support we possibly can. Our staff, board and medical advisors are dedicated to helping & supporting our members and their families.
21 hours a week
Wednesdays, thursdays and fridays
Helen is responsible for the day-to-day running of the charity and has overall responsibility for its research, education and support activities. This also includes fundraising, finance, HR and IT/systems. Helen has lived experience of neurological conditions as an Autistic person, and is a parent carer of an Autistic child..
COORDINATOR OF VOLUNTEERS
14 hours a week
Tuesdays and Thursdays
Tracey is responsible for coordinating the charity’s volunteer delivered support services including its helpline (accessible by email and phone), peer-to-peer support and community meet-ups. She also works closely with the Charity Manager to ensure the patient voice is represented in cavernoma related research.
Research & patient info officer
14 hours a week
This role is responsible for leading on the production and distribution of accessible, inclusive and engaging patient information informed by the latest research, and supports the Charity Manager as they lead on the promotion of pre-clinical, clinical and translational research informed by patient needs.
CAUK relies heavily on the advice and support of medical experts in cavernoma. Mr Kitchen, Professor Salman and Sacha Bonsor became patrons of CAUK in 2015.
Professor of clinical neurology and Clinical Director of the Edinburgh Clinical Trials Unit at The University of Edinburgh and Medical Advisor to CAUK.
Consultant Neurosurgeon at the National Hospital for Neurology and Neurosurgery and Medical Adviser to CAUK.
Journalist and author of a book, Dipped Into Oblivion, which chronicles her experience of having a brain haemorrhage and subsequent surgery. She lives in London with her husband and three step children.