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 4,000 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.
CEO / Charity Manager
25 hours a week
Wednesdays, thursdays & 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 works closely with the Board of Trustees and Medical Advisory Board to inform the charity’s operations.
Events and office assistant
7 hours a week
thursdays & fridays
Batool is responsible for the administration of events alongside general office activities and reports to the Charity Manager. Events include the Annual Conference, Information Webinars, Snowdon Climb for Cavernoma, Cavernoma Awareness Month, Autumn Lecture and any other events organised by CAUK.
counselling THERAPIST
VARIABLE HOURS
Robyn is a qualified counselling therapist and has been our therapist for over 6 years. She approaches therapy through a psycho-dynamic, developmental, trauma-informed and creative perspective. She is the co-founder of The Connection Space, a Community Interest Company based in Derbyshire.
Volunteer manager
17.6 hours a week
Tuesdays & Thursdays
Tracey is responsible for managing 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.
Member SUPPORT ASSISTANT
7 hours a week
Tuesdays & Thursdays
Nicola is responsible for the administration relating to the support of the charity’s 4,000 members and volunteers, and reports to the Volunteer Manager. This roles involves supporting the membership and volunteering processes, ensuring all admin is accurate and up to date.
social media consultant
4 hours a week
Jade is an experienced social media and marketing consultant, who leads on the charity’s social media activities across Facebook, Instagram and LinkedIn. Jade is responsible for leveraging the charity’s social media platforms to increase awareness and improve understanding of cavernoma.
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. Alongside our patrons we also have an Advisory Board comprised of the UK’s leading cavernoma clinicians, scientists and patient advocates. To find out more about our advisors, please click here.
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.
PO Box 366
Watlington
Oxfordshire
OX10 1GF
Registered Charity 1197257
Scottish Charity SC048458