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 2500 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.
Jo joined CAUK in 2018 as Caverfamilies coordinator, later growing her role to include adult & peer support.
Sian has worked for CAUK on a part time basis since 2016, following her retirement from a role within School administration and finance
Member Support Coordinator
Tracey found CAUK after her brainstem cavernoma bled in 2008. Working at first as volunteer coordinator for the caverbuddies scheme and since joining the team as staff.
Angela brings with her a wealth of experience and knowledge and a great understanding of how to support people affected by cavernoma.
Online Engagement Coordinator
Ailsa worked in logistics and supply chain management until diagnosis of a symptomatic cavernoma in 2015. She now works part time for CAUK in charge of all our social media.
IT & Website Support
Michael is the carer of a partner with a symptomatic cavernoma. He started as our volunteer website maintainer, and since joined the team to oversee all CAUK’s IT needs.
David is the carer of a partner with symptomatic cavernoma. He is a retired Chief Executive of a Research NGO and Research cell biologist. You can learn more about David on his Science of Cavernoma blog.
Mark is the father of a daughter with Cavernoma. He is the retired headteacher of a large comprehensive school and CEO of a multi-academy trust of ten schools.
Roxanne has symptomatic Cavernoma. She is a retired School teacher.
Anita works as a Clinical psychologist with interest in Cavernoma patients.
Jane has symptomatic cavernoma. She is the Chief Financial Officer of a government Executive Agency and a Chartered Management Accountant with current responsibilities for governance including fraud and whistleblowing.
Sharon has three young children with cavernoma and is an active member of our CaverFamilies group. She works as Operational Quality Manager for Pharmaceutical company with responsibility for ensuring product quality, safety and efficacy during import and release process.
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.