Our Team

Our work is powered by over 50 incredible volunteers, a small part-time staff team, and our dedicated volunteer Trustees, Patrons and Medical Advisory Board. Together, they deliver support, raise awareness, and drive change. Everyone in our staff team, volunteer network and Board of Trustees has a personal connection to cavernoma – bringing lived experience to everything we do.

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.

This role 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.

Robyn is a qualified counselling therapist who has supported CAUK for over six years. She works with a psychodynamic, developmental, trauma-informed and creative approach, and is co-founder of The Connection Space, a Community Interest Company in Derbyshire. We are grateful to Axiom Neuromonitoring whose grant fully funds her role.

Tracey manages CAUK’s volunteer-led support services, including the helpline, peer support and community meet-ups. She also works with the Charity Manager to represent the patient voice in cavernoma research. Her role is kindly supported by the National Lottery Community Fund.

Nicola is responsible for the administration of CAUK’s 4,000 members and volunteers, supporting processes and ensuring records are accurate and up to date. She reports to the Volunteer Manager. Her role is kindly supported by the National Lottery Community Fund.

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.

Our Trustees and Patrons

CAUK is supported by a dedicated group of Patrons and Trustees who help guide and represent our work.

Our Trustees are all volunteers with a personal connection to cavernoma. They give their time to set our strategic direction, oversee finances, and ensure strong governance.

Our Patrons support us through advocacy and representation, helping to raise awareness and amplify the voices of those affected. We are also advised by a Medical Advisory Board made up of leading UK clinicians, scientists and patient advocates.