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.

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.

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.

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.

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.

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.