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.

Vacancy

Chief Executive
Home-based within the UK
28 hours (including some evening and occasional weekend work)
Actual salary: £35,840 to £38,079
Equivalent full-time salary: £48,000 to £51,000

Click HERE for the Recruitment Pack

We are looking for a new Chief Executive to lead and be an ambassador for the work of CAUK. This is a meaningful and varied role in a small charity where your contribution will be visible. It would suit someone looking for a senior charity role with real purpose, flexibility and a close connection to the community they support.

You will be joining an organisation with a supportive Board of Trustees, a staff team that cares deeply about the community we serve, highly committed volunteers, and strong clinical and research partnerships.

We are in the second year of our five-year strategy, ‘Together For a Cure – 2025 to 2030’, and are making good progress across our priorities. The current Chief Executive is leaving after three and a half years in post to take up a new opportunity, and the charity is in a positive and stable position.

A major focus for the role over the coming years will be supporting delivery of a five-year UK-wide clinical trial starting in August 2026. This study could potentially identify the first medication treatment for cavernoma.

Alongside this, the role will focus on maintaining sustainable income, supporting high quality peer-led services through our Head of Volunteering and Member Services and volunteer team, and continuing to grow CAUK’s reach and awareness, particularly online.

We would particularly welcome applications from people with previous charity management experience, whether within a small charity or in a more senior role within a larger organisation. We are also open to applicants who can demonstrate a strong understanding of the charity sector through trustee, professional or voluntary experience.

This is a home-based role with flexibility, although there will be occasional travel across the UK, typically every 1 to 2 months, including meetings in London.

If you would like an informal conversation about the role before applying, we would be happy to arrange this with the current Chief Executive and/or Chair of Trustees.

Key dates

Applications open: 27 May 2026
Closing date: 9am, 22 June 2026

Stage 1 interviews will be held virtually during the last week of June.
Stage 2 interviews will be held in person shortly afterwards.

How to apply

To apply, please read our Recruitment Pack carefully and then complete our online application form. You will also need to email your CV to us using the contact details provided in the Recruitment Pack.

Please note that applications submitted without both a completed application form and CV will not be considered.

We are unable to accept enquiries or applications from recruitment agencies.

Any questions? Please email admin@cavernoma.org.uk.

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 4,200 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.