The Cavernoma Society was founded in 2018 by Simona Stankovska, MBE, after her own diagnosis and surgery for cavernoma. Simona quickly realised that while information was out there, the kind of real, personal support she needed – and knew others would benefit from – was missing.
She had been a trustee at another cavernoma charity during her treatment, but felt there was so much more that could be done to help people truly live with cavernoma. She dreamed of something different: a place that offered retreats, free counselling, help with benefits, and holistic support – services that care for the whole person, not just the medical side.
So, together with Caroline Leonard (Ireland) and Carolyn Nichols (UK) – both of whom had also been through cavernoma surgery and understood the journey first-hand – the Cavernoma Society was born. We became a registered UK charity in July 2019.
From the very start, we wanted to put cavernoma on the map. Caroline helped us get coverage in the Republic of Ireland, we’ve taken part in international neurology conferences (including Dublin), and we’ve proudly represented cavernoma patients at global forums. We’re always seeking opportunities to collaborate, raise awareness, and support research.
In our first year, we won an award from the European Federation of Neurological Associations (EFNA), which helped us launch Raspberry Awareness Day – now a central part of our work in raising the profile of cavernoma.
We may be a small charity, but we have a big heart. We’re forward-thinking, constantly evolving, and every penny we raise goes straight back into supporting our members – because we have no paid employees, only people who care deeply and want to make a difference.
Above all, we are a community built on lived experience. We understand what you’re going through, and we’re here to make sure you never feel alone.
