Helloooooo!

We are a UK Charity supporting those affected by brain or spinal Cavernoma through information, retreats, and free counselling.

Our charity was created  with a deep understanding of how overwhelming a diagnosis can feel. Whether you’re newly diagnosed, supporting a loved one, or further along in your journey, you’ll find kindness, connection, and practical support here.

Founded in 2018 by Simona Stankovska, MBE, we are a community built on lived experience who understand what you’re going through, and we’re here to make sure you never feel alone.

Find out more

A Cavernoma (also called a cavernous malformation) is malformation consisting of irregular thick and thin-walled leaky blood vessels located within the brain, lacking intervening brain tissue, large feeding arteries, or large draining veins.

Cavernomas can occur in the brain, spinal cord and rarely, the dura. On a scan, they often look like raspberries, blackberries, or popcorn, hence why our logo is the raspberry.

Cavernomas can vary in size, from millimeters to centimeters. The bigger the cavernoma, the more disruption it can cause. This is because the blood vessels can leak small amounts of blood into the surrounding brain and spinal tissue, therefore, the larger your cavernoma, the bigger the potential bleed. When a bleed occurs it may cause symptoms such as seizures, headaches, or changes in movement, vision, or speech.

More information

We are a community who offer retreats, free counselling, help with benefits, and holistic support – services that care for the whole person, not just the medical side. Alongside this, we are developing a Cavernoma and Relationships leaflet, designed to support couples and families. It will offer practical advice on communicating more effectively, managing emotional challenges together, and finding ways to strengthen your bond, even in the face of uncertainty.

Raspberry Day was set up in 2019 to raise awareness for Cavernoma. It is observed on the third Friday of September.

We encourage members, families, and supporters to wear raspberry colours, share their stories, and take part in fundraising activities. Each action – no matter how big or small – helps us shine a light on cavernoma and provide vital services such as free counselling, family retreats, and community events.

What started with an award from the European Federation of Neurological Associations (EFNA) in our very first year has now grown into one of the most important events in our calendar. Together, we’re making sure cavernoma is recognised, talked about, and better understood.

Whether you’re someone who has been diagnosed with cavernoma, support someone with cavernoma, or want to learn more – join us to be part of something that truly makes a difference.

As a member, you’ll have access to our support services; a connection with others who understand life with cavernoma; support for carers, parents, and loved ones; and be part of a place in a small but mighty community that’s raising awareness and pushing for change in how cavernoma patients are supported and treated.

Join our community today