FINALIST 2026
Cavernoma Alliance UK was approached by filmmaker and fellow cavernoma patient Lucy Gohm, who wanted to help amplify the voices of our community by interviewing people living with cavernoma and sharing their stories. Michael, one of CAUK’s volunteers, kindly took part in 2025 and shared his experience of supporting his wife who lives with cavernoma.
About cavernoma
A cavernoma is a cluster of abnormal blood vessels that looks a bit like a small raspberry. They can appear in the brain or spinal cord and around 1 in 625 people have one. Most never cause problems, but about 25,000 people in the UK do experience symptoms such as bleeds, seizures or other neurological issues.
Treatment depends on the individual and may involve monitoring, neurosurgery or stereotactic radiosurgery. There are currently no medicines that treat cavernoma directly, but research is ongoing, including gene therapy work funded by CAUK. Most cavernomas happen by chance, although about one in five are genetic.
About Cavernoma Alliance UK
Cavernoma Alliance UK (CAUK) was founded by Dr Ian Stuart after he experienced a major cavernoma bleed and found there was no support available. What began as a small volunteer helpline has grown into a national charity with more than 4,200 members and a small staff team supported by volunteers.
Today CAUK provides support, information and community through its helpline, meet-ups, buddying, webinars and annual events. We also champion research and have helped shape national priorities, support clinical studies and fund new gene therapy research at University College London.
Cavernoma Alliance UK is dedicated to supporting individuals and families impacted by cavernoma—a rare and often overlooked condition caused by clusters of abnormal blood vessels in the brain or spine. Our mission is to enhance the quality of life for those affected through comprehensive education, compassionate support, and pioneering research.
We align with the following UN Sustainable Development Goals:
Please register using the form below.
This helps us to stop voting abuse and also enables us to communicate the finalists and winners to everyone who voted. We will not pass this information on to anyone else.