I am James Elsby and will be running the London Marathon on 27 April 2025, helping to raise funds for the Cavernoma Alliance UK. I was lucky enough to secure a ballot entry but just wanted to support this great cause.

Like most people, I had never heard of a Cavernoma. Following a seizure with no warning, an MRI scan identified a Cavernoma in my brain.

Whilst for me day to day living is currently almost unchanged, others are not so fortunate. The Cavernoma Alliance was so helpful to me in providing information and guidance.

Very little is known about this condition, which is why I feel the research work of the Cavernoma Alliance UK is so important.

Your support for Cavernoma Research would be very much appreciated.

About Cavernomas

Cavernomas look like raspberries and are found in the brain and spinal cord.  They're formed of abnormal blood vessels with thin leaky walls, which can bleed at any age without warning.  1 in 625 people are thought to have a cavernoma, affecting around 108,000 people in the UK.

Most people with a cavernoma won’t experience symptoms however around 25,000 people in the UK do, making symptomatic cavernoma a rare condition.

 Symptoms can include haemorrhages, seizures and other neurological problems.  

Treatment involves 'wait and see', neurosurgery or stereotactic radiosurgery.  Whilst medications are not currently available to treat cavernoma, this is an area of active research with Cavernoma Alliance UK funding gene therapy research at UCL.

In most cases, there's no clear reason why a person develops a Cavernoma.

About Cavernoma Alliance UK

Cavernoma Alliance UK was founded by Dr Ian Stuart after his life changed overnight following a devastating cavernoma bleed.  It is a national charity with over 4,000 registered members and 4 part-time staff (equivalent to 1.5 people).

Volunteers are still at the heart of the charity, with over 50 volunteers running the helpline, buddying, meet-ups and online chats.  Alongside support activities, the Alliance provides information through it’s website, social media, monthly webinars and annual conference; all of which is approved by its Medical Advisory Board.  

The Alliance also promotes research and was a partner in the first clinical trial of neurosurgery and stereotactic radiosurgery for cavernoma funded by the National Institute for Health and care Research. It was proud to announce in 2024 the start of novel gene therapy research at University College London.