Latest News
Annual Conference 2024 – registration is now live
Registration is now open for our 2024 Annual Forum taking place Saturday the 22nd of June from 10:00 to 16:00 via zoom. To secure your
Snowdon Climb for Cavernoma Awareness Month, 1st of June
On the 1st of June 2024, over 35 people will be climbing Snowdon to raise awareness and funds for Cavernoma Awareness Month in June. We
Results of the ‘Cavernomas: A Randomised Effectiveness (CARE) Study’
We’re really pleased to share that the results of ‘Cavernomas: A Randomised Effectiveness (CARE) Study’ have now been published in The Lancet Neurology. This pilot
Latest Blog
“I knew my body better than anyone else. I learned to keep asking questions and always get a 2nd opinion.” Jac’s Cavernoma Story
My name is Jac Sinnott and I’m 39 years old. My cavernoma was located near my thalamus. I was diagnosed in July 2021 after hospitalisation following a bleed. I presented myself to the hospital with persistent symptoms which a couple of different GP practices said were migraines. Initially, my local hospital didn’t know what was causing my symptoms and it took a long time to get answers, especially as we were still in lockdown due to the pandemic.
My most recent symptoms appeared in late June 2021 and they presented as pins and needles down my left side as well as weakness and numbness on that side. I also had visual disturbances. Each episode would last for 30 minutes to an hour.
The Gut – Cavernoma Connection Emulsifiers and More with Dr. Shelley Stevens
Join Dr Shelley Stevens to discuss the gut-cavernoma connection, the impact of emulsifiers & more!
Dr Stevens is a toxicologist, and, being a mother of a child with brainstem cavernoma, Dr. Stevens has a special interest in the gut-cavernoma connection.
Steve Cairns – Recovering Movement Following Stroke & Brain Surgery, a New Perspective
Join host Steve Cairns as he talks about the changing face of Neuro Rehab and his case study with a Multiple Cavernoma patient.