Up Coming Events
Every month we host a series of regular online events for all those affected by cavernoma. Meet, chat and share experiences with others who can really understand you! We also welcome guest speakers throughout the year to discuss topics related to cavernoma – keep an eye on our calendar for more info.
Monthly Events
Our online monthly events and webinars take place on Zoom. Not used Zoom before? Click here for a guide on using Zoom.
- Community Chat
11:00 on the 2nd Thursday of every month (except August)
A great opportunity to meet, chat & share experiences online with others affected by cavernoma.
Click here to register
- Therapeutic Group
19:30 on the 2nd Thursday of every month (except August)
Join a therapist knowledgeable about cavernoma for small group therapy online with monthly themes.
Click here to register
If you’re in need of support in-between support groups please get in touch with our helpline here. In addition to the information of this website you may also find it helpful to visit the website of our US sister organisation Alliance to Cure.
Volunteer Training
Over 50 volunteers help to run our helpline, buddying, meet-ups and more! If you’d like to become a volunteer sign-up for one of our 2025 Volunteer Training Sessions below and complete our short Volunteer Registration Form here. Any questions, please email Tracey@cavernoma.org.uk.
Please note: Volunteering is only available to residents of the UK, Channel Islands and the Republic of Ireland.
One-off Events
Online Webinar: Living with Cavernoma: How I Used the Grief Recovery Method to Heal and Move Forward
19:30-20:30 on Wednesday the 23rd of April via Zoom
Grief is a common yet often overlooked response to a Cavernoma diagnosis. Many in our community share feelings of loss—whether due to changes in health, lifestyle, or uncertainty about the future. While challenging, grief is a natural and valid reaction to life-altering experiences. Join us for a webinar with Ben Brady, a Grief Recovery Method Specialist who lives with symptoms related to a brainstem Cavernoma. Diagnosed in 1999, Ben has firsthand experience of the physical and emotional effects of surgery and life with Cavernoma. Previously an audio engineer and Christian minister for over 20 years, he now volunteers for CAUK, helping others through the Grief Recovery Method. In this session, Ben will explore why grief is a valid response to life changes, how the Grief Recovery Method can help, common myths around grief, and practical steps for emotional healing. The session will include a 25-30 minute talk followed by a live Q&A.
In-Person Lecture: Cavernoma management with Professor Diederick Bulters
11:00-13:00 on Friday 16th May 2025 at Southampton General Hospital
Join us for an insightful lecture on cavernoma management with Professor Diederik Bulters, a leading Consultant Neurosurgeon at Southampton General Hospital and Professor of Neurosurgery at the University of Southampton. Specializing in vascular neurosurgery, Professor Bulters has extensive experience treating cavernomas, aneurysms, and other complex neurological conditions, with a research focus on neurovascular diseases and innovative surgical techniques. This lecture will include a 40-minute talk, followed by a live Q&A, offering a unique opportunity to gain expert insights and ask questions directly.
Virtual Snowdon/Yr Wyddfa Climb – Take on the Challenge Anywhere! 🌍🏔️
- Walk or hike locally
- Climb stairs at home
- Complete it all at once or over multiple days – it’s up to you!
Join us anytime during Cavernoma Awareness Month in June or on Cavernoma Day (14th June) to make an impact!
What you’ll receive
- A CAUK t-shirt and wristband
- A welcome pack with all the details
- A fundraising medal and certificate
- The chance to be featured on our social media
For emotional and practical support please contact us, please see our contact page