Cavernoma Alliance UK - CAUK

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Cavernoma Alliance UK - CAUK Cavernomas look like raspberries in the brain and spine. Most cause no symptoms, but about 1 in 2700 people have bleeds, seizures or neurological deficits.

Cavernoma Alliance UK supports those affected and promotes research. Charity no. 1197257. Our website provides:

* Information about the illness with in-depth articles on topics of special interest
* Networking and support opportunities
* Updates on research findings
* Research study enrollment information

🏔️ We did it! 💛Today, nearly 80 members of the cavernoma community came together to take on Snowdon/Yr Wyddfa and launch...
06/06/2026

🏔️ We did it! 💛

Today, nearly 80 members of the cavernoma community came together to take on Snowdon/Yr Wyddfa and launch Cavernoma Awareness Month 2026.

After months of training and fundraising, it was fantastic to see so many people coming together to support one another and celebrate a shared achievement.

A huge thank you to everyone who climbed, volunteered, donated and supported the event from near and far.
Together, you’ve now raised more than £23,655 for the cavernoma community. 🌟

Most of all, congratulations to our incredible climbers. You should be enormously proud of what you’ve achieved today.

This is just one photo from the day. We’ll be sharing many more over the coming week once everyone has had a chance to send theirs in. 📸

Please join us in congratulating everyone who took part in the comments below. 👏💛

💛 I am a mum, wife and daughter.I am cavernoma. - Georgina LeggI love making miniatures, photography and music 📸🎵I have ...
06/06/2026

💛 I am a mum, wife and daughter.
I am cavernoma. - Georgina Legg

I love making miniatures, photography and music 📸🎵
I have a brainstem cavernoma that has bled three times 🧠

Volunteers’ Week 2026This Volunteers’ Week, we want to recognise and thank the incredible volunteers who help make our w...
05/06/2026

Volunteers’ Week 2026

This Volunteers’ Week, we want to recognise and thank the incredible volunteers who help make our work possible.

Many of our volunteers bring lived experience, using their knowledge, understanding and compassion to support others on their journey. By sharing their time, insight and encouragement, they help create a community where people feel heard, valued and supported.

Your experiences, voices and commitment make a real difference every day. Thank you for everything you do and for the positive impact you have on the lives of so many people.

💜 Happy Volunteers’ Week and thank you for being such an important part of our charity.

🏔️ Nearly 80 people. One mountain. One community. 💛Tomorrow, nearly 80 incredible members of the cavernoma community wil...
05/06/2026

🏔️ Nearly 80 people. One mountain. One community. 💛

Tomorrow, nearly 80 incredible members of the cavernoma community will come together to take on Snowdon/Yr Wyddfa and officially launch Cavernoma Awareness Month 2026.

Some are living with cavernoma. Some are supporting a loved one. Some are marking the anniversary of surgery. Together, they’ve already raised more than £17,795 for the cavernoma community.

After months of training and fundraising, it’s finally time to take on the highest mountain in England and Wales.

Tomorrow, we’ll be cheering every step of the way. 🙌

👇 Please help us give Team Cavernoma a huge boost by wishing them luck in the comments below.
Let’s show them the strength of the cavernoma community! 💛

If you’d still like to support the challenge, there’s still time to donate:
https://www.justgiving.com/team/snowdon-climb-for-cavernoma-2026

🎭 I am a theatre lover and proud mum.United by cavernoma. – Helen and JakeAfter navigating the challenges of cavernoma t...
05/06/2026

🎭 I am a theatre lover and proud mum.
United by cavernoma. – Helen and Jake

After navigating the challenges of cavernoma together, we’ve found strength in the things we love most. I’ve always loved the magic of the theatre, while Jake enjoys the freedom and confidence he gets from parkour ✨

Cavernoma has changed parts of our lives, but it hasn’t stopped us from finding joy, supporting one another, and embracing new experiences together 💛

We connected with the Cavernoma Alliance UK community for support and encouragement, and it’s helped us feel less alone on this journey.

🧠 Recently diagnosed with cavernoma?Being diagnosed can bring a lot of questions.❓ What does this mean for me?❓ Will it ...
05/06/2026

🧠 Recently diagnosed with cavernoma?

Being diagnosed can bring a lot of questions.
❓ What does this mean for me?
❓ Will it bleed?
❓ Should I be worried?
❓ Is anyone else going through this?
❓ Why do I feel so overwhelmed?

If any of those questions sound familiar, you’re not alone.
We’re running a free online support group for people who have been recently diagnosed with cavernoma, led by a professional therapist.

💛 You don’t have to be in crisis.
💛 You don’t have to share if you don’t want to.
💛 You can simply listen.

Many people tell us that one of the most helpful things is meeting others who truly understand what it’s like to live with cavernoma.

📅 11 Jun, 25 Jun, 9 Jul and 23 Jul
🕢 7:30pm–9:00pm
💻 Online
💛 Free to attend
🇬🇧 Open to UK-based CAUK members aged 18+
The group starts next week and we need a few more people to register for it to go ahead.

📧 To register, email: [email protected]

🌸 I live in Melbourne, Australia. I am Cavernoma. DebbiI’m Debbi, and I live in Melbourne, Australia.I have a pontine ca...
04/06/2026

🌸 I live in Melbourne, Australia. I am Cavernoma. Debbi
I’m Debbi, and I live in Melbourne, Australia.
I have a pontine cavernoma in my brainstem that has bled.
Living with cavernoma has brought challenges I never expected, but I continue to face each day with strength and hope 💛
Cavernoma is part of my journey, but it does not define who I am ✨

💛 Cavernoma and mental health 💛This Cavernoma Awareness Month, we’re shining a light on something that doesn’t always ge...
03/06/2026

💛 Cavernoma and mental health 💛

This Cavernoma Awareness Month, we’re shining a light on something that doesn’t always get talked about enough: the impact of cavernoma on mental health.
When people think about cavernoma, they often think about bleeds, seizures, surgery or physical symptoms.
But for many people, the emotional impact can be just as significant.

🧠 The uncertainty
💬 The waiting
💛 The fear of another bleed
🌧️ The worry about what the future might hold
🤝 The feeling that nobody around you really understands

In a recent CAUK survey, around 1 in 2 people told us that cavernoma has affected their mental health.
What particularly stood out was that this wasn’t limited to people experiencing symptoms.
For some people, the greatest challenge wasn’t what cavernoma was doing to them physically, but the uncertainty of living with a condition that can feel so unpredictable.

Throughout June, we’ll be sharing stories, information and support for everyone affected by cavernoma, with a special focus on mental health and the importance of talking about it.

But today, we’d simply like to start a conversation.
💬 Has cavernoma affected your mental health?

If you’re comfortable sharing, we’d love to hear your experiences in the comments.
Your story may help someone else feel a little less alone.

😊👨‍👩‍👧‍👦 I love spending time with my friends. United by cavernoma. - Adalynn-Grace and her familyAdalynn-Grace is 9 yea...
03/06/2026

😊👨‍👩‍👧‍👦 I love spending time with my friends. United by cavernoma. - Adalynn-Grace and her family

Adalynn-Grace is 9 years old and has multiple cavernomas in her brain.

She is one of six members of her family living with multiple cavernomas. Although doctors believe the condition is genetic, testing has not yet identified one of the three known cavernoma genes.

Adalynn-Grace is outgoing, full of personality and loves spending time with her friends ✨

Cavernoma is part of her family’s journey, but it doesn’t define who she is 💛

🌟 Register now: brainstem cavernoma webinar 🌟This is a rare chance to hear directly from Professor Helmut Bertalanffy, o...
02/06/2026

🌟 Register now: brainstem cavernoma webinar 🌟

This is a rare chance to hear directly from Professor Helmut Bertalanffy, one of the world’s most experienced brainstem cavernoma surgeons.

With over 30 years’ experience and more than 370 brainstem cavernoma operations, Professor Bertalanffy is internationally recognised for his work in this highly specialised field.

🧠 Recent Strategies in Surgically Treating Brainstem Cavernoma
📅 Wednesday 10 June 2026
🕢 7:30pm UK time
🔗 Register now: https://bit.ly/CAUKwebinarJun26

For anyone affected by a brainstem cavernoma, this is a webinar not to miss.
Professor Bertalanffy will share insights from decades of surgical experience, with time for live questions at the end.
Places are free, but registration is required.

Address

Watlington

Opening Hours

Monday 09:00 - 17:00
Tuesday 09:00 - 17:00
Wednesday 09:00 - 17:00
Thursday 09:00 - 17:00
Friday 09:00 - 17:00

Telephone

+441305213876

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