Cavernoma Alliance UK - CAUK

Home
Cavernoma Alliance UK - CAUK

Call Website

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

15/10/2026

We know how valuable it is to hear real stories from our community. They raise awareness, offer understanding and remind others affected by cavernoma that they are not alone.

This week, Luis Eduardo Gil from Mexico shares his experience of living with a cavernoma. After completing the 2023 Berlin Marathon, an unexpected seizure led to the discovery of a cavernoma in his left temporal lobe.

“Running has always been my passion, but after completing the 2023 Berlin Marathon, my journey took an unexpected turn. Following a sudden seizure, doctors discovered a cavernoma in my left temporal lobe.
Returning home to Mexico meant adjusting to a new reality, but with the support of my family and friends, I slowly returned to the sport I love. When my seizures returned this past June, I made the decision to go ahead with surgery.
While researching the procedure, I discovered Cavernoma Alliance UK (CAUK). Reading their resources and other people’s stories gave me something I needed most – the reassurance that I was not alone.
Although facing surgery is daunting, I choose to focus on gratitude, keep training and continue working towards my dream of completing the World Marathon Majors . I hope that by sharing my story, I can encourage others and help even one person feel less alone.”

Thank you, Luis, for sharing your story and helping raise awareness of cavernoma. We’ll be cheering him on as he takes on the TCS NYC Marathon this November and look forward to supporting him on his TCS London Marathon April 2027 fundraising journey for CAUK.

Would you like to share your story too?

You can do so anytime using our online form:
https://bit.ly/CavernomaStories

Most cavernomas are symptom free – around 1 in 625 people in the general population.
A smaller number are symptomatic – around 1 in 2,700 – and symptoms can vary greatly.

These stories reflect individual experiences.

14/10/2026

Today, our Founder, Dr Ian Stuart, and Chief Executive, Victoria Wareham, attended the Society of British Neurological Surgeons Annual Conference! 🧠

Raising awareness of cavernoma among healthcare professionals is an important part of CAUK’s work.

By connecting with clinicians, we want to help ensure that more people affected by cavernoma are signposted to CAUK for information, advice and support from the point of diagnosis.

We’re also working to build referral pathways with other charities supporting people affected by haemorrhages, seizures and neurological difficulties.

Through these connections, we hope more people will find the support they need, when they need it. ❤️

UnitedByCavernoma

13/10/2026

🎉Cavernoma Alliance UK is delighted to announce its involvement in a new UK-wide clinical study.🎉

Doctors and researchers at the University of Edinburgh and University Hospital Southampton will lead a new £3.5 million UK-wide clinical study called CARE-Aspirin.
The study will investigate whether aspirin benefits people with brain cavernoma.

This innovative, multidisciplinary project brings together leading institutions, researchers and people affected by cavernoma to address an important gap in treatment options.

Although only people with brain cavernoma will be eligible to take part in the study, we hope the findings will help us build a better understanding of cavernoma more broadly.
We want everyone affected by cavernoma, whatever its type or location, to know that their experiences matter and that progress in research is important to them, too.

Recruitment for the study is expected to begin in August 2027. In the meantime, you can read more about CARE-Aspirin on our website - https://cavernoma.org.uk/care-aspirin/

Victoria Wareham, Chief Executive of Cavernoma Alliance UK said:
“The launch of CARE-Aspirin marks an important milestone for the cavernoma community in the UK and beyond. For years, people affected by cavernoma have had limited treatment options, making research into potential treatments particularly important. While we don’t yet know what the trial will show, we are incredibly proud to be working in partnership to support its design and delivery. In particular, we are committed to ensuring that the voices and experiences of those living with cavernoma are at the heart of the study.“

12/10/2026

“Serenity comes when you trade expectations for acceptance.”

No one expects to be diagnosed with cavernoma, and coming to terms with that can be really hard. Hard to navigate, hard to adapt, and hard to accept.

Acceptance looks different for everybody. For some, it comes gradually; for others, it takes much longer. For some, the journey feels smooth, while for others, it can be full of twists and turns.

There’s no right or wrong way to feel, and no set timeline for finding your way forward.

Be kind to yourself as you navigate the shift from ‘this is what I thought life would be’ to ‘this is what my life is’. ❤️

10/10/2026

🌍 World Mental Health Day | Living with Cavernoma

Today, on World Mental Health Day, we’re thinking about the mental and emotional impact of living with cavernoma. ❤️

Living with cavernoma can bring uncertainty, difficult decisions and changes to everyday life.

For some people, the emotional impact of diagnosis can be significant. The uncertainty of ‘wait and see’, adapting to symptoms such as seizures, or going through surgery can all affect how we feel.

It’s okay to feel anxious, overwhelmed or vulnerable, and these feelings are common among the cavernoma community. They can be a natural response to everything someone is experiencing.

Mental health is part of our health too.

This World Mental Health Day, let’s help raise awareness of the emotional impact of cavernoma, so that no one has to struggle alone. 🩷

Share this post and help us spread the word about cavernoma and its impact on mental wellbeing.

UnitedByCavernoma CavernomaCommunity

09/10/2026

🦋 What an incredible Butterfly Run! 💛

A huge THANK YOU to everyone who took part in the Butterfly Run 2026 in support of Cavernoma Alliance UK.

In the beautiful October sunshine, six fantastic participants of all ages took on the challenge as part of Team CAUK. 🦋

Our team represented different experiences from across the cavernoma community – with some personally affected by cavernoma and others taking part in support of a family member. What brought everyone together was a shared determination to raise awareness and support others affected by cavernoma. 💛

We’re incredibly grateful to each of our participants for taking on the challenge, raising funds and helping to spread awareness along the way.

Together, our Butterfly Run team raised an amazing £1036 for Cavernoma Alliance UK – helping us continue to support people affected by cavernoma and their families.

And, of course, a huge thank you to everyone who donated, shared a fundraising page, cheered from the sidelines or supported our participants throughout their journey.

Congratulations Team CAUK – you did it! 🎉🦋

08/10/2026

What’s life really like after a cavernoma diagnosis?

Next month, we’ll be shining a spotlight on your stories and experiences as we host a special webinar focused on the lived experience of spinal cavernoma.

Join us as three members of the CAUK community share their personal experiences – from diagnosis and symptoms to treatment options, recovery and the impact of living with a diagnosis.

📅 Wednesday 18th November, 7.30pm

Register:
https://bit.ly/CAUKwebinarNov26 / Link in bio

07/10/2026

Struggling with your mental wellbeing? You don’t have to face it alone. ❤️

Living with cavernoma can bring uncertainty, difficult emotions and challenges that can sometimes feel hard to navigate.

That’s why CAUK offers free counselling support to help our community talk through what they’re experiencing in a safe and supportive space.

UK-based CAUK members can access up to four free counselling sessions with our trained therapist, Robyn. There’s currently no waiting list, so support is available when you need it. 🩷

Whether you’re struggling with anxiety, low mood, feeling overwhelmed, or simply need someone to talk to, reaching out for support is nothing to be ashamed of.

If you think counselling could help, find out more about our mental health support on our website.

UnitedByCavernoma

07/10/2026

Coming up this week – our Community Chat! 🩷

After a super-social and chatty September session, we’re back for another Community Chat this Thursday.

Join us to connect, chat and share experiences with others who understand.

🕚 11:00am this Thursday

Register: https://us06web.zoom.us/meeting/register/nlC4FrvEQlKjkma7H1UVlg #/registration / Link in bio
We’d love to see you there!

UnitedByCavernoma Support CavernomaCommunity

05/10/2026

“Take one step at a time, and you will reach your destination.”

Sometimes it can feel like you’ll never make it to where you want to be.

Whether you’re recently diagnosed, recovering from surgery, managing symptoms, or still navigating life affected by cavernoma years down the line, the journey ahead can feel overwhelming.

But every journey is made up of small steps.

You don’t have to figure everything out at once. Just take things one step at a time. ❤️

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

Website

https://cavernoma.org.uk/, https://cavernoma.org.uk/events/, https://members.cavernoma.org.uk/sign-up/, https://cavernom

Alerts

Be the first to know and let us send you an email when Cavernoma Alliance UK - CAUK posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Want your organization to be the top-listed non profit organization?

Country:

City: