Cavernoma Society

12/10/2026

🧠Cavernoma and Ethnicity : Who is missing from the research?

Cavernoma can affect people from all ethnic backgrounds. But how much do we really know about its impact across different communities? 🤔

Research exploring cavernoma and ethnicity remains limited.

- Does current research reflect the diversity of people living with cavernoma?

💬 We want to hear YOUR thoughts!

Should more research explore cavernoma across different ethnic communities?

👇 Join the conversation. Every voice matters!

10/10/2026

🧠 World Mental Health Day.🧠

Today, we celebrate World Mental Health Day and remind everyone living with a cavernoma that it's okay to have good days and not-so-good days. ☺️

Some days are filled with smiles, strength and positivity, while others bring worry, fear and uncertainty.

And that's okay ❤️

You don't have to be strong every day. Be kind to yourself, take each day as it comes and remember you're not alone.

Your feelings matter. Your mental health matters. YOU matter!

Don’t forget, all our members have access to free therapy sessions with our fantastic, dedicated therapy team! ❤️

Just reach out by contacting us at : [email protected]

09/10/2026

Evening all! Happy Friday!

Our lovely Bex Groves (Handmade by Bex) will be walking 8 miles from her home to Blackpool with her 12 year old, Lacey, to raise funds for us.

This was Lacey’s idea and we are so proud of this kind young lady for thinking of raising money for us.

If you have any spare £s and fancy donating, you can do so here.

https://www.zeffy.com/en-GB/donation-form/laceys-walk-for-the-cavernoma-society?fbclid=IwdGRjcAU2ITVleHRuA2FlbQIxMQBwZG9mBWZkaWQWUP_uOWIuuRxAZ9PKmT3c97pu0lrK0HNydGMGYXBwX2lkCjY2Mjg1NjgzNzkAAR7znKyJb5RhGlU38N_glbuOEm4uMRiJDa5Hg5mH2puVsklWYLhTOaCMJijgAA_aem_qOZiVp3ol-QGCUz_dWAYxA

Lacey’s Walk for the Cavernoma SocietyOn 24th October 2026, our beautiful Lacey, who is just 12 years old, will be walking around 9 miles from Fleetwood to…

08/10/2026

This month is Black History Awareness month. The reason we are choosing to celebrate it is because as a charity our membership database is becoming more and more diverse and we want to be able to represent all ethnicities.

Cavernoma affects people from all communities and ethnicities, including people of Black ethnicity, but we still do not have good UK or international data describing ethnicity among people diagnosed with the condition.

In itself, this is actually an important research gap and something worth raising awareness of. Therefore, the Cavernoma Society will be conducting a study on representation, diagnosis and access to care across different ethnic groups, and we look forward to getting you involved and sharing the results with you.

In the meantime, please join us in celebrating the diversity of our membership base for Black History Awareness Month.

05/10/2026

A big thank you to our amazing supporters who raise free funds for us on .

If you're not signed up yet, please join today and you can raise free donations for The Cavernoma Society every time you shop online this autumn. All the big retailers are ready to make a free donation at no extra cost to you.

Plus, sign up this week and we could win one of ten £100 donations:

Help us when you shop with 8,000+ brands. Join now.

03/10/2026

After another successful retreat, we would like to take the time to say a huge thank you to the Tesco Community Champion in Pitsea, Essex, and the Morrisons Community Champion on Canvey Island, Essex, who kindly donated items to help us provide meals for our members. ❤️

Without their generosity, our food bill for the retreat would have been considerably higher, so we are incredibly grateful for their kindness and support.

The donations certainly came in very handy and helped us make sure our members were well fed throughout the retreat. 🫶

It’s acts of kindness and generosity like this that make such a difference to what we are able to do for our members. Support from within local communities really does mean so much to us.

Thank you once again to the Tesco Community Champion in Pitsea and the Morrisons Community Champion on Canvey Island for your kindness and generosity. Your support is very much appreciated by us all.🙏❤️

01/10/2026

🚨Important news🚨

Unfortunately, we were unable to attend this year’s conference, as we were away supporting members on our Heal Your Brain Retreat.

However, this is too important not to share.

Last year, we attended to represent everyone living with cavernoma and to help ensure that every person has access to the same high standard of treatment, care and support, no matter where they live.

Although we couldn’t be there in person this year, our commitment has not changed.

We will continue to raise awareness, advocate for better and more consistent care, and make sure the voices of people living with cavernoma are heard.

29/09/2026

🚨What a week!🚨

Just last week, our members were arriving at the Heal Your Brain Retreat 2026, many meeting for the very first time.

They shared stories, built friendships and made connections that will continue long after the retreat. Partners and caregivers had the chance to connect and share their experiences too. 💜

But to keep providing this support — and make our next retreat possible — we need your help!

🌟Will YOU become one of our next fundraisers?🌟

Walk, run, bake, game, crochet, organise a non-school-uniform day or create your own challenge. Whatever you choose, your fundraising could help make a real difference.

👉 Don’t just think about it — get involved!
Set yourself a challenge, bring your friends and family together and help us raise the funds we need.

🫶 We can’t do it without you 🫶

Ready to fundraise? Message us today or email [email protected] and let’s get started!

Your fundraiser could help make our next retreat happen and keep services running for all of our members. 🙌🙌

28/09/2026

We had a wonderful time at the Aatma Holistic Wellness event in yesterday. Thank you for choosing us as your charity for the event. We appreciate everyone who spoke to us, let us share our story, purchased cakes/books/raffle tickets, and supported us. Congratulations to all of the raffle winners, and thank you to Chetna and the other stall holders for welcoming us. thank you to our trustee Victoria Butler for helping and making delicious cakes.

25/09/2026

Another Heal Your Brain Retreat has come to an end, and we’re left feeling incredibly grateful, proud and emotional.

Over the years, our retreats have evolved. We’ve learned, adapted, grown and found new ways to support those affected by cavernoma. But there is one thing that has never changed — the connection, community and friendships that are built.

Cavernoma can be an incredibly lonely condition. It can bring uncertainty, fear, frustration and so many questions that are difficult to explain to people who haven’t experienced it themselves. But no one should have to face it alone.

That’s why we created our retreats.

To give people affected by cavernoma — whether you live with the condition yourself or support someone who does — a much-needed break. A space to breathe, connect with people who truly understand, feel heard and supported, and most importantly, feel a little less alone.

But it’s also about empowerment. We want everyone who comes through our doors to leave with new knowledge, practical tools and a greater understanding of how they can manage the challenges that cavernoma can bring.

And every year, we see something incredibly special: growth.
People arrive carrying their own worries and experiences, and leave with new friendships, renewed confidence, a sense of belonging and a reminder that they are part of something bigger.

To everyone who attended this year — thank you.Thank you for showing up, for trusting the process, for opening your hearts, sharing your stories and investing your time, energy and soul into the weekend. You made it what it was. ❤️

And to our incredible volunteers — thank you doesn’t feel like enough. Your time, compassion, energy and dedication are what help make these retreats possible. We simply couldn’t do it without you.

⭐️ Ellie S for the amazing therapy classes
⭐️ Mum
⭐️ Wayne Wright for the incredible coffee Art lesson
⭐️ Michelle Johnson Wright for the support cooking and preparing everything.

⭐️Bex Groves making crochet raspberry keyring keepsakes
⭐️ Lizzie Murray for the therapy classes and help and support
⭐️ James Murray help with organisation, fundraising and so much more
⭐️ Jmac McMahon the team building workshop, pub quiz, and your help and support.
⭐️ Raj for the fab ballon displays
⭐️ Angela at Holistic Fitness for giving up her time for free to teach a yoga lesson for us
⭐️ Kathryn at Woodhall Massage and Reflexology for the mini treatments.
⭐️ Carole for the scrap journaling class

Here’s to another retreat, another group of incredible people, and another reminder of why community matters so much.

Cavernoma may be part of our story, but it doesn’t have to be a journey we walk alone.❤️