🏃‍♀️ Our Family Run for Cavernoma Alliance UK 🏃‍♂️

Hi everyone,

Rob, Lily and myself,— are taking on a charity run to raise money for Cavernoma Alliance UK (CAUK).

Now, to be completely honest… we are not exactly the fittest bunch! 😅 This is going to be a big challenge for us, but that’s part of why we’re doing it. We want to push ourselves out of our comfort zone, while supporting a cause that really matters to us.

For those who don’t know, cavernomas - also referred to as cavernoma malformation - are abnormal blood vessels that can grow, predominantly in the brain. — but in our case, we have the genetic form of the disease, which unfortunately affects around 20% of people with cavernoma. This means it’s not just one of us, but something that impacts our whole family.

Living with this condition brings its challenges and we have relied more and more on the support from CAUK. Their guidance, community, and resources have made such a difference to us, and we want to give something back.

We are joining their team for the Butterfly run at Queen Elizabeth Olympic Park London to raise funds for CAUK on 5 October.

💙 If you’re able, please sponsor us and help us reach our goal. Your support will not only motivate us to keep going (even when we’re huffing and puffing!) but it will also make a real difference to people and families living with cavernoma.

Thank you so much for reading, supporting, and cheering us on!

With love and gratitude,

Lindsay, Rob & Lily

A bit of background for you from the Support Team CAUK page,

🏃‍🦋On Sunday 5th October 2025, the cavernoma community are coming together to take part in the Butterfly Run at Queen Elizabeth Olympic Park in London - a special event organised by Cure EB bringing together rare disease charities to raise vital funds and awareness

Open to all ages and abilities, the Butterfly Run is a fun, inclusive event with a serious purpose - to shine a light on conditions that are often overlooked, including cavernoma.

Why Your Support Matters

By donating to Team CAUK, you’ll help to:

📢 Raise awareness of cavernoma

🧪 Fund research into better treatments and a cure

💬 Provide life-changing support to people affected by the condition

What is a Cavernoma?

A cavernoma is a cluster of abnormal blood vessels in the brain or spinal cord, often described as looking like a raspberry 🍓. Their thin, leaky walls can bleed without warning, at any age. Around 1 in 625 people have a cavernoma, and 1 in 2,700 experience symptoms such as:

🩸 Brain haemorrhages

⚡ Seizures

🧍‍♀️ Neurological problems

There’s currently no cure. Treatment options are limited to monitoring, neurosurgery or stereotactic radiosurgery, and that’s why your support matters so much.

About Cavernoma Alliance UK (CAUK)

Cavernoma Alliance UK was founded by Dr Ian Stuart after a sudden cavernoma bleed changed his life. What began as a small helpline in Ian’s bedroom is now a national charity supporting over 4,000 people across the UK. Our mission is to:

🔬 Fund research to find a cure

📚 Provide trusted, accessible information

🤝 Offer connection, understanding and support when it’s needed most

To find out more, visit www.cavernoma.org.uk