Story
I was diagnosed with cavernoma in 2015 following a stroke at the age of 27. I had brain surgery in Dec 2015 to remove my cavernoma.
In November 2019 I set up the Cavernoma Society to help others like me who knew very little about cavernoma/the condition and who’d had little support.
I was lucky to have my surgery privately, but the aftercare was all on the NHS and I cannot fault it. But I had to fight for everything. My family were also deeply affected by what happened to me and they were never offered support.
In Oct 2020 my younger sister was also diagnosed with cavernoma. This has made me even more passionate to fight for awareness and support for the condition.
Our charity is small and needs all of the support it can get. We’re building a wonderful and supportive community and providing practical and holistic support to those in need. Please support us so we can continue to do this. We rely on your donations.
This run is for my sister, Ellie, who has been very ill recently. We almost lost her! Thankfully she made it, but I’d like to dedicate it to her.
The Cavernoma Society has been set up by those with cavernoma to help those affected by it. We are a volunteer-run charity supporting friends, carers, family, and patients affected by cavernoma. This rare neurological condition affects 1 in 600 and it's our mission to provide support and research into the condition, thus improving lives.