Cavernoma Alliance UK
Cavernoma Alliance UK supports people of all ages who have been affected by cavernomas, which are abnormal growths in the brain or spine. These growths are made up of clusters of blood that bleed, causing cerebral haemorrhage, which could result in stroke, paralysis or even death.
With numbers of newly diagnosed children and young people increasing by 10% each year, Cavernoma Alliance UK is a small charity which works hard to provides vital support for affected people across the UK.
It offers advice and support, annual forums, talks by neurological professionals and social media groups to bring those affected by the condition together. CaverBuddies introduces new starters to more experienced members, while CaverFamilies is a group for families affected by the condition.
Zane was diagnosed with 15 brain tumours when he was just over a year old, and suffers from a condition which means he can develop more tumours at any time. His dad, Lee, said:
“I remember sitting at my desk in the early hours, crying and scared, looking for help and answers. Within 24 hours I had received two emails from CAUK, from two other parents who had been through exactly the same thing. It was amazing to know we weren’t alone, and something I’ll be forever grateful for.”
Every year, the charity arranges the CaverHub workshops and residential – weekends away for families affected by Cavernomas to understand more about the condition, talk to specially trained therapists and receive peer support.
This year, Global’s Make Some Noise is proud to support Cavernoma Alliance UK in organising these events, giving children a chance to meet and make friends with other youngsters affected by the condition, and give their mums and dads some much needed respite.