In-Person Meetup for Children with Cavernoma & Their Supporters (North)

Leeds Mencap

20 Vinery Terrace, LS9 9LU, Leeds, England, United Kingdom

Cavernoma Alliance UK

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About Cavernoma Alliance UKCavernoma Alliance UK (CAUK) was founded by Dr Ian Stuart after his life changed overnight following a devastating cavernoma bleed. With no information or support available, he made it his mission to ensure that no one faces cavernoma alone.In 2005, Ian’s vision became a reality. What started as a volunteer-led helpline from his home in Dorchester has grown into a national charity with over 4,000 members and a dedicated team of staff and volunteers. Our work today:Over 50 volunteers run our helpline, buddying service, meet-ups, and online chats.We provide trusted information through our website, social media, monthly webinars, and annual conference.We actively support research into treatments and potential cures.We have led the James Lind Alliance Priority Setting Partnership for cavernoma and were partners in the first clinical trial of neurosurgery and stereotactic radiosurgery. In 2024, we proudly announced new gene therapy research at University College London (UCL).What is a Cavernoma?Cavernomas are clusters of abnormal blood vessels that resemble tiny raspberries. They are found in the brain and spinal cord and have thin, leaky walls that can bleed at any age without warning. Key Facts:One in 625 people has a cavernoma, affecting approximately 108,000 people in the UK.Most people never experience symptoms, but around 25,000 in the UK do.Symptoms can include haemorrhages, seizures, and other neurological issues.Treatment Options:Wait and seeNeurosurgeryStereotactic radiosurgeryWhile no medications currently exist to treat cavernoma, active research- including CAUK-funded gene therapy at UCL- is underway. In most cases, cavernoma occurs without a known cause. However, in about one in five cases, there is a genetic link, with a 50:50 chance of passing it on to a child. If a person has a single cavernoma, a genetic cause is unlikely.Find Out MoreFor more information, visit www.cavernoma.org.uk.