We had some great cavernoma-expert guest speakers with us on the day, and the feedback has been great! We know that not everyone in our community was able to attend, and we understand that many of you find it easier to watch the talks at your own pace – and so we’ve uploaded the recordings of the three main talks to our Youtube channel.
The team at CAUK, along with our medical advisors, have been working behind the scenes to create brand new Public Information Leaflet (PIL), with the aim of educating patients, clinicians and the general public about cavernoma.
In 2011 I had a bleed from a Spinal Cavernoma. At the time I had never heard of this rare disease. I had never had any health problems. My symptoms started with a tingly feeling down my left leg. I also went for a bath and my left leg didn’t feel the temperature. I was diagnosed with 1 Cavernoma in my spinal cord and 3 small Cavernoma’s in my brain.
Lauren was diagnosed with cavernoma in her lower right cebellum after suffering multiple debilitating migraines. She was forced to have brain surgery which was successful. Lauren suffered a lot emotionally but was able to go back to her degree and, just last year, she took a leap set up her very own Performing Arts studio. An inspiration!
Cavernoma is a rare condition for which research is relatively young. Most people haven’t heard of Cavernoma until they, or someone they know, is affected. Being diagnosed with a condition you have never even heard of makes this difficult time all the more daunting and overwhelming. The more we share about Cavernoma and our experiences of Cavernoma the better the quality of care and support we can offer those affected in the future.
Whether you are a big company or a small business we would love to hear from you. Never had an office/company charity before? Choose CAUK as your fist!
Contact us today to help us raise awareness of our rare disease and support the cavernoma community.
Join our monthly Cavernoma community catch-up for an opportunity to meet, share and learn from others who can really understand you and what you’re going through.
The Covid-19 pandemic has played a significant role in radically reshaping the work we do. Our team has worked tirelessly to respond to the crisis, and we’ve been able to successfully adapt and expand our services to cater for the growing number of people seeking information and support. Demand for our services is higher than ever, at a time where saturation of applicants means it has become is more and more difficult to secure funding. We need your help!
In honour of her father who was diagnosed with cavernoma, Sonia is taking part in a Tough Mudder event to raise funds and awareness for cavenroma and CAUK!
Our sister organisation in the US celebrates 20 years today! We wanted to say a huge congratulations to the team for all that they have accomplished and contributed to care and research, and to the international cavernoma community.
PO Box 366
Watlington
Oxfordshire
OX10 1GF
Registered Charity 1197257
Scottish Charity SC048458