The Butterfly AVM Charity Aims…
- To raise much needed funds for specific research into peripheral, brain & extremity AVMs (Arteriovenous Malformations) with the aim to improve treatments and find a cure.
- To raise awareness about AVMs.
- To support AVM sufferers and their families
- To inform AVM sufferers about new treatments and establish a comprehensive list of treatment centres, specialist interventional radiologists, surgeons & doctors.
Before our daughter Nikki was diagnosed with a Craniofacial AVM (an arteriovenous malformation) 6 years ago we had never even heard of this illness. Like most concerned fathers would do in this position, I became an internet expert and was overloaded with sites providing a mixture of valuable and invaluable information and came across things that scared the hell out of me! Most of the available information online dealt with AVMS of the brain, with very little about facial and extremity AVMs.
Due to the rarity of this illness and a lack of understanding about AVMs we felt that there needed to be a concerted effort to provide sufferers with an up-to-date website, as well as a service to inform families about the latest treatments and support available, whilst creating a platform to raise the much needed funds into AVM research.
Our fundamental objective is to inform the general public about AVMs, and let them be inspired and moved by the stories of AVM sufferers. With readily available information we hope our charity website will help those living with an AVMs.