Dear Friends and Family,
thank you so much for your support, it means so much.
Most of us are not athletic at all, most of us had never run before starting this group. But we came together because of this worthwhile charity and in particular because of one amazing girl, Nikki Christou aka Nikki Lilly x
To find out more information about the Charity please click on the Link
The Butterfly AVM Charity Story …
Before Nikki was diagnosed with a Craniofacial AVM (an arteriovenous
malformation) 8 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.
The Butterfly AVM Charity has gone onto raise well over £600,000! We have enhanced the lives of AVM sufferers and their families in the UK and around the world. The research that we have funded has provided major breakthroughs and has allowed the introduction of definitive treatments and provided hope to thousands.
Funding when targeted can go a very long way. As a Charity we directly liaise with Researchers at Great Ormond Street and The UCLH (University College Hospital) and have funded their research for the last 7 years.
Our funding has had amazing results in the progression of AVM
research, "Mosaic RAS/MAPK variants
cause sporadic vascular malformations which respond to targeted therapy,"
has been published. View the article here:
We are also proud to announce that we have agreed a further 3 year
£90,000 fund for a Project 1957247: Genetic
Investigation and Therapy for Arteriovenous Malformations.
This research will concentrate on finding more gene mutations that
directly lead to AVMs with a view to in the future implementing new drug
treatments and gene editing therapies.
We could not have done this without the help of our fantastic volunteers and fundraisers and for this we are eternally
grateful. We believe that together we can make a change … Thank you.