Dear Family & Friends
CYPRUS HALF MARATHON 2019
Both Marcos and myself have seen Nikki flourish into the inspiration she has become to people of all ages, despite all of the obstacles in her path. It never ceases to amaze us how she gracefully copes with adversity whilst still doing far more with her life, than many of us could imagine doing with our own. We want to ensure a brighter future for Nikki and AVM sufferers all over the world by raising as much as we can for 'The Butterfly AVM Charity' in the hope that one day everyone can be AVM free.
Please donate whatever you can...lets help find a cure for Nikki.
Lots of love Marcos and Sotiris xxx
To find out more information about the Charity please click on the link.
Butterfly AVM Charity Aims…
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.
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.
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.
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
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.