Funding Research.
Building a Community.
Finding a Cure.
Dedicated to understanding and supporting those affected by Mosaic Variegated Aneuploidy (MVA) syndrome
We are the only organisation in the world dedicated to Mosaic Variegated Aneuploidy (MVA) an ultra-rare genetic condition affecting fewer than 50 people worldwide.
Our charity is committed to funding focused research into MVA, ultimately enabling us to find treatments and a cure, whilst building a community of patients and their families along the way.
George’s Story
“We were told nothing could be done, but with the right people and bold decisions, we changed the outcome.” – Jonathan
At just two years old, George was diagnosed with a rare liver cancer – rhabdomyosarcoma – and an ultra-rare genetic condition, Mosaic Variegated Aneuploidy (MVA) Syndrome.
With determination and the support of experts like Professor Anil Dhawan, George underwent a pioneering two-stage operation using Nano Knife Technology – becoming the first child in the UK to receive this treatment on the liver. Today, George is fit, healthy, and thriving.
A huge thank you to the Ipsen Foundation who have helped us put together this short film about MVA. The film helps explain the challenges of an ultra-rare disease diagnosis, living with such a rare condition and the ‘grit’ needed to search for a treatment.
Our impact at a glance
£200,000 raised of a
£250,000 research funding
target - and counting
4 active research projects
underway - 2 in the UK, 1 in Spain
and 1 in the USA
Fewer than 50 known lives
affected globally - and each one
matters deeply.
For some, its a first marathon. For others, its more of wanting to experience 26.2 miles of awesomeness again.
The MVA Society aims to find a treatment for this condition and prevent related cancers. Such projects are not a sprint – they are a marathon. So, like our 5 budding athletes, its simply a question of one step at a time, grit your teeth and get cracking.
You can donate via the JustGiving page here. All and any donations are very welcome.
