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
£250k raised in 2025
£60k reached of 2026's £325k target
Active research collaboration with:
Creighton University Medical School, Omaha
Vall d'Hebron Institute of Oncology, Barcelona
MRC London Institute of Medical Sciences
Around 40 known cases globally, and every day we are growing this number to expand our community
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.
