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
What an amazing day Sunday 26th April 2026 was. The ‘Famous 5’ were lucky enough to take part in a world record breaking London Marathon – first time ever under 2 hours, a record number of runners and a record total for the MVA Society.
We are very thankful to Children With Caner UK, who we jointly ran for after they kindly gave us these places in the race – and donated £10k to their extremely worthy cause.
We raised a further £15k for the MVA Society, which is fantastic. What a day. Phew!
