Jonathan's mission to make a difference

I attended Bedford Modern School from 1983 to 1990. Like most of us who passed through those gates, I left with friendships, good memories and a vague sense of what I wanted from life. What I couldn't have imagined then was the journey that would eventually lead me to found a charity, and that my son, George, would be the reason why.

After school I served as an Army officer in HM Forces before moving into the pharmaceutical industry, where I have spent over twenty years working across branded, generics and specialty pharma. During the pandemic I was seconded to the Government's COVID Task Force, and I am currently Executive Vice President of Corporate Development at Tanner Pharma Group. It has been a career built on problem-solving, resilience and getting things done. All qualities I have needed in abundance since August 2023.

That was when our world changed. George, our gorgeous boy who had just turned two, was diagnosed with rhabdomyosarcoma, a rare liver cancer. Within 48 hours we were at Great Ormond Street Hospital beginning chemotherapy. What followed was one of the most extraordinary experiences of my life. Nine rounds of chemo, consultations with specialists across four continents, and ultimately a groundbreaking two-stage surgical procedure using Nano Knife Technology. George became the youngest patient in the world to receive this treatment and the first paediatric patient to have it performed on his liver in the UK.

During all of this, whole genome sequencing revealed that George also has Mosaic Variegated Aneuploidy (MVA) Syndrome. MVA, an ultra-rare genetic condition with an underlying risk of causing exactly the kind of cancer he had just been through. When we looked for support, for information, for other families who understood what we were facing, there was almost nothing. No charity. No focal point. No community.  No treatment. 

So, we decided to build one! 

The MVA Society exists to change that for every family that comes after us. We fund research, support families, connect clinicians, and we are on a mission to find a treatment for MVA by 2030. In September 2026 we are hosting the first ever international MVA scientific conference, bringing together researchers from across the world to accelerate progress on this condition.

George, I am delighted to say, remains fit and well.

If you would like to find out more or support our work, please visit www.mvasociety.org.