Rare DiseaseFebruary 2, 2026
Patient Group Spotlight: The MVA Society & The Ultra-Rare Journey
A deep dive into the challenges and triumphs of Mosaic Variegated Aneuploidy advocacy with founder Jonathan Bracey.
Guest: Jonathan Bracey — Founder
In this heartfelt episode, we sit down with Jonathan Bracey, the founder of the MVA Society. His journey began not in a research lab, but with a sudden and devastating diagnosis of his son, George, with Rhabdomyosarcoma directly following their honeymoon. This discovery unraveled a deeper mystery—a diagnosis of an ultra-rare condition called Mosaic Variegated Aneuploidy (MVA).
Faced with a complete lack of information ("No one really knows," were the words from specialists) and zero supportive infrastructure, Jonathan channeled his "turbocharged" energy from George’s successful cancer battle into building a global lifeline for others.
From "Sludge" to Rare Cancer: The harrowing initial misdiagnosis of a bile duct blockage that turned out to be a rare tumor, launching the Bracy family into "a completely alien environment." The Vacuum of Information: The realization that even experts had never seen an MVA patient, with no care pathways or research existing. Building the MVA Society: How a simple rejection from the Charity Commission ("don't fill forms after wine") led to a fully registered charity in under a year that is now funding its own researcher at the Francis Crick Institute. The 2030 Mission: A clear, ambitious goal to find a treatment by 2030, supported by three pillars: Awareness, Research funding, and Fundraising. Pharma Relations: A candid look at the frustration of unanswered emails from pharmaceutical companies, aiming for genuine human connection over corporate bureaucracy.
Faced with a complete lack of information ("No one really knows," were the words from specialists) and zero supportive infrastructure, Jonathan channeled his "turbocharged" energy from George’s successful cancer battle into building a global lifeline for others.
Key Moments & Takeaways
A Call to Industry
Jonathan’s message to pharmaceutical executives is simple yet powerful: _"Just that human kind of side of things... make time to have the chat, to respond to an email and not disappear into a black hole."_MV
MVA Society
London, UK
About the Organization
Dedicated to understanding and supporting those affected by Mosaic Variegated Aneuploidy (MVA) syndrome The MVA Society has been set up as a patient advocacy site to establish a focal point for the ultra-rare genetic condition Mosaic Variegated Aneuploidy syndrome. We believe this is the first (and only!) dedicated organisation and site for MVA. The aims of the MVA Society are 3 fold: Act as a patient advocacy support and information resource Build a community of practise and patient cohort Investigate research into screening, surveillance and treatment of MVA