Why Research Matters
Finding answers and solutions for families around the globe
For families living with Mosaic Variegated Aneuploidy (MVA), every day brings uncertainty. With fewer than 50 people diagnosed worldwide, there is no standard treatment, no clinical guidelines, and no long-term roadmap.
Without research, MVA will remain a mystery. Until recently, there were no recent dedicated studies or patient data cohorts, and very little understanding of how the condition affects the body leaving families with questions and no solutions.
Our research programme aims to change that. By funding targeted, treatment-focused studies, we are:
- Building knowledge about how MVA works at a cellular and genetic level.
- Identifying targets for therapies that can stabilise cells and reduce cancer risk.
- Repurposing existing drugs to fast-track potential treatments.
- Creating a foundation so that, one day, clinical trials will be possible.
Why now?
For people with MVA and their families, research represents more than science. It’s the path to:
- Better day-to-day management of symptoms
- Reduced cancer risk
- Real treatments - and ultimately, the possibility of a cure
Because MVA is so rare, every study has a huge impact. What we learn from a single study and the new information we explore on patient data could benefit the entire global MVA community.
Thanks to researchers offering their expertise free of charge or at much reduced rates, our impact is multiplied and new donations go directly into future studies. Every pound invested in research brings us closer to turning MVA from an untreatable diagnosis into a condition with options, hope, and a future.
Learn more about MVA research
Read more about the research being done on Mosaic Variegated Aneuploidy