Families & Scientists Unite to Drive Forward RMS Research

It was a day of great mutual benefit designed to bridge the gap between the science and families impacted by rhabdomyosarcoma. We have also visited the University of Birmingham earlier in the year. More research days to come!

Here are some quotes from the Scientists about the day and the impact of the funding from Alice’s Arc.

“As a non-clinical scientist, speaking with parents was a very new experience for me and I found it illuminating. We were able to create a space for parents to describe their experiences, ask questions about how science operates, and to see what science we can do with their funding. Everybody was so engaged and curious, and we all left feeling really inspired.”

“Genomic research is hugely dependant on good clinical annotation, yet achieving this can be a significant challenge. The targeted funding provided by Alice’s Arc has galvanised a national effort to create a world class genomic dataset in paediatric rhabdomyosarcoma, which I hope can serve as a case study for other childhood cancers. It was such a privilege to meet families from Alice’s Arc, and I was particularly impressed by the great importance they placed on ensuring collaboration and data-sharing, something we also believe strongly in here at Sanger.”

“Identifying cancer-causing mutations in childhood tumour genomes is a vital task. For rhabdomyosarcoma, we know many of the ‘usual suspects’ of causative genes, but many other mutations remain entirely mysterious. We are also largely in the dark about how any given mutation will dictate treatment response. This is where our collaboration with Alice’s Arc is making such a difference.”