Overview
- An 11-year-old from Caerphilly was told she had an inoperable diffuse midline glioma after brief stroke-like symptoms and died within days, prompting her mother to turn grief into campaigning.
- The mother has founded Alicia-Adele’s Angels to fundraise for Brain Tumour Research and to press the newly elected Senedd for change, and the group has raised more than £4,000 so far.
- Brain Tumour Research has urged three priorities for Wales: increased research investment, routine access to genomic testing to identify tumour mutations, and more local clinical trials so patients can access experimental treatments.
- The Welsh Government said its new Cancer Plan and support through Health and Care Research Wales will prioritise research, innovation and improved access to clinical trials and will strengthen legal safeguards for tissue preservation.
- Advocates note that DIPG is an aggressive childhood brain tumour with very poor survival, that symptoms are often vague and lead to emergency diagnoses, and that better diagnostics and standardised tissue storage are needed to expand treatment and research opportunities.