All Party Parliamentary Group for Brain Tumours

COFFEE & BINGO EVENTS
Trustee Neal’s sister Carol Blatherwick has donated £100 to ABTF being money raised from coffee and bingo events.
We continue to support the All-Party Parliamentary Group (APPG) for Brain Tumours which seeks to raise awareness of the issues facing the brain tumour community to improve research, diagnosis, information, support, treatment and care outcomes.
In late 2023, we supported the Emerton family in bringing to the APPG’s attention their and the LGG community’s frustrations in being unable to access the new drug, Vorasidenib in the UK (see below). As a direct result, the APPG took action to further establish the main issues and solutions, and engaging with the manufacturers, Servier, at the highest level in the UK in early 2024. Vorasidenib is now available in the UK under the early access scheme on a named patient basis.
At the APPG on 14th November 2023, Mr Kismet Hossain-Ibrahim of Dundee University did a presentation on Sonic Dynamic Therapy – ABTF trustees have engaged with him to try to understand the obstacles he is facing in getting this into a clinical trial in the UK and continue to pursue this. Also, Dr Kathreena Kurian of North Bristol NHS Trust presented a talk on the importance of genetic whole genome sequencing – which ABTF pursued by presenting information to LGG patients in order for them to understand more about this and also how they might access it