The Silas Pullen Fund is a supporter group set up under the umbrella of The Brain Tumour Charity. The Brain Tumour Charity is the UK’s largest dedicated brain tumour charity and is committed to fighting brain tumours on all fronts.
The Brain Tumour Charity have set themselves an ambitious target to:
- Double survival within 10 years in the UK. Our goal is to halve the average years of life lost to a brain tumour from 20.1 to 10 years by 2025.
- Halve the harm that brain tumours have on quality of life in the UK. Our goal is to halve the harm caused by brain tumours by 2020, from a baseline measure which we will agree with clinicians and patient groups by the end of 2015.
They want to improve survival rates and transform quality of life for patients.
For more information on The Brain Tumour Charity see here.
Funds raised under the Silas Pullen Fund are largely directed straight into paediatric research, helping to drive new treatments for children diagnosed with brain tumours.
- We are helping to fund a research project run out of the University of Edinburgh which is studying a group of proteins known as chromatin regulators, often faulty in high grade brain tumours, both adult and paediatric. Researchers are looking at a large database of drugs in the hope of finding new treatments that can target these proteins.
- We are aiming to fund the paediatric element of the first ever global adaptive trial for high grade brain tumour patients. An adaptive trial allows doctors to switch drugs or combinations of drugs as soon as they are shown not to be working rather than waiting until the end of the trial period, vital for brain tumour patients who don’t have the luxury of time. There were no clinical trials in the UK or elsewhere that Silas was eligible for when he relapsed and this was very difficult for us to accept. We want to help change this so that every child diagnosed with a brain tumour in the UK can be part of a clinical trial.
- We are assisting in the development of a global database registry, BRIAN, allowing patients to share their medical data to accelerate research. The database has been described as “game-changing” and aims to revolutionise access to data for both patients and clinicians – helping them decide on the best treatment options.