I met and was inspired by Bryn Williams, the founder of Funding Neuro, in 2014. Bryn, himself diagnosed with Parkinson’s Disease at age 36, set up the charity to support the development of technology that could accelerate treatments and cures for neurological conditions. One of the areas that really motivated me was the work the charity was doing with Professor Steven Gill and Diffuse Intrinsic Pontine Gliomas (DIPG) in children. I met a little girl, Daisy Brooks, who was undergoing experimental therapy using Convection Enhanced Delivery to deliver chemotherapy directly into the brain stem tumour. I realised then, when I met Daisy and her family, that we would do everything we could to support the clinicians and researchers to try and find a treatment for this horrific brain tumour.
Funding Neuro, together with The Lyla Nsouli Foundation, are funding a clinical trial to treat children with DIPG. This involves using Professor Gill’s CED system to deliver a combination therapy directly into the tumour. The compassionate programme, which has led to the trial, has seen a number of children treated by this method. The treatment extended the lives of a number of these children, compared with the average 9 month survival; some children surviving for almost three years.
The trial, which will begin early 2020, will be led by Professor David Walker. I believe that the novel drug delivery system will have a big impact on successfully treating brain tumours.
There have been many years of work on developing potential drugs, however one of the key problems has been getting drugs into the brain where they can be effective. This has now been overcome via Professor Gill’s system and therefore the potential for new treatments is massive. The CBTDDC recognised that drug delivery has been a huge barrier to finding treatments and is tackling this by encouraging international collaboration and supporting novel strategies. This work is key to finding the answers and is now giving real hope to people with brain tumours. In particular giving hope to people that have the most devastating brain tumours where there has been no hope and no progress for 60 years, until now.