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In November 2016, The Foundation was pleased to announce that a grant was awarded to support a UK-based clinical trial, led by Professor Steven Gill, to treat children with DIPG brain tumours using a unique and pioneering form of Convection Enhanced Delivery (CED).

Following unforeseen obstacles and unavoidable delays to the trial, Funding Neuro reached out to The Foundation for further funding in late 2018 and again in early 2019.

The Foundation was keen to further support Professor Gill in getting this clinical trial off the ground and agreed to a grant of up to £900,000 to provide the necessary funding needed to ensure the trial started in Autumn 2019.

Regrettably, due to further unexpected delays and now the current world pandemic, Covid-19, the trial has been temporarily suspended.

Harley Street Clinic, where the trial was to be carried out, has given over their facilities to the NHS in order to deal with the Coronavirus.

Professor Gill and Funding Neuro are in regular discussions with The Foundation to determine how to launch the trial as soon as possible, once this global emergency is over.

The Foundation chose to fund this study after careful review by our scientific advisory board and considerable discussions with Professor Gill and his team. The results achieved, thus far, have been promising and show strong potential for the development of an effective form of treatment for DIPG.

British neurosurgeon Professor Steven Gill and his medical team will carry out the trial, the only one of its kind in the world.

It will see 18 children diagnosed with deadly DIPG brain tumours treated using a pioneering robotic procedure, which requires the installation of a titanium port in the skull linked to a series of micro-catheters targeting specific parts of the brain.
This procedure allows Bristol-based Professor Gill to bypass the protective brain-blood barrier membrane, which makes it almost impossible to administer neurological treatment drugs using conventional oral or intravenous methods.

By administering treatment drugs directly into the brain through a series of pain-free infusions, the membrane then works to the professor's advantage by acting as a protective barrier to the rest of the body. This allows Professor Gill to deliver far greater drug doses such as chemotherapy to a tumour without the usual side effects such as hair and weight loss and nausea. Sharon Kane added: “That an organisation such as The Lyla Nsouli Foundation is willing to invest so much money is testament to their confidence in the pioneering work currently being carried out by Professor Steven Gill and his team in Bristol.

Each year in the UK, DIPG brain tumours, very sadly, claim the lives of between 30 and 40 children just like Lyla. Up until this point, treatment methods have proved ineffective, but the professor and his team are on the verge of making a major breakthrough in the way we treat DIPG tumours.

They have made great strides already by both extending and improving the lives of the children currently being treated by the team, but the ultimate goal is to find a lasting cure.  The team learns more each time they treat a child, so having the funding in place to get the trial underway is extremely important.”

Speaking on behalf of The Lyla Nsouli Foundation, Director Nadim Nsouli said: “We decided to support this study as we believe that the results thus far have been very promising and the team leading this study have demonstrated great commitment to using their CED expertise and technology to treat DIPG. We believe that CED (Convection Enhanced Delivery; see image below) has the potential to become an effective method of targeting and treating DIPG tumours and we continue to show our support for this field of DIPG research with this latest grant.”

Unique CED catheter system comprises implantable microcatheters and a skull anchored port, which allows drugs to be repeatedly administered without the need for further surgery.