DIPG, or Diffuse Intrinsic Pontine Glioma, is a type of tumour that starts in the brain stem, the part of the brain just above the back of the neck and connected to the spine. The brain stem controls breathing, heart rate and the nerves and muscles that help us see, hear, walk, talk and eat. 


about dipg

DIPG is a specific type of brain tumour which is one of a larger group referred to as brainstem gliomas. It usually occurs in children between five to nine years of age and makes up 10 - 15% of all brain tumours in young children.

There is no cure and DIPG is inoperable because of its location deep inside the brainstem and it’s diffuse nature. It is intertwined with healthy tissue and attempted full removal would leave the patient brain dead or dead.

the symptoms

  • Lack of facial control (droopy eyelids)

  • Double vision

  • Headache 

  • Nausea and vomiting

  • Weakness and fatigue

  • Seizures

  • Balance problems 

  • Difficulties walking and speaking

The effects

DIPG takes away physical abilities one by one while leaving the mind fully intact. The abilities to swallow, focus the eyes, talk, eat, go to the bathroom, walk, maintain a normal heart rate and blood pressure, and so much more are stripped away until they are left locked into a broken body with a fully aware mind. No one should have to endure this. Especially not in 2018.


The team at the University of Nottingham’s Children’s Brain Tumour Research Centre will be using the money we raise towards investigating various aspects of DIPG. They currently have a number of active research studies investigating various aspects of DIPG, including Biological Studies, Ketogenic Diet and Cannabinoids, Bioinformatics and Drug Delivery.

The Children’s Brain Tumour Research Centre is striving to develop better diagnosis and novel therapeutic approaches to treat these histone-mutant children's brain tumours. We hope to raise a significant amount of money to help them achieve great results.

Learn more about the great work they do by clicking here.

Find out more

When Sophie-Hélène was diagnosed with having a DIPG tumour, I did what most people would do and searched the internet for answers. Sadly my wish was never answered, but I did find out lots of information - including information I’ve included on this webpage - from these sites:


I hope that by raising funds towards research into DIPG brain tumours, we can make a difference to the outcome for other children who receive this heartbreaking diagnosis.

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