DIPG is rare and understudied. Thus, it is hard to provide hard statistical information on the number of children effected.
Scientists believe that 1,000 or more DIPG cases are diagnosed across the developed world each year.
DIPG primarily affects children between the ages of five and nine years old. However, children and young people of all ages have been diagnosed with DIPG.
Treatments for DIPG
There is currently no effective prevention or cure for DIPG. Due to their location in the brain stem, DIPG tumours cannot be surgically removed. Treatment options include:
Radiation therapy – Although the DIPG Registry reports that up to 85% of children with DIPG show improvement in symptoms after radiation therapy, the cancer almost always grows back after a few months.
Experimental chemotherapy – Various forms of experimental chemotherapy are being investigated as potential treatments for the condition. Multiple clinical trials have demonstrated that routine chemotherapy does not increase survival rates in Diffuse Intrinsic Pontine Glioma.
Convection Enhanced Delivery (CED) – Delivering chemotherapy and other drugs beyond the blood brain barrier. Funding Neuro are helping to promote the work of neuroscientist Professor Steven Gill in Bristol, England.
Through his pioneering Convection Enhanced Delivery (CED) system which has been tested to safely deliver drugs past the brain blood barrier, children are now able to receive compassionate treatment and the first real medical breakthough in modern times looks set to transform the lives of DIPG patients around the world.
As a result of CED trials in 2016, the average survival times of those children who used the system has doubled. There is also clear evidence their tumours are reducing.
Funding Neuro will run a clinical trial to prove these results in 2018 in London.
Please contact us at Funding Neuro with any further questions or concerns. We do not offer support or bereavement counselling, however our staff can offer guidance on best options or put you in touch with other organisations who can help.