Why research?

Why is this form of brain tumor virtually untreatable?

Due to the location of the tumor, in the brain stem, absolutely nothing can be done to date to treat it.

The brain stem is situated between the brain and the spinal cord and regulates vital functions such as heartbeat, breathing, blood circulation, blood pressure and digestion, as well as certain reflexes such as swallowing and vomiting.

10 of the 12 pairs of cranial nerves originate in the brain stem so in other words:
• It is not possible to operate on the brain stem
• Chemotherapy barely reaches the tumor located there

The only available treatment to date is radiation therapy, but this form of cancer is too aggressive for this treatment and has proven to be resistant to it. Radiation can offer temporary relief however.

We therefore need to go in search of an additional treatment method that can be used in combination with radiation, in order to achieve better results.

Due to the rarity and complexity of the tumor, little research was done into brain stem tumors in the past. In the Netherlands, gathering tissue through biopsy is no longer carried out since the tumor has various grades and the tissue did not seem to be necessary for the research.

Thanks to funding raised by Stichting Semmy, the first research into brain stem tumors (DIPG / pontine glioma and glioma in general) is now being carried out in the Netherlands.

Objective of the research

The objective of the research is to improve the survival rates. Therefore, new treatment methods are necessary.

Origin VONK-SEMMY and VUmc

VU medical centre (VUmc) is a university medical centre which means they not only take care of patients, but also carry out scientific research and provide education.
The VUmc fund helps VUmc to realise its ambitions in the field of scientific research but also to ensure a pleasant stay in the hospital for the patient and his or her family.

As part of the VUmc fund, one of the pillars of the scientific research involves pediatric cancer research which is carried out by the department VONK (VUmc Onderzoek Naar Kinderkanker, or VUmc Pediatric Cancer Research).

In early 2008, on the request of Stichting Semmy, this department started with a special research project named VONK-SEMMY. On the basis of the current available funding, the VONK-SEMMY project has a duration of 4 years. The more funding becomes available, the more people can be involved in the research and the sooner results can be expected, and hence the sooner we can do something for children with a brain stem tumor.

For more information about VUmc, please see the following link:

The VONK-SEMMY research focuses predominantly on all glioma in children’s brains and specifically of course on glioma in the brain stem, also known as pontine glioma. In other words, since two-thirds of pediatric brain tumors involve a glioma, possible results from the VONK-SEMMY research will have a positive impact on a relatively large group of children. In the Netherlands, approximately 125 children are diagnosed with brain cancer annually and two-thirds of them, about 80 children, are diagnosed with a brain glioma. Approximately 15 per cent of pediatric brain tumors involve a brain stem tumor (Diffuse Intrinsic Pontine Glioma, or DIPG), which is about 18 cases annually. This research could be meaningful to approximately 80 children annually in the Netherlands.