In the Netherlands, approximately 125 children are diagnosed with brain cancer annually. 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.
It is well-known that there are large charities in the Netherlands that collect funds for cancer research, such as the KWF and Kika. However, it is less well-known that these funds only finance research that is about to produce results.
In other words, virtually no funding is given for research that is in its early phases.
Brain stem cancer is rare, affecting just 1 in 250,000 children, and its rarity means that it is not interesting for the pharmaceutical industry to support scientific research into the disease.
Unfortunately this means that in the Netherlands, every two to three weeks a child dies due to brain stem cancer. In the US, almost every day a child dies due to DIPG.
This is why it is essential that, with your help, we raise money ourselves in order to be able to make this terrible disease treatable.
The VONK-SEMMY research carried out by VUmc in Amsterdam focuses broadly on all pediatric brain gliomas, and specifically on brain stem cancer or DIPG. Since two-thirds of pediatric brain tumors involve a glioma, possible outcomes of the VONK-SEMMY research can have a positive impact on a relatively large group of approximately 80 children in the Netherlands annually.
We can use the funds to set up research projects, and when results are imminent, we can request funding from the large cancer charities.
The more projects we can set up, the greater the chances of success.
For a life with hope after diagnosis!