Every year about 125 children in the Netherlands are confronted with a brain tumor. Approximately 15% of brain tumors in children is a brainstem tumor (DIPG / pons glioma), about 18 cases per year. The survival rate of a brain tumor is in fact almost 0% after diagnosis with a life expectancy of 2 to 12 months. Stichting Semmy (Semmy Foundation) is funding the VUmc research VONK-SEMMY.
It is well known that there are several large funds in the Netherlands who are raising money for research against (children’s) cancer. But it is not commonly known that these funds only finance research when results are expected in the short term. Hardly any money is provided for research that is still in its early stages.
Despite the numbers above, brainstem cancer (DIPG / pons glioma) is relatively rare. As a result the pharmaceutical industry has no interest in supporting scientific research.
Unfortunately, this does mean that every 2 or 3 weeks a child dies in the Netherlands because of a brainstem tumor (DIPG / pons glioma), and in the US almost one every day.
Therefore it is necessary that we collect the funding ourselves to treat this terrible disease, through our own initiatives and with your help.
Our frustration is that the success rate of curing brainstem cancer (DIPG / pons glioma) is still almost 0% percent and that parents are suddenly confronted with the knowledge that they will lose their child between 2 and 12 months time. And this while at the same time the survival rate of other forms of childhood cancer has fortunately increased to over 70%. The research VONK-SEMMY at VUmc Amsterdam focuses broadly on all gliomas in children’s brains and of course specifically on gliomas in the brain stem, or the so-called pons gliomas (pontine glioma). In other words, since two-thirds of brain tumors in children is a glioma, a possible successful result from the study VONK-SEMMY can have a positive effect for a relatively large group of about 80 Dutch children per year.
