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Thank you to the ELLIE DIPG RESEARCH FUND for sharing this video and educating the world.
A Diffuse Intrinsic Pontine Glioma (DIPG) is a tumor located in the pons (middle) of the brain stem. The brain stem is the bottom most important portion of the brain, connecting the cerebrum with the spinal cord. The majority of brain stem tumors occur in the pons (middle brain stem) and are diffusely infiltrating, (they grow amidst the nerves), and therefore are not able to be surgically removed. Glioma is a general name for any tumor that arises from the supportive tissue called glia, which help keep the neurons ("thinking cells") in place and functioning well. The brain stem contains all of the "wires" converging from the brain to the spinal cord as well as important structures involved in eye movements, face and throat muscle control and sensation.
The median overall survival of children diagnosed with DIPG is approximately 9-12 months. The 1 and 2 year survival rates are approximately 30% and less than 10%, respectively. These statistics make it one of the most devastating pediatric malignancies.
The standard treatment for DIPG is 6 weeks of radiation which often dramatically improves symptoms. Unfortunately, problems usually recur after 6 to 9 months, and progress rapidly.
In their quest for a cure, DIPG children must move from one experimental protocol to another enduring treatments with many side-effects. The cruelty of this disease cannot be denied. Sparing their cognitive abilities, DIPG slowly robs children of their motor functions resulting in partial paralysis, loss of voice and sight and finally ending with an inability to eat and breath. It is both heart wrenching and painful as they are fully aware of their decline often until their last day.
We currently DO NOT know what causes brain tumors. The major causes seem to be chromosomal and genetic abnormalities. Research so far has statistically proved very few instances of possible environmental causes for childhood cancer.
Funding for pediatric brain tumor research is critical since treatments discovered for adult brain tumors may not be appropriate for children. Pediatric cancer research has been important in understanding the basic biology of cancer, treating adults with cancer and providing principles of therapy and advances for other diseases of children and adults. For example, chemotherapy was first shown to be effective in curing children with cancer. In recent years, the amount of funding for childhood cancer clinical research from the federal government has been declining.