What is DIPG?

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 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.
Source: The American Brain Tumor Association

Treatment

The median overall survival of children diagnosed with DIPG is approximately 9 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.
Source: Treatment of newly diagnosed diffuse brain stem gliomas in children - David N. Korones
Source: St Jude Childrens Research Hospital In their quest for a cure

Side Effects

DIPG children must move from one experimental protocol to another enduring treatments with many side-effects which would be unacceptable with any other diagnosis. 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 breathe. It is both heart wrenching and painful as they are fully aware of their decline often until their last day. HELP US FIGHT AND FIND THE CURE!
Source: The Cure Starts Now

Funding is Critical and Declining!

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.
Source: CureSearch

The National Childhood Brain Tumor Prevention Network Act of 2009

There are two bills in congress right now tasked with creating a National Childhood Brain Tumor Prevention Network. The aim is to get funding for reasearch in the area of childhood brain tumors. These bills need your help to get passed.

For very detailed instructions on how you can help keep these bills moving, read this article published by the Brain Tumor Foundation for Children.