What is DIPG?

Learn more about DIPG awareness

DIPG stands for Diffuse Intrinsic Pontine Glioma, a rare and highly aggressive brain tumor that occurs almost exclusively in children, most commonly between the ages of 4 and 11. It forms in an area of the brainstem called the pons, which is responsible for vital bodily functions such as breathing, heart rate, swallowing, eye movement, and balance. Because of its critical location and the way, it grows, DIPG is one of the most difficult pediatric cancers to treat.

Unlike some tumors that grow in a solid, contained mass, DIPG is diffuse, meaning it spreads throughout the healthy brain tissue. This makes it inoperable that surgeons cannot remove it without damaging essential parts of the brain. Chemotherapy has proven ineffective, and while radiation therapy can temporarily reduce symptoms and slow tumor growth, it is not a cure. Most children diagnosed with DIPG are given a prognosis of just 9 to 12 months to live from the time of diagnosis. Early symptoms often include problems with balance, walking, facial weakness, slurred speech, and double vision. Because DIPG progresses rapidly, these symptoms can worsen within a matter of weeks.

Despite its devastating impact, funding for DIPG research remains extremely limited, as it is considered a "rare" disease. Families are often left without effective treatment options and must watch their child suffer while clinging to hope through experimental trials or compassionate treatments.

DIPG takes away a child's ability to move, eat, speak, and eventually even breath while leaving their mind fully intact. These children are fully aware of what’s happening to them, which makes this disease even more heartbreaking. The fight against DIPG is not just a medical challenge, but an emotional one that affects entire families and communities.