What is DIPG?
DIPG, or diffuse intrinsic pontine glioma, is a rare and aggressive brain tumor found in children. It’s a type of high-grade glioma, originating from glial cells that support and protect nerve cells in the brain. The tumors are always located in the brainstem, the part of the brain responsible for essential functions like breathing, swallowing, speech, and eye movements.
DIPG is most common in children between the ages of 5 and 10, but it can affect kids of any age. Each year, about 300 children in the United States are diagnosed with DIPG.
I’ve heard DIPG is now called diffuse midline glioma (DMG). What does that mean?
You may hear doctors and researchers use the term “diffuse midline glioma,” or DMG, when talking about DIPG. That’s because our understanding of these tumors has evolved.
DIPG refers specifically to tumors that form in the pons, a part of the brainstem. Today, DIGPs are classified under the broader category of DMG, which includes similar tumors that occur in other midline areas of the brain and spinal cord. This updated classification helps researchers group these tumors more accurately and work toward better, more targeted treatments.
You’ll still hear the term DIPG, especially when referring to tumors in the pons, but DMG is the more modern, scientific classification. Both terms are often used, and both refer to incredibly serious childhood brain tumors that urgently need better treatment options.
What are the symptoms?
DIPG symptoms often develop quickly, with most children being diagnosed within three months of their first signs. The most common symptoms include:
- Difficulty moving one side of the body
- Problems with facial or eye movements, such as a lazy eye or facial droop
- Trouble speaking or slurred speech
It’s important to note that these symptoms can also be caused by less serious conditions, so always consult a doctor if they occur.
How is DIPG diagnosed?
Doctors primarily diagnose DIPG with an MRI scan, which provides detailed images of the brain and helps identify the tumor’s location and characteristics.
Today, a biopsy is increasingly considered standard of care, and every patient should be offered one at the time of diagnosis. During a biopsy, a neurosurgeon removes a small piece of the tumor for analysis. This not only helps confirm the diagnosis but also provides important tumor tissue.
These tissue samples are critical for understanding the tumor’s genetic and molecular features, which can guide more personalized treatment decisions. This information may also allow patients to enroll in clinical trials testing new targeted therapies.
What treatment options are available?
Unfortunately, treatment options for DIPG remain very limited. Surgery isn’t possible because the tumor weaves through vital brainstem cells that control critical functions like breathing.
Current treatment options include:
- Steroids and Radiation therapy: This is the most effective option so far. It can shrink the tumor and temporarily relieve symptoms, but it cannot cure DIPG or permanently remove the tumor.
- Chemotherapy: Despite many trials, no chemotherapy has proven effective alone. However, it’s being used in clinical trials in combination with radiation and other therapies.
Almost all children with DIPG pass away within two years of diagnosis, highlighting the urgent need for better treatments.
How is research helping children?
In recent years, researchers have made significant strides in understanding DIPG. Families have increasingly opted for biopsies or chosen to donate tumor tissue after their child’s death, giving scientists valuable opportunities to study the disease more closely.
Key research advancements include:
- 2025 FDA approval of dordaviprone for relapsed/recurrent DMG for patients 1 year and older.
- Identifying genetic mutations that drive DIPG, paving the way for targeted therapies and novel immunotherapies.
- Developing new drugs that show promise in laboratory studies.
- Improving techniques to deliver medications directly to the tumor, bypassing the blood-brain barrier.
These breakthroughs are now fueling clinical trials, and researchers remain hopeful that more effective treatments will soon become available.
Support DIPG Research
The urgent need for effective DIPG treatments emphasizes the importance of continued research. Every biopsy and every tumor donation brings us closer to understanding this devastating disease and discovering a cure. Help support these efforts and give hope to countless families.
Donate now and help support research into better treatments for kids with cancer.
Learn about one of our Honored Kid’s stories on dealing with DIPG:
Holding on to Hope: Our Family’s DIPG Story
