What Families Should Know About DIPG

DIPG is a rare childhood brain tumor. Learn about the condition, treatments, and research.

What is DIPG/DMG?

What is DIPG/DMG and Why Finding Effective Treatment Remains So Challenging

DIPG develops in the brainstem, DIPG and DMG: The Same Disease, Different Names

Under the 2021 WHO classification, DIPG is now classified as a type of diffuse midline glioma (DMG), H3 K27-altered. About 80-85% of DIPG tumors carry this specific genetic mutation. You may hear doctors use either term. DIPG refers to the tumor’s location in the pons (brainstem), while DMG is the broader molecular classification. Both describe the same devastating disease

Who DIPG Affects

DIPG primarily affects children between the ages of 5 and 10, with a median age at diagnosis of 6-7 years. It affects boys and girls equally. About 300 children in the United States are diagnosed each year. There are no known risk factors or ways to prevent it.

FACTS

Key Facts That Highlight the Urgency of DIPG Research and Support

300

Children Diagnosed Per Year

About 300 children in the U.S. are diagnosed with DIPG each year.

8-11

Months

Median Survival

The average survival from diagnosis is 8-11 months

50+

Years

No Change in Prognosis

DIPG’s survival rate has remained essentially unchanged for over 50 years

#1

Deadliest Pediatric Brain Cancer

DIPG causes nearly half of all pediatric brain tumor deaths

Key Characteristics

Understanding How DIPG Affects the Brain

Brainstem Location

Develops in the brainstem, which controls breathing, heartbeat, balance, and movement.

Surgery Is Not Possible

DIPG spreads through healthy tissue instead of forming a removable mass.

Rapid Symptoms

Symptoms can appear quickly, including speech difficulties, balance loss, and vision problems.

Highly Aggressive

DIPG is one of the most aggressive childhood brain cancers, with no permanent cure yet.

the Signs

Recognizing The Common Symptoms of DIPG

Difficulty with Eye Movement

Children may experience blurred vision, double vision, or difficulty focusing properly.

Balance & Walking Problems

Loss of coordination can affect walking, balance, and everyday movement activities.

Speech Difficulties

Speech may become slower, unclear, or difficult for others to understand.

Frequent Headaches

Persistent headaches may increase over time and affect daily comfort and activity.

Weakness in Limbs

Weakness in the arms or legs may gradually impact normal movement abilities.

The brainstem controls breathing, heartbeat, balance, and movement.

Treatment Challenges

The Challenges Behind Treating DIPG

DIPG develops in one of the most sensitive areas of the brain, making treatment extremely challenging. Its aggressive nature and limited treatment options continue to make research and clinical trials critically important.

Treatment Approaches

Best Practices for kids diagnosed with DIPG/DMG

DIPG has no cure. Every current treatment is palliative, able to relieve symptoms and extend time but not to save a child’s life. Research is the only thing that changes that.

Radiation Therapy

The only standard of care. Temporarily improves symptoms in about 80% of children but is not a cure. Extends survival by approximately 3 months on average.

Surgery

Not possible. DIPG grows diffusely throughout the brainstem (pons), making surgical removal impossible. Biopsy may be performed for molecular profiling.

Chemotherapy

Has not been shown to improve survival and is not standard of care.

Clinical Trials

The best hope for progress. New approaches include immunotherapy, targeted therapies, and direct drug delivery (CED)

The Funding Gap

About 8% of the U.S. National Cancer Institute budget goes to all pediatric cancers combined.DIPG, as one of many pediatric cancer subtypes, receives only a fraction of that. Progress depends on private philanthropy and family foundations like ours.

Fewer than 8% of the federal government's cancer-research budget goes to childhood cancer. (Source: American Cancer Society Cancer Action Network.)

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