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DIPG Awareness

What is DIPG?

Diffuse intrinsic pontine glioma (DIPG) is a rare, aggressive, and incurable pediatric brain cancer. The tumor originates in the pons, the part of the brainstem responsible for heart rate, blood pressure, breathing, and every vital function. Over time, a child diagnosed with DIPG will slowly lose their ability to eat, sleep, walk, talk, and more. Following a diagnosis, the typical lifespan is about nine months to a year.

Who is Impacted by DIPG?

DIPG primarily affects children. About 300 children are diagnosed with DIPG a year, typically between the ages of five and ten. Life should be a marathon, but these children only get a sprint.

DIPG is very rare, making up about 10%-20% of pediatric brain tumors. Because the disease is so rare, DIPG is often underrepresented. Research is also underfunded. Every child deserves the chance to live, which is why The WhyNotDevin Foundation is committed to spreading awareness to end this devastating disease and its impact on children and their loved ones.

Causes of DIPG

Similarly to most other cancers, DIPG is associated with errors during the cell reproduction process. In the case of DIPG, these errors occur within the brain's glioma cells, which are responsible for protecting the brain's nerve cells.

Unfortunately, little else is known about the causes of DIPG. There is no research to suggest that genetics play a role. While other cancers can be attributed to certain lifestyle choices, there is also no evidence to suggest that this is the case for DIPG. Exposure to certain hazards - such as chemicals or radiation - are not known to be connected, either.

DIPG is unpreventable. There is no vaccine, medication, or treatment to protect children from this terrible illness. Although researchers are working to learn more about the causes of DIPG and to determine a potential prevention, there is no clear answer.

DIPG Diagnosis

DIPG is normally diagnosed using MRI imaging. This provides doctors with a detailed image of the tumor. A biopsy can also be performed, which helps determine the genetic mutation of the tumor. Biopsies have only recently become more popular with DIPG patients.

An early diagnosis can expedite treatment, but children diagnosed with DIPG typically only have about a year left to live. Children and their loved ones receive this devastating news, but there is no solution.

DIPG Treatments

There is no cure for DIPG. Radiation is the only known treatment that may give the patient a longer life span.

Radiation therapy uses intense energy from a machine to shrink or damage tumors. The goal is to stop them from growing. Radiation therapy is recommended for DIPG patients over the age of 3. The results are short-lived. The tumor may shrink, but it cannot be eliminated completely.

Experimental chemotherapy is another option, in which doctors can determine and administer a drug-based treatment plan. However, there are no known drugs that work for DIPG patients. DIPG occurs in the brain, and there aren't many drugs that are able to bypass the brain-blood barrier. The brain-blood barrier is designed to prevent harmful substances from entering the brain, so it can reject certain drugs. Similarly to radiation therapy, experimental chemotherapy has short-term impacts. 

Since there aren't many treatments for DIPG, researchers are constantly looking for potential solutions. Many DIPG patients participate in clinical trials. These trials help determine whether a potential treatment is effective in shrinking or delaying tumors.

Immunotherapy may prove to be a promising treatment in the future. Researchers are working on an innovative new immunotherapy treatment, called CAR T therapy. CAR T cell therapy involves isolating a patient’s immune cells, engineering them to become “super killer cells” and then re-infusing them into the patient to fight their cancer. 

In 1962, Neil Armstrong’s daughter died of DIPG two years before walked on the moon. Sixty two years later, a child’s diagnosis is still the same, no known treatment and no survivors.

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