Diffuse Intrinsic Pontine Glioma | St. Baldrick's Foundation

What is DIPG?

DIPG stands for diffuse intrinsic pontine glioma. It is a type of high-grade glioma, a brain tumor that comes from cells called glia that surround, protect, and support nerve cells in the brain.

DIPG is always found in the brainstem. This part of the brain controls basic functions like breathing and swallowing, as well as muscles that help with speech and eye movements.

It is most common in elementary school-aged children, but it can affect children of any age.

About 250 kids in the U.S. are diagnosed with DIPG each year.

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Symptoms

The most common symptoms are:

trouble with eye or facial movements
(often resulting in a lazy eye or facial droop)
difficulty with movement on one side of the body
problems speaking

It’s important to know, though, that there are much more common reasons for all these symptoms than DIPG.

Diagnosis

DIPG tends to grow quickly, so most patients are diagnosed within three months of their first symptoms. DIPG is diagnosed primarily with an MRI.

Sometimes diagnosis will also involve removing a piece of the tumor, so it can be studied under a microscope. This is known as a biopsy. Biopsies help researchers learn about DIPG and can help determine what medicines might help treat that individual child’s tumor.

Treatment Options

Unfortunately, treatment options for DIPG are currently very limited. The tumors can’t be removed surgically, because the cancer cells are mixed with normal cells that are crucial for functions like breathing.

Radiation is the only therapy that has been proven to shrink these tumors and let kids with DIPG live longer. But radiation can’t make the tumor go away permanently.

Researchers have tried many chemotherapies for DIPG, but so far, none of them has worked.

The lack of treatment options and the fact that almost all DIPG patients die within two years of diagnosis make DIPG research an important and immediate need.

Research Helping Kids

Historically, one of the barriers to DIPG research has been a lack of tumor tissue. But with more patients undergoing biopsies, and with courageous families donating their children’s tumors to research after their death, researchers have been able to make some encouraging discoveries and are optimistic about having more effective treatments within the next couple of years.

Related Grants

The St. Baldrick’s Foundation is proud to fund lifesaving research throughout the world, awarding grants that focus on all major types of childhood cancers. Every grant goes through a rigorous scientific review process, ensuring every dollar has the greatest possible impact for children with cancer.

Since 2005, we have awarded 145 grants towards DIPG research.

Daniel Lee M.D.

Funded: 07-01-2012 through 06-30-2018

Institution: University of Virginia Children's Hospital

Adam Green M.D.

Funded: 09-01-2014 through 08-31-2017

Institution: University of Colorado

Rameen Beroukhim M.D., Ph.D.

Funded: 07-01-2016 through 06-30-2017

Institution: Dana-Farber Cancer Institute

Based on progress to date, Dr. Lee, was awarded a new grant in 2016 to fund an additional year of this Scholar award. Immune cells can now be engineered to recognize and kill cancer cells, then adm...

Based on progress to date, Dr. Green was awarded a new grant in 2016 to fund an additional year of this Fellow award. High-grade gliomas (HGG) are brain tumors that are usually fatal in children. ...

Diffuse Intrinsic Pontine Glioma is a type of incurable brain tumor that affects young children. Despite treatment with radiation and chemotherapy, the tumor exhibits resistance to current treatmen...

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Honored Kids

Emma F.

Waconia, MN US

Diagnosed October 2008

Angel

Children's Hospitals and Clinics of Minnesota

Just before Christmas 2008, Emma began noticing that her right eye wasn't keeping up with the left, and occasionally noticed double vision. She was taken to the eye doctor, and was then referred to an ophthalmologist, who did a variety of te...

Randy Palya

Spring Grove, IL US

Diagnosed January 2003

Angel

Randy's love for life and undying spirit have touched the lives of all who knew him. His strength, courage and faith have been an inspiration to his friends, family and community. Randy passed away at the age of 9 after a difficult and cour...

Robert Nagg

Doylestown, PA US

Diagnosed April 2011

Passed away

The Children's Hospital of Philadelphia

On Thursday, April 28, 2011, our 15 year-old son Robert was diagnosed with a malignant brain tumor at the Children’s Hospital of Philadelphia (CHOP). As we pulled out of the hospital parking garage, Robert asked from the back seat “Will I di...

See All Honored Kids

Diffuse Intrinsic Pontine Glioma (DIPG)

What is DIPG?

Symptoms

Diagnosis

Treatment Options