Learn about DIPG — The Ryan Harvey Foundation

2025 Research Update for DIPG

1. Dr. Mark Kieran was Ryan’s doctor. Dr. Keiran’s work during Ryan’s life (2010) continues to impact the research for a cure.

“In 2010, no one biopsied children with high-risk brain cancer. It was hardly even discussed, until Mark Kieran, MD, PhD, a pediatric oncologist then at Dana-Farber, raised it with anyone who would listen. His work led to a practice of collecting miniscule brain tumor samples from certain patients prior to surgery.”

2. The $2 million dollars referenced here is from YOU! Yes, your donation!

“The question of which oncogenes might be driving pediatric low-grade gliomas inspired the formation of the Pediatric Low-Grade Astrocytoma (PLGA) program at Dana-Farber in 2007. With $2 million in funding from families with children who were being treated at Dana-Farber, the quest was on to find and block an oncogene for these cancers.”

3. HOPE

“Dr. Majzner has taken essential early steps to construct a clinical trial that will evaluate these GD2 CAR T cells in children diagnosed with DIPG. Most notable is the manufacture of the viral vector required to produce CAR T cells. A small-scale batch was created at Baylor, refined based on feedback, and is now advancing toward larger-scale production. Completion of viral manufacturing and release testing—anticipated to take an additional six to nine months—will position the team to launch the trial in the fall of 2026, enrolling approximately 20 to 26 patients, depending on safety. With only a handful of trials for DIPG and limited CAR T efforts in pediatric high-grade brain tumors, this study would be among the first of its kind.”

Excerpts taken from “Cracking the Code” The Science Driving New Possibilities for Children with Brain Tumors. https://www.dana-farber.org/newsroom/features/cracking-the-code

What is DIPG?

Diffuse intrinsic pontine gliomas (DIPG) are highly aggressive and difficult to treat brain tumors found at the base of the brain. Diffuse intrinsic pontine gliomas account for 10 percent of all childhood central nervous system tumors.

Approximately 300 children in the U.S. are diagnosed with DIPG each year. While DIPGs are usually diagnosed when children are between the ages of 5 and 9, they can occur at any age in childhood. These tumors occur in boys and girls equally and do not generally appear in adults.

DIPG affects an area deep in the brain called the Pons—part of the brainstem.

What is being done for a cure?

Some of the world’s most talented medical researchers are working on a cure for DIPG. Innovation and new research techniques bring ever-increasing knowledge and data collection to help us get closer to a cure. explain why donation so important.

DIPG and other pediatric tumors are extremely rare—which is why donation to the cause of supporting medical research for a cure is so important.

Where can I learn more?

Learn more about treatment and the latest research from experts at the Dana-Farber Boston Children’s Hospital cancer and blood diseases center.

Read the latest progress update from the Dana-Farber Cancer Institute and the Jimmy Fund. Topics in the most recent report include:

Whole genome sequencing sheds new light
Bringing immunotherapy to the clinic
Innovative models advance preclinical research
Exploring alternative biopsy methods

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