Understanding the Disease
What is DIPG?
Diffuse Intrinsic Pontine Glioma is a rare and aggressive brain cancer that primarily affects young children. Behind every statistic is a child, a family, and a community forever changed.
In Loving Memory
The Children Who Inspire Our Mission
These beautiful children lost their lives to DIPG. We honor their memory by fighting for a future where no family has to endure this heartbreak.
Marlee Rae
Born: July 25, 2008
Diagnosed: December 15, 2016
Forever in our hearts: January 4, 2018
From the moment of diagnosis, families are told there is no cure. Every remaining day becomes a gift — and a battle.
Janessa
Born: August 11, 2009
Diagnosed: September 20, 2016
Forever in our hearts: October 17, 2017
Despite decades of research, no treatment has meaningfully changed the outcome for children with DIPG. Progress has been heartbreakingly slow.
Brianna "Bree" Dein
Born: July 30, 2011
Diagnosed: December 1, 2019
Forever in our hearts: May 27, 2020
The children who need it most receive the least. Private donations are often the only lifeline for DIPG research.
Understanding the Disease
DIPG is a pediatric brain tumor that grows in a child's brainstem. It weaves through healthy tissue, making surgery impossible. Over time, it takes away the ability to walk, talk, smile, and eventually breathe. Throughout it all, children remain fully aware.
Side view showing where DIPG tumors develop in the brainstem
Image credit: Levi's Project
What the Name Means
Diffuse
Woven throughout healthy brain tissue, not a single mass. It cannot be surgically removed.
Intrinsic
Starts inside the brainstem itself. It does not spread from somewhere else in the body.
Pontine
Located in the pons, which controls breathing, heartbeat, swallowing, and eye movement.
Glioma
A tumor that forms from glial cells, which normally support and protect the brain.
Median survival after diagnosis
Children diagnosed each year in the U.S.
Five-year survival rate
DIPG most often affects children between 5 and 10 years old. Boys and girls are diagnosed equally. There are no known causes and no way to prevent it. It strikes without warning.
Radiation therapy: the only standard treatment for DIPG
Why Research Is Critical
The only standard treatment for DIPG is radiation therapy. It can temporarily ease symptoms, but it does not extend survival in a meaningful way. It offers comfort, not a cure.
Less than 4% of federal cancer research funding goes to all childhood cancers combined. That leaves diseases like DIPG with almost nothing. Private funding through organizations like Storm The Heavens Fund helps support the research that could one day lead to a breakthrough.
New approaches like immunotherapy and targeted treatments are showing early promise. But they need funding to move from the lab to clinical trials, where they can actually help children.
Join Our Community
In Bean's honor, Storm the Heavens Fund is dedicated to spreading awareness and funding the research that could change everything. With your help, we believe we can give every child diagnosed with DIPG the chance to live a full and healthy life.
Every child has the right to grow up to be an adult.
