What is DIPG?
Diffuse Intrinsic Pontine Glioma (DIPG) is a uniformly fatal form of brain cancer that affects mostly children under the age of 11.
Facts about DIPG
0% survival rate
- 300-400 children are diagnosed with DIPG every year in the United States.
- Median survival is just ten months after diagnosis.
- DIPG takes away the ability to walk, talk, smile, and eventually to breathe. All while leaving the mind completely intact.
Birthday - 7/25/08
Diagnosed – 12/15/16
Date of death- January 4, 2018
Birthday - 7/25/08
Diagnosed – 12/15/16
Date of death- January 4, 2018
Birthday - August 11, 2009
Diagnosed - September 20, 2016
Date of Death - October 17, 2017
Birthday - August 11, 2009
Diagnosed - September 20, 2016
Date of Death - October 17, 2017
The leading cause of brain tumor death in children
- In 1962, American astronaut Neil Armstrong’s 2-year-old daughter, Karen, died from DIPG. Nothing has changed in the treatment options or survival rate for this disease in the almost 60 years since her death.
- DIPG is terminal upon diagnosis.
- Radiation is a palliative treatment that does not change the outcome.
We must do better!
- Only 4% of our federal cancer funding budget goes to childhood cancers. Most of the funding goes to more popular cancers, leaving DIPG with next to nothing.
Date of Birth - 7/30/11
Date of Diagnosis - 12/1/2019
Date of Death – 5/27/2020
Date of Birth - 7/30/11
Date of Diagnosis - 12/1/2019
Date of Death – 5/27/2020
Join Our Community
In Bean’s honor, Storm the Heavens Fund is committed to spreading awareness and funding desperately needed research. We believe, with your help, we can fund a cure that will give every child diagnosed with DIPG the chance to live a full, healthy life. Every child has the right to grow up to be an adult.