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Storm The Heavens Fund

Put an end to DIPG through prayer, research & awareness.

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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.
Marlee Rae
Birthday - 7/25/08
Diagnosed – 12/15/16
Date of death- January 4, 2018
Marlee Rae
Birthday - 7/25/08
Diagnosed – 12/15/16
Date of death- January 4, 2018
Janessa
Birthday - August 11, 2009
Diagnosed - September 20, 2016
Date of Death - October 17, 2017
Janessa
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.
Our Impact
Brianna “Bree” Dein
Date of Birth - 7/30/11
Date of Diagnosis - 12/1/2019
Date of Death – 5/27/2020
Brianna “Bree” Dein
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.
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Storm the Heavens Fund is a faithful community committed
to spreading awareness and funding research in order
to create a world in which no child dies from DIPG.

Contact

Storm the Heavens Fund
2424 York Street. Unit 327
Philadelphia, PA 19125
Tax ID: 82-2521813

Storm the Heavens Fund is a faithful community committed to spreading awareness and funding research in order to create a world in which no child dies from DIPG.

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