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Research

Learn about Current and Past Projects funded by the Storm The Heavens Fund.

Latest Projects

​Storm the Heavens Fund’s most recent research project is $300,000 commitment to support The Diffuse Midline Glioma-Adaptive Clinical Trial (DMG-ACT).

The DMG-ACT team consists of investigators from around the world — scientists and clinical researchers — who all came together to collaborate to find better ways to treat our children, share data in real-time, and assess new therapies in multiple laboratories so that only the best-validated treatments are being moved forward into the clinic. The clinical team will develop an adaptive trial that will allow for the opening and closing of treatment arms based on any new information derived from the clinic or the lab. We aim for an agile platform that will allow us to bring exciting discoveries from the laboratory into the clinic quickly. The trial is run through the Pacific Pediatric Neuro-Oncology Consortium (PNOC) — a clinical trial consortium consisting of 19 sites in the United States as well as international sites in Australia, Canada, and Europe.

Participating locations include:

  • Children’s National Medical Center
  • Children’s Hospital of Philadelphia
  • Dana Farber Cancer Institute
  • John Hopkin’s University
  • University of California San Francisco
  • Seattle Children’s Hospital
  • Diffuse Midline Glioma Center, University Children’s Hospital Zurich
  • Hudson Institute of Medical Research
  • University of Michigan

The trial has an estimated total cost of over $4 Million. Storm of Heaven Fund was one of the first foundations supporting this project.

For information on our other research projects, check out our website at www.stormtheheavens.org

Current & Previous Projects

We are an official Foundational Partner in the DIPG Collaborative (dipgcollaborative.org).

The DIPG Collaborative was founded in 2011 by The Cure Starts Now (thecurestartsnow.org). The collaborative is a cooperative effort of independent foundations from around the world that join together to support long term DIPG research, eliminating duplication, enhancing transparency, and building cooperative channels. As a Research Partner, Storm The Heavens Fund has already contributed $52,000 to the DIPG Collaborative for research projects. We are committed to a minimum annual contribution of $25,000 to the collaborative.

To date, the DIPG Collaborative has produced four DIPG Collaborative Symposiums featuring experts from over 15 different countries. The Collaborative supported the development of the International DIPG Registry and the SIOPe DIPG Registry and has funded over $7.3 million in innovative trials. We are helping to find a home run cure for cancer by going after the biggest bully of them all.

The Philomena DIPG Research Initiative Project, a two year, $322,000 research project lead by Dr. Charles Keller, MD at the Children’s Cancer Therapy Development Institute (cc-tdi.org). This project was funded 100% by Storm The Heavens Fund. The neurobiologist–biomedical engineering team is focusing their
research on “The Tumor Cell Hotel – an implantable device whereby DIPG checks in but does not check out.” The goal is to bait DIPG tumor cells into The Tumor Cell Hotel, a thin film with an attractant “bait” and a sticky
“trap” that would be applied by a neurosurgeon through the middle cerebellar peduncle and replaced periodically to remove the DIPG cells. To learn more about The Philomena DIPG Research Initiative Project visit https://www.cc-tdi.org/open-science-forum-the-dipg-tumor-cell-hotel/

Alex’s Lemonade Stand Foundation (ALSF)- In 2019 Storm the Heavens Fund contributed $25,000 to ALSF to fund a grant for a DIPG specific project out of the University of Michigan.

Together we can put an end to the 0% survival rate of DIPG.