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Stanford Car-T Cell Trial

Storm the Heavens has been working to bring a cure to DIPG since Philomena’s diagnosis in 2016. Never have we been as inspired by the success of a trial as we are with the Stanford University Car T Cell trial.

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Additional Research

In 2020, Storm the Heavens Fund donated $10,000 to Oncoceutics, a clinical-stage drug discovery and development company.  The donation was to assist in funding an Expanded Access program for ONC201 in the United States. To date, Storm the Heavens Fund has contributed an additional $47,500 to various other foundations and institutions.

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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.

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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.

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Diffuse Midline Glioma-Adaptive Clinical Trial

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 is working to 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 the Heavens was one of the first foundations supporting this project.

The DIPG Collaborative

In 2018 Storm the Heavens Fund joined the DIPG joined the DIPG Collaborative (http://dipgcollaborative.org/ ), as a Foundational Partner. The DIPG Collaborative was founded in 2011 by The Cure Starts Now (thecurestartsnow.org). The DIPG 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. To date, the DIPG Collaborative has produced three 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 $11 million in innovative trials. We are helping to find a home run cure for cancer by going after the biggest bully of them all. Storm the Heavens has contributed over $87,000 to the DIPG Collaborative to date and we are committed to increasing our contributions every year.

The Philomena DIPG Research Initiative Project

Storm the Heavens is funding a 2-year $322,000 research project lead by research Dr. Charles Keller, MD at the Children's Cancer Therapy Development Institute (cc-tdi.org). The project is being 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. For more information on the Philomena DIPG Research Initiative Project, please visit bit.ly/PhilomenaProject.

Alex’s Lemonade Stand Foundation

In 2019 Storm the Heavens Fund has partnered with ALSF to jointly fund innovative research for Diffuse Intrinsic Pontine Glioma (DIPG). Storm the Heavens has contributed $25,000 to ALSF to fund a grant for a DIPG specific project out of the University of Michigan. ALSF has agreed to match those funds, providing a larger impact on innovative therapies for DIPG.

Stanford Car-T Cell Trial

Storm the Heavens has been working to bring a cure to DIPG since Philomena’s diagnosis in 2016. Never have we been as inspired by the success of a trial as we are with the Stanford University Car T Cell trial. In the first five patients treated beginning in 2020, all experienced a reduction of symptoms and/or tumor shrinkage. We are teaming with donors and foundations to fund a nurse practitioner position that will collect research from patients and provide the direct link from bedside to bench. The position must be filled to expand the trial for more patients now. By doing so we give more kids the chance at life and better quality of life. We also speed the needed research to continue to improve the trial to bring a cure. “There is simply nothing available other than this Car T Cell trial after initial radiation that is reducing a tumor-like mine by 50% in some areas and 25% overall without any of the tumor growing back for 3+ months now. I have regained the ability to talk clearly, the feeling in my face and limbs, and my walk is better. To know other kids could have this chance NOW if we fund this position means everything to me. If you could see how hard this team of doctors and nurses is working. The way they literally are running from clinic to our hospital bed to collect all the blood, cyst fluid, and CSF fluid they can to learn quickly you would understand this need. With every dose, I’m telling them what would be too much for a younger child or what is very tolerable. They are crafting solutions with every dose for a better result. It is the right team and they just need to have funding to expand.” Jace Ward, currently patient 1 at Stanford. Hear from Jace himself, here: https://vimeo.com/542804826/c61c515fd6

Storm the Heavens is raising $250,000 to fund the Nurse Practitioner position this year. We plan to commit for two years. To do so we need your help now. With every patient, the team is learning more and more to optimize the success. An average of 350 kids die from DIPG every year. We must do better. We must fund trials that show promise now. We welcome your donation. If you are a business or foundation that would like to partner, we welcome the shared effort as well and would be honored to add your logo as well to this effort. There is no cause greater than the fight for our children’s right to grow up to be adults.
You can make a donation here:
https://www.flipcause.com/secure/cause_pdetails/MTE0NDM0

DIPG/DMG Research Funding Alliance (DDRFA)

Storm the Heavens Fund proudly invested in the DIPG/DMG Research Funding Alliance (DDRFA) as a founding member. DDRFA is formed to singularly focus on advances for the deadliest childhood cancer DIPG/DMG.  Together with over fifty members, we commit to fund innovative research, access to trials, data integration and utilization for DIPG/DMG. While members may fund research outside this targeted alliance, the work of DDRFA seeks to place strategic investments when and where necessary to bring advances in treatment, eradication, diagnosis and prevention of DIPG/DMG. DDRFA’s Medical Advisory Council (MAC) guides our investments and  challenges grantees by incentivizing patient centered collaboration and sharing of information to speed the pace of discovery. DDRFA is powered by groups of passionate people who, like (your Foundation/Fund), know all too well that lives depend on us. We know DIPG/DMG won’t wait.

Additional Research

In 2020, Storm the Heavens Fund donated $10,000 to Oncoceutics, a clinical-stage drug discovery and development company.  The donation was to assist in funding an Expanded Access program for ONC201 in the United States. ONC201 is an investigational medicine that is being evaluated in Phase I and Phase II trials.

The program will allow Oncoceutics to work with physicians practicing in the United States to provide ONC201 to patients with H3 K27M-mutant glioma, including DIPG, who meet certain eligibility criteria and who cannot otherwise access ONC201 by participating in an ongoing clinical trial. The Expanded Access program has been made available to select hospitals across the United States,

For more information:   https://oncoceutics.com/oncoceutics-receives-foundation-grants-to-establish-an-expanded-access-program-for-onc201/

As of 2023, Storm the Heavens Fund has also donated $5,000 respectively to Brain Storm Summit, CureFest and Tough2Gether Breakfast.