The DIPG DMG Research Funding Alliance (DDRFA) Announces Its First Grant Recipients totaling $700,000

DDRFA is powered by families who know first hand lives are depending on them. The over 60 foundation members of DDRFA raise scarce funds needed to research arguably the most deadly childhood cancer killing over 400 children in the US annually.  We are driven by hope that the next child’s story need not end the same.  DDRFA is driven funding basic and translational research, clinical trials and expanded access, and data discoveries.  We collaborate to fuel discoveries in DIPG and DMG as quickly as possible.

DDRFA’s Fall 2023 grant recipients and their respective projects are as follows:

  1. Dr. Erin Gibson and Dr. Laura Prolo, Stanford University: Targeting Circadian Regulation of Epithelial – Mesenchymal Transition and Tumor Invasiveness in Pediatric Gliomas.
  2. Dr. Adam Green, Children’s Hospital of Colorado: Adding Bortzomib through Focused Ultrasound to Selinexor and Radiation in Lab Models to Determine Whether There is a Positive Response Against DIPG.
  3. Dr. Anahita Kazerooni, Children’s Hospital of Philadelphia: Prediction of Tumor Progression in Patients with DIPG DMG Using Volumetric Measurements Obtained Via Automatic Deep Learning Brain Tumor Segmentation.
  4. Dr. Stuart Marcus, Sonalasense: Phase 1 / 2 of Sonodynamic Therapy using SONALA-001 and Exablate 400 Type 2 in Patients with DIPG.
  5. Dr. Carl Koschmann, University of Michigan: Mioncoseq Sequencing of Patients for the DIPG DMG National Brain Tumor Board. 
  6. Dr. Capucine Van Rechem, Stanford University: Characterizing the Roles of the H3.1K27M and H3.3K27M Mutations to Reveal New Treatments and to Expand the Frontier of Personalized Treatment.
  7. Dr. John Prensner, University of Michigan: Deciphering aberrant RNA translation in DIPG, the purchase of the ultra centrifuge.

DDRFA congratulates the successful recipients and looks forward to the results of these grant projects as we work together to end the ravages of DIPG DMG as we know it.  

DDRFA welcomes new members to join the DDRFA Annual Meeting September 23rd, Washington, DC

The second In-person meeting of the Members of DDRFA will be held on September 23, 2023 at the JW Marriott, Washington, DC.  The meeting is a perfect time for foundations, families or funds who wish to join DDRFA to do so.  The annual contribution required for membership is $5,000 due on September 1 each year.  This contribution is used to first fund the DIPG DMG National Brain Tumor Board and thereafter for grants.  At this meeting we will discuss our strategic goals for the coming year, areas in which committee assignments will be made and improvements DDRFA hopes to offer the DIPG DMG Community in the areas of research, data and clinical trial expansion by working together.  If you are interested in joining DDRFA, please contact Lisa Ward or Sarva Channarajurs at or respectively.

Thank you to every DDRFA Member for a fabulous first year.

DDRFA completes first year investing $1.6 Million in 13 grants and the DIPG DMG National Brain Tumor Board

DDRFA concludes its first year with a remarkable achievement of having directed $1.6 million towards groundbreaking research, data initiatives, clinical trial expansion and the creation of the ONLY DIPG DMG National Brain Tumor Board.  Only through the generous support and commitment of 50+ foundations to collaborate are we to fuel discoveries in hopes of leading to curative treatment for DIPG and DMG as quickly as possible.

DDRFA’s Spring 2023 grant recipients and their respective projects are as follows:

  1. Carl Koschmann, MD, University of Michigan: CLIA certified assays for plasma based disease response monitoring in histone mutant DIPG DMG.
  2. Javad Nazarian, PhD and Sean Mizoguchi, PhD, Children’s National Hospital: In Vivo Studies to Transform DIPG DMG Research & Care through rapid validation of effective combinatorial therapies.
  3. Tim Stuhlmiller, PhD, xCures and Santosh Kesari, MD, PhD, Pacific Neuroscience Institute – A patient centric platform approach for DIPG DMG natural history and efficient clinical data exchange.
  4. John Ligand, MD, University of Florida, Impact of RNA nanoparticle vaccine on immune response to DIPG DMG.
  5. Javad Nazarian, PhD, Children’s National Hospital and Aaron Diaz, PhD, UCSF – Mapping DMG response and resistance to therapy.

Through the collaboration and generous contributions of our foundation partners, and their donors, we are paving the way for remarkable breakthroughs in an effort to change the path for the next lives affected by DIPG DMG.  With each grant, we fuel hope for a future without this tumor’s ravages.

DDRFA announces Round III Grant Funding Application Deadline as September 25

The current Round III grant application is open and DDRFA is eagerly awaiting the opportunity to invest in groundbreaking basic and translational research, clinical trials, and data collection, analysis and use.  We’re looking for new ideas aimed at learning more about DIPG and DMG, new methods to potentially treat the tumor or combat side effects to extend life or quality of life.  We know DIPG Won’t Wait, and we won’t either.  To be eligible, the majority of grant activity must take place in the United States.  DDRFA will accept grant applications until midnight PT on September 25.  Thereafter, DDRFA’s Medical Advisory Council will review the applications, present the scoring to the DDRFA members, who will each have the opportunity to fund any and all applications made. Grant Announcements are expected to be made in late November.  Please review the application and contact DDRFA at should you have further questions.

Join DDRFA now

There are 60+ family-created foundations and funds who proudly invested in the DIPG DMG Research Funding Alliance (DDRFA) as founding members. DDRFA is formed to focus singularly on advances for the deadliest childhood cancer: DIPG DMG. Together, we commit to funding innovative research, providing access to trials, and integrating and utilizing data 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 know all too well that lives depend on us. We know DIPG DMG won’t wait. Donate today to bring us closer to saving the lives of children diagnosed with DIPG/DMG. If you would like to help, please contact us to become a DDRFA member or donate as you can! Donate here: DIPG – DMG Research Funding Alliance – Arms Wide Open Childhood Cancer Foundation #DDRFA #becauselivesdependonit #FundDMGTogether #DDRFAPoweredbyfamilies #DIPGWontWait #Goldstrong #CancelChildhoodCancer

DDRFA is READY to award competitive grant funds

DDRFA is READY to award competitive grant funds ranging from $25K to $100K to researchers, clinicians, and data scientists across the nation who are advancing DIPG DMG-directed initiatives. Watch for the RFP on our website August 3.

Help spread the word! DDRFA’s Medical Advisory Council (MAC) will score the applicants’ research proposals and our members will determine which high-scoring application(s) to fund.

The first round of grantees will be announced at the Tough2Gether Against DIPG Breakfast at CureFest for Childhood Cancer on September 24th!

Don’t wait – Join DDRFA now and be part of the first competitive grants.

Learn more here:

DDRFA commits $50,000 over two years to the Children’s Brain Tumor Network (CBTN).

DDRFA commits $50,000 over two years to the Children’s Brain Tumor Network (CBTN). “We believe patient data is powerful in guiding researchers to develop better treatments for our kids,” said Kirsten Finley, co-founder of Cannonballs for Kayne. DDRFA will provide direct input as part of CBTN’s Executive Council. Working with CBTN’s Executive Council, DDRFA seeks to prioritize access, machine learning, and opportunities for precision medicine in DIPG DMG. Perhaps only cancer parents would take immediate action upon learning there were only 61 fully sequenced DIPG tumors available in the largest open database in the world. “What about other donated tumor samples? CBTN was waiting for funding to sequence them,” explained Mina Carroll, co-founder of Storm the Heavens. “After researching all other shareable registries, none had more data. The sequencing of mutations and such was not reaching the researchers who needed it through an openly query-friendly database,” explained Carroll. “In response, we contacted The Broad Institute through Count Me In to ask for help. The Broad Institute agreed and then the incredible CBTN staff received an additional whopping $40M NIH grant to sequence all 6500 pediatric brain tumor-related specimens. This is the biggest data cohort in ALL pediatric cancer.” explained Lisa Ward. CBTN is now firmly established as THE largest biorepository of open, shareable, most precious de-identified tissue and data. The following Members of DDRFA made this grant possible: Arms Wide Open Childhood Cancer Foundation; Cannonballs for Kayne; Hope for Harlee Fund; Dean’s Dream Foundation; Mithil Prasad Foundation; Morgan Adams Foundation; Storm the Heavens; and Tough2gether Against DIPG. If you would like to support DDRFA’s investment in CBTN, please donate - to DDRFA. Learn more about the Children’s Brain Tumor Network here: #DDRFA #becauselivesdependonit #FundDMGTogether #DDRFAPoweredbyfamilies #DIPGWontWait #Goldstrong #CancelChildhoodCancer