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Ready to advance DIPG DMG Directed Initiatives?

DDRFA Round IV Grant Applications are now open!

DDRFA grants supports basic and/or translational research, access to trials or expanded access and collection, harmonization, integration or utilization of patient data, which is openly shared.

Application deadline – May 1st 2024

Send completed applications to info.ddrfa@gmail.com

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WE ARE FIFTY + SEPARATE NON PROFITS & FUNDS

which make grants together for research, trial access and data integration or utilization. We are passionate about providing funds to develop an understanding of Diffuse Midline Gliomas, including Diffuse Intrinsic Pontine Gliomas. In our first year, we have funded $1.6 Million together for DIPG DMG research, data, trials and the national tumor board formation. We’re not done. Our next competitive grant round will be awarded in November 2023. We continue to fund the DIPG DMG National Brain Tumor Board, Executive Council Membership in Children’s Brain Tumor Network and research, data and clinical trial grant projects that matter to families fighting DIPG DMG.

Our Goal is to Fund Research

Support access to treatment, prevention, diagnostics and better use of data in DIPG/DMG. One day soon we hope to help our committed researchers and doctors by together funding the cure for this most deadly childhood brain tumor. Learn more about resources available to families impacted by DIPG DMG at www.DIPG-OneLink.org established September 2023.

ABOUT DIPG | DMG

Diffuse Midline Gliomas, including Diffuse Intrinsic Pontine Gliomas, are cancerous brain tumors considered terminal at diagnosis. Generally, at diagnosis, a patient is given less than one year to live. DIPG most typically affects children ages 4 to 12. However, DIPG and DMG can impact children or adults. DIPG/DMG takes the walk, talk, speech, swallow, use of hands and arms, eyesight, and hearing of the person impacted. Usually one side of the body and the opposite side of the head is affected. Symptoms often start with double vision or an eye turning inward, maybe a slight limp or unsteadiness. Over time the symptoms will progress until this cancerous tumor takes the last breath and stops the heart of the person with DIPG/DMG. Standard treatment has not changed for over 60 years. However, working together with committed researchers and providers, we believe a better future for those with DIPG/DMG is within reach.

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ABOUT DDRFA

The DIPG DMG Research Funding Alliance was established 2-22-2022 by nonprofits desiring to fund research, trial access, and data needs at the speed of DIPG/DMG. We are powered by families and we won’t stop working to end DIPG/DMG as we know it. Each member knows all too well that lives depend on us. Our Medical Advisory Council guides our funding by reviewing grants and engaging regularly with our grantees to champion collaborative efforts necessary to change the course of DIPG/DMG.

Our Family of Foundations

Over $2.5M funded by DDRFA since June 2022 including $2M in grants and $600K in tumor board support!

Round III Grant Recipients, their projects and DDRFA Members who have funded these projects:

Jasper Van der Lugt, M.D., Princess Maxima Center for Pediatric Oncology

Leverage biospecimens and data from PNOC022 clinical trial in an effort to better comprehend the role of the intestinal microbiome in relation to treatment response. The results of this research have the potential to support the hypothesis within PNOC022 that changes in the microbiome can serve as predictive markers for clinical outcomes in pediatric DMG.

The DDRFA funders include: Elle’s Angels Foundation, Rally! Foundation for Childhood Cancer Research, Princess Hailey’s Hope Foundation, The Morgan Adams Foundation; Tough2gether Foundation and Magic for Maddie.

Nicholas Vitanza, M.D., Seattle Children’s Hospital

Evaluation of promising drugs against DMG in combination with B7-H3 CAR T cells. Dr. Vitanza’s team aims to assess the efficacy of these therapies in killing DMG cells and to understand how the drugs impact the function of the CAR T cells. His goal, ultimately, is to advance combinational clinical trials that maintain the effectiveness of the CAR T cells.

The DDRFA funders include: Levi’s Legacy DIPG Foundation, Gold Rush Cure Foundation, Team Landon Clay Foundation, Magic for Maddie, Tough2gether Foundation with the Abernathy Family in memory of Kaia, Avery Strong: Avery Huffman DIPG Foundation,Team Cozzi Foundation, Live Gray’s Way with the Wainhouse Family in memory of Zander, Noah Brave Foundation, The GWEB Never Forgotten Foundation, and The Mighty Madison DIPG Research and Awareness Fund.

Dr. John Prensner, M.D., PhD, University of Michigan

Delve into RNA associated with the H3K27M mutation, which is prevalent in approximately 80% of all DIPG and DMG tumors. His research will aim to investigate whether ribosome-stressing inhibitors can induce improper ribosome behavior, leading to cell death in pre-clinical disease models. This work has the potential to shed light on the relationship between stress resulting from ribosome dysfunction and DIPG cell behavior.

The DDRFA funders include: Book for Hope, The Morgan Adams Foundation and Tough2gether Foundation.

Randy Schrenegost, Ph.D., Targepeutics Therapeutics

Completion of pre-clinical requirements necessary to initiate a Phase I clinical trial for the use of the novel immunotoxin GB 13 in treating DIPG and DMG. Targepeutics Therapeutics plans to manufacture clinical-grade GB 13 and will conduct toxicology testing with the aim of testing GB 13 as a therapeutic option for children diagnosed with DIPG/DMG. This grant will be added to other foundation funding for this important work.

The DDRFA funders include: Arms Wide Open Childhood Cancer Foundation, The Musella Foundation, Tater Tough, Storm the Heavens, Pediatric Brain Tumor Foundation, Tough2gether Foundation and The Mighty Madison DIPG Research and Awareness Fund.

Meet Our DDRFA Administrators

DDRFA is operated by volunteers from the members of the DIPG DMG Research Funding Alliance. It is our goal to use our member contributions directly for grants and projects to advance the knowledge and treatment of DIPG.

We operate currently with the daily assistance of the following volunteers: Sarva coordinates our DDRFA meetings on the 2nd Thursday of each month held by zoom at 7 pm ET, including presentations by grantees and areas of interest to the members. Sarva keeps the records for our alliance and is available to our members. Misha recruits researchers to apply for grants, reviews the grants in advance of our Medical Advisory Committee and works with industry to provide low cost or no cost options to our researchers in addition to our cash support. Lisa works on strategic initiatives for DDRFA, represents DDRFA at research conferences and Children’s Brain Tumor Network Executive Council and keeps apprised of ongoing research efforts. Lisa negotiates agreements of collaboration between DDRFA and third parties for Member approval. Stephanie volunteers to provide the invoices and receipts to all DDRFA members and donors helping to fund our DDRFA grants. She also manages the completion of contracts with our grantees. If you are interested in becoming a DDRFA member, donor or supported researcher, please contact any of the administrators below.