DDRFA – Powered by Families because lives depend on it. – DDRFA – Powered by Families because lives depend on it.

Make a Donation

Be a part of the change

Donate Now

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 info.ddrfa@gmail.com should you have further questions.

Apply Now!

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

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.

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.

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 to collaborate of 50+ foundations to collaborate are we able to fuel discoveries. We aim to lead to curative treatment for DIPG and DMG as quickly as possible.

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

Carl Koschmann, MD, University of Michigan: CLIA certified assays for plasma based disease response monitoring in histone mutant DIPG DMG.
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.
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.
John Ligand, MD, University of Florida: Impact of RNA nanoparticle vaccine on immune response to DIPG DMG.
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.

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.