Why was the DIPG-DMG Research Funding Alliance created?
The DIPG DMG Research Funding Alliance began in 2-22-2022 with a very simple charge – to fund DIPG & DMG like lives are depending on it. We are families, funds and foundations who came together because we know DIPG & DMG firsthand. We know DIPG & DMG won’t wait … for convenience in funding sources, for red tape, for academic publishing embargos, for regulatory hold ups. With 60 separate funders, we strive to find a better way to make impactful funding of basic and translational research, data collection and use, and access to trials and experimental treatments.
What are the goals of the DIPG-DMG Research Funding Alliance?
DDRFA’s goal is very simple. To connect those who care about funding DIPG-DMG research, data and trial access with those who are committed to make a difference in the lives of patients with DIPG-DMG by moving the needle impactfully.
We seek to fund patient continuums leading to better knowledge of DIPG-DMG by researchers, better collection and analyzation of longitudinal data, and innovative study for DIPG-DMG or opportunities to bring research to trials. To date, we have partnered with ChadTough Defeat DIPG Foundation in the creation of the www.MyDIPGNavigator.org which is a nurse navigation relationship for patients seeking information about DIPG, treatments, trials and end of life support.
We have funded fully the www.DMGNationalTumorBoard.org which is operated by a dozen pediatric neuro-oncologists, radiology oncologists, neuro surgeons, and genomics experts who see a great majority of DIPG-DMG patients. Together they guide providers across the country to trials and treatments matching patient eligibility and best practices.
Next, we are focusing on making sure patient data shared by parents is gathered in a usable and timely format before sharing into a central database and tissue repository, so that the journey of the patients can best contribute to others by providing widely-available access to longitudinal imaging, clinical notes, and omics information for each child. It is our desire to have the most easily accessible data to attract researchers and industry to delve into the mysteries and find cures for DIPG-DMG.
For that reason when we fund two to three times a year, we track response time to application agreements, responsiveness of our researchers to complete the grant objectives, the collaboration in deliverable items from the research and the sharing of the data analyzed or learned from the project. We base future funding opportunities in part on these results. We expect those funded to present in person or by zoom to our funders and the patient population following the funding cycle.
We connect the researchers to DDRFA’s esteemed Medical Advisory Council who guide the funding decisions, to industry opportunities upon agreement of the researcher, and to other grantees who may also be working in an area benefitted by collaboration. We champion our grantees throughout the DIPG-DMG community during their grant period and thereafter as a DDRFA funded grantee.
What is the focus area of of DIPG-DMG Research Funding Alliance's efforts?
The sole focus of DDRFA is DIPG-DMG. We want to be the leader in creating impactful data relationships, research opportunities, and access to trials or treatments.
In which ways does DIPG-DMG Research Funding Alliance support the brain tumor community?
Together, DDRFA funds DIPG-DMG research, data and access to trials. Each of our members are families, funds or foundation who are committed to a) DIPG-DMG specifically, b) Pediatric Brain Cancer, c) Brain Cancer or d) Childhood Cancer. In their individual efforts they each support a variety of advocacy, education, family support, research support, data sharing, and other efforts. DDRFA is an impactful catalyst to engage these foundations in efforts which resonate with our mission to make sure DIPG won’t wait so neither will we.
Why does DIPG-DMG Research Funding Alliance support CBTN?
CBTN is THE data and tissue repository who sees the need just as we do. Keeping data and tissue siloed, out of the reach of researchers who do not have this type or amount of data available in their lab, keeps cures out of reach. The members of DDRFA all either experienced directly the pain of losing a child, or have devoted their livelihood in a space that knows the DIPG DMG journey and pain of loss all too well.
No one who has lost a child to a 100% terminal cancer wants to keep whatever caused that tumor, the attributes of the tumor, the treatments that did or didn’t work and the lessons learned on the journey a secret from others who can ease the pain of the next family. Only by the commitment of CBTN and their overriding desire to collaborate to spread access to the data as widely as possible will we most likely stumble on the answers to ending DIPG DMG as we know it.
Only by funding the continued creation, improvement, and expansion of the data in usable form will we speed the treatments the children and adults with DIPG-DMG so desperately need.