Together, we’re #MovingTowardsACure

RUN DIPG are a founding member of the ‘DIPG DMG Research Funding Alliance’ (DDRFA), a family of like-minded foundations combining their efforts to fund the work needed to extend the lives of children and young adults diagnosed with diffuse midline glioma.

Forming in 2022, the DDRFA closes its first year with $1.6M awarded for DIPG DMG research and supportive initiatives: groundbreaking research, data efforts, clinical trial expansion, and the establishment of the US-based National Brain Tumor Board.

“We want more than anything to fund research and data discoveries to fuel curative treatments as quickly as possible”, said Lisa Ward, DDRFA coordinator and bereaved mother to Jace Ward who succumbed to DIPG in 2021.  “There has not been one single FDA approved change to the standard of care in 60 years.  This means for more than sixty years the 400+ children and young adults in the US diagnosed with DIPG have been told over the course of 6-9 months you will lose your walk, talk, sight, hearing, swallow, voice and eventually your life to this tumor. No parent who has lost a child could imagine not doing anything possible to fund a cure.”

A sentiment echoed by RUN DIPG founders and supporters, we’re committed to changing the story for the 20-25 Australian families that will learn of their loved one’s DIPG/DMG diagnosis each year.

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

1. Carl Koschmann, University of Michigan – Developing CLIA-certified assays for plasma-based disease response monitoring in histone mutant gliomas.
2. Javad Nazarian, PhD, Children’s National Hospital, and Aaron Diaz, PhD, UCSF – Mapping DMG response and resistance to therapy.
3. John Ligon, M.D., University of Florida – Studying the impact of RNA-nanoparticle vaccine on immune response to DIPG/DMG.
4. Javad Nazarian and Sean Mizoguchi, B.S., Children’s National Hospital – In Vivo Studies to Transform DMG/DIPG Research & Care through rapid validation of effective combinatorial therapies for children diagnosed with Diffuse Midline Glioma (DMG)/Diffuse Intrinsic Pontine Glioma (DIPG)
5. Tim Stuhlmiller, PhD, xCures, and Santosh Kesari, MD, PhD, Pacific Neuroscience Institute – A patient-centric platform approach for DMG/DIPG natural history and efficient clinical data exchange.

For more information about DDRFA and its initiatives, please visit: ddrfa.org