Dr. Peter Dirks - The Hospital of Sick Children (Toronto) - Tracing the Origins of DIPG
The origins and steps of progression from a normal brain cell to a cancerous brain cell of DIPG is poorly understood and is a critical missing piece that could help identify new treatments. We hypothesize that better treatments for DIPG will involve earlier treatment when the disease is simpler. Defining key molecular and cellular characteristics of the “pre-malignant” DIPG cell populations and early tumor populations, in addition to the identities of non cancerous populations that comprise the tumor, may lead to earlier diagnosis and do the development of strategies to intercept full development of DIPG.
Dr. Michelle Monje - Stanford School of Medicine - Car T-cell Trial
The primary purpose of this study is to test whether GD2-CAR T cells can be successfully made from immune cells collected from children and young adults with H3K27M-mutant diffuse intrinsic pontine glioma (DIPG) or spinal H3K27M-mutant diffuse midline glioma (DMG). H3K27Mmutant testing will occur as part of standard of care prior to enrollment.
Dr. Javad Nazarian - George Washington Cancer Center - Mapping DMG Response
The overall objective of this project is to elucidate the genetics and epigenetics map of DMG resistance to therapy. We seek to define the cellular composition of treatment resistant tumors, identify gene regulators of resistance phenotypes, and correlate this with clinical covariates. Our rationale for these studies is to determine biomarkers of treatment sensitivity that will drive inclusion criteria in future clinical trials.
DMG-ACT Trial
Diffuse Midline Glioma – Adaptive Combinatorial Therapy (DMG-ACT) trial is a collaboration through the Pacific Pediatric Neuro-Oncology Consortium (PNOC) and the DIPG Centre of Expertise in Zurich, is a biology-informed, adaptive, and progressive trial, designed to deliver more rapid progress for children suffering from DMG. Learn more about our funding for the DMG-ACT visit our story HERE
Dr. Adam Green - University of Colorado Denver
Study of Selinexor + Bortzomib + RT for DIPG DMG and pHGG using ultrsound w/microbubbles to disrupt the blood brain barrier - integrate results of ongoing selinexor +RT rtial with lab models & determine genetic markers increasing efficacy (WGS & RNA se)
Dr. Anahita Kazerooni - Children’s Hospital of Philadelphia
Prediction of tumor progression in patients with DIPG DMG using 3D volumetric measurements obtained via automatic deep learning brain tumor segmentation. Volumetric 3D measurements outperform 2D approaches, providing higher inter-reader agreement and more stable estimation of tumor growth rates. This project will provide early evidence about treatment response or tumor progression in DIPG/DMG tumors. This will allow sufficient time for recruiting patients into alternative therapies if tumor is not responding to the given therapy.
Elle’s Angels Foundation is proud to announce our partnership with ChadTough Defeat DIPG Foundation as one of their first ever Family Research Partners. ChadTough is one of the largest DIPG/DMG research facilities in the country. We were introduced to them early on in our diagnosis and they were there for us every step of the way. We are honored to become one of their original research partners as we will now be helping them fund research.
The ChadTough Defeat DIPG Scientific Advisory Council (SAC), comprised of leading DIPG experts, engages in a rigorous review of the research funding applications the foundations receives, to ensure the foundation uses its resources effectively to fund the most promising DIPG research. We will work closely with their research board to decide which grants Elle’s Angels Foundation would like to help with. Once we select a grant, we will be updated on a bi-annual basis directly from the doctors who are conducting the research.
Elle’s Angels Foundation is proud to announce the MY DIPG Navigator program in partnership with ChadTough Defeat DIPG Foundation. When we were given this opportunity to partner up with ChadTough on this we thought this was exactly what the DIPG community needs. When Elle was first diagnosed with DIPG, we were lost as to which direction we should go. I described it as being dropped off in the middle of the ocean not knowing what direction is which. We spent so many hours researching and speaking with doctors trying to find direction. Now, there is going to be a place for DIPG families to go to that will give them that direction that is so desperately needed. Gaining access to the most up-to-date treatment information has been challenging for many patients and their families, as most physicians across the country have not directly treated a DIPG/DMG patient.
My DIPG Navigator, led by dedicated nurses with years of experience in pediatric oncology, will empower patients and their families with the proper information and resources necessary to make the most-informed decisions throughout their cancer journey. This service is completely free for any family able to be treated in the United States.
The program will:
● Provide immediate support, with guaranteed response within 24 hours of initial contact to the organization
● Ensure EVERY patient and/or family has the ability to access the information they need regardless of socioeconomic status or cultural ethnicity
● Provide disease education to patients and/or families
● Guide patients and/or families in identifying experienced DIPG or DMG physicians,
according to patient’s location or preferred expertise preference
● Provide encouragement and serve as a liaison to improve physician-patient interactions
For more information on the program, visit www.mydipgnavigator.org
Elle’s Angels Foundation is proud to announce our partnership with DIPG/DMG Research Funding Alliance (DDRFA). Our foundation will partner up with over 50 other foundations to help 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 of DDRFA 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 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.