WELCOME TO DDRFA
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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 five months, we have funded $1.1 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 April 2023. We continue to fund 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.
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.
Announcing DDRFA’s First Investment:
The first step in changing the course of DIPG / DMG.
Adam Green, MD
Pediatric Neuro Oncology
Children’s
Hospital of Colorado
Ashley Plant-Fox, MD
Pediatric Neuro Oncology
Lurie Children’s Hospital
Carl Koschmann, MD
Pediatric Neuro Oncology
CS Mott Children’s Hospital
Cheng-Chia Wu, MD, PhD
Radiation Oncologist
COLUMBIA UNIVERSITY IRVING MEDICAL CENTER
David Mirsky, MD
PEDIATRIC NEURORADIOLOGIST
CHILDREN’S HOSPITAL COLORADO
Jason Fangusaro, MD
Pediatric Neuro Oncology
Children’s Healthcare of Atlanta
Matthew Barkovich, MD
Neuroradiologist
UCSF Benioff Children’s Hospital
Michelle Monje, MD, PHD
Pediatric Neuro Oncology
Lucile Packard Children’s Hospital
Nicholas Vitanza, MD
Pediatric Neuro Oncology
Seattle Children’s Hospital
Patricia Baxter, MD, MBA
Pediatric Neuro Oncology
Texas Children’s Hospital
Sabine Mueller, MD, PhD
Chairperson
Pediatric Neuro Oncology
UCFF benioff Children’s Hospital
Sebastian Waszak, PhD
PROFESSOR OF NEUROLOGY
UNIVERSITY OF CALIFORNIA, SAN FRANCISCO (UCSF)
The DIPG DMG National Brain Tumor Board is funded by:
The Members of:
Elliot Rose Fund and All In to Win Foundation
