We are a Family of foundations
Funding Cancer Research
Targeting DIPG DMG Pediatric Brain Tumors
WE ARE THIRTY + 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. Since June of 2022, we have funded nearly $4 Million in research grants 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 late 2025. 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
Support 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.
Nearly $4M funded by DDRFA since June 2022 including $3.17M in grants and $713K in tumor board support!
Round IV Grant Recipients, their projects and DDRFA Members who have funded these projects:
Eugene Hwang, MD – Children’s National Hospital
Elias Sayour, MD, PhD – University of Florida
Initiation of a phase 1 clinical trial using personalized H3K27M vaccines, personalized using mRNA from the patient’s tumors
DDRFA funders include:
The Braden James Fund
Tough2gether Because of Ryan Kirkby
Team Sam the Lion
Team Landon Clay Foundation
Tater Tough with Tough2gether
Storm the Heavens Fund
Head for the Cure Foundation
Elle’s Angels Foundation
Tough2gether Foundation
Rebecca Ronsley, MD, FRCPC – Seattle Children’s Hospital
Novel Correlative assessments of performance of quad-targeting CAR T cells for children and young adults with DIPG or DMG
DDRFA funders include:
The Braden James Fund
Elora J. Khan Foundation
Princess Hailey’s Hope Foundation
Tater Tough with Tough2gether
Team Landon Clay Foundation
Hope Through Hollis
Levi’s Legacy DIPG Foundation
Team Cozzi Foundation
Tough2gether Foundation
Elle’s Angels Foundation
Randy Schrecengost, PhD – Targepeutics
Analysis of the expression of IL13R2, IL13R1 and IL4R from biopsy samples of DMG tumor
DDRFA funders include:
Al Musella Foundation
Storm the Heavens Fund
JoeStrong71 with Tough2gether
Tough2gether Foundation
TaterTough with Tough2gether
Sabine Mueller, MD, PhD, MAS – University of California, San Francisco
Microbiome Discovery in Pediatric DMG Patients
DDRFA funders include:
The Braden James Fund
Neev Kolte & Brave Ronil Foundation
Elora J Khan Foundation
JoeStrong71 with Tough2gether
Tough2gether Foundation
John Prenser, MD PhD – University of Michigan
Natural products drug discovery and ribosome collision dysfunction in DMG/DIPG
DDRFA funders include:
Book for Hope, Inc.
Michelle Howard, PhD – University of Iowa
Leveraging redox deregulation to overcome radiation resistance in DIPG
DDRFA funders include:
TaterTough with Tough2gether
Tough2gether Foundation
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.
Lisa Ward, Co-Founder
Tough2gether Foundation and Jace’s mom
DDRFA Coordinator
Misha Mehta, Co-Founder
Neev Kolte and Brave Ronil Foundation and Neev’s mom
Industry Engagement
Nicole Lyons
Tough2gether Foundation
Research Grant Coordinator
Jay Rice
Tough2gether Foundation and Jace’s friend
DDRFA Billing Coordinator
The DIPG DMG National Brain Tumor Board is funded by the Members of DDRFA.
