Category Archives: Social Media

Join DDRFA now

There are 60+ family-created foundations and funds who proudly invested in the DIPG DMG Research Funding Alliance (DDRFA) as founding members. DDRFA is formed to focus singularly on advances for the deadliest childhood cancer: DIPG DMG. Together, we commit to funding innovative research, providing access to trials, and integrating and utilizing data for DIPG DMG. While members may fund research outside this targeted alliance, the work of DDRFA seeks to place strategic investments when and where necessary to bring advances in treatment, eradication, diagnosis, and prevention of DIPG DMG. DDRFA’s Medical Advisory Council (MAC) guides our investments and challenges grantees by incentivizing patient-centered collaboration and sharing of information to speed the pace of discovery. DDRFA is powered by groups of passionate people who know all too well that lives depend on us. We know DIPG DMG won’t wait. Donate today to bring us closer to saving the lives of children diagnosed with DIPG/DMG. If you would like to help, please contact us to become a DDRFA member or donate as you can! Donate here: DIPG – DMG Research Funding Alliance – Arms Wide Open Childhood Cancer Foundation #DDRFA #becauselivesdependonit #FundDMGTogether #DDRFAPoweredbyfamilies #DIPGWontWait #Goldstrong #CancelChildhoodCancer

DDRFA is READY to award competitive grant funds

DDRFA is READY to award competitive grant funds ranging from $25K to $100K to researchers, clinicians, and data scientists across the nation who are advancing DIPG DMG-directed initiatives. Watch for the RFP on our website August 3.

Help spread the word! DDRFA’s Medical Advisory Council (MAC) will score the applicants’ research proposals and our members will determine which high-scoring application(s) to fund.

The first round of grantees will be announced at the Tough2Gether Against DIPG Breakfast at CureFest for Childhood Cancer on September 24th!

Don’t wait – Join DDRFA now and be part of the first competitive grants.

Learn more here:

DDRFA commits $50,000 over two years to the Children’s Brain Tumor Network (CBTN).

DDRFA commits $50,000 over two years to the Children’s Brain Tumor Network (CBTN). “We believe patient data is powerful in guiding researchers to develop better treatments for our kids,” said Kirsten Finley, co-founder of Cannonballs for Kayne. DDRFA will provide direct input as part of CBTN’s Executive Council. Working with CBTN’s Executive Council, DDRFA seeks to prioritize access, machine learning, and opportunities for precision medicine in DIPG DMG. Perhaps only cancer parents would take immediate action upon learning there were only 61 fully sequenced DIPG tumors available in the largest open database in the world. “What about other donated tumor samples? CBTN was waiting for funding to sequence them,” explained Mina Carroll, co-founder of Storm the Heavens. “After researching all other shareable registries, none had more data. The sequencing of mutations and such was not reaching the researchers who needed it through an openly query-friendly database,” explained Carroll. “In response, we contacted The Broad Institute through Count Me In to ask for help. The Broad Institute agreed and then the incredible CBTN staff received an additional whopping $40M NIH grant to sequence all 6500 pediatric brain tumor-related specimens. This is the biggest data cohort in ALL pediatric cancer.” explained Lisa Ward. CBTN is now firmly established as THE largest biorepository of open, shareable, most precious de-identified tissue and data. The following Members of DDRFA made this grant possible: Arms Wide Open Childhood Cancer Foundation; Cannonballs for Kayne; Hope for Harlee Fund; Dean’s Dream Foundation; Mithil Prasad Foundation; Morgan Adams Foundation; Storm the Heavens; and Tough2gether Against DIPG. If you would like to support DDRFA’s investment in CBTN, please donate - to DDRFA. Learn more about the Children’s Brain Tumor Network here: #DDRFA #becauselivesdependonit #FundDMGTogether #DDRFAPoweredbyfamilies #DIPGWontWait #Goldstrong #CancelChildhoodCancer

The Best Chance for Kids to Live: New DIPG/DMG National Brain Tumor Board Giving Hope to 100% Fatality Rate

A DDRFA Media Release on the NEW Approach to Strategic Care for the Most Deadly Childhood Cancer.
Tuesday, July 26, 2022 – “The national tumor board is staffed by experienced, highly qualified DIPG DMG clinicians leading cutting edge trials in the US. Each is dedicated to collaborate and customize trials and protocols for those diagnosed with this most deadly childhood cancer. Up to eight leading pediatric neuro-oncologists will hear every case. They will review the patient’s MRI, genomic sequencing and symptoms from physician records.” said Ward. In a tumor type without a cure, diagnosed as 100% fatal at diagnosis, giving a patient the best opportunity for success in accessing new clinical trials matters. “Our clinicians are so tired of meeting beautiful children with bright futures and having no way to offer an option for long life. They are painstakingly thinking outside the box, working harder than ever, together across institutional lines, to find a cure.” said Ward

Jace Ward, then age 21, offered the simple solution fourteen months after being diagnosed with DIPG. He told his mom to stop staying up all night researching clinical “Just ask the best doctors we know ‘what would you do if I was your son’”, said his mom Lisa Ward. Lisa knew time was not on their side to travel to six or seven centers across the country for evaluation. “Ask them to jump on a Zoom call”, Jace said. “They like me! They’ll tell us what to do.” It sounded so simple, but there was no centralized tumor board available. They formed their own and when the ad hoc virtual tumor board provided several options for his treatment, he told his mom, “Remember this, every 25-year-old mom with a 4-year-old needs this same opportunity. Every mom has to know she gave her kid the best chance to live.”

A Zoom call between Jace and the seven clinicians eliminated trials Jace would not be eligible to receive, trials that were not open or had long waiting lists, and trials that had not proven to show promising results. The list was whittled down to four trials. The Wards received a written report to review with their oncologist and the opportunity to make an appointment with one of the doctors on the zoom call to better understand the trials considered. “It was a huge relief to know we had THE best clinicians who saw the most patients with DIPG telling us which protocols would be most successful for Jace’s situation. They based their advice on Jace’s MRI images, his biopsy sequencing, and his clinical presentation.” said Lisa. We are thankful, it gave us no regrets. We held onto this idea and knew it must be made available to everyone somehow.”

In February 2022 the DDRFA alliance of over 50 foundations, funds and families formed with one singular purpose: to change outcomes for DIPG/DMG. DDRFA’s first project was to fund the establishment of the DIPG/DMG National Brain Tumor Board led by Dr. Sabine Mueller, Pediatric Neuro Oncology at UCSF. By September, the tumor board will begin hearing cases just like Jace’s. Those children or adults with DIPG/DMG who are within 16 weeks from diagnosis or are at first progression may submit a request to be heard by the tumor board. The patient’s oncologist, pediatrician, neuro-surgeon, or other provider guiding the patient’s care may interact with the tumor board discussion and receive the tumor board report. Likewise, any provider around the world interested in learning more about DIPG DMG treatment options may sit in on the tumor board discussions of all patients. If you would like to join DDRFA, or make a donation to support the work of DDRFA or the tumor board, please contact us at
Media Notes:

The DIPG DMG National Tumor Board Members
Include the following Pediatric Neuro Oncologists

Dr. Sabine Mueller, UCSF Benoiff Children’s Hospital, Dr. Carl Koschmann, CS Mott’s Children’s Hospital, Dr. Ashley Plant – Fox, Lurie Children’s Hospital of Chicago, Dr. Patricia Baxter, Texas Children’s Hospital, Dr. Nicholas Vitanza, Seattle Children’s Hospital, Dr. Adam Green, Colorado Hospital for Children, Dr. Jason Fangusaro, Children’s Healthcare of Atlanta, and Dr. Michelle Monje, Lucile Packard Children’s Hospital – Stanford

DDRFA is an alliance of the following organizations:

Anthony’s Avengers DIPG Foundation
Hope Through Hollis Fund
Reed Jobs
Arms Wide Open Childhood Cancer Foundation
Kaylan Strong Fight Like a Warrior Foundation
Rofeh Cholim Cancer Society, Inc.
Avery Strong: Avery Huffman DIPG Foundation
Kinley Sexton Foundation
Robert J. Michalski Memorial Fund
Benjamin Strong Foundation
Levi’s Legacy DIPG Foundation
Smashing Walnuts Foundation
Brave Lion Fund
Lily LaRue Foundation
Storm the Heavens
Cannonballs for Kayne
Live Grays Way
Super Sam Foundation – Wyatt’s Warriors
Liv Like a Unicorn Foundation
Take Over Tumors Foundation
ChadTough Defeat DIPG Foundation
Live Like Bella Foundation
TaterTough Foundation
Dean’s Dream Foundation
Love Chloe Foundation
Team Cozzi Foundation
Dragon Master Foundation
Luke’s Posse: DIPG Ends Now!
Team Landon Clay Foundation
Dylan Jude Harrell DIPG Foundation
McKenna Claire Foundation
The H Life
Elle’s Angels Foundation
Mighty Madison DIPG Research & Awareness Fund
The Morgan Adams Foundation
Emily Whitehead Foundation
Mithil Prasad Foundation
Tough2gether Against DIPG
Gabriella’s Smiles Foundation
Noah Brave Foundation
Reach for the Sky
Garrett Weber Fund
Noah Halek Strong
Unravel Pediatric Cancer Foundation
Gold Rush Cure Foundation
Pediatric Brain Tumor Foundation (PBTF)
Yuvaan Tiwari Foundation
Head for the Cure Foundation
Rally Foundation for Childhood Cancer Research
Neev Kolte Foundation
Hope for Harlee Foundation

DDRFA is joined by All in to Win Foundation and the Elliott Rose Fund to fund the national tumor board.
For more information, contact