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 trials.gov. “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 http://www.DDRFA.org.
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
CBTF
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 info.ddrfa@gmail.com
