A nationwide nurse navigation program for DIPG/DMG families currently in the fight
Saline, MI – ChadTough Defeat DIPG Foundation, together with its Family Partners and Partner Organizations, has launched a new nationwide program, My DIPG Navigator, designed to give much-needed, free, individualized guidance for patients and their families facing a pediatric brain cancer diagnosis, specifically DIPG (diffuse intrinsic pontine glioma) or DMG (diffuse midline glioma). Pediatric brain cancer is now the leading cause of cancer-related deaths in children. While DIPG/DMG tumors are responsible for nearly half of those deaths, the disease is still considered rare, affecting 300-400 patients annually. 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.
Working through the shock of the diagnosis and prognosis, patients and their families often find themselves alone in navigating treatment plans and managing side effects. They must quickly make important decisions that will impact the patient’s care, and they often struggle to find the help they need. Additionally, systemic healthcare inequities, often linked to racial and socioeconomic factors, can impact the ability to access information and navigate a DIPG/DMG diagnosis, particularly in finding highly sought-after clinical trials.
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 devastation that comes with a pediatric brain cancer diagnosis can leave patients and families in shock and disbelief,” said program director, Leslie Jared. “We want to ease their journey as much as possible by helping them understand the disease, connect with the proper resources, and make informed decisions as quickly as possible.”
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
My DIPG Navigator stems from the vision of Jace Ward, an amazing DIPG/DMG advocate diagnosed nine months before his 21st birthday, who died two years later in 2021. Jace thought all families should be able to quickly access the most current information about best practices and DIPG treatment options.
“ChadTough Defeat DIPG Foundation has and will continue to fund incredible research that we know will one day lead to a cure,” said co-founder Jason Carr, who lost his son Chad to DIPG in 2015. “But for me, being able to help make a difference, right now, is so meaningful. We are giving people the guidance that we didn’t have to make important decisions, and that is really game changing.”
For more information on the program, visit mydipgnavigator.org.
Diffuse intrinsic pontine glioma (DIPG) is the deadliest pediatric cancer, with a median survival from diagnosis of 11 months and a near 0% survival overall. Approximately 300-400 children in the United States are diagnosed with DIPG each year. DIPG typically strikes children between ages 4 and 11. Because of its location in the brainstem, where all motor activity is controlled, DIPG is inoperable. The disease progresses by taking over a child’s motor functions one by one, typically starting with vision and balance problems, before moving to partial paralysis, followed by the inability to chew, speak, swallow, move, and eventually breathe – all of this while the child remains mentally intact.
For patients who undergo a biopsy, diffuse midline glioma (DMG) is a newer pathology term used for gliomas that invade normal tissue in the “midline” of the brain. The midline includes multiple structures (the thalamus, the brainstem, and the spinal cord). Most DIPGs (70-90%) that are biopsied have the pathology diagnosis of DMG. Additionally, you can have a DMG outside of the brainstem that is not a DIPG. The prognosis of thalamic DMG is slightly better than DIPG, but this is a pretty subtle difference and not one that is fully understood by most clinicians. The main indicator for a more difficult prognosis in DMG is having a H3K27M mutation.
About ChadTough Defeat DIPG Foundation
ChadTough Defeat DIPG Foundation inspires and funds game-changing research to discover effective treatments for pediatric brain cancer, with an emphasis on diffuse intrinsic pontine glioma (DIPG), which is underfunded compared to most cancers. Powered by parents who have faced a pediatric brain cancer diagnosis, many of whom have lost a child, and guided by a Scientific Advisory Council made up of the leading experts in the field, the foundation ensures every dollar possible funds the most promising research anywhere in the world. The foundation was inspired by Michael Mosier, son of co-founders Jenny and Mark Mosier, and Chad Carr, son of co-founders Tammi and Jason Carr. Both boys passed away from DIPG in 2015.
ChadTough Defeat DIPG Foundation believes a collaborative approach is the only way a cure will be found. It therefore welcomes the help of other families who want to join in funding pediatric brain cancer research (with an emphasis on DIPG) in honor of their children through the foundation’s Family Partner program.
For more information, visit www.chadtough.org.
CHADTOUGH DEFEAT DIPG FAMILY PARTNERS:
The Albom Family: Team Chika
The Barr Family: Hunt for a Cure
The Basha Family: Team Elita
The Boivin Family: Team Julian
The Chhabra Family: Mirah’s Many
The DelVerne Family: Team Colt
The Engler Family: Luke’s Squad
The Finn Family: Team V-Sizzle
The Gibson Family: Dara’s Dream Team
The Grenfell Family: Kam’s Krew
The Hoogendoorn Family: Emerson the Brave
The Jackson Family: Matties Journey
The Lara Family: Pray for Eliana
The Marks Family: Team Olivia
The Mize Family: Rally for Raegan
The Montera Family: Callie’s Crew 305
The Nichols Family: Team Austin
The Olympia Family: Connor Man
The Overton Family: Jack’s Crew
The Petrzelka/Shaker Family: Team Owen
The Ruddy Family: Team Tommy
The Sands Family: Hudson’s Hope
The Santin Family: Team Eugenio
The Sawtelle Family: Team Arden
The Sieck Family: Team Lucy
The Solis Family: Team Eugenio
The Steensland Family: Team Grant
The Tavana Family: Harrison T’s Heroes
The Thompson Family: Team Emma
The Varney/Shewchuk Family: SophieStrong
The Weaver Family: Vivian Rose
About My DIPG Navigator Funding Partners
The following Partner Organizations have joined the ChadTough Defeat DIPG Foundation’s founders and Family Partners to make this free resource available for any DIPG/DMG family in need.
Austin Strong Foundation
Cannonballs for Kayne Foundation
Dean’s Dream Foundation
Dragon Master Foundation
Dylan Jude Harrell DIPG Foundation
Elle’s Angels Foundation
Kinley Sexton Foundation
Love for Linley Foundation
McKenna Claire Foundation
The Mighty Madison DIPG Research and Awareness Fund
Mithil Prasad Foundation
Pediatric Brain Tumor Foundation
Prayers From Maria Foundation
Smashing Walnuts Foundation
SoSo Strong Pediatric Brain Tumor Foundation
Team Cozzi Foundation
Team Landon Clay Foundation
Tough2gether Against DIPG/DMG
The WhyNotDevin Foundation to End DIPG