When a child is diagnosed with brain cancer, parents and caregivers must quickly make critical decisions while navigating the shock of this devastating diagnosis. Getting up-to-date information about treatment options and side effects can be difficult, and families often find themselves alone in navigating immense physical, emotional, and financial challenges. Additionally, racial and socioeconomic factors make it harder to access resources like the clinical trials that are many families’ only hope.

The Pediatric Brain Tumor Foundation joins ChadTough Defeat DIPG Foundation and other members of the pediatric brain tumor community as a funding partner of the new My DIPG Navigator (www.mydipgnavigator.org), a free nurse navigator program designed to give families individualized, reliable guidance for the deadliest childhood brain cancer, DIPG (diffuse intrinsic pontine glioma)/DMG (diffuse midline glioma).

My DIPG Navigator stems from the vision of Jace Ward, a DIPG advocate who died of the disease in 2021 and thought all patients should be able to quickly access the most current information about best practices and DIPG/DMG treatment options. Led by dedicated nurses with years of experience in pediatric oncology, My DIPG Navigator provides the resources families need to feel confident that they’re making the most-informed decisions throughout their loved one’s cancer journey. This service is completely free for any patient treated in the United States.

“The devastation that comes with a pediatric brain cancer diagnosis can leave patients and families in shock and disbelief,” says 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 a guaranteed response within 24 hours of initial contact
  • 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 a patient’s location or preferred expertise preference
  • Provide encouragement and serve as a liaison to improve physician-patient interactions

“Many physicians across the country have limited experience treating a child diagnosed with a brain tumor like DIPG or DMG, leaving families to search for answers on their own. The Pediatric Brain Tumor Foundation exists to help families along every phase of their child’s cancer journey by funding research for a cure and equipping them with resources they can trust. We’re honored to partner with other members of the cancer community who similarly understand the need to provide families a free and dedicated resource like My DIPG Navigator,” says Kathy Riley, Vice President of Family Support at PBTF.

For more information on the program, visit www.mydipgnavigator.org or watch the video below:

About My DIPG Navigator Funding PartnersThe Pediatric Brain Tumor Foundation has joined the ChadTough Defeat DIPG Foundation, family partners, and nonprofit organizations to make this free resource available for any DIPG/DMG family in need:

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

Nonprofit funders:

  • Austin Strong Foundation
  • Cannonballs for Kayne Foundation
  • Dean’s Dream Foundation
  • Dragon Master Foundation
  • Dylan Jude Harrell DIPG Foundation
  • Elle’s Angels Foundation
  • Love for Linley Foundation
  • Luke’s Posse
  • McKenna Claire Foundation for Pediatric Brain Cancer
  • The Mighty Madison DIPG Research and Awareness Fund
  • Mithil Prasad Foundation
  • Pediatric Brain Tumor Foundation
  • The Prayers From Maria Foundation
  • Smashing Walnuts Foundation
  • SoSo Strong Pediatric Brain Tumor Foundation
  • TaterTough
  • Team Cozzi Foundation
  • Team Landon Clay Foundation
  • The Kinley Sexton Foundation
  • Tough2gether Against DIPG/DMG
  • The WhyNotDevin Foundation to End DIPG

About the Pediatric Brain Tumor FoundationEvery day, 13 children and teens are diagnosed with a brain tumor, the deadliest childhood cancer. Every day after, they’re in a fight for their life. It’s a fight the Pediatric Brain Tumor Foundation is here to help families win. The largest patient advocacy funder of pediatric brain tumor research and leading champion for families and survivors, PBTF’s mission of Care. Cure. Thrive. reflects our commitment to curing all pediatric brain tumors and transforming how children and their families are cared for. Since 1991, PBTF has provided strategic leadership and funding to accelerate the number of targeted therapies for children battling brain tumors today, while equipping families with the patient-family education, financial relief, and emotional support they need to navigate their child’s journey. A world without childhood brain tumors is possible when we work together to put kids first. Learn more at www.curethekids.org.


Related Updates

Pediatric Cancer Neuropsychological Needs Assessment Act Introduced in New York Legislature

Advocacy Alert

Pediatric Cancer Neuropsychological Needs Assessment Act Introduced in New York Legislature

A new bill introduced in the New York State Legislature by Senator Shelley B. Mayer and Assembly Member Christopher Burdick will help remove some of the barriers standing between children with cancer and the learning accommodations they need to succeed in school. The Pediatric Cancer Neuropsychological Needs Assessment Act (NY State S.8750) would require insurers to provide coverage for neuropsychological assessments for children diagnosed with cancer that affects brain development or function.

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