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.
The Pediatric Brain Tumor Foundation Welcomes Dr. Sanjay Gupta to Its Board of Directors
The Pediatric Brain Tumor Foundation (PBTF) is proud to welcome Dr. Sanjay Gupta, CNN’s chief medical correspondent, to the PBTF’s Board of Directors. Dr. Gupta will bring his wide-ranging experiences in medical practice and journalism, including as associate chief of the neurosurgery service at Grady Memorial Hospital in Atlanta, associate professor of neurosurgery at the Emory University School of Medicine, and chief medical correspondent for CNN, to bear as a valuable and expert advocate for pediatric brain tumor patients, survivors, and their families.
Cancer Gets Lost’s Online Charity Auction of Rare and Signed LOST Memorabilia to Benefit Pediatric Brain Tumor Foundation
Cancer Gets Lost (CGL) has selected the Pediatric Brain Tumor Foundation as the benefiting charity for their 2024 LOST charity auction taking place online May 11-18 in recognition of Brain Tumor Awareness Month. This year’s Cancer Gets Lost auction will celebrate the show’s 20th anniversary by auctioning rare and signed LOST memorabilia kindly donated by fans, cast, crew, and creatives, as well as rare collectibles from Bad Robot and other projects LOST cast members have worked on.