2024 Action Days: Join Us in Urging Congress to Help Children with Cancer
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:
“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:
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.
In 2023, the Pediatric Brain Tumor Foundation community answered the call to create a brighter future for children with brain tumors and their families. Read about what your support made possible in research, family support and advocacy.