My DIPG Navigator and the ChadTough Defeat DIPG Foundation

May 23, 2024

Head for the Cure has recently partnered with My DIPG Navigator to introduce a pivotal resource for families and patients battling diffuse intrinsic pontine glioma (DIPG) and diffuse midline glioma (DMG). This initiative promises to provide comprehensive support and guidance to those affected by this aggressive form of brain cancer.

Understanding DIPG/DMG

DIPG/DMG is a rare and highly aggressive brain tumor that primarily affects children. Located in the brainstem, DIPG/DMG is notoriously difficult to treat due to its critical location and resistance to conventional therapies. The prognosis for DIPG/DMG patients is often dire, with a median survival time of less than a year post-diagnosis. This grim reality underscores the urgent need for dedicated resources and support systems for affected families.

My DIPG Navigator: A Beacon of Hope

My DIPG Navigator is a groundbreaking program designed to offer personalized assistance to families navigating the complexities of a DIPG diagnosis. The program provides access to specialized resources, including:

  1. Expert Guidance: Families are connected with DIPG experts (Nurse Navigators) who can offer insights into the latest research, treatment options, and clinical trials. This guidance is crucial for making informed decisions about care and treatment.
  2. Emotional Support: Coping with a DIPG diagnosis is emotionally overwhelming. My DIPG Navigator provides emotional support through counseling services and peer connections, helping families find solace and strength in community.
  3. Resource Coordination: The program assists families in managing the myriad logistical challenges that come with a DIPG diagnosis, such as coordinating care, managing medical records, and accessing financial assistance.


The ChadTough Defeat DIPG Foundation: Pioneering DIPG Research and Support

The ChadTough Defeat DIPG Foundation was established in memory of Chad Carr and Michael Mosier, who bravely fought DIPG. The foundation’s mission is to help patients and families by funding game-changing research and providing navigation throughout their journey. Since its inception, the ChadTough Defeat DIPG Foundation has funded over $30 million in critical research focused on finding a cure and supported over 300 families along their journey.

If you or your loved one has been diagnosed with a Diffuse Midline Glioma (DMG) or specifically a Diffuse Intrinsic Pontine Glioma (DIPG), we recommend that you register with My DIPG Navigator, a free nurse support program that is funded by the ChadTough Defeat DIPG Foundation. This program links you with experienced pediatric oncology nurses that will help you grasp the diagnosis, understand treatment choices, and connect you with the right resources that’ll stand by your side throughout your fight.