What is My DIPG Navigator?
Founded in 2021, My DIPG Nurse Navigator pairs medical professionals (known as navigators) with those in need of support following a DIPG diagnosis. Navigators work closely with DIPG patients and their families or loved ones, offering education, emotional support, and medical expertise.
The program is an offshoot of ChadTough Defeat DIPG Foundation. In 2021, a DIPG patient named Jace Ward suggested a program in which people impacted by DIPG could have access to personalized support. Alongside DIPG experts, ChadTough launched My DIPG Navigator, bringing Jace's vision to life.
How Does My DIPG Navigator Work?
Those in need of support begin by completing an intake form. This allows navigators to obtain contact information and to learn the basics of how they can help. A medical professional will respond within 12 hours.
From there, navigators will hold an initial discussion with the patient and / or the patient's family or loved one(s). The purpose of this discussion is to learn more about the patient's needs, their DIPG journey, and how they can best offer support.
Navigators provide ongoing, 1-on-1 help. All navigators have extensive experience in pediatric oncology, and they can answer any medical questions or concerns along the way. Navigators will connect patients with valuable resources, such as other DIPG experts or specialists. They'll also review potential clinical trials, second opinions, and much more.
Since DIPG is so rare, many people impacted don't know much about the disease at first. Navigators are available to educate patients and their families or loved one(s) on DIPG and what else to expect.
The DIPG journey is understandably emotional. Nurse navigators offer an empathetic ear and continual support and encouragement.
How Does My DIPG Navigator Help?
When Devin was diagnosed with DIPG in early 2017, My DIPG Navigator hadn't been established yet. The Suau family didn't have access to this type of personalized support or education. Following Devin's diagnosis, they independently researched clinical trials.
My DIPG Navigator aims to alleviate some of the stress, confusion, and emotional turmoil following a DIPG diagnosis. They have helped numerous patients and their loved ones over the years.
How Can I Support My DIPG Navigator?
The WhyNotDevin Foundation helps fund My DIPG Navigator, alongside other family-founded organizations. To learn more about how you can support the program, please visit their website.