My DIPG Navigator stems from the vision of Jace Ward, an amazing DIPG advocate who died of the disease in 2021. Jace thought all families should be able to quickly access the most current information about best practices and DIPG/DMG treatment options.
On May 17, 2019, a 20-year-old college student named Jace Ward discovered he had DIPG. Doctors told Jace and his family that he had less than a year to live. After the initial shock and fear subsided, Jace decided to make the rest of his time in the world meaningful. Coining the phrase, “I can’t die, I’m busy,” Jace worked tirelessly to raise awareness about DIPG, and he changed the trajectory of the disease forever.
During Jace’s journey, he met a nurse navigator named Leslie Jared. The Wards would speak about how much it helped to have a Nurse Navigator on their team who could answer questions about potential treatments and navigate administrative roadblocks that could make it difficult for patients to get access to the treatments they need. Jace believed every patient fighting DIPG deserved the same access to navigation support.
In early 2021, Jace and his mom, Lisa, convened a working group of some of the best DIPG/DMG doctors around the world and a handful of foundations interested in changing the way a family is forced to navigate this disease. Lisa shared Jace’s vision of improving treatment and care for DIPG/DMG patients, with the establishment of a nurse navigation program as a key element. We hired Jace’s inspiration, Leslie Jared, and got to work, alongside a group of doctors and fellow foundations, building a service that would make Jace proud.
Jace passed away on July 1, 2021, but not before inspiring real, permanent change for families facing the disease today and in the future.