For many children diagnosed with diffuse intrinsic pontine glioma (DIPG) or diffuse midline glioma (DMG), expressing their symptoms is incredibly challenging. Most patients are under the age of 10, too young to fully articulate their pain and struggles, making it harder for doctors and families to understand the disease's progression. Without the vocabulary to describe their experiences, these children struggle to communicate the changes happening in their bodies.
However, there are those who can speak for them. Adults battling pediatric brain cancers have become powerful voices, bridging the gap between what children endure and what the world needs to understand. Their firsthand experiences help doctors, researchers, and families gain critical insights into the disease, its progression, and its impact.
Lisa Kirkbride’s first noticeable symptom of DMG was numbness in her nose. “A child might say that their nose tickled. And who would ever think that something like that could turn into a brain tumor?” Lisa explained. “I believe adult cases are caught sooner because we have the language to explain our symptoms.” As one of the rare adults diagnosed with a pediatric brain tumor, Lisa understands the unique challenges faced by both patients and their families. As a mother, she empathizes deeply with parents navigating the devastating diagnosis of their child.
“There is no hope offered. No options for treatment. But once you get connected to foundations like The Cure Starts Now, you learn there is hope, even if it is just a little bit.” – Lisa Kirkbride
Alexa Huber was diagnosed with DIPG in 2020. As an adult patient, she knows she is an anomaly. The typical DIPG patient is between 3 and 11 years old and receives a prognosis of just 18 months. Finding support and resources can be difficult when you are an outlier. So she became the leader of The Cure Starts Now Club 22 initiative, helping create a space for adults battling DIPG/DMG to connect and provide updates and support specific to them.
“The Cure Starts Now has been incredible in accepting and including the adults with DIPG in their plans for research. They have given us a platform to speak directly to researchers, and that has opened up opportunities for adults to join clinical trials that were previously inaccessible to us because of age limits,” – Alexa Huber
Lisa and Alexa are among the brave individuals who have turned their own journeys into platforms for change. Despite facing the relentless challenges of their own diagnoses, they have dedicated themselves to raising awareness and advocating for research. Their mission is not just about fighting for their own survival, it’s about finding a cure for the countless children who don’t have the words to express their pain. Lisa and Alexa are proof that a single voice can make a difference, but together, with The Cure Starts Now, their voices echo even louder for the children who need them most.
