Media & Advocacy
Where Ayla’s story and the fight against DIPG/DMG and pediatric brain cancer are being heard
Awareness Is Where Action Begins
Every parent who hears the words "DIPG" or "brain tumor" for the first time asks the same question: why didn't I know about this? The answer is that childhood cancer doesn't get the attention or the funding it deserves. At The Ayla Foundation, we're changing that, because awareness isn't the finish line. It's the starting line.
The Challenge
Childhood cancer is grossly underfunded. Pediatric brain cancers like DIPG/DMG have seen little progress in decades, and too many families are told there is nothing left to try. Only about 4% of the National Cancer Institute’s budget is directed toward childhood cancer research.
Why the Gap Exists
All pediatric cancers are considered rare, so there is little financial incentive for pharmaceutical companies to invest in them. Government funding doesn't fill the gap. That leaves it to grassroots organizations, most founded by families who have lived it, to fund research directly.
What Awareness Really Means
Awareness looks like:
Sharing a post or story
Telling a friend, coworker, or neighbor
Hosting a lemonade stand, a golf outing, or a team fundraiser
Wearing the gear and starting conversations
Contacting legislators about pediatric research funding
Every one of those actions puts someone new into the fight.
Latest News
Coverage from the Union Leader, The Cabinet Press, and the Burning The Ships podcast tells the story of The Ayla Foundation, started by Tim and Erin Slivka after their daughter Ayla died in 2022 at age six from a form of pediatric brain cancer. Together they trace the family's turn toward advocacy and the foundation's work funding research and supporting families facing the same fight, including its annual Hope on the Green golf tournament at Manchester Country Club.