At least 15% of all childhood cancers are caused by a genetic predisposition to cancer, some of which are inherited.
Trish Adkins
Writer, Alex’s Lemonade Stand Foundation
When you hear or read about childhood cancers like leukemia, lymphoma, or even brain tumors, you may not think you’re reading about rare diseases. However, for the small population of kids diagnosed with childhood cancer — usually around 15,000 per year in the United States — their cancers are all rare, which can make finding a cure difficult. There are dozens of types and hundreds of subtypes of childhood cancer, each requiring specific, effective, and safe treatments.
Even with their rare disease status, childhood cancer makes an enormous impact on the lives of diagnosed children and their families. The average age of a child at diagnosis is 10 years old, compared to 66 years old in adults. One study estimated that cancer has stolen 11.5 million years of healthy life away from children all over the world.
The importance of genetic testing
In 2007, Cole Fitzgerald was one of those children. He was just 3 years old when he was diagnosed with neuroblastoma, a type of childhood cancer that causes solid tumors and leads to about 800 diagnoses each year in the United States. Cole endured relentless, grueling treatment and emerged cancer-free. However, right before he was set to begin his freshman year in college, Cole was diagnosed with a second form of cancer, pancreatoblastoma, a rarer-than-rare pediatric pancreatic cancer that has only been documented a handful of times.
Cole began treatment, and through testing, he discovered that he also had Li-Fraumeni syndrome (LFS), an inherited cancer predisposition syndrome. His diagnosis explained his two rare cancers, and since LFS is inherited, his family underwent testing. His mom and other extended family members all tested positive.
Cole died at age 19 in December 2023.
His family, now armed with the knowledge that they, too, could develop cancer due to an inherited syndrome, undergo constant surveillance for cancer — because early detection could save their lives.
At least 15% of all childhood cancers are caused by a genetic predisposition to cancer, like LFS. While scientists know about these syndromes, testing for them is not yet part of routine care for the general population.
Making routine testing a reality
Alex’s Lemonade Stand Foundation (ALSF) has plans to fund two grants to tackle cancer predisposition.
“Families like Cole’s are just waiting to get cancer,” Scott said. “These projects are everything to these families.”
The two grants will be funded by ALSF’s Crazy 8 Initiative, an ambitious grant category that funds collaborative teams tackling the most challenging problems in childhood cancer. The hope is that through these projects, the cures for childhood cancer will finally be a reality. Learn more about the projects here.
