Participants run through Ballantyne during the Isabella Santos Foundation’s 5K for Kids Cancer race in 2012. Photo courtesy of Northwood Office.

Isabella Santos Foundation Marks 15 Years

Local leader and her team of women transform the pediatric cancer fight in Charlotte

By Michelle Boudin

Erin Santos-Primis remembers sitting around a coffee table in a Piper Glen living room 15 years ago with three other women, trying to figure out how to fight childhood cancer. “We were just a group of moms coming together, trying to figure out what we could do,” she says of the early days of the Isabella Santos Foundation. “But we’ve become a powerful band of sisters.”

Her daughter Isabella, then 2 years old, had just been diagnosed with stage 4 neuroblastoma, a rare brain tumor with limited treatment options. She and the other moms at the table wanted to find a way to raise some money to fight the disease. The women formally launched ISF, with Santos-Primis as the executive director, and organized a 5K in Ballantyne Corporate Park. About 150 runners came, raising $7,000. “It was the smallest, rinky-dink race you’ve ever seen,” Santos-Primis says, laughing.

The ISF team. Photo courtesy of the Isabella Santos Foundation.

This year that same core group of women will help organize the 15th annual 5K for Kids Cancer in Ballantyne. More than 2,000 runners are expected to lace up their shoes for the event, which, since its inception, has raised $2.3 million.

Thanks to that annual 5K and numerous other fundraising events, ISF has raised $9 million and given away more than $6 million. Much of that money has stayed in Charlotte, transforming Atrium Health’s Levine Children’s Hospital into one of the country’s best hospitals for childhood cancer treatment.

“It leaves me a little speechless. Some of the stuff we’re doing now are things we never thought were possible,” Isabella’s mom says. ISF has brought treatments and trials to Levine Children’s that weren’t available when Isabella was battling cancer. She died in 2012 at the age of 7.

“I think that’s what blows my mind … when we talk to Dr. Oesterheld and hear about kids coming here from all over the U.S. and the world, and their outcomes are so dramatically different because of what we’re doing, that’s just so unbelievable. That’s the dream of this foundation, and it’s happening.”