Isabella Santos Foundation Marks 15-Year Milestone with Impact (Queen City Nerve, Sept 29)

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Isabella Santos Foundation Marks 15-Year Milestone with Impact

A legacy grown from loss

Isabella Santos Foundation Team
Isabella Santos Foundation team (Photo courtesy of ISF)

In a personal essay published in Queen City Nerve in 2019, Erin Santos reflected on the seven years that had gone by since her daughter, Isabella, passed away from neuroblastoma, a rare cancer affecting the sympathetic nervous system.

“We can never fully recover from the journey she took us on, the last breath she took in front of me or the lessons she taught us,” Santos wrote. “We are thankful that we were a part of the ride she allowed us to be witness to in the 7 years we had with her and promise to take her with us for the next 7 years to come and beyond. We are going to be okay.”

Her words aimed to remind other families who’ve lost children to pediatric cancer that it’s okay to move forward without forgetting.

As founder of the Isabella Santos Foundation (ISF), Santos has been vocal about the grief cycle she’s experienced and how her nonprofit has evolved not only since Isabella’s diagnosis but since her death as well.

June 2022 marked 10 years since Isabella passed away and 15 years since ISF was formed. It also marked a new chapter for Erin Santos, who recently wed Blair Primis, known in many circles around Charlotte for his large role in supporting local media as the former senior vice president of marketing and talent management at OrthoCarolina. The couple went on their honeymoon in early September.

Erin Santos and Blair Primis
Erin Santos and Blair Primis at their wedding (Photo courtesy of ISF)

But more importantly to those in the surrounding communities has been the impact of the Isabella Santos Foundation. Since its founding in 2007, ISF has raised $9 million and donated just over $6 million toward its mission of improving treatments for rare pediatric cancer, expanding research and supporting families.

The organization has funded a dozen clinical research trials; supported six national institutions; built a state-of-the-art treatment facility; and brought one of the nation’s top oncologists to Charlotte to head the Isabella Santos Foundation Rare & Solid Tumor Program at Atrium Health Levine Children’s Hospital.

And to think, as Erin Santos likes to say, it all started with a girl.

“We are the true definition of what a grassroots organization can accomplish,” Santos told Queen City Nerve upon return from her recent honeymoon. “This whole thing started with one little girl and an entire city adopted her and her mission and so many of them are still donating today. What we created and the impact it will have on kids, will outlive us all. I always said that this legacy we created for her is something so special. But now I realize when I look around the table of women who work here at ISF, it has become their legacy too.”


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