Our mission
A Vision For Change
The Isabella Santos Foundation (ISF) envisions a future where children battling rare pediatric cancers have access to better treatments, groundbreaking research and comprehensive support — from diagnosis through survivorship.
Since 2007, ISF has raised more than $19 million to advance rare pediatric cancer research and support families across the Southeast.
Mission Statement
The Isabella Santos Foundation is dedicated to advancing innovative research, funding life-saving therapies and providing critical support for families battling rare pediatric cancers. By bringing together leading hospitals, researchers and communities, we are working to accelerate breakthroughs and improve outcomes for children everywhere.
Our Story
In 2005, two-year-old Isabella Santos was diagnosed with Stage IV high-risk neuroblastoma — a rare and aggressive pediatric cancer.
For five years, Isabella endured treatments no child should have to face: chemotherapy, radiation, surgeries and countless hospital stays. Yet through it all, she remained joyful, compassionate and full of life.
During Isabella’s fight, her family and community discovered a painful reality: children with rare cancers are often overlooked.
Funding is limited. Treatment options are scarce. And families are left navigating the unimaginable with far too few resources.
Instead of accepting that reality, they chose to fight back.
Turning Love Into Action
In 2007, while Isabella was still in treatment, the Isabella Santos Foundation was created to help change the future for children battling rare pediatric cancers.
What began as a grassroots effort — fueled by neighbors, friends and the Charlotte community — quickly grew into something far greater.
When Isabella passed away in 2012 at the age of seven, the mission did not end.
It grew stronger.
Her legacy became a movement dedicated to ensuring that other families facing rare pediatric cancers would have more options, more support and more hope.
Growing the Mission
Since its founding, the Isabella Santos Foundation has raised more than $19 million to accelerate progress for children battling rare pediatric cancers.
ISF invests in initiatives that move the needle for families and the medical community, including:
• Funding groundbreaking research and clinical trials
• Expanding access to innovative therapies
• Supporting programs that care for the whole child — from diagnosis through survivorship
Through partnerships with leading pediatric hospitals across the Southeast, ISF is helping bring life-saving discoveries closer to the children who need them most.
19 Years of Impact
$19M+ raised
5 leading pediatric hospital partners
Hundreds of families supported
Breakthrough research funded across the Southeast
Lighting the Way Forward
Today, the Foundation’s work continues to grow through the TORCH Initiative — a collaborative funding model designed to accelerate pediatric cancer breakthroughs across leading medical institutions.
By bringing together researchers, hospitals and philanthropic partners, TORCH helps move promising ideas from the lab to the bedside faster — giving children with rare cancers new treatment opportunities and renewed hope.
Isabella dreamed of helping other children like her.
Today, that dream lives on through every breakthrough, every family supported and every child given a better chance at life.
A Mother’s Love Knows No Limits
Watching families struggle, just like me, to find treatment options for their children and trying to navigate the massive gaps in research and funding for clinical trials was torturous. I felt so strongly that just because a child’s cancer is rare shouldn’t mean they have limited opportunity for survival — which is why, amid my own daughter’s fight, I felt compelled to start ISF.
For many, the reality of pediatric cancer may be unimaginable, but it’s becoming more and more common.
No parent should feel alone in facing their child’s cancer diagnosis, and organizations like ISF play a crucial role in ensuring that they don’t have to.
– Erin Santos-Primis
What began with one little girl has become a powerful movement fueled by compassion, community and the belief that every child deserves the chance to live their dreams.
