The Isabella Santos Legacy: Community Involvement Shapes Success

Established in 2007, the Isabella Santos Foundation (ISF) epitomizes community engagement in the fight against rare pediatric cancers. ISF’s mission, inspired by Isabella Santos herself, focuses on enhancing pediatric cancer research and providing vital support to affected families. The foundation’s recent expansion into the Lake Norman community marks a new chapter of collaboration and impact.

Isabella Santos’ Legacy

Diagnosed with neuroblastoma in 2007 at just two years old, Isabella’s resilient spirit laid the foundation for ISF. With fewer than 700 cases in the United States, treatment options and information were limited. Erin Santos, Isabella’s mom, had to be proactive, do her own research, and fiercely advocate for her daughter. She challenged what was put on the table every step of the way, no matter how provocative or impossible her proposed solutions seemed. 

The family traveled between her hometown, Charlotte, North Carolina, and New York’s Memorial Sloan Kettering Cancer Center to receive care. It was exhausting, but the family persevered, eventually reaching a summit where they needed to rally support, raise awareness of her mission, and most of all — to make things happen. That same year, Erin founded ISF to turn her pain into action.

With ISF, Erin realized she could make an impact in small ways that would culminate over time. They didn’t need $100 million right away — but they needed $50k to improve their technology and equipment. These milestones seemed small, but they meant a world of a difference to families with kids with rare cancer and to the future of pediatric cancer care. 

The foundation raised $7,000 in its first year. Since then, it has contributed over $8 million to expand research, treatment, and support for affected families. Isabella’s audacious spirit saw her through until the very end. Despite countless treatments and five relapses, Isabella passed away in 2012 at only seven years old.

Empowering Research and Treatment

Today, Isabella’s legacy is seen through Erin, who continues as Executive Director of ISF, leading a team that drives forward the Foundation’s mission of improving rare pediatric cancer treatment options and creating meaningful, sustainable, and lasting change. Over seventeen years, ISF has made significant financial commitments to expand research and treatment options for rare pediatric cancers and support affected families. Partnering with Atrium Health and Levine Children’s Hospital, ISF funded clinical trials, developmental therapeutics, and a top-tier MIBG therapy suite—one of 20 nationwide. In 2020, the Isabella Santos Rare & Solid Tumor Program launched with Levine Cancer Institute, aspiring to be a global hub for children with solid tumors and rare cancers.

This year, ISF proudly announced the launch of the TORCH Initiative, an effort aimed at supporting rare pediatric cancer heroes at children’s hospitals across North and South Carolina. The TORCH Initiative, which stands for Transformational Outcomes for Rare Cancer Heroes, will support projects encompassing clinical trials, translational research, and survivorship support, with a focus on improving both the quantity and quality of life for young rare cancer patients. With a $2 million annual funding goal, ISF will have the opportunity to engage with every pediatric hospital across the Carolinas.

Building a Community of Support in Lake Norman

The Isabella Santos Foundation’s engagement strategies involve partnerships with major institutions, inclusive events, and digital initiatives to foster a supportive community where events are both educational and fun. Its journey underscores the transformative power of community involvement – even when the cause itself may be rare. Through financial contributions, innovative research, and unwavering support, ISF continues to make a tangible difference in the lives of children battling cancer. As ISF expands into the Lake Norman community, they invite local members to join their mission, honoring Isabella’s legacy and ensuring a future where no child fights cancer alone.

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