Navigating the “Messy Middle” in Rare Pediatric Cancer Fundraising
By: Erin Santos-Primis, Mom to Isabella and Executive Director of the Isabella Santos Foundation
Starting a nonprofit in honor of a loved one lost to a tragic disease is often a grieving family’s way of finding purpose. It offers a sense of action, a distraction and the hope that it can contribute to finding a cure or at least provide some relief – a way to channel pain into progress. I know because that’s where I was 17 years ago.
The Isabella Santos Foundation (ISF) was born while my daughter Isabella was in the fight of her life. Even as she battled neuroblastoma, she actively raised money for other kids she met in the hospital. Our mission was clear: to make a direct impact on patients and their families. We didn’t need a cure to feel progress; we needed a clear focus. In our first year, we set out to raise $10,000.
Nearly 18 years later, Isabella would have been approaching her 20th birthday. She passed away at the tender age of seven, and ISF has since raised over $14 million to advance research for rare pediatric cancers and support programs for families enduring this nightmare at every part of their journey.
