Erin Santos Primis, the founder and executive director of the Isabella Santos Foundation (ISF), shares her journey of transforming the unimaginable loss of her daughter, Isabella, into a lasting impact for children with rare pediatric cancers. Starting with a local 5K that raised $7,000 during her daughter's treatment for neuroblastoma, Erin has propelled ISF to raise over $18 million. She discusses the foundation's evolution from focusing on her daughter's story to embracing the stories of other children, which expanded their mission to support all rare pediatric cancers. Erin offers a look into her authentic and sometimes "crass" communication style, the importance of building a true community around a cause, and the strategic decision to operate in the "messy middle" of nonprofits—filling gaps that larger organizations may overlook and smaller ones cannot afford. She also reveals her innovative fundraising strategies, such as creating events that prioritize attendee experience over explicit branding, and offers advice to other parents who are considering starting a foundation in the wake of loss.
Takeaways:
- Center the "Why," but Evolve the Narrative: While the foundation began with Isabella's personal and magnetic story, Erin strategically expanded the narrative to include other children and different rare cancers. This not only allowed her family some privacy but also scaled the foundation's reach and impact by resonating with a wider community.
- Embrace Authentic Communication: Erin advocates for a leadership style that is real and direct, even if it feels "crass". She found that channeling her genuine frustration and anger connected deeply with her target audience of mothers and supporters who felt the same way, proving that authenticity builds trust and inspires action.
- Find Power in the "Messy Middle": ISF thrives by filling the gaps between small grassroots efforts and large national organizations. By focusing on community-based needs like funding nurse navigators, mental health services, or fertility preservation programs not covered by insurance, "messy middle" nonprofits can make a critical and tangible impact.
- Build a Community, Not Just an Audience: Erin emphasizes knowing her donors personally, creating a "community tribe" where people feel seen and part of the mission. This deep sense of community fosters loyalty and powerful, word-of-mouth advocacy that fuels growth.
- Reinvent Fundraising by Focusing on the Experience: To combat donor fatigue, Erin developed a fundraising event "disguised" as a fun, desirable experience—a meet-and-greet with stars from Bravo's Southern Charm—that prioritized the audience's enjoyment. This strategy generated unprecedented buzz and financial success by meeting the audience where they are, rather than leading with the organization's brand.
- Influence is About Legacy: Erin defines influence as the ability to leave a legacy that makes the world a better place. By educating her community and empowering them to become advocates, her influence extends through a "telephone game" of shared stories and passion, ensuring her daughter's impact will last forever.
- Pause Before Starting Your Own Foundation: When advising parents experiencing loss, Erin suggests they take time and first consider partnering with an established organization. This approach allows them to channel their passion productively without immediately taking on the lifelong emotional weight and market challenges of running a founder-led nonprofit.
Quote of the Show:
- "We're out there raising money for kids who haven't even been diagnosed yet... It's not about saving a person, it's about saving a generation of kids that are coming up, and that makes it what's even more special".
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