We are thrilled to share that Hope for HIE’s Executive Director, Betsy Pilon, joined Keira Sorrells on the NICUnity Podcast to dig into a conversation that sits at the heart of our work—what it truly takes to fund, sustain, and grow (inter)national parent-led organizations rooted in lived experience.
This episode, “Funding Parent-Led Progress: What National Organizations Need Most,” shines a light on the realities, challenges, and opportunities facing mission-driven organizations like ours that were built by families, for families.
Key Takeaways:
Understanding the tables we’re trying to join—or intentionally build
Parent-led organizations bring something uniquely powerful to healthcare, research, and advocacy. We discuss how clarity of purpose and audience shapes our seat at those tables and strengthens our impact.
Staying authentic while leading boldly
Lived experience leadership requires vulnerability and strength. Betsy and Keira talk about what it means to lead authentically while navigating growth, strategy, and the responsibility to elevate a whole community.
How collaboration and purpose-driven research fuel real change
We look at how family experience, when paired with evidence-informed research and cross-sector collaboration, becomes a driver of systemic transformation—not just storytelling, but systems-level impact.
Why funding parent-led movements matters now more than ever
Organizations like Hope for HIE and the NEC Society fill critical gaps—supporting families, advancing science, combating misinformation, and building long-term infrastructure for meaningful change. Sustainable funding ensures this work endures.
🎧 Listen Now
We’re grateful to be part of this important conversation—and to everyone who continues to champion nonprofit leaders, small business owners, and advocates supporting NICU and bereaved families. Together, we are transforming hope into action.
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