Battling Alpha-1: A Community's Quest for Answers

The Heart of Giving Podcast

Dear Friends of The Heart of Giving, This week's conversation features Scott Santarella, CEO of the Alpha-1 Foundation, revealing how a rare genetic condition affecting 100,000 Americans is being addressed through innovative research, community support, and unwavering hope. Key moments: "If you feel like you did something good in the world or helped somebody, it makes you feel good." - Discover how 25+ years in the nonprofit sector led Scott to champion rare disease advocacy. "We think inherently people want to help one another...Sometimes it takes charities to actually be developed to focus on particular areas." - Learn how nonprofits fill crucial gaps in healthcare that the marketplace hasn't addressed. "75% of our board has to be patients or patient family members...If it's good for patients, we're going to figure out how to do it. If it's not good for patients, we don't do it." - Explore how patient-centered leadership drives meaningful impact. In Case You Missed It: From Wall Street to Global Impact with Ozzy Samad Last week's conversation featured Brothers Brother Foundation President Ozzy Samad sharing: - How they distribute 200 million doses of medicine annually - Their expansion from international aid to domestic mobile health clinics - The importance of transparent valuations in building donor trust - Why meaningful change often starts in our own backyard Support These Important Conversations The Heart of Giving brings you stories of organizations addressing critical needs in innovative ways. Your support helps us: - Share more stories of impact - Maintain quality production - Create resources for nonprofits - Build a stronger giving community Have a Great Week!