Listen "Advocacy Starts at Home: Building Support for Rare Disease Families - EP 18"
Episode Synopsis
🚀 In this heartfelt episode of The Big Huntsville Podcast, host Carl Thomas sits down with Sarita Edwards, founder and CEO of The E.WE Foundation. What began as a personal journey through grief and advocacy for her son Elijah, who was born with Trisomy 18, has grown into a nationally recognized nonprofit supporting families navigating rare diseases. Sarita shares how her family’s experience shaped a mission that now reaches into education, healthcare policy, and grassroots support for families across the country.🎧 Hosted by: Carl Thomas 👤 Guest: 🏡 Sarita Edwards Sarita Edwards, MHA is the President and Chief Executive Officer of The E.WE Foundation, a nonprofit based in Huntsville, Alabama, dedicated to supporting families impacted by Trisomy 18 (Edwards Syndrome) and other rare diseases. With over twenty years of experience in health systems leadership, she holds a Master’s in Healthcare Administration, a Bachelor of Science in Health Science, and national certification as a Youth Mental Health First Aid Instructor. A licensed minister and award-winning advocate, Sarita is recognized globally as a patient expert, serves on multiple executive advisory boards and coalitions related to healthcare and rare disease policy, and is currently pursuing a Doctorate in Health Sciences.💡 What You’ll Learn: ✔️ What Trisomy 18 is—and how Sarita’s family faced the diagnosis ✔️ Why advocacy in the healthcare system starts with asking questions ✔️ How families can become empowered, not overwhelmed ✔️ The power of grassroots organizing in changing policy and care ✔️ How grief became a platform for creating systemic impact🎵 Whether you're a parent, professional, or policy advocate—this episode delivers compassion, clarity, and a call to action.💼 Connect with Sarita Edwards & The E.WE Foundation:🌐 Website → https://theewefoundation.org/🔗 LinkedIn → https://www.linkedin.com/in/saritakedwards🎙 Follow Carl Thomas – The Big Huntsville Podcast:📘 Facebook → https://www.facebook.com/people/Carl-Thomas/100078056746511/📷 Instagram → https://www.instagram.com/carl_thomas_huntsville/🔗 LinkedIn → https://www.linkedin.com/in/carl-thomas-sells⭐ Produced by Icons of Real Estate - https://iconsofrealestate.com/
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