The Macie’s Mission Podcast

In honor of Rare Disease Day, this episode of the Macie’s Mission Podcast shines a spotlight on the rare disease community and the urgent need for awareness, earlier diagnosis, and continued research. Jeff and Caitlin sit down with Gabby Zeppieri, founder of Gabby’s Wonderful World, whose personal journey embodies the challenges faced by millions living with rare conditions. Gabby lives with neutr...

In this episode of the Macie's Mission Podcast, hosts Jeff and Caitlin discuss the crucial role of community for families dealing with Pompe Disease. They are joined by Julie Duenges, a board member and mother of two daughters, diagnosed with Pompe Disease. Julie shares her personal journey from the initial diagnosis to finding support within the Pompe community.   The episode emphasizes the emoti...

In episode three of the Macie’s Mission podcast, Jeff and Caitlin recount their experiences around the first fundraising event for Pompe disease, highlighting community support and awareness efforts. They are joined by Peggy, Macie’s godmother and vice president of Macie’s Mission, who was integral to planning and execution. The podcast dives into the urgency felt to take action and the rapid orga...

In this episode of the Macie's Mission Podcast, Caitlin and Jeff Harris discuss their emotional first appointment with a genetics team following their daughter Macie's diagnosis of Pompe disease. They share their initial reactions, the important information they received, and how they plan to navigate their daughter's treatment and monitoring. The episode also touches on the importance of understa...

Join Jeff and Caitlin Harris as they share the emotional and life-changing experience of learning their daughter Macie’s diagnosis of Pompe disease. In this opening episode, they reflect on that pivotal day, the challenges that followed, and the strength and hope that carried them forward.