Volunteer of the Year Award Winners
Available on Spotify and Apple Podcasts
Part One
Guest(s): Fel Echandi, Milinda DiGiovanni, Collin Johnson
Episode Overview:
Over the next two episodes, we’re celebrating six incredible individuals—our 2024 Volunteers of the Year! In this first part, we highlight the inspiring journeys of Fel Echandi, Milinda DiGiovanni, and Collin Johnson and the lasting impact they’ve made in the Hemophilia B community.
Fel Echandi’s advocacy started at home when his son was diagnosed with severe Factor IX deficiency. Over the years, he has become a leader in supporting Spanish-speaking families, ensuring that language is never a barrier to care and connection.
Milinda DiGiovanni, both a mother and a carrier of Hemophilia B, has dedicated over 15 years to caregiving, advocacy, and uplifting families nationwide with her infectious joy and laughter.
Collin Johnson has never let Hemophilia B hold him back. An adventurer at heart, he embraces hiking, rock climbing, and snowboarding while mentoring others to show that with the right approach, nothing is impossible. Known as "the ace in the pocket" within the Coalition, Collin is always ready to step up and support the community.
Their paths may be different, but they share a common mission—ensuring that the Coalition for Hemophilia B continues to change lives, just as it did for them.
Part Two
Guest(s): Valerie Schneider, Christopher Maddix, Rick Starks
Episode Overview:
This is part two of our special 2024 Volunteers of the Year series, celebrating the incredible individuals who help the Coalition for Hemophilia B thrive. In part one, we highlighted Colin, Fel, and Milinda—if you haven’t listened yet, be sure to check it out! Today, we turn the spotlight on three more inspiring community leaders: Valerie Schneider, Christopher Maddix, and Rick Starks.
Valerie Schneider’s journey began when her son was diagnosed with severe Hemophilia B at birth. She has since dedicated herself to ensuring that no family navigating this condition feels alone.
Christopher Maddix has been part of the Coalition since his teenage years, living with Hemophilia B and an inhibitor. Through volunteering, he found his voice—becoming an advocate and mentor for others on a similar path.
Rick Starks has lived through decades of advancements in Hemophilia B treatment, but it wasn’t until his own daughter’s diagnosis that he fully embraced the community. Through his work with the Coalition and his expertise in Tai Chi and movement, he has helped many manage both the mental and physical challenges of living with Hemophilia B.
Though their experiences are unique, Valerie, Christopher, and Rick share a common mission—giving back to the community that changed their lives and ensuring that others receive the support they need.
Made in partnership with Balancing Life’s Issues