Jill Castle | Director of Patient Education & Patient Advocacy
Little Hercules Foundation
Jill Anne Castle, M.Ed has been a state and national advocate in both education and healthcare systems for over 20 years. Jill has designed curriculum and been an adjunct professor of Educational Psychology and Leadership at Mary Lou Fulton Teachers College at ASU. She has been a State Department Mediator, a Special Education Director, and a Behavior Coach for parents, educational professionals and industry. She is currently the Director of Education and Patient Advocacy for Little Hercules Foundation, an organization focused on access to treatment in the rare disease space. Lastly, and most importantly, Jill is a parent of two wonderful young men, one of which lives with Duchenne Muscular Dystrophy.
Appearances:
Day 2 - World Orphan Drug Congress USA 2025 @ 13:40
Presentation: Life on a waterbed; the ripple effects of trauma
In the journey of living with a rare disease, the effects often extend far beyond the individual patient, creating a profound impact on the entire family unit. This compelling talk will explore the emotional and psychological trauma experienced by families navigating the complexities of rare illness. Using the metaphor of a waterbed, I will illustrate how the ripples of trauma can shape family dynamics, relationships, and overall well-being. Join us to understand the intricate interplay of trauma and healing and discover ways to create a nurturing environment that empowers both patients and their families on this challenging journey.
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