Speaker.
Writer.
Pathfinder.
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Navigating the ecosystem of rare diseases can be overwhelming, but with over 20 years of personal and professional experience, I bring clarity and connection to families, professionals, and industries alike.
As a parent of a child with a rare disease and an expert in human behavior, I bridge the gap between lived experience and professional understanding. Through impactful keynote speeches, engaging webinars, and insightful consultations, I illuminate the complexities of medical, educational, and behavioral challenges. I’m known in the community for creating transformative approaches and have devoted my life to helping others find hope, understanding, and purpose.
My passion lies in fostering meaningful connections and helping professionals understand the profound impact of trauma on families.
Together, we can build deeper empathy, enhance collaboration, and create lasting solutions.
About Jill
Jill Anne Castle, M.Ed has been a state and national advocate in both education and healthcare systems for over 20 years.
Jill holds a Master’s in Educational Psychology and Human Relations as well as a Master level certification in Behavioral Analysis and Positive Behavior Support. 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. Jill also consults with several other national and state organizations to help bridge the gap between families, educational institutions and the healthcare industry.
Lastly, and most importantly, Jill is a parent of two wonderful young men, one of which lives with Duchenne Muscular Dystrophy..
Jill's Talks
Together, we can build deeper empathy, enhance collaboration, and create lasting solutions.
TALK ONE
Life on a Waterbed:
The Ripple effects of Trauma
When someone is diagnosed with a rare disease or chronic illness, the effects often extend far beyond the individual patient, creating a profound impact on the entire family unit. It's like stepping onto a waterbed: one person's pain sends ripples across the entire family, shifting roles, routines and behavior in ways no one expects. This compelling talk will explore those ripples- the invisible weight families carry. We will learn how it impacts the clinical experience and outcomes and what we can do to begin to shift from surviving to healing not only the whole patient, but cultivating a landscape where the whole family can move forward.
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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 and ultimately rewarding journey.
TALK TWO
The Mouse in the Maze:
Navigating Impossible Systems
Living with rare disease or chronic illness means navigating a maze of complex systems- healthcare, insurance, education and social services- all while managing the physical and emotional toll of the condition itself. This keynote explores the hidden challenges patients and families face as they fight for accurate diagnosis, timely treatments and access to care and what we can do to lessen the burden.
Through real life stories and actionable insights, we will uncover systemic barriers, share strategies for advocacy, and call for meaningful change to create a more equitable and compassionate world for those living with rare diseases.
TALK THREE
Embracing the Messy Middle:
How I found hope and joy through the fear of uncertainty.
In this provocative talk, Jill shares a deeply personal journey through the twists and turns of life with a rare disease. Drawing on two decades of experience, Jill explores the challenging emotional terrain families face—from the unexpected diagnosis to navigating ongoing treatments.
This compelling keynote combines heartfelt storytelling, practical strategies, and a refreshing dose of vulnerability, offering both comfort and tangible takeaways to anyone seeking light in the midst of uncertainty. Prepare to be inspired, enlightened, and empowered to find genuine hope and even joy in the beautifully messy middle of rare disease.
Jill's Testimonials
Let's Connect
If you are looking for someone to transform your team and help secure a strong liaison with the rare disease or chronic illness community, Jill Anne Castle is the answer for your next event.
Email: Jillannecastle@gmail.com
Call: 480-734-4339