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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.

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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 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. 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.


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

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 and ultimately rewarding journey.

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TALK TWO

The Mouse in the Maze:

Navigating Impossible Systems

Living with rare disease 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.

 

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.

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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.

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Jill's Testimonials 

Jill Anne Castle’s honest, vulnerable presentation “life on the waterbed” has opened the door for a more empathetic dialogue in our industry. Attendees praised the combination of heartfelt storytelling and evidence-based insights, underscoring how it forged a genuine connection. Jill’s work is an invaluable perspective that shines a powerful light on the family journey in rare disease therapy and research.

Aurora E. Flores, Patient Engagement

 PTC Therapeutics

Jill’s an amazing storyteller, weaving narratives that resonate with the hearts of our community. Through her narratives, she doesn't just educate; she invites everyone to understand the nuances of managing difficult, sensitive issues. Jill doesn't just teach; she empowers. Her stories are more than anecdotes—they're lessons on resilience, hope, and the triumph of the human spirit.

Pat Furlong, President and Founder

Parent Project Muscular Dystrophy

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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.

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Call: 480-734-4339

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