Bobby Jones Chiari & Syringomyelia Foundation

Patients are often asked to explain years of symptoms, diagnoses, and lived experience in just a few minutes. But most people are never taught how to make sense of their story, communicate it clearly, or decide what they want to do with it. Research shows that writing and reflecting on personal experiences can improve both emotional and physical well-being, while helping patients feel more in control of their care

Your story is not just something you went through. It’s something you can use to heal.

In collaboration with Bobby Jones CSF, patient advocate and author Christie Cox introduces the Crafting Healing Narratives Course. This free on-demand course is designed to help patients reflect on their journey, organize their story, and choose how they want to share it. The six-module course (each ~30 minutes) guides you through:

1. Understanding Your Story. Reflect on your journey, identify key moments, and recognize your resilience.
2. Foundations of Writing. Learn simple storytelling techniques and define what you want your story to do.
3. Writing as Healing. Use writing as a tool to process experiences, build resilience, and integrate your story—not just relive it.
4. Communicating to Different Audiences. Learn how to tell the same story in different ways—to doctors, family, or the public—so you are actually understood.
5. Finalizing & Sharing Your Story. Explore real options for sharing, from private reflection to blogs, nonprofits, or even publishing.
6. Reflection & Next Steps. Walk away with stronger communication skills, a sense of closure, and the confidence to use your voice however you choose.

If you missed Christie Cox’s course introduction webinar that took place on May 27, 2026, you can still view it here.

Every Chiari, syringomyelia, or related disorder journey is different—and your story could help someone else feel less alone.

We’re expanding our website to feature stories from patients and families. Whether you’re newly diagnosed, years into your journey, a caregiver, or somewhere in between, we want to hear from you.

Your experience matters. Your voice matters. Your story could make a difference!