Who We Are — and Why We Can’t Wait for Change

Too many lives are lost in the shadows of medical dismissal. From CCI and AAI to Occult Tethered Cord, these conditions demand urgent visibility, advocacy, and action.

The InclusiVibe™️ Foundation is a disability-led nonprofit in formation dedicated to making under-researched, often overlooked illnesses seen, heard, and believed. We use adaptive music, lived experience, and creative storytelling to advance systemic equity in healthcare and the music industry.

We are currently securing legal and trademark protections while operating under a temporary project codename — but our mission is already in motion.

Your Gift Makes the Invisible Visible

Every contribution brings hope, amplifies patient voices, and creates life-saving awareness for rare and complex neurological conditions.

Your support changes lives. It funds adaptive concerts, multimedia advocacy, and collaborative research that challenge systemic dismissal in healthcare and restore dignity to patients. Together, we can transform access to music and medicine.

Be Part of the Change

Your skills, your voice, and your time can help build a future where no patient is unseen, unheard, or unsupported.

Change starts with all of us. Whether you volunteer at events, join our advocacy campaigns, or partner as a sponsor, you help turn invisible struggles into visible movements for equity and inclusion.

The Problem

Too many people with complex, often invisible neurological conditions — like craniocervical instability (CCI), Ehlers-Danlos Syndrome (EDS), or brainstem dysfunction — are dismissed, misdiagnosed, and left without the care they need. Disabled artists face systemic barriers to inclusion in the arts, while patients struggle in isolation: unseen and unheard.

A Founder’s Story
On March 13, 2024, I underwent skull-to-neck decompression and fusion surgery, hoping for relief after years of decline. My health began failing in 2020, but it wasn’t until 2023 that I finally received a correct diagnosis. In that time, I went from living in a fully functioning body to living with C1 quadriplegia and brainstem involvement, dismissed repeatedly as my condition worsened.

As my neurosurgeon told me in our very first consultation in October 2023: “If you were my family member, I would have done the surgery long ago.” That statement reflects the urgency we face:

The longer patients go unseen, the harder it is to restore their health and independence, and the more people are forced into this battle for answers, care that takes years to come.

With earlier diagnosis and proper intervention — through conservative care or surgery — lives can be transformed and sustained.

This is why awareness matters. This is why we act.

We’re not just raising awareness — we ask to take action.

Focusing on CCI, AAI, OTC, and beyond

• At the InclusiVibe™ Foundation, our advocacy begins with the conditions that shaped our journeys: craniocervical instability (CCI), atlantoaxial instability (AAI), and occult tethered cord (OTC).

  These conditions — often invisible on standard imaging and poorly understood by most physicians — can cause devastating neurological symptoms, from loss of mobility to brainstem compression. When left undiagnosed or untreated, they can steal years of independence, health, and life itself.

  But CCI, AAI, and OTC are only the starting point. Our mission extends to all complex, under-researched neurological conditions that leave patients unseen, unheard, and unsupported.

  Far too often, patients experience medical dismissal — where symptoms are minimized or overlooked through skepticism — and medical gaslighting, where their experiences are questioned or invalidated. These patterns are about a systemic problem that demands discussion, awareness, and change.

  By combining adaptive music, patient storytelling, and research-informed advocacy, the InclusiVibe™ Foundation brings visibility, hope, and action to those living in the shadows of medical neglect — and helps heal medical trauma through the shared human experience.

• Early Impact Snapshot

  • Over $16,500 in in-kind donations received, including legal & professional services, over 250 volunteer hours that have directly supported our startup phase.

  • Episodes of Hidden Diagnoses Impact podcast (YouTube) & InclusiVibe Musician Podcast

  • 2 music commissions currently in development with patient-centered themes

  • 20 patient journeys recorded and in various stages of released or editing →

  • 5 universities, organizations and clinical collaborators in early-stage conversations (UNT, United Spinal, Christopher & Dana Reeve Foundation, etc.)

  • 2–3 grant applications are currently in development and being prepared for submission (Dallas Arts & Culture | Texas Commission for the Arts | etc.)

We're just getting started — and none of this would be possible without your support.