About

InclusiVibe™️ Foundation is a disability-led nonprofit in formation focused on storytelling through adaptive music, lived experience, and systemic equity in healthcare and the arts.

We are in the process of securing legal and trademark protections, and operating under a temporary project codename.

The Problem

“On March 13, 2024, I finally underwent skull-to-neck decompression & fusion surgery hoping for relief. From having my body first systemically fail in 2020 until recieving a proper diagnosis in 2023, I was dismissed over and over, while my body’s function worsened over time; from being in a normal, functioning human body to having C1 quadriplegia with brainstem involvement. As my neurosurgeon told me during the first consultation in October 2023, “If you were my family member, I would have done the surgery long ago.“

7 months after surgery, I suffered a catastrophic neurological event. I was experiencing locked-in episodes, unable to speak or move from the neck down. My brainstem caused my respiratory failure and relied on 24/7 ventilator support and high-flow oxygen to survive and speak. After a year and half (this July), I am finally in a stable situation, able to go off a ventilator during the day sometimes, and have received KAFO braces for standing exercise.

But many people I have met through interviews or in the community, are still fighting for their lives, trying to get an accurate diagnosis for their conditions and seek effective treatments for themselves. That’s why I’m building this Initiative. Not just to survive… but to build a Foundation for others like me.”

Early Impact Snapshot

Episodes of Amy’s podcast

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

  • 20 patient journeys recorded and in various stages of editing for release —>

  • 5 universities, organizations and clinical collaborators in early-stage conversations

  • 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.

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