Your gift today helps us fund life-saving diagnosis and surgeries, produce patient-driven storytelling, and support disabled musicians shaping this movement.

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

Thousands of people worldwide — many still undiagnosed — live with conditions like Ehlers-Danlos Syndrome (EDS), Craniocervical Instability (CCI), tethered cord, and brainstem-related neurological impairment.

They’re routinely dismissed, misdiagnosed, and left unseen in both medical systems and creative spaces.

Without proper recognition or care, their symptoms often progress to severe neurological decline: near paralysis, loss of mobility, and the inability to function independently.

Founder’s story - a reflection of many

“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.”

Our Response

We’re building a new kind of nonprofit initiative — one that brings music, medicine, and advocacy together to center the lives of disabled artists and underdiagnosed patients.

This Foundation — currently pending incorporation, trademark, and 501(c)(3) status — is led by artist and advocate Amy Wang-Hiller, whose own recovery journey drew together a community of similarly complex, underserved patients.

She is joined by Susan Chalela, MPT, a specialist in treating EDS patients with craniocervical and atlantoaxial instability. Her clinical expertise and deep commitment to patient-centered care are fully aligned with the Foundation’s mission.

These projects are already connecting people — because the need for visibility and voice won’t wait for a budget, but we need support.

We fund and launch:

💬 What We’re Already Doing

We're not waiting for funding to take action. Here’s what’s already happening through lived experience and collective effort, but we need support. your donation matters, your volunteering matters:

• 📣 Facebook Group – InclusiVibe Creative Circle
  An open community for disabled artists, composers, and creative patients to share their work, ideas, and lived experiences in a supportive, accessible space.

• 🎧 Active Podcasts – Ongoing Series Hosted by Amy Wang-Hiller
  Two original podcast series are live, with dozens of episodes featuring patient stories, adaptive artistry, and honest conversations around access, diagnosis, and identity.

• 🎥 Video Conversations with Consent
  We host and record patient-led, trauma-informed video dialogues centered on disability advocacy, care access, and the realities of navigating life with complex conditions.

These projects are already connecting people — because the need for visibility and voice won’t wait for a budget, but we need urgent support to continue what we do.

🚀 What We’re About to Do

With your support, we’re ready to launch the next phase of impact — combining adaptive artistry, patient storytelling, and real-world support.

• 🎼 Commission Our First Central Work
  Janice Shein’s original composition, based on the founder’s story, performed by the founder herself with her adaptive performance — setting the tone for a new kind of concert.

• 🎥 Film Our First Concert + Advocacy Short
  A hybrid music + documentary piece that amplifies disability stories through sound and storytelling.

• 🧠 Host Our First Adaptive Workshop + Grant Session
  Led by Amy Wang-Hiller and Susan Chalela, PT — bringing performance coaching and care access directly to the musician for awareness and health education

Early Impact Snapshot

• 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.

Phase 1: Launch Fund Breakdown

We’re raising $30,000 to build the core infrastructure that will legally launch and sustain this work.

Your gift supports:

• 🧾 501(c)(3) legal filing and incorporation fees

• 🛡️ Trademark protection for our name and programs

• 🖥️ Admin setup (insurance, business banking, ops systems)

• 📋 Tools to manage artist stipends, partner outreach, and early grant activity

This phase enables public fundraising, grant eligibility, and strategic partnerships — laying the legal and operational groundwork for all future impact.

Funds are securely held in a separate business account. IRS approval is in progress, and qualifying donors will be recognized retroactively.

Engaged Advisors & Early Conversations

• Christopher & Dana Reeve Foundation — early dialogue underway to explore potential research alignment

• University of North Texas (UNT) College of Music — early conversations underway with NOVA Ensemble and the Orchestra about possible collaborative involvement

• A December 10 gathering is scheduled with Human Rights Dallas to explore how this partnership might take shape

• Advocating for Susan Chalela, MPT (Co-author of FFF™️ Neuroplasticity Rehab Model)

Founding Donor Opportunities

We are currently forming our inaugural Founding Circle of Donors. Supporters who give $5,000+ will:

• Be invited to join exclusive virtual conversations with our leadership, artists, and medical advisors

• Have the option to name a grant or scholarship in their honor or in memory of another

• Help shape the future advisory board through special input sessions

• Recognition on our website, donor wall, and campaign media (or anonymous if preferred)

• The opportunity to nominate a disability-focused organization for future mini-grant or co-promotion consideration

"I was told I would need full-time care. Now, I’m learning to balance upright — to stand for others who’ve been overlooked, and for those who are still urgently fighting for care, diagnosis, and treatment." — Amy Wang-Hiller

Ready to Help?

Be part of something powerful from the ground up.

Or more questions? amy@amywanghiller.com , or

Meet the Team Behind the Mission

Our team brings together disabled musicians, healthcare professionals, and advocates who believe in transforming access in music and medicine. With lived experience and deep expertise, we create programs that raise awareness of hidden conditions, support adaptive artists, and push for inclusive healthcare.

From composition and patient storytelling to clinical insight and policy change, every team member is here to make a difference. Find out more about them here: Meet the Team

Want to get involved?
If you're passionate about advocacy or want to support our mission through donations, book a meeting with our founder to learn how you can help.

💌 A Special Note for GoFundMe Supporters

If you’ve followed my medical journey through GoFundMe, thank you.

Your support helped me recover from a major spinal surgery. Now, that same spirit of hope and momentum is growing into something bigger.

This Foundation is the next chapter: a way to build access, visibility, and care for others who are still navigating what I survived.

If you'd like to continue being part of this mission, your contribution now helps fund:

• Our first nonprofit filings and operational setup

• Launch grants for other disabled musicians and patients

• Concerts, podcasts, and workshops that uplift our stories

You believed in me — and now I’m using that belief to build something that helps others rise, too.

Visit: amywanghiller.com/initiative
Email: admin@IclusiVibe.org

We’re not calling out—we’re calling in.
Toward a healthcare future shaped by lived experience and mutual respect.
If you would like to apply, please use the form below. Screenreader users, please have your reader make sure it is highlighting the “Fill Out a Short Application” link.

Other ways to Get Involved with Our Mission:

Copyright © 2025 The InclusiVibe Foundation

A patient-powered & physician-informed arts & health platform