You Helped Us Raise $1,167.68 on Giving Tuesday 💛
Thanks to early donors and supporters, we’ve covered core startup costs, kept our patient-storytelling podcasts online, and taken the first concrete steps toward our 2025 programs in adaptive concerts, storytelling, and patient support. Our donation portal remains open through December 31 — every gift moves this mission forward.
We advance equity in music and healthcare by supporting adaptive artistry, empowering patient storytelling, and advancing research shaped by lived experience.
We build this vision with and for neuro-complex and brainstem-affected communities—especially patients and disabled artists navigating EDS, CCI/AAI, and related conditions—so their voices are heard and their stories drive change in care.
Mission + Who We Serve:
Who We Are
InclusiVibe Foundation
InclusiVibe Foundation is a disabled-led, early-stage 501(c)(3) nonprofit focused on neuro-complex and brainstem-affected communities. We are currently in our pilot phase, building programs and proof of concept across performance, storytelling, research, and access.
A Moment That Sparked a Mission
In March 2024, our first encounter in Washington, D.C., revealed a shared passion: a neuro-PT seeing patients every day, and me, a violinist with severe CCI, living it from the inside.
That connection grew into the InclusiVibe Foundation.
Your support keeps it alive — funding care, research, and artistic voices that are too often unheard — directly starts in our fiscal year one.
Meet the founder
The story behind InclusiVibe Foundation
Hello — I’m Amy Wang-Hiller,
a violinist, educator, disability advocate, and neuro-complex patient living with Ehlers–Danlos syndrome (EDS), craniocervical and atlantoaxial instability (CCI/AAI), and brainstem injury.
For years, my symptoms were dismissed or mislabeled. I watched my health, career, and sense of safety slowly unravel while the systems around me insisted nothing was wrong. Music became both my lifeline and my evidence: my body could no longer move the way it used to, and that deterioration was telling a story medicine wasn’t listening to.
InclusiVibe Foundation grew out of that gap — and out of the relationships I’ve built with other patients, clinicians, and disabled artists who are just as determined to change what “care” hopes to look like. As a disabled-led, early-stage 501(c)(3), we’re building proof of concept that adaptive artistry, patient storytelling, and research shaped by lived experience can move the needle for neuro-complex and brainstem-affected communities to receive better care and enough visibility.
If you see yourself, your patients, or someone you love in this story, I’m glad you found us. I hope you’ll stay, participate, and help us build what we didn’t have.
For Brainstem Compression & Neuro-Complex Conditions
For brainstem compression and neuro-complex conditions: finally seen, finally heard
For too long, brainstem compression has been under-recognized and misunderstood—often leading to misdiagnosis, delayed care, and years of ineffective treatment. Patients may experience dizziness, dysautonomia, fatigue, swallowing difficulties, headaches, and cognitive changes that reflect impaired function at the brainstem and upper cervical spine.
While brainstem compression is a key focus of our work, it’s part of a larger pattern we see across complex conditions like Ehlers–Danlos syndrome (EDS), craniocervical instability (CCI), atlantoaxial instability (AAI), tethered cord syndrome (TCS), and other under-recognized disorders. When symptoms remain invisible, care is delayed and lives are deeply impacted.
Fuel access. Amplify voices.
Why this Mission Matters
As artists and musicians, we have the power to shine light on invisible illnesses and unseen disabilities. EDS, CCI, AAI, and TCS are often misunderstood or missed until they become life-altering.
Why does this Mission Matter?
Testing is not standardized.
Research is underfunded.
Treatment is rarely covered.
Complex conditions aren’t rare
They’re rarely recognized, continually being overlooked, and being labeled as something else…
We unite arts, patients, and clinicians to build shared tools, a guided navigation system, patient-first goals, and evidence-informed access—because advocacy takes all of us, so that fewer patients fall through the cracks.
What Do We Do
BRIDGE-pillars overview
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We share patient stories through podcasts, performances, and short films — ensuring lived experiences shape awareness, research, and policy.
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We commission and perform new works with disabled and chronically ill musicians, showcasing how creativity adapts to everybody.
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We educate through concerts, media, and community events that highlight conditions like EDS, CCI, AAI, and TCS — bringing visibility to the unseen.
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We contribute to research on complex neurological conditions by developing patient-led data initiatives and supporting interdisciplinary studies that improve diagnostics, treatment, and rehabilitation.
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We contribute to research on complex neurological conditions by developing patient-led data initiatives and supporting interdisciplinary studies that improve diagnostics, treatment, and rehabilitation.
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We connect patients, clinicians, researchers, and artists — building a united movement that transforms access in music and medicine, and laying the groundwork for the CareBridge Fund to reduce financial cliffs.
Current priority / ConcertStories teaser
In our first pilot year, we’re focusing on ConcertStories™, a disabled-led performance and short-film project that pairs live music with the real stories of neuro-complex patients.
Our Spring Stage Pilot in North Texas will include a work-in-progress performance in Denton, a mini-gala–style event in Dallas, and an adaptive performance paired with EDS/brainstem awareness education.
We’re seeking approximately $25,000 in cash support (out of a ~$40,000 project value) to fully fund this pilot — covering artist and patient collaborator fees, accessible venues, ASL/CART and access needs, and filming/editing of 3–4 ConcertStories™ pieces we can share with hospitals, universities, and funders.
Current priority:
ConcertStories™ Spring Stage Pilot
In the Media – WFAA Video
Disabled North Texas violinist uses music to transcend her ailment
In 2024, the Dallas–Fort Worth station WFAA shared my story right before my decompression and fusion surgery. By the time we revisited the story after surgery, I was already determined to do something for this community. As a violinist living with severe CCI/AAI and brainstem injury after years of misdiagnosis and dismissal, I described how my symptoms escalated rapidly until they paralyzed me from the neck down—yet still weren’t enough for local doctors to identify the cause or offer a coherent treatment plan. Again and again, there was a push to leave my condition under a vague “functional” label to make things easier for the system, not safer for me. The segment highlights why earlier recognition of connective tissue disorders and upper cervical instability matters—not just for my life and career, but for thousands of patients whose symptoms are still being written off as “anxiety” or “functional.”
This coverage helped more patients put words to what they were experiencing and showed our community that these issues are real, serious, and urgently in need of better pathways to care.
Watch the piece to see why InclusiVibe Foundation exists—and how it grew from a personal journey and a one-person podcast into a bold effort to use creativity to make neuro-complex and brainstem conditions visible in both medicine and the arts.
WFAA feature on Amy Wang-Hiller and the long road to recognizing brainstem and connective tissue injury.
Join Us
& Make an Impact
This mission belongs to all of us.
InclusiVibe Foundation is a disabled-led, early-stage nonprofit. Your involvement helps us prove what’s possible for neuro-complex and brainstem-affected communities, and expand access in music and medicine.
Together, we can bridge the gap between what is known and what is needed — ensuring no one facing these challenges is left without hope, resources, or representation. InclusiVibe Foundation
We welcome:
Volunteers who want to contribute their time and skills.
Interns seeking hands-on experience in nonprofit operations, advocacy, media, or arts programming.
Advisory board members who can guide our growth and expand our reach.
Experienced nonprofit board members ready to help shape strategy and sustainability.