Who We Are
InclusiVibe Foundation is a disabled-led 501(c)(3) public charity based in Denton, Texas. We work at the intersection of music and medicine to support people living with complex neurological and connective-tissue conditions—and the musicians and communities who are affected alongside them.
Our organizational mission is to advance equity in music and healthcare by supporting adaptive artistry, empowering patient storytelling, and advancing research shaped by lived experience. To read our full mission, vision, and values, visit our Vision, Mission & Values page.
Advancing equity in music and healthcare for people with complex brainstem, spinal, and connective-tissue conditions.
Who We Are at a Glance
Who We Are
We are a disabled-led foundation rooted in the lived experience of brainstem, cranio-cervical, spinal, and connective-tissue conditions that are often dismissed as “functional” or “anxiety.” Our leadership and collaborators include patients, disabled artists, clinicians, and advocates who have lived through these gaps firsthand.
What We Do
On the health side, we focus narrowly on complex neurological and connective-tissue conditions that significantly affect upper-body function and/or breathing—especially when the brainstem, cervical spine, spinal cord, or autonomic nervous system are involved. On the arts side, we work more broadly with disabled and chronically ill musicians and their non-disabled collaborators to build adaptive, trauma-aware, and inclusive musical spaces.
Where We Are Now
InclusiVibe Foundation is a newly recognized 501(c)(3) public charity based in Denton and serving the greater Dallas–Fort Worth region and a growing national community. We are in our early years of operation, piloting programs with limited early funding while building a grassroots network of patients, disabled musicians, clinicians, and allies who want to change both practice and policy.
Who We Serve
Patients & Families
(our specific focus)
Our patient-facing work centers people living with complex neurological and connective-tissue conditions that significantly affect upper-body function and/or breathing. This includes, for example, craniocervical and atlantoaxial instability (CCI/AAI), occult tethered cord and other spinal tethering syndromes, Chiari and related hindbrain issues, ischemic or traumatic brainstem injury, and hypermobile Ehlers–Danlos and related connective-tissue disorders when they involve the spine or cranio-cervical junction. We also serve people with conditions like ME/CFS or severe dysautonomia when they cause profound functional decline and are repeatedly dismissed as “functional” or “anxiety.”
These are the communities most often told their symptoms are “in their head” while their nervous system, safety, and livelihoods are at risk. Our navigation, support, and research-informed advocacy are designed with them at the center.
Musicians, Artists & Arts Partners
(broader ecosystem)
Our music and arts work is intentionally broader. We collaborate with disabled and chronically ill musicians from many backgrounds—including those with sensory disabilities, limb differences, chronic pain, mental health disabilities, and other lived experiences that shape how they train and perform—along with non-disabled colleagues, composers, ensembles, and institutions who are committed to building more adaptive and accessible musical spaces.
In short, our patient services and research focus are narrow and deep, while our music and inclusion work is broader, helping shift the culture around neuro-complex disability within a wider movement for disability justice in the arts.
Why This Foundation Exists
the pattern we keep seeing
Too many lives are lost in the shadows of medical dismissal. From CCI and AAI to occult tethered cord, Chiari, hypermobile EDS, ME/CFS, dysautonomia, and other neuro-complex conditions, people are told it’s “anxiety” or “functional” while their brainstem, spine, and daily lives are on the line. Careers collapse. Housing becomes unstable. Families are left to make neurosurgical and rehab decisions with almost no guidance and no roadmap.
Over and over, patients lose years of work, stability, and dignity while fighting simply to be believed. Many are musicians and artists who watch their training, income, and sense of identity unravel without any safety net.
the gap in music
In classical music, there is almost no pathway for musicians whose upper bodies are affected by complex neurological and connective-tissue conditions. When a violinist, violist, cellist, pianist, or vocalist is living with—or develops—brainstem injury, cervical instability, spinal cord involvement, severe pain, or autonomic dysfunction that changes how their arms, hands, neck, trunk, or breathing work, the system has no cushion: adaptive technique for these realities is rarely built into conservatories or teacher training; there is little institutional support when a career derails due to chronic neurological injury; and musicians with neuro-complex disabilities are often treated as “too complicated,” not as leaders. Many simply disappear from the stage, even though their artistry and expertise remain.
the gap in medicine
In healthcare, there is still no coherent pathway for many structural and connective-tissue–related neuro-complex conditions that don’t fit neat textbook boxes. Patients move from ER to specialist to rehab without continuity, often labeled “psychogenic” or “functional” while symptoms escalate. There are few trauma-aware supports, almost no integration with housing and employment realities, and very little space for patients’ lived experience to shape research, education, or policy.
how we bridge those gaps
InclusiVibe Foundation exists to stand in these gaps—and connect them.
For patients, we provide story-driven support, navigation, and research-informed guidance so people are not left to fight alone for recognition and access to appropriate care.
For musicians and arts institutions, we develop adaptive artistry, commissions, and educational work that keep disabled artists in the field and reshape how training and performance spaces respond to complex disability.
For clinicians, educators, and allies, we translate lived experience into education, storytelling, and early-stage research partnerships so that brainstem, spinal, and connective-tissue conditions are recognized earlier and taken seriously.
We bring music and medicine back into conversation through concerts and short films, patient-led podcasts and narrative projects, support and navigation for neuro-complex patients and disabled musicians, and lived-experience–driven education for clinicians, families, and institutions.
The start of the advocacy work
As Amy began sharing her story publicly, patients flooded her inbox and podcast with eerily similar experiences: scans called “normal,” life-altering symptoms dismissed as psychological, families left to make neurosurgical decisions alone. At the same time, Susan was working inside the rehabilitation world to teach clinicians how to think beyond checklists, protect function and quality of life, and stop telling complex patients, “There’s nothing we can do.” Their conversations—and long-form interviews with patients—made it clear this was not a series of isolated tragedies, but a pattern baked into how healthcare and the arts handle complex neurospinal and connective tissue conditions.
What started as a podcast space where patients could finally speak freely revealed a much larger need. Patients didn’t just need a microphone; they needed navigation, safer rehab approaches, trauma-aware support, and a way for their stories to shape education, research, and policy. InclusiVibe Foundation was created to hold all of that: a disabled-led 501(c)(3) where patient stories are treated as data, art is treated as evidence of what’s possible, and lived experience—from both the clinical and patient side—drives the questions we ask and the systems we work to change.
InclusiVibe Foundation began with two people on opposite sides of the same broken system: a disabled violinist and a neurophysical therapist. Amy had lived through years of escalating brainstem and cervical instability that were repeatedly dismissed as “normal” or “anxiety,” even as she became paralyzed from the neck down and fought for basic recognition. Susan, an MPT specializing in neuroplasticity and complex neurological rehabilitation, kept treating patients with craniocervical instability, tethered cord, dysautonomia, and connective-tissue conditions who were labeled “too complex,” cycled through fragmented care, and sometimes disappeared—or died—without ever receiving coherent treatment or support.
You can read more about this origin story in our feature: Read Our Story (external article).
Where We Are Now
InclusiVibe Foundation is in its early years of operation as a recognized 501(c)(3) public charity. We are piloting programs with limited early funding while we build a grassroots network across Denton, Dallas–Fort Worth, and beyond.
Our immediate priorities include:
launching ConcertStories and StoryLab projects that pair adaptive performance with patient narratives,
establishing navigation and peer-support pathways for neuro-complex patients and disabled musicians, and
developing education and policy-oriented work with clinicians, universities, and arts organizations.
This is the stage where every supporter makes an outsized difference. Founding donors, volunteers, and partners are helping shape not only our concerts, podcasts, and support programs, but also the policy and education work that will follow—so hospitals, music schools, and arts institutions have better pathways for neuro-complex care and inclusion.
Your skills, your voice, and your time can help build a future where no patients or disabled artists are unseen, unheard, or unsupported.
Donate – Fuel our early programs, access funds, and storytelling work.
Volunteer – Lend your skills in research, media, outreach, or operations.
Partner – Collaborate as a clinician, arts organization, university, or sponsor to co-create programs and policy shifts.
Share Your Story – Submit a story as a patient, caregiver, or artist so we can better understand—and better serve—this community.
Be Part of the Change, Join Us
Change starts with all of us. InclusiVibe exists because patients and disabled artists refused to disappear quietly. We invite you to build the next chapter with us.