Who We Are
InclusiVibe Foundation is a 501(c)(3) patient advocacy organization based in Denton, Texas. We advance diagnostic accuracy and humane care for individuals with complex neurological and connective tissue conditions through patient experience research, evidence-based clinical empathy interventions, and provider education.
We were founded by Amy Wang-Hiller, a doctoral violinist who became quadriplegic from craniocervical instability after years of delayed diagnosis. She founded InclusiVibe because the system that failed her shouldn't fail anyone else.
Who We Serve
Anyone living with complex neurological and spinal conditions such as CCI, AAI, brainstem compression, tethered spinal cord, Chiari, POTS, dysautonomia, MCAS, ME/CFS, intracranial hypertension, spontaneous CSF leak, and occipital neuralgia, often coexisting with connective tissue disorders including Ehlers-Danlos Syndromes, Hypermobility Spectrum Disorders, Marfan Syndrome, and Loeys-Dietz Syndrome.
The Problem
Research documents an average diagnostic delay of more than 14 years for individuals with rare and complex connective tissue conditions (EURORDIS, 2009). In one study, 94.4% of patients with hypermobile EDS reported having received a psychiatric misdiagnosis prior to their EDS diagnosis (Lee and Chopra, 2025). Chronic brainstem compression from craniocervical instability remains under-researched and underrecognized compared to acute brainstem injury from stroke or trauma (Henderson et al., 2024).
There is no established care pathway for patients with ligament injury at C1. Insurance frequently classifies the surgeries these patients need as experimental. Patients are routinely told their symptoms are functional, psychiatric, or anxiety-related without investigation for structural, neuroimmune, or vascular causes. This is a systemic failure of investigation, not a failure of individual providers.
Why InclusiVibe
Other organizations advocate for connective tissue disorders. Other organizations fund neurological research. Other organizations run support groups. InclusiVibe Foundation does something none of them do: we sit at the intersection where connective tissue weakness causes serious neurological injury, and we use music and narrative art to change how the system responds.
We exist because no single organization holds the full picture of what this population lives with. EDS organizations focus on the connective tissue diagnosis. Neurology organizations focus on the brain. Spinal cord injury organizations focus on the cord. But our community lives with all of it at once, and they fall through the gaps between every specialty.
InclusiVibe was built by a patient who fell through those gaps. A violinist who became quadriplegic because no one connected the dots between her connective tissue disorder and the neurological injury it was causing. This foundation exists so that the system that missed her doesn't miss the next person.
We do not just advocate for patients. We translate patient experience into provider understanding, and we use that translation to change the system that failed them. Not by asking the system to be kinder, but by building the evidence and the interventions that make the system structurally better.
Our Approach
We believe three things must happen to change the system:
First, the problem must be measured. Without data, there is no proof. We are building the research to document what patients experience.
Second, providers must be reached. We are developing clinical empathy programming that uses music and patient narrative to change how providers understand and respond to this population.
Third, what works must be scaled. When we have the evidence, we will build provider education that reaches medical professionals at the institutional level.
Our Value Our VIBE
Visibility
Inclusion
Belonging
Equity
Awareness Ribbon
Blue, orange, and purple zebra-stripe ribbon.
Blue: neurological (brain, brainstem, craniocervical junction)
Orange: spinal cord
Purple: connective tissue and systemic
The zebra stripe pattern honors the EDS community's established symbol while extending it to represent the broader neuro-connective tissue population.