InclusiVibe Foundation is a 501(c)(3) nonprofit based in Denton, Texas. We advance diagnostic accuracy and systemic change for people with complex neurological and connective tissue conditions, building the care pathways this community has had to fight to find, at the intersection of music and medicine.
This June, the City of Denton recognized June as Complex Neuro-Connective Tissue Conditions Awareness Month. Mayor Gerard Hudspeth signed the proclamation — the first municipal recognition of this community in the United States.
The problem was documented, peer-reviewed, reproducible
94.4% of hEDS patients received an incorrect psychiatric diagnosis before an accurate one. The average diagnostic delay is 22.1 years. The average number of alternative diagnoses received is 10.45. These are not anecdotal. They come from peer-reviewed studies published in 2023 and 2025 in Genetics in Medicine Open, the Journal of Clinical Medicine, and Children (Basel). They represent people in North Texas and worldwide who lost decades of function because the medical system was not built to see them.
What your gift funds and what it proves
Peer Support Circle — free virtual peer support facilitated by Mark Michalica, LPC, running twice monthly. Outcome measured after every session. 87% of participants report feeling less alone in managing their daily symptoms. 87% leave with at least one strategy they can try. These are not estimates. We measure this every session.
Body of Evidence Survey — IRB-approved patient-reported experience research led by Dr. Colin Halverson, Center for Bioethics, Indiana University School of Medicine. Using REDCap on the Indiana University platform. The findings will hopefully be submitted to the EDS Society's Road to 2027 for the international diagnostic classification update, and will also aim to be published in the American Journal of Medical Genetics in December 2026. Your gift funds the research that turns patient stories into the peer-reviewed record.
ConcertStories — commissioned chamber music and patient-narrative film designed as a clinical empathy intervention for medical education. Impact will be measured with written permission from Thomas Jefferson University. Grounded in published evidence that arts-based empathy interventions produce measurable improvements in clinical empathy scores. Presenting in Dallas, July 2026. This is where music and medicine meet and where the evidence says it matters.
Who we are
Led by Amy Wang-Hiller, a doctoral violinist and DMA candidate at the University of North Texas who became quadriplegic from the neurological complications of hEDS after years of being dismissed. She built InclusiVibe Foundation so others do not have to fight the same fight from scratch.
Our Medical Advisory Board includes specialists in neurosurgery, hypermobility medicine, upper cervical instability, neuroradiology, and bioethics. Our research is IRB-approved. Our programs are measured. Our outcomes are documented.
Every dollar raised on North Texas Giving Day goes directly to the team and the programs serving this community.
Nothing about us without us.
inclusivibe.org — EIN 39-4104319
InclusiVibe Foundation advances diagnostic accuracy and systemic change for individuals with complex neurological and connective tissue conditions, through narrative art, empathy, and advocacy rooted in lived experience that builds the pathways this community has had to fight to find.
InclusiVibe Foundation is in its first year. We are building the infrastructure to serve a community that currently has no dedicated advocacy organization, no established care pathway, and no awareness month until we created one this June.
Our immediate needs:
Operational sustainability: Our team is entirely volunteer. Every dollar supports the tools, platforms, and systems that keep this foundation running, including our CRM, website, e-signature tools, insurance, and communication infrastructure.
Medical Advisory Board formalization: We have confirmed physicians ready to serve and our D&O insurance is in place. Funding supports the administrative infrastructure to formalize agreements, maintain compliance, and sustain the advisory relationships that give this foundation clinical credibility and guide our research and programming.
Patient experience research: Our Body of Evidence Survey, developed in collaboration with Indiana University, will document diagnostic delay and psychiatric misattribution across this patient population. Funding supports instrument development, IRB processes, and REDCap survey infrastructure.
Clinical empathy programming: Our ConcertStories program uses commissioned music and patient narrative to measurably improve provider empathy. Funding supports the pilot development, the Jefferson Scale of Empathy measurement, and the artistic team.
Awareness month expansion: We created a free Proclamation Toolkit that communities across the country are already using. Funding supports continued outreach, community engagement, and the creative campaigns that keep this population visible.
We are small, we are growing, and every dollar goes directly toward building something this community has never had.
InclusiVibe Foundation was founded by a quadriplegic patient who experienced years of diagnostic delay, psychiatric misattribution, and medical dismissal because of the complexity of her conditions. We exist because the healthcare system consistently fails patients whose connective tissue disorders cause serious neurological injury, with research documenting an average diagnostic delay of more than 14 years.
Our community includes people across races, ethnicities, genders, ages, and socioeconomic backgrounds. These conditions do not discriminate, but access to diagnosis and treatment does. Patients with fewer resources, less medical literacy, or less ability to self-advocate face even longer delays and worse outcomes. Our organization is led by a disabled, Asian American, immigrant woman. Our board and volunteer team reflect the diversity of the community we serve. 'Nothing about us without us' is not a slogan. It is how every program is designed, every decision is made, and every voice is centered.
Organization name
Inclusivibe Foundation
Causes
Arts & Humanities
Operating Budget
$100,000 - $249,999
Counties Served
Hunt, Wise, Tarrant, Somervell, Rockwall, Parker, Palo Pinto, Navarro, Montague, Kaufman, Johnson, Hood, Grayson, Fannin, Erath, Ellis, Denton, Dallas, Cooke, Collin
BIPOC Leadership
Executive Director/CEO
Address
3200 W WINDSOR DR APT 2101