InclusiVibe Foundation

05/26/2026

Make this Happen with Us: Complex Neuro-Connective Tissue Conditions Awareness Month
📣📣📣 Getting excited about what's coming this JUNE.

We are the most dismissed community. Not just Ehlers-Danlos Syndrome, not just HSD, a rare disease. We have complex neurological conditions, or, as those experts refer to us, the ones with spinal manifestations.

We now have a way to claim and celebrate the month of JUNE following May's Ehlers-Danlos Awareness Month. We can feel more visible. We can choose a month that appropriately addresses the most concerning part of the complex picture.

Read our founder Amy Wang-Hiller's post on InclusiVibe Foundation about why she chose this month to claim our presence, to raise awareness solely for this group of conditions (comorbidities), to gain more attention for the medical world, and to finally start raising our credibility. in the neuro-connective tissue space.

Let us know if you are in together to make this June the first annual Complex Neuro-Connective Tissue Conditions Awareness Month!

05/23/2026

Finally! Session 2 Tomorrow!!

Super grateful for anyone who trusted me and was in the first session! And welcome to anyone who would like to join our session 2 to safely discuss the grief we have been dealing with through our challenging health journey.

Ticket starts 6pm tonight. You can also directly sign up at

Mark and I will see you tomorrow!

May 24, Tomorrow, Sunday, 4pm CST.

05/18/2026

The same hypermobility that made us performers is the same thing. The medical system doesn’t know how to treat.
My name is Amy, and this is why InclusiVibe exists 🔗InclusiVibe.org

04/25/2026

Join the InclusiVibe Peer Support Circle tomorrow, this Sunday, April 26th at 4 PM for a chill space to share, support, and vibe together! Don’t miss out on this uplifting online gathering—spots are filling up fast. Link in bio for more details and to get tickets.

04/22/2026

InclusiVibe Foundation is launching the Peer Support Circle: a virtual series facilitated by Mark Michilica, LPC, , a licensed professional counselor with over 25 years of experience in healthcare and personal experience with diagnostic odysseys.
Three sessions. One community. A space to process grief, belonging, and the weight of living with conditions that took too long to be seen.
→ inclusivibe.org or on Eventbrite : eventbrite.com/e/inclusivibe-peer-support-circle-tickets-1987953149384?keep_tld=true
Sessions will cover:
✦ Advocacy without Exhaustion
✦ Recognition & paresis – naming what’s real
✦ Ambiguous loss – grief without closure
Dates and registration coming soon. Follow us so you don't miss it.
→ inclusivibe.org or on eventbrite

04/01/2026

When we see other countries beginning to move on access to care for complex connective tissue and neurocomplex patients, we pay attention—because it tells us what's possible, and it highlights exactly how far the US still has to go.
Patients here are paying out of pocket for evaluation and treatment that their insurance won't touch. Continuity of care is rarely guaranteed. Awareness of conditions like CCI and AAI remains low enough that patients are routinely framed in psychiatric terms instead—and that framing contaminates the record. It follows them into every subsequent encounter.
Post-fusion, the problem compounds. Ongoing symptoms in EDS patients after surgical intervention are common and documented. When those symptoms aren't connected to prior findings and objective data, the gap in care doesn't just persist. It becomes a patient safety issue. Specialists who can actually help are often out of state and out of reach.
This is the work of InclusiVibe Foundation. If you want to be part of closing this gap, as a volunteer, on a committee, or on our board of directors. We'd love to hear from you. Visit us at inclusivibe.org.

03/16/2026

🎻 Tonight at 7pm ET—free, captioned, and worth your time.
From the Top is hosting a panel on disability, artistry, and the future of classical music. And you can watch live from anywhere.
Panelists are working artists and disability advocates who have actually lived this. The conversation covers career pathways, artistic voice shaped by disability, and what a genuinely inclusive music community looks like.

Free. Captioned. ASL interpreted. No reason not to tune in.
👉 Register for the livestream: https://fromthetop.org/disability-artistry-and-community-forging-a-future/

Shared by InclusiVibe Foundation.

01/20/2026

I need 5 minutes of your time—from patients, caregivers, and allies of our neuro-complex community. 💜
When I founded InclusiVibe Foundation, still more of an Initiative, it was with one goal: to stop the cycle of medical dismissal and create the support we actually need. But we can only be strategic if we know what your most urgent challenges are.
This survey directly shapes our 2026 pilot programs. Your voice is the blueprint.
Who should take this:
✅ Patients (18+) with EDS, CCI, AAI, TCS, or related conditions
✅ Caregivers & Families
✅ Clinicians in this space

🔗https://docs.google.com/forms/d/e/1FAIpQLSeb_2DWib2xLimtvgf1JP3BLRx9qeQlHbEhNJh4loFHYCh3ZQ/viewform

01/08/2026

We need to hear from you—and this time, we're doing it right.
A few weeks ago, we posted a community survey. We pulled it because our privacy protections weren't strong enough for the sensitive information we were asking for.
We went back to the drawing board. Our InsightLab team worked with our bioethics advisor, Dr. Halverson, to rebuild this survey with the security and confidentiality your stories deserve.
What we improved:

Three-file security system that separates your identity from your answers
Safe reporting standards that protect people with rare conditions
Stronger privacy protections throughout

All the details about confidentiality, consent, and how we protect your data are clearly explained on the survey's front page.
The survey takes 3-5 minutes and asks: What are your most urgent challenges? What resources are missing? What would actually help?
Who can participate:
Patients (18+), parents/guardians, caregivers, family members, or clinicians working with EDS, CCI, AAI, TCS, and related conditions.
If you already completed the earlier version: We've added a few program questions. If you have time and energy, we'd appreciate you checking those out—but no pressure.
We're six months old and learning as we go. When we realize we can do better, we stop and fix it.
[Take the Survey] → https://forms.gle/13s6H2uxizwasoFC6

Thank you for trusting us with your experiences.

Drafted by InclusiVibe Foundation InsightLab Team Privacy/consent language reviewed by bioethics advisor, Dr. Halverson Thank You for Participating in Our Community Needs Assessment! Your answers help us prioritize pilot programs. You don’t have to answer all the questions. About us InclusiVibe Fo...

01/06/2026

✨Why InclusiVibe Foundation Exists✨
Five years of stepwise progressive led to the sustained paralysis. Local doctors refusing to coordinate with specialists. Repeated FND misdiagnoses when imaging showed otherwise. Years that can't be given back.
This is our founder's story—and it's the story we hear over and over in the neuro-complex community.
People with hEDS, CCI, AAI, and overlapping conditions are losing function while fighting to be believed. The gap between what patients know is happening in their bodies and what the healthcare system is willing to recognize isn't just frustrating—it's dangerous.
InclusiVibe Foundation exists to bridge that gap.
Read our founder's complete story here: https://inclusivibe.org/voices-narratives/founder-cci-story-to-creativity
If this sounds familiar—if you're fighting for your diagnosis, struggling to find providers who understand, watching your body deteriorate while being dismissed—reach out. Document everything. Advocate fiercely. Find your people.
This community sees you, believes you, and we're fighting alongside you.

A founder’s lived experience with locked-in episodes and medical uncertainty—how adaptive artistry and patient advocacy became InclusiVibe Foundation’s mission.