June 2026
first annual
Complex Neuro-Connective Tissue
Condition Awareness Month
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For people navigating complex neurological, spinal, connective tissue, and multisystem conditions.
InclusiVibe Foundation | inclusivibe.org
The Why
June already recognizes brain health, migraine, and scoliosis awareness. But there is nothing for patients living at the intersection of connective tissue disorders and serious neurological injury.
No awareness month for brainstem compression. No awareness month for craniocervical instability. No awareness month for the Tethered Spinal Cord. No awareness month for the patients who are told for an average of 14 years that it's just a headache, just anxiety, just in their head.
Complex Neuro-Connective Tissue Conditions Awareness Month was created for this community. For the conditions that cross specialties, fall between diagnostic categories, and leave patients navigating fragmented systems of care alone.
InclusiVibe Foundation submitted its first proclamation request to the Denton County Commissioners Court and the City of Denton, Texas. We want every city and county to follow.
FROM OUR FOUNDER
To the Bottom of this Campaign Page
Week 1 Toolkit: Be the Next City for Our Awareness Month
WHO THAT IS FOR
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 coexist with connective tissue disorders, including Ehlers-Danlos Syndromes, Hypermobility Spectrum Disorders, Marfan Syndrome, and Loeys-Dietz Syndrome.
THE HOW
You can bring this to your community. We built a free Proclamation Toolkit with everything you need: ready-to-submit proclamation language (short version and detailed version), step-by-step instructions, a phone script, and an email template.
⇣ Fill out the Form to Download the Proclamation Toolkit ⇣
When your proclamation is signed, take a photo. Tag @inclusivibefoundation and use #ComplexNeuroConnectiveTissue.
Week 2: Learn our RIBBON and Share your Story
THE 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.
Share Your Stories
Learn about our founder’s story and our community stories.
Share yours.
Your story matters. It is not awareness.
It is our way to influence the policy
Week 3: Live Proclamation Speech & #PlayForUs
Share your Music, Share your Art
Join the Live with us for the First Proclamation Signing
June 16th, 6:30 PM Join the Live Stream
Join the #PlayForUs Campaign on Social Media
If you are an artist, musician, performer, or creative living with these conditions, or standing beside someone who does, we want to hear you. Record a performance.
Create a piece.
Share your talent.
Tag @inclusivibefoundation on Instagram and use #ComplexNeuroConnectiveTissue #PlayForUs
Musician, Artist, Performer, Creatives,
We play for each other. We create for each other. We lift each other up. We see each other.
Week 4 - Community Listening Session
Before we build the next thing, we want to hear from you.
What does this community need that nobody is building? What has your doctor never asked you? What would change everything if someone finally got it right?
One question. One hour. Your answers shape what InclusiVibe builds next.
This is not a Q&A. This is not a panel. This is us listening.
Questions Pending: Poll Available
Finally, We Would Kindly Ask You to:
SUPPORT THE MOVEMENT, SUPPORT THE MISSION
We are running on pure passion and a very small team. Your support is what turns this into something that lasts.
Your donation supports the infrastructure behind this movement, from the awareness month outreach you're seeing right now, to finalizing our Medical Advisory Board of physicians who specialize in these conditions, to the patient experience research and clinical empathy programming we're building for launch.
Every dollar goes toward making this foundation strong enough to deliver what this community has never had.
FROM OUR FOUNDER
#ComplexNeuroConnectiveTissue #BrainstemCompression #EDS #CCI #TetheredCordarfan Syndrome, and Loeys-Dietz Syndrome.
When I first shared what our nonprofit was about and whom we serve, someone commented that conditions like cancer would always get more attention than communities like ours.
I kept thinking about that. And I kept working.
June already recognizes Alzheimer's and Brain Awareness, Migraine and Headache Awareness, and Scoliosis Awareness. But there is nothing for patients whose conditions fall at the intersection of connective tissue disorders and serious neurological injury – conditions like craniocervical instability (CCI), atlantoaxial instability (AAI), brainstem compression, and tethered spinal cord.
When left undiagnosed, these conditions can progress to severe and irreversible neurological injury. I know this firsthand – I became quadriplegic after years of delayed diagnosis. That is why I founded InclusiVibe Foundation.
Research documents an average diagnostic delay of more than 14 years for individuals with rare and complex 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 & 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).
Patients with brainstem compression may be told they have refractory migraine without investigation for structural causes. Patients with tethered cord may be told it's just scoliosis without imaging that would reveal the tethering. Patients with autonomic dysfunction may be labeled with anxiety without testing for conditions like POTS. Meanwhile, the surgeries they need – craniocervical fusion and decompression – are classified as experimental by insurance. For many of these patients, there is no established care pathway.
"Complex Neuro-Connective Tissue Conditions" is an advocacy and awareness term we use at InclusiVibe Foundation to describe overlapping neurological, connective tissue, autonomic, spinal, and multisystem conditions that significantly affect daily functioning, mobility, and access to care. It is not a formal medical diagnosis or clinical classification. We created it because nothing else names what this population actually lives with.
We recently submitted a proclamation request to the Denton County Commissioners Court in Texas to designate June 2026 as Complex Neuro-Connective Tissue Conditions Awareness Month. And we built a free Proclamation Toolkit so that anyone – in any city, county, or country – can bring this to their own local government.
See content credentials
LOCAL ACTION. NATIONAL IMPACT. CALL YOUR LOCAL CITY, COUNTY, AND COMMISSIONERS COURT. WE OFFER YOU A FREE PROCLAMATION TOOLKIT WITH STEP-BY-STEP INSTRUCTIONS.
—-Excerpts from our founder’s Linkedin
June 2026
Complex Neuro-Connective Tissue
Condition Awareness Month
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It's finally the time for our specific population to be acknowledged and understood.
Share your story and lived experience to raise awareness.
The hashtags
InclusiVibe Foundation | inclusivibe.org
More details on weekly events and activities for June. We will update on this page. Stay in tune.