I Questioned My Decision. Then Two Cities Proclaimed Complex Neuro-Connective Tissue Conditions Awareness Month.
This is from our founder, Amy Wang-Hiller’s LinkedIn article:
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.
Right before June, after deciding to announce June as this never-before-claimed awareness month, I questioned my decision. But I knew the one thing to do was to keep the momentum going.
Week 1: We introduced ourselves.
The foundation, the month, the mission. We didn't know what would come back. I shared my parts of the story. I didn't know how it would come back.
Week 2 into Week 3: The responses came.
As we received the documents from our government, and as I received many messages and comments on how people feel after learning that at least two cities have acknowledged the importance of these conditions, as they heard a government speak these conditions' names for the first time, I knew at least we had taken our first step.
This is an awareness month. Many have questioned whether awareness is just the bare minimum. But for us with CCI, AAI, and many other complex neurological conditions, layer by layer trapped in this body, there wasn't even awareness solely for us.
Now we have.
The Ribbon.
💙 Blue — neurological (brain, brainstem, craniocervical junction) 🧡 Orange — spinal cord 💜 Purple — connective tissue and systemic
Which one or which two are you? Or are you living with all three? I am just curious.
Share Our Stories isn't just about awareness.
More and more people are sharing their stories, sharing the lack of access this system left us with. The more people hear us, the closer we get. We can't promise this will directly lead to immediate results. But imagine if it's not 10, but 100, or 1,000, or even more.
Quantity leads to action. When I was the only one representing myself, yelling to the world that no one cares about the paralysis, little action came. But 1,000 screaming for help, while the system doesn't catch it, that would expose the systemic failure. It's not the first time it has happened. It is not the first movement that eventually won their dignity, autonomy, and their lives.
Week 3: Live Proclamation Speech and #PlayForUs.
The livestream happened. June 16, 6:30 PM CT. As the mayor read the proclamation, I felt like one of our community patients feeling the hope for recognition to turn into access one day.
When I announced our campaign for #PlayForUs, so many responses came. The poll results were shocking too. Seeing many artists and musicians adapting, or still on their way to adapting, to this constant psychological change in life. I feel more and more honored that I was able to speak up for us. And I will continue to speak up for us.
From City of Denton, Texas
First annual Complex Neuro-Connective Tissue Conditions Awareness Month. We made history for the spinal manifestations in connective tissue conditions known.
Proclamation from Town of Windsor, Colorado.
First annual Complex Neuro-Connective Tissue Conditions Awareness Month, second proclamation. As it proves to us, as we demand our recognition, since people currently don’t have a good policy to protect them or a good care pathway to stop their progression, more people will hear us. And our hope will be spread.
Week 3 to the end of the month #PlayForUs:
This campaign started from me as a musician, but I am seeing too many like me.
If you are a musician, artist, performer, or creative living with these conditions, or standing beside someone who does, we want to hear you. Record something. Create something. Tag InclusiVibe Foundation foundation 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.
When I asked our community Where are you in your music journey right now,' 76 people responded. 34% said they still play similarly. 34% are adapting. 16% play differently now. And 16% are on pause.
That means two out of three patient musicians in our community have had their ability to create changed by their conditions. That is who #PlayForUs is for.
Tag @inclusivibefoundation on Instagram and use #ComplexNeuroConnectiveTissue #PlayForUs
The poll answers from the Instagram
We have 34% still adapting, 16% on pause, and 16% playing differently from the poll results under this #PlayForUs Reel.
Week 4: Community Listening Sessions, going into July.
We have something more for you, while I actually can't say yet. But it's coming.
the #PlayForUs campaign will continue.
the City of proclamation is open to share with us for your progress.
It's coming. In the end, we know what can help. We know what we need the most. And something so important for us to know: the professionals are behind this. The professionals who want this community to suffer less, to thrive more.
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.
Poll coming. Watch this space.
#ComplexNeuroConnectiveTissue #BrainstemCompression #EDS #CCI #TetheredCord #PlayForUs"
I am blessed and proud of what our very small team has been able to do. My stream of thoughts, something I used to see as a weakness, turned out to be the thing that pushed us to make more progress than we ever thought possible.
