What the Community Built: Awareness Month Week 4 Recap

Written By Amy Wang-Hiller

Four weeks ago, InclusiVibe Foundation launched the first Complex Neuro-Connective Tissue Conditions Awareness Month. We did not know what would come back.

Here is what came back:

All the participants in the week 4 campaign, and we couldn’t even fit everyone in for the end of June.

Musicians played. Lou performed guitar from her wheelchair, living with hEDS, cervical instability, and chronic spinal cord injury. She chose a song about fighting together even when you think you might fail. Maddy Hatchett, an Austin singer-songwriter facing her fourth neurosurgery for severe craniocervical instability, sent us her released recordings and original poetry from her unpublished book “Songs in the Dark” because she was too sick to record anything new. Our founder, Amy Wang-Hiller, and pianist and our Artistic Programming, Sharon Niessen, closed the month with Fauré’s Après un Rêve, two musicians with the same diagnosis choosing music over silence.

The #PlayforUs Campaign was literally just posted around the very end of third week.

#CreateForUs

Artists created. A teenage community member living with CCI designed original artwork that turned the concept of medical gaslighting into a visual metaphor. Community members shared drawings, designs, and photographs that documented their daily realities.

These are from the community patients who are also artists and photographers, who are struggling with the complex conditions.

#SpeakForUs

Patients spoke. When we asked our community “where are you in your music journey right now,” 76 people responded. 34% still play similarly. 34% are adapting. 16% play differently now. 16% are on pause. Two out of three patient musicians in our community have had their ability to create changed by their conditions. That is not a statistic anyone had documented before this month.

#StandWithUs

Allies stood. Two government bodies recognized our conditions for the first time. The City of Denton, Texas signed the proclamation on June 16. A community member in Colorado secured the second one the same week. Providers and advocates shared our content and amplified the message.

Can’t wait to see what happens next year!

Meanwhile, we can keep #playforus, #createforus, and continue. Would you like that?

Submit your Consent and Arts with Us
Amy Wang-Hiller

Amy Wang-Hiller is a violinist, educator, and disability advocate whose career was reshaped by her own journey with complex neurological conditions, including craniocervical instability (CCI) and Ehlers-Danlos syndrome (EDS). As Founder and Executive Director of the InclusiVibe Foundation, she transforms lived experience into inclusive concerts, research partnerships, and storytelling that bridge healthcare and the arts. Her work unites disabled artists, medical experts, and communities to advance equity, visibility, and systemic change.

http://inclusivibe.org
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I Questioned My Decision. Then Two Cities Proclaimed Complex Neuro-Connective Tissue Conditions Awareness Month.