News & Updates
We do not always know where this work will take us. What we do know is that we will keep showing up, through advocacy, through awareness, and through the slow, necessary work of building systems that actually serve this community.
This is where we document that. The milestones, the hard weeks, the moments that reminded us why we started, and the ones that pushed us to keep going.
What the Community Built: Awareness Month Week 4 Recap
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fourth neurosurgery for severe craniocervical instability, sent us her released recordings and original poetry from her unpublished book “Songs in the Dark” because she was too sick to record anything new. …
I Questioned My Decision. Then Two Cities Proclaimed Complex Neuro-Connective Tissue Conditions Awareness Month.
Amy Wang-Hiller’s piece "I Questioned My Decision — Two Cities, One Proclaimed Tissue" shares a candid reflection on feeling torn between hometown loyalty and new beginnings after moving cities. Through vivid personal anecdotes, she explores the emotional complexity of identity, home, and belonging when both places claim a part of her—capturing the small, bittersweet moments that reveal how migration reshapes attachment and self-understanding.
Why We’re Working to Establish 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.
