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fourth neurosurgery for severe craniocervical instability, sent us her released recordings and original poetry from her unpublished book “Songs in the Dark” because she was too sick to record anything new. …