The original voice was a nonprofit brochure: “poorly understood,” “disfiguring and disabling,” a live counter of families. Some of that was true. Some of it froze in place. We did not resurrect the 501(c)(3), the donation button, or the registry. Those ended. Randy Wymore’s work at Oklahoma State University is a continuation of the research thread, not of this website.
We kept the human job. People still arrive at 2 a.m. looking for a word that is not “crazy.” They deserve the 2008 CDC symptom list, the 2012 paper as it was written, Cleveland Clinic’s 2026 page, the 2025 call for trials, the 2026 fiber-origin review, and a letter they can print. They do not deserve a secret pathogen shop or a lecture.
Historical images on the history page come from the old public uploads, 2004–2007: the foundation mark, the 2007 registry maps, the brochure cover, a 2005 journal page. We did not turn the later lesion gallery into a homepage.
If you are a clinician or a journalist: the research page is the bibliography. If you are ill: start with symptoms and living with it.