A primary-source notebook from one patient-advocate.

I have hypermobile Ehlers-Danlos syndrome, MCAS, POTS, and a decade of regenerative-medicine experience as both a patient-advocate and a biotech operator. This site is my notebook.

Lonnie Rae Kurlander

Who I am

I'm Lonnie Rae Kurlander. I'm a biotech entrepreneur, an investor, and a patient-advocate. I have hypermobile Ehlers-Danlos syndrome (hEDS), mast cell activation syndrome (MCAS), postural orthostatic tachycardia syndrome (POTS), and the wider dysautonomia and craniocervical-instability constellation that often travels with them. Most of this site is about what that has actually been like to live in and work out of.

Before any of the medical part, I founded and ran Medal, a clinical-data machine-learning company that was acquired by Ciox (now Datavant) and used by Roche. I built some of the early HIPAA-compliant FHIR APIs in that work and spent years as a voice in health technology. I was the first hire and ran operations and the AI platform at HUMAN Protocol, where I authored the HUMAN AI whitepaper. I studied cell and molecular biology at Vanderbilt (cum laude), then trained at Boston University School of Medicine — where I completed most of the MD curriculum and passed my board exams — while a Dean's Fellow on the MBA track at UC Berkeley's Haas School of Business. I left late in the program to build Medal. I've since been Chief of Staff at The Orthobiologics Institute (TOBI), I consult to Irregular Circumstances, and I founded the slow-fashion brand Aelse. That mix — clinical-data operator, molecular-biology and medical training, and patient-advocate — is the lens I write from.

Disclosure: I'm EVP, Brand at MuseCell Innovations. What I write here is mine — my own opinion, on my own time, at my own site. It is not MuseCell Innovations' position, and I don't use this site to advance its commercial interests. Where my work and what I write here overlap, I say so.

What this site is

A field report. I've tried a lot of the therapies that get discussed in EDS, MCAS, and regenerative-medicine circles — PRP, PRF, PRGF, BMAC, exosomes, peptides, stellate ganglion blocks, PICL for craniocervical instability, neuro-reset protocols, Hoffman Process — and I've read the underlying papers. The posts here pair what I did with the primary literature that explains why it worked, didn't work, or carries risks I think people should know about.

I rebuilt this site in May 2026 to make that intent more honest. The old version was framed as "Stem Cell News" — a news angle I never really fulfilled. This is one person, with rigor, telling the truth about what they've seen.

What this site is not

  • It is not medical advice. It is not a substitute for a physician who knows your body.
  • It is not promotional. Nobody pays me to mention them. Where I name a doctor, a clinic, or a protocol, it is because I have direct experience or have read the published work.
  • It is not a place where I pretend earlier posts were always right. When I learn I was wrong, I say so — visibly, on the original post, at the original URL. See the Reconsidered section.

The rule of the site

Primary sources beat secondary commentary — including mine. If a critique of a therapy hangs on an "expert's" summary of a paper, and that expert hasn't actually read the paper, the critique isn't evidence. It's vibes. That's a mistake I've made publicly and corrected publicly, and the structure of this site is designed to make that kind of correction easy to do and easy to see.

How to use this site

If you're newly diagnosed with EDS or MCAS — start at the EDS hub or MCAS hub. Those are the most useful pages here.

If you're a clinician trying to understand what your patients are actually doing — start with EDS / MCAS for the field reports and Regenerative Medicine for the therapy and dosing detail, or News & Regulation for FDA actions and industry accountability.

If you're considering a specific regenerative therapy — start at Regenerative Medicine.

Get in touch

My consulting practice for individualized patient care lives at lonnierae.com. I read every note that comes through.