Hey Texas Neuro family,

I'm typing this with the help of Spike and Buzz—my constant companions who don't care if my hands are cooperating today or not. That familiar tingling reminded me that this body and I are still negotiating terms. But I wanted to get this to you because what I'm about to share matters.

I don't use the word "cure" lightly. None of us do. We've had our hopes up and seen headlines too many times. But neighbor, something real is happening. Over 100 clinical trials are now testing CAR-T therapy for autoimmune neurological diseases like ours. Early patients—people who'd tried everything—are stopping all medications and staying in remission.

I'm not selling hope. I'm reporting a little of it. And there's a difference. BUT don’t sell your all your horses and buy a tractor yet. This may take awhile.

Stay fierce, y'all. We're in this foxhole together.

✅ CAR-T trials multiplying – 100+ active trials, autoimmune neurological diseases on the list
✅ Early results are real – Some patients achieving drug-free remission (not hype—published data)
✅ Your phone could be a diagnostic tool – Stanford's OpenCap validated for tracking our kind of disease
✅ Texas centers are enrolling – You don't have to fly to Boston

⏱ Read time: 4 minutes

Let me cut through the jargon: CAR-T takes your own immune cells, retrains them to hunt down the rogue B cells causing your disease, and puts them back. One treatment. The goal isn't managing symptoms forever—it's resetting the whole system.

What's actually happening (not someday—now):

Phase 2 trials are running at over 40 U.S. centers. Early patients with lupus and myositis—autoimmune diseases that work like ours—stopped all their other medications and stayed in remission. Researchers are calling it an "immunological reset." The B cells grow back, but they grow back healthy.

Kyverna's stiff person syndrome trial expects results early 2026. If it works, FDA filing that same year—first CAR-T for autoimmune disease to reach market.

Here's the part that matters to us: CIDP is explicitly listed as a target indication. The immune mechanism is identical to conditions already showing results. We're not waiting for someone to notice us—we're already on the list.

Real timeline: First autoimmune neurology approvals likely 2026-2027. CIDP-specific trials expanding through 2027.

📚 DO YOUR OWN HOMEWORK:

🎯 WHAT TO DO: At your next neurology appointment, ask: "Am I a candidate for CAR-T trials?" Register with UT Health Houston or UT Southwestern to get called when spots open. Don't wait for them to find you.

Here's something that made me sit up straight: Stanford researchers proved that two smartphone cameras can track our disease progression better than the timed walking tests our neurologists have used for decades.

Why this matters to us: The standard test times how fast you walk 10 meters. That's it. But it misses how you're walking—the shuffle, the ankle that's dropping, the hip compensation you didn't even notice starting.

Stanford's tool (called OpenCap) creates a 3D model from phone video. It caught disease-specific patterns that stopwatches completely missed. In their study, video analysis correctly identified which neuromuscular disease patients had 82% of the time. Stopwatches? Basically a coin flip at 50%.

Where this is heading: Within a couple years, you might record a short video at home, upload it, and your neurologist gets alerted to subtle changes before your next appointment. No more "see you in 3 months and hope nothing gets worse."

📚 SEE FOR YOURSELF:

🎯 WHAT TO DO: Bookmark opencap.ai. Ask your specialist if they're using it or researching it. Early adopters get access first.

"The doctors say 'watch for changes.' Honey, I've been watching for six years. I can tell you which sock he puts on first when his hands are good versus bad. They finally made an app that notices what I've been noticing all along."
— Margaret, Austin

Texas Centers of Excellence:

Your People (Support & Advocacy):

Find Trials:

When Insurance Says No:

NeuroAI-Ally (Thursdays): For healthcare workers—AI tools transforming EMG interpretation and neuromuscular diagnosis. www.neuroaially.org

RarelySerious (Fridays): Because if we can't laugh at the absurdity sometimes, what are we doing? This week: "Things My Insurance Company Thinks Are Reasonable." [Subscribe for medically inappropriate humor] www.rarelyserious.com

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MEDICAL DISCLAIMER: This newsletter provides educational information reviewed by our medical advisory board. Content is not intended as medical advice. Always consult your healthcare provider before making treatment decisions. Clinical trial information is provided for educational purposes - eligibility and enrollment should be discussed with qualified medical professionals.

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