Due to a small decrease in our labor force ( my energy ) look for a weekly post that merges the TexasNeuroRare and NeuroAIALLY ideas into one.

We ended the year on a fast note with all the neuro news and it hasn’t slowed down. So keep your saddle ready and your boots close ‘cause this year is starting out like your dog when it’s bath time, FAST!

This week three Texas families enrolled in trials they didn't know existed until AI flagged them. Meanwhile, two CIDP patients won insurance appeals after 6-month fights.

Yes. CAR‑T for MG is real but still experimental. Three main MG CAR‑T programs (including CABA‑201/rese‑cel in RESET‑MG and KYV‑101 in KYSA‑6) are in early‑phase trials, with broader data expected in 2026. Early results in autoimmune diseases suggest meaningful improvements on scales like MG‑ADL and reduced need for other immunosuppression, but responses vary and long‑term safety is still being studied.​

Texas access:
Use ClinicalTrials.gov to search “myasthenia gravis” + “Texas” and filter for “recruiting” to see CAR‑T and FcRn trials, then confirm site details with your neurologist.

What families really ask:
“How long until we see changes?” In published data, most clinically meaningful MG improvements with novel immunotherapies appear over weeks to a few months, not overnight.

For many Texans, IVIG access is more about insurance advocacy than medical eligibility. The GBS/CIDP Foundation advises: appeal every denial, use their template letters, and involve your neurologist early. If that fails, filing a complaint with the Texas Department of Insurance (TDI, 800‑252‑3439) has helped some families overturn denials after several weeks of follow‑up calls.

Community reports from Texas CIDP patients describe months‑long delays between diagnosis and first IVIG dose, with worsening falls, more assistive devices, and extra ER visits during that time—costly for families and payers. Medicare Part B now offers a permanent home IVIG benefit for certain diagnoses (mainly primary immune deficiency), but coverage for CIDP home infusion and by commercial plans remains inconsistent.

Where to start today:

AI trial‑matching is already live in parts of Texas. Texas Tech University Health Sciences Center partnered with Deep 6 AI to mine electronic health records and match patients to trials in near real time. Deep 6 AI is now part of Tempus, which offers similar matching tools to large health systems and cancer/rare disease networks.

Traditional recruitment leans on manual chart review and word‑of‑mouth, so many eligible patients are simply never found. AI tools continuously scan charts against inclusion/exclusion criteria, flagging potential matches in hours to days instead of weeks. Hospitals report higher match rates and faster enrollment, though exact percentages vary.

Texas takeaway:
If you receive care at a large academic or Texas Medical Center–affiliated site, ask:

Penn State researchers built an AI model called Genetic Progression Score (GPS) that combines genetic data with electronic health records to predict who will progress from early autoimmune markers to full disease in conditions like rheumatoid arthritis and lupus. The model significantly outperforms older risk scores, identifying smaller groups of patients at substantially higher progression risk—potentially enabling earlier monitoring and treatment.

For neuro‑autoimmune conditions (MG, CIDP, NMOSD, stiff person syndrome), GPS‑style tools could eventually help identify high‑risk individuals before major disability, so trials could test prevention or very early intervention strategies. These models are still in the research phase and not yet in routine clinical use in Texas, but major academic centers are watching them closely.

What families ask:
“With a strong family history, can we know who is at risk?”
AI‑based progression tools do not yet offer routine clinical answers, but they point toward a future where “wait until symptoms get bad” is no longer the default strategy.

We are one of the only patient‑driven rare neurological and neuro‑autoimmune newsletters in the state, blending lived experience, Texas‑specific access issues, and emerging tech like AI. The goal is to document what actually happens to Texans—diagnostic delays, insurance fights, trial wins—and translate that into practical questions, not prescriptions, for families and clinicians.​

Key resources for Texans:

Resources:
GBS/CIDP Foundation: 1-866-224-3301
NORD: 1-800-999-NORD
ClinicalTrials.gov: Search by diagnosis + location
Texas Department of Insurance: (800) 252-3439
Myasthenia Gravis Foundation: myasthenia.org

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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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