

🌵 Editor's Note
Friends,
100% response rate. Not "some improvement." Not "trending positive." Every. Single. MG patient in the CAR-T trial responded. WOW, I had to triple verify that one. Let’s hope that all carries over to our community. I keep say these are game changers but the truth is we all hope there is a game ending. So be positive and see what the amazing people of medicine are doing for all of us.
Cell therapy isn't cancer-only anymore. The question patients are asking: "How do I know if I qualify?"
📋 This Issue at a Glance
✅ CAR-T hits 100% response in MG—immune reset is real
✅ Cell therapy proven for NMOSD—beyond relapse control
✅ CIDP gets clearer diagnosis standards—faster trial access
✅ Top patient question answered—"Can I get into trials?"
⏱ Read time: 3 minutes

🏆 CAR-T Achieves Perfect Response in Myasthenia Gravis
The headline: KYV-101 CAR-T therapy achieved 100% response rate in phase 2 myasthenia gravis trial. Patients off all other immune drugs by week 12.
The numbers that matter:
Traditional MG response rate: ~65%
KYV-101 CAR-T response rate: 100%
MG-ADL score drop: 8 points (24 weeks)
Time to stop other meds: 12 weeks
Industry verdict: "New efficacy standard"
Why it matters: This isn't symptom management—it's immune system reset. Your body's B cells stop attacking nerve connections, potentially for years.
Texas connection: UT Southwestern, Houston Methodist, and Texas Children's preparing CAR-T infrastructure. Get established at major centers NOW for trial access later.
🎯 Action: Join MG Foundation trial notification list at myasthenia.org

⚡ QUICK HITS
Cell Therapy Hits NMOSD
Mesenchymal stem cells and CAR-T now in NMOSD trials. Early data: fewer relapses, better function in treatment-resistant cases. Could push beyond "relapse control" to true immune reprogramming. UT Southwestern and Houston Methodist run active NMOSD clinics.
CIDP Gets Clearer Definitions
International experts standardizing what counts as CIDP versus mimics. Result: faster correct diagnosis, better trial matching. Plus: VYVGART's ADHERE trial showed 67% improvement, 61% relapse reduction. Europe approved; North America education rolling out.
Trial Eligibility Reality Check
Most CAR-T studies want: ages 18-75, antibody-positive, treatment-resistant, functionally impaired. For CIDP: ongoing relapses despite IVIG/steroids. In stable remission? Probably not eligible yet.
💡 THE QUESTION EVERYONE'S ASKING
"How do I know if I personally qualify for these trials?"
That's the #1 question in webinars, forums, and clinic visits right now.
What patients need to know:
"Treatment-resistant" usually means failed 2+ standard therapies
Age limits real (most trials: 18-75)
Antibody status matters (AChR for MG, AQP4/MOG for NMOSD)
Stable = less likely to qualify than relapsing
Out-of-state trials? Often covered, but verify travel support
Texas reality: Community neurologists often lack current trial info. Major center evaluation usually required for definitive answer.
🔗 Start here: GBS/CIDP Foundation: 1-866-224-3301

👥 PATIENT VOICE
"I asked about CAR-T at every appointment for a year. My neurologist finally connected me with Houston Methodist's research coordinator. Six months post-treatment, I forget I have MG most days. The difference isn't just physical—it's getting your future back." — Houston MG patient, support group share
The pattern: Aggressive advocacy + major center relationships = trial access.

🧬 TEXAS RESOURCE GUIDE
Houston Methodist Neuromuscular Center
Active trials, NMOSD specialty clinic, comprehensive CIDP diagnostics
UT Southwestern Neuromuscular Program
CAR-T infrastructure development, same-week acute appointments
Texas Children's Cell & Gene Therapy
10,000+ patients treated, proven complex therapy infrastructure
Key point: Establish care NOW for trial access when studies open.
📖 QUICK GLOSSARY
CAR-T: Reprograms your immune cells to eliminate autoimmune attackers, then stops—a reset, not lifelong suppression
FcRn Blockers: New CIDP meds reducing harmful antibodies while preserving immune function (VYVGART/efgartigimod)
Refractory: Doesn't respond to standard treatments—main trial qualification

🆕 Introducing: NeuroAIAlly
We're launching NeuroAIAlly—exploring how AI and adaptive technology are changing rare disease research and advocacy, with the same Texas warmth you expect from TNR.
Weekly deep-dives on AI diagnosis tools, using AI for treatment research, automation for advocacy work, and honest talk about what AI can (and can't) do for rare disease families. Written by real humans using adaptive tech daily. No hype, no Silicon Valley nonsense—just practical tools that work.
First issue soon | Subscribe a neuroaiAlly
🎯 YOUR ACTION STEPS
MG patients: Get on CAR-T trial notification lists NOW
NMOSD/CIDP patients: Ask about emerging cell therapy eligibility
Everyone: Establish care at major Texas center for trial access
Share: Forward to Texas families navigating same questions
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