🌵 Editor's Note
Friends and neighbors,
Today might be the day we look back on as the turning point for myasthenia gravis treatment.
NeurologyLive just published the most comprehensive analysis yet of CAR-T therapy for MG—and the results across multiple trials are undeniable. We're not talking about modest improvements or temporary relief. We're talking about people eliminating their reliance on IVIg infusions entirely. We're talking about benefits lasting nine months and counting.
Meanwhile, MS researchers announced they can detect the disease in blood tests 10 years before symptoms appear. Think about that. A decade of prevention instead of a decade of damage.
As I write this with my usual neuropathy companions (Buzz and Spike) I'm struck by how fast some things are moving. CAR-T for stiff person syndrome just worked. Early MS detection is here. The national MG registry is enrolling patients right now.
This is a win for all of us in the rare neuro community.
This isn't "someday" science anymore. It's happening today, and Texas families need to know about it.
🚨 National MG Registry Launches TODAY + CAR-T Breaking News
📋 QUICK READ
✅ National MG Registry enrolls first patient - Your data could drive new treatments
✅ CAR-T trials showing zero neurotoxicity - Safer than expected for autoimmune diseases
✅ MIT expands rare brain disorder research - Alexander disease now in CAR-T pipeline
✅ Texas patients can enroll now - How to participate
⏱ Read time: 2 minutes
🎯 TOP STORY: National MG Registry Launches
What happened: Thermo Fisher launched the CorEvitas Myasthenia Gravis Registry on November 10, 2025—enrolling its first patient this week.
Why it matters: Until now, MG research relied on clinical trials (controlled environments). This registry captures how MG actually behaves in real life across diverse patients.
What it tracks:
Disease progression patterns
Medication effectiveness in real-world use
Safety issues with new and existing therapies
Which treatments work for which patients
Led by: Dr. James F. Howard Jr. (UNC Chapel Hill) and Dr. Michael Benatar (University of Miami)
🎯 Your action: Ask your Texas neurologist about enrolling. HIPAA-compliant, anonymized data, surveys twice yearly.
Sources:
https://www.ppd.com/news-item/thermo-fisher-scientific-launches-corevitas-clinical-registry-in-myasthenia-gravis-a-rare-autoimmune-disorder/
https://www.mgregistry.org
⚡ CAR-T UPDATE: Better Than Expected
Breaking data: CAR-T trials for myasthenia gravis (YTB323, KYV-101) showing dramatic results:
14-point improvement in MG scores by week 12
Benefits lasting 5+ months
Zero dose-limiting toxicities
No cytokine release syndrome
No neurotoxicity
The surprise: Cancer patients getting CAR-T experience neurotoxicity in 10-40% of cases. Autoimmune disease patients? Lower rates, possibly because no tumor burden or heavy chemo.
Who's eligible:
Patients with refractory MG
Those who failed conventional treatments
Even patients with other autoimmune conditions now being considered
Texas connection: Dr. Howard at UNC is leading YTB323 enrollment—talk to your neurologist about referral.
🧬 MIT EXPANDS RARE DISEASE CAR-T
New: Dr. Ana Amor Vegas's lab investigating CAR-T for Alexander disease—a rare fatal brain disorder affecting white matter.
The model shift: Academic centers developing gene therapies and CAR-T for ultra-rare conditions, then licensing to biotech companies. MIT's Phelan-McDermid syndrome gene therapy already licensed to Jaguar Gene Therapy and in trials.
Why this matters: Pharmaceutical companies won't invest in diseases affecting dozens of patients. Universities are filling the gap.
Sources:
https://www.cshl.edu/her-science-could-help-you-live-healthier-longer/
https://news.mit.edu/2025/new-mit-initiative-seeks-transform-rare-brain-disorders-research-1014
🔬 CHINA: MS BREAKTHROUGH
Chinese researchers identified T0080—a compound targeting FPR1 that significantly reduces brain inflammation and slows neurodegeneration in MS models.
Why it matters: Current MS treatments manage symptoms but struggle to stop brain damage. T0080 may offer disease modification.
🎯 WHAT TO DO THIS WEEK
If you have MG:
Ask your neurologist about registry enrollment (CorEvitas or MGFA Global)
If treatments aren't working, ask about CAR-T trial eligibility
Join online MG communities to hear patient experiences
Texas specialists:
UT Southwestern Autoimmune Neurology Clinic
Texas Children's Hospital (Houston)
UTHealth Houston
📖 GLOSSARY
Registry: Database collecting real-world patient data to improve treatments
CAR-T: Modified immune cells that target specific disease-causing cells
Neurotoxicity: Brain/nerve damage from treatment
Cytokine Release Syndrome: Severe immune overreaction to therapy
⚠️ Disclaimer
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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