“When Hope Becomes Measurable”
📍 Central Texas Edition ⏱ Read time: 4 min
Editor’s Note
November’s headlines finally make “hope” a lot closer. Voter’s decided some key issues that may help on our rocky road. But - we still need more involvement, more community and more EDUCATED patients. Being a smarter patient also means a better chance of controlling your own disease. What a novel thought.
To help you get smart: We’ve got oral BTK inhibitors reaching Phase 3, B-cell modulators rewriting MS strategy, and the first gene therapy restoring brain myelin in kids once thought untreatable. If you live in Texas—or love someone who does—this is your month to read closely, circle a few links, and maybe call your neurologist.
🧠 Fast Facts This Week
1. Remibrutinib (RELIEVE Trial – NCT06744920)
The first oral, targeted therapy for generalized myasthenia gravis has entered Phase 3. No infusions, no weekly lab trips—just a capsule aiming to keep symptoms down and quality of life up.
Sponsor: Novartis | Duration: 24 weeks | Sites: ~180 worldwide (Houston & San Antonio in setup)
Why it matters: Patients 18+ who still struggle on standard therapies may finally see an at-home option.
Texas Tie-In: Trial screening begins December at UT Health Houston’s Neuromuscular Center.
2. Obexelimab (MoonStone Study)
Results just dropped showing a 95 % reduction in new MS brain lesions. Instead of wiping out B-cells, this antibody “dials them down” by linking CD19 and FcγRIIb receptors. Think of it as an immune volume knob instead of an off switch.
Self-injected at home → less hospital time.
Potential expansion into CIDP and autoimmune encephalitis trials next year.
If FDA approves, this could reshape how we treat relapsing autoimmune neuro diseases.
3. Canavan Disease Gene Therapy
Dr. Paola Leone’s team at Rowan-Virtua published the first human myelin-restoring gene therapy in Nature Medicine. Children who previously couldn’t lift their heads now track voices and smile on cue. It’s early—but it’s proof that white-matter repair is possible.
Texas Outlook: UT Southwestern and Children’s Health Dallas plan to join the next expansion phase for ultra-rare leukodystrophies.
💬 Top 5 Patient Questions This Week
1️⃣ “How long will diagnosis still take?”
Average delay: 4–5 years. That hasn’t budged because most neurologists see only one rare autoimmune case in a career. Texas needs at least 40 more specialists statewide.
2️⃣ “Can I join these trials?”
Yes—if you meet eligibility and have transportation. Both RELIEVE and MoonStone list Houston and Dallas as pending sites. Ask your doctor to submit a screening referral via ClinicalTrials.gov.
3️⃣ “Could my psychiatric symptoms be autoimmune?”
Possibly. Autoimmune encephalitis can masquerade as depression or psychosis. If behavioral changes appear with neurologic symptoms, request antibody testing for NMDA, LGI1, and GAD65.
4️⃣ “What’s the difference between these B-cell therapies?”
Therapy | Mechanism | Typical Use | Monitoring |
|---|---|---|---|
Rituximab / Ocrevus | Kills B-cells | MS, NMOSD | Blood counts |
Obexelimab | Inhibits B-cell activity | MS phase 2 | Minimal |
Remibrutinib | Blocks BTK signaling | MG phase 3 | Liver enzymes |
5️⃣ “Which online info can I trust?”
Stick to .gov, .edu, and .org domains (NORD, NIH, MDA). Skip cure-claim forums and ask your clinic to confirm trial legitimacy before sign-up.
🏥 Texas Impact Spotlight
UT Southwestern’s Autoimmune Neurology Clinic reports a three-month wait list as awareness spikes statewide.
Texas Children’s Hospital adds bilingual tele-neuro services for South Texas families facing travel barriers.
Community Note: Our own readers have submitted 12 questions about remibrutinib access—proof that local education moves faster than policy.
🧩 Quick Glossary
Term | Meaning |
|---|---|
BTK Inhibitor | Blocks Bruton’s Tyrosine Kinase, a signal pathway that activates B-cells. |
B-cell Modulator | Tones down B-cell function without destroying cells. |
Myasthenia Gravis (MG) | Autoimmune disease causing muscle weakness and fatigue. |
Canavan Disease | Genetic leukodystrophy causing loss of white matter (myelin) in the brain. |
Autoimmune Encephalitis | Inflammation of the brain caused by auto-antibodies; often misdiagnosed as psychiatric illness. |
Phase 3 Trial | Large-scale clinical test comparing a new therapy to placebo for final approval. |
🗓 Coming Up in Texas Rare Neuro News
December 2025: UT Health San Antonio hosts “Rare Autoimmune Day” with GBS/CIDP Foundation chapters.
January 2026: Texas Legislature reviews DPRIT implementation budget ($3 Billion for Brain Health).
Spring 2026: Launch of Rarely Serious Live! — our first hybrid podcast and comedy-for-a-cause night in Austin.
🩵 Bottom Line
This week, hope isn’t abstract —it’s peer-reviewed. Remibrutinib and obexelimab prove that precision immune control is possible without harsh toxicity, and gene therapy for Canavan Disease shows that white matter can heal. For Texas families who’ve spent years searching for answers, the science is finally speaking their language.
Sources: NeurologyLive [1-6], Nature Medicine [7], NORD [30], UT Southwestern data (2025 Q3).
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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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