I woke up wearing only 1 sock. Sounds weird right? After waking up in the middle of the night with my little toe on fire (a lot more than normal) I leaned to sleep with socks. Sheet wraps around toe, wrong move and my poor toe rebreaks again. This is number 3 or 4, who counts. Has anyone else gotten in the shower with socks on? (Don't all raise your hands at once.)

We all have our daily problems and challenges. I’m back on the infusion train again after a few months with my fingers crossed (didn’t help). So - finding that sock wasn’t a big deal, but sometimes starting the day one sock at a time is all we can ask for.

While I'm battling with my sock, researchers are fighting for all of us—and winning.

October brings genuine game-changers: Huntington's disease treatment slows progression by 75%, prenatal gene editing could prevent disability before birth, and Olympic athletes are putting CIDP on the global stage. Three Texas-relevant breakthroughs you need to know about.

✅ Huntington's breakthrough – First treatment slows disease by 75%
✅ Patient Advocacy - Michael Klim's CIDP Campaign
✅ Brain gene editing success – Mouse trials open door to human application
✅ Quick Hits - More Neuro News
✅ Glossary

⏱ Read time: 4 minutes

What happened: First treatment to meaningfully slow Huntington's disease progression announced. Gene therapy delivered via 12-18 hour brain surgery shows patients who should decline in one year now take four years—some even returning to work.

Why it matters: After decades of failed attempts, this represents the first therapy that fundamentally alters Huntington's trajectory, not just symptoms. The treatment targets the huntingtin gene mutation directly, with unprecedented results generating cautious optimism across the neurodegenerative disease community.

The science: Unlike previous RNA-lowering approaches that failed, this gene therapy uses a one-time surgical delivery to permanently reduce toxic huntingtin protein production in the brain.

🎯 Action for you: While not yet FDA-approved or widely available, talk to your neurologist about emerging gene therapy options if you have a neurodegenerative condition.

📚 Read more:

Olympic swimmer Michael Klim continues his CIDP advocacy through the Klim Foundation, launching updated patient handbooks and IVIG awareness campaigns. His transparency about living with Chronic Inflammatory Demyelinating Polyneuropathy helps reduce diagnostic delays—currently averaging 18 months from symptom onset.

Why advocacy matters: When diagnosed in 2020, Klim was at the peak of his business career. His public journey has educated thousands about CIDP symptoms: progressive weakness, tingling, loss of reflexes, and fatigue.

Free resources available:

🔗 Connect:

📞 Texas CIDP resources: GBS/CIDP Foundation – 1-866-224-3301

The innovation: Jackson Laboratory corrected alternating hemiplegia mutations directly in living mouse brains with a single injection. The technique extended survival and reduced symptoms, opening the door for human trials in this devastating childhood disorder.

Why it's different: Unlike systemic gene therapy, this approach delivers editing tools directly to the brain, potentially reducing off-target effects and improving efficacy for neurological conditions.

Patient impact: Alternating hemiplegia of childhood (AHC) causes sudden, temporary paralysis on alternating sides of the body, with most children experiencing severe developmental delays. Current treatments only manage symptoms—there's no disease-modifying therapy.

The numbers: AHC affects approximately 1 in 1,000,000 people, with symptoms typically appearing before 18 months of age. Episodes can be triggered by stress, temperature changes, or physical activity.

🔗 Read more: Jackson Laboratory Research

Mitochondrial Disease Victory: Child with mitochondrial encephalopathy walks again after experimental therapy at Cincinnati Children's, offering hope for often-fatal neurodegenerative conditions. Treatment combines enzyme replacement with dietary modifications. Read more

MS Diagnostics Update: ECTRIMS 2025 conference in Copenhagen unveiled updated multiple sclerosis diagnostic criteria, emphasizing precision medicine and individualized treatment approaches. New criteria could reduce diagnostic delays. Conference highlights

Ultra-Rare Milestone: Advocacy for Neuroacanthocytosis Patients marks 25 years building research infrastructure for ultra-rare movement disorder syndromes from the ground up. Foundation has funded 50+ studies worldwide.

Huntington’s Disease: A condition that affects movement and thinking, with new treatments aiming to slow its progress.
Gene Therapy: A treatment approach designed to help the body work better by adjusting how cells operate.
Brain Gene Editing: A promising method researchers are exploring to directly target brain cells to treat neurological conditions.
Alternating Hemiplegia of Childhood (AHC): A rare disorder causing brief episodes of weakness or paralysis on different sides of the body in young children.
Mitochondrial Encephalopathy: A condition related to how cells produce energy, affecting brain function, with hopeful advances in therapy.

October 15-17: NALCN International Conference, San Antonio – Latest research on NALCN-related disorders
November 8: Muscular Dystrophy Association Conference Results Release
November 15: NPH Awareness & Diagnosis Webinar (registration details coming soon)
December 1: Holiday Treatment Planning & Insurance Navigation

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