Central Texas Guide to Rare Neuro Updates, Advocacy, and Support

Table of Contents

1. Editor's Note: Needles in my future 🌵

Real talk from someone who's been in the trenches with you—I'm writing this edition while dealing with what I now call "The Weaks." After a “set” of infusions and taking a 4-month break with my fingers crossed, CIDP has decided to remind me exactly who's boss. Arms and legs feeling like they're made of lead? Check. Normal to “ I need to sit down” in moments? Check. Need a pot of coffee to keep going? Double check. I really hate the word relapse, so lets just say I now have a new unwanted guest that drops in uninvited, stays a few hours and then like a bad headache we are glad to see him go.

But here's the thing about our rare disease community—we don't just survive these moments, we learn from them, share them, and somehow find ways to keep moving forward (even when "moving forward" feels like wading through molasses). Every story in this newsletter, every resource we share, every connection we make—it all comes from this real, messy, experience of living with conditions that most folks have never heard of.

So if you're reading this while dealing with your own version of "The Weaks," know that you're not alone. We're all figuring this out together, one infusion, one bad day, one small victory at a time.

Stay strong, Texas.

Texas Voters Hold Key to $3 Billion Brain Research Revolution

November's election offers Texas families a chance to create the world's largest brain health research center. The Dementia Prevention and Research Institute of Texas (DPRIT) awaits voter approval for $3 billion in funding, awarding up to $300 million annually through grants.

With nearly half a million Texans affected by dementia and $4 billion in annual Medicare costs, DPRIT will research all brain diseases—including Parkinson's and rare neurological disorders. Following the success of Texas' Cancer Prevention and Research Institute, which recruited 324 researchers and supported 74 companies, this initiative could revolutionize rare disease research statewide.

🔗 Learn more: Texas Legislature Brain Research Initiative

Texas CIDP Resources & Active Clinical Opportunities

CIDP affects approximately 30,000 Americans with progressive weakness and sensory impairment in arms and legs. Texas offers comprehensive care through UTHealth Houston's McGovern Medical School Neuromuscular Program and multiple active clinical trials. Current opportunities include the ARISE study for newly diagnosed and treatment-experienced patients, riliprubart Phase 3 trials (MOBILIZE/VITALIZE) testing immune system blockers, and NVG-2089 Phase 2 for treatment-refractory cases. Early treatment is crucial, with up to 4 in 5 people responding well to therapy. Texas GBS/CIDP Foundation chapters provide ongoing support statewide.

🔗 Key Resources:

CIDP Trial Enrollment Opportunities

Multiple breakthrough CIDP trials actively recruit across Texas, offering alternatives to traditional treatments. All qualifying participants receive study-required medical care at no cost, with travel expense compensation available.

Current Texas Trials:

🔗 Find trials: GBS/CIDP Foundation Clinical Trials

New Texas Patient Support Programs

UT Southwestern earned designation as the North Texas Alzheimer's Disease Research Center with $23 million in five-year funding. This creates opportunities for patients with various neurodegenerative conditions through research participation, virtual support groups, and travel assistance programs.

🔗 Info: UT Southwestern Alzheimer's Center

$5M UT Southwestern Cerebellar Research Breakthrough

Dallas researchers received up to $5 million from the Raynor Cerebellum Project to develop neuromodulation therapies for cerebellar disorders. The goal: implantable therapy allowing patients to "live their lives rather than keep coming back for repeated treatments."

🔗 Details: UT Southwestern Cerebellar Research

Building Networks Across Rural Texas

Texas rare disease innovation spans from major cities to rural communities. The upcoming DPRIT election gives every Texan a voice in advancing brain health research. Whether in Houston or small-town Texas, your vote could accelerate treatments for rare neurological diseases affecting thousands of families statewide.