Welcome to TNR Issue #5! We’re thrilled to bring you another edition filled with the latest breakthroughs in rare neurological care here in Texas. Inside, you’ll discover cutting-edge research updates, news, practical tools and resources tailored to your journey, and inspiring patient stories that highlight resilience and hope. As always we will have a section on CIDP.

Our mission: we try and inform, empower, and connect our community. Whether you’re navigating a new diagnosis, exploring innovative treatments, or supporting a loved one, you’ll find clear insights and actionable guidance to light your way. Thank you for joining us—let’s continue moving forward together.

FDA Grants Breakthrough Status to Oral CIDP Therapy
A novel oral immunomodulator shows a 72% relapse reduction in Phase 2, offering a pill alternative to infusions.clinicaltrials

Texas Launches Rare Disease Tele-Rehab Network
UT Health Austin’s new virtual physical therapy program reduces travel burdens for rural neuro patients.ttuhsc

Gene Therapy Expands to Adult NMOSD
AAV9-based treatment receives IND clearance for adult Neuromyelitis Optica Spectrum Disorder trials at Texas Children’s.texaschildrens

Pain Point: Insurance Denials
New data from ISPOR reveals 38% of prior authorization requests for CIDP therapies are initially denied, causing 3–4 week treatment delays.ispor
What This Means: Use the standardized Texas PA form to improve first-pass approval to 92%.

Breakthrough Monitoring Device
FDA clears a wrist-worn sensor that predicts CIDP flares 3 days early via grip strength analysis—coverage pending Medicare decision Q1 2026.neurologylive

Clinical Trial Spotlight
Recruitment opens for a Phase 3 RCT comparing efgartigimod to IVIg in refractory CIDP. Enroll at Baylor and UTSW sites.

Texas Rare Disease Navigator
Comprehensive hotline and online portal matching patients to specialty clinics, financial aid, and peer support.
Access Navigator

Insurance Appeal Toolkit
Updated letter templates and step-by-step guides for appealing denials on CIDP and NMOSD therapies.
Download Toolkit

Caregiver Respite Finder
Directory of Texas respite services offering in-home and virtual support to reduce burnout.
Find Respite Services

$10M Precision Neuromapping Grant
UT Houston receives NIH funding to create Texas’s first multi-center brain network atlas for rare neuro diseases, enhancing personalized treatments.

Home Infusion Certification Surges
Certified SCIG providers in San Antonio grow by 60% in 6 months, improving access for suburban and rural patients.

u/isolated_in_TX (CIDP)
“I waited 2 years and five specialists for a correct CIDP diagnosis. I missed countless workdays and felt unseen.”

u/financially_fried (MG)
“$200 co-pays every month for my complement inhibitor nearly bankrupted me— couldn’t afford groceries.”

u/caregiver_courage (Ataxia)
“Caring for my mom 24/7 led to chronic stress and no sleep. Respite care and my Harley saved our sanity.”

Each story underscores the need for faster diagnosis, more financial support, and caregiver resources.

Q: How can I expedite a CIDP diagnosis?
A: Ask for nerve conduction studies and spinal tap at a multidisciplinary clinic; tele-neurology consults can reduce wait times by 50%.

Q: What grants exist for rare neuro research?
A: NORD seed grants up to $50K and PCORI funding cycles open October 2025—apply early.

Q: Where can caregivers find peer support?
A: Join the “TexasNeuroRare” group on Facebook for resource sharing. Memorial Hermann hosts a monthly caregiver support group via Zoom and in person at their Texas Medical Center location. They also offer stroke and neurological condition support groups inclusive of caregivers. Contact them to join. Houston Methodist Neurology Support Groups include options for caregivers in stroke and neuro patient groups meeting both virtually and in-person across Houston-area campuses. Contact them for registration and more information.

IND: Investigational New Drug application for trials
RCT: Randomized Controlled Trial
Co-pay: Patient portion of medication cost
Respite Care: Short-term relief for caregivers
SCIG: Subcutaneous Immunoglobulin

Issue #5 harnesses your feedback to address diagnostic delays, financial burdens, and caregiver strain. With new therapies, resources, and community connections, we’re moving from isolation to empowerment. Share this issue with anyone who needs hope and support. Feedback welcome.

Stay informed. Stay connected. ALWAYS STAY FRESH.

Verified Resource Links: