The honest truth is my body is damaged by CIDP. This ain’t the old pickup truck you used to be able to repair by replacing with parts you get from the junk yard or just use some bailing wire. The only way to stop further damage was treatment that I could not start until I was diagnosed. I had to get off my rear end and get diagnosed, after I found a doctor. Then the insurance, then infusion centers or whatever else we go through to just start to STOP any further damage.

Time equals treatment. We can’t afford delays between symptoms, answers and treatment.

Get answers, get educated, get involved.

🕓 Scroll fast. Click faster. Every link leads to help.

Read Time ≈ 4 minutes

A significant breakthrough has emerged for folks battling pheochromocytoma and paraganglioma (PPGL), two rare neuroendocrine tumors that affect roughly 2,000 Americans annually. The FDA approved belzutifan (Welireg) in May 2025 as the first oral therapy for patients aged 12 and older with advanced, unresectable, or metastatic PPGL. Results from the LITESPARK-015 trial, published in the New England Journal of Medicine and presented at the European Society for Medical Oncology Congress in October 2025, showed that 26% of patients experienced tumor shrinkage lasting over 20 months. Remarkably, nearly one-third of patients taking blood pressure medications reduced their dosage by half for at least six months. This HIF-2α inhibitor represents a meaningful advance for patients who previously had no standard treatment options beyond surgery.mdanderson+4​

Read more: https://medicalxpress.com/news/2025-10-trial-results-belzutifan-rare-neuroendocrine.html

Innovation isn’t just on the coasts — it’s in our own labs.

New studies (verified Nov 2025):

📍 ClinicalTrials.gov → “Texas neurological autoimmune”
💸 Most programs reimburse travel and lodging.

Texans with rare neurological diseases take an average of 7 medications daily (UTSW Survey 2025).

Tools to simplify:

🎯 Tip: Ask your neurologist to bundle med refills with infusion appointments to cut travel miles in half.

CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) affects more than 2,000 Texans and often goes undiagnosed for years.

New this fall:

🎯 Action: Ask for a neuromuscular referral if weakness or numbness lasts > 8 weeks.

Brain-driven fatigue is a neurological symptom, not a personality flaw. You have nothing to lose by trying these options.

Proven strategies:

🎯 Try now: 3-3-3 breathing (3 sec in, 3 hold, 3 out) before infusion or rest periods.

Connection lowers hospitalization risk by 25 % (NIH 2024).

🗣 Where to plug in:

Autoimmune Neuropathy: Immune attack on nerves causing weakness and numbness.
CIDP: Chronic Inflammatory Demyelinating Polyneuropathy; treatable immune neuropathy.
FcRn Inhibitor: Drug class lowering harmful IgG antibodies (e.g., efgartigimod).
Neuro-Immune Fatigue: Energy loss caused by inflammation and autonomic disruption.
Tele-Neurology: Virtual neurologist consultation for rural or mobility-limited patients.
UT Southwestern Diagnostic Pathway: Referral system linking PCPs to neuromuscular experts for rare cases.

📧 Stay Connected to us at [email protected] our trusted admin email.

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. Educational only — not medical advice. Verify with your clinician. All data current to November 2025 (verified via UTSW, Baylor, FDA, and NORD).

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