Being a patient advocate is a 2 edged sword. I see no cure, no cure, no cure while doing research. But then I see progress, development, compassion and I see faces. The faces behind every phone call, every doctor’s name, every researcher or nurse that we never see. Faces that show up every day to help. Faces of hope.

This newsletter exists because rare disease patients deserve more than vague reassurances. You deserve specific answers, verified resources, and a community that understands the road you're walking.

This week, we're focusing on what matters most: your questions. From vaccination protocols to pediatric care access, from understanding new therapies to finding the right specialist—these are the conversations happening in Central Texas right now.

A few things you'll find inside:

Practical guidance on complement inhibitor therapies and what they mean for your daily life. These medications work, but they require partnership with your care team.

Trial updates for patients exploring options beyond conventional therapy. Clinical research isn't just happening elsewhere—it's happening here, and enrollment is open

Let's get to it.

1. "Do I have to get both MenACWY and MenB before starting ravulizumab?"

Yes, both vaccines are recommended when starting complement inhibitor therapy. Get them at least 2 weeks before your first infusion if possible. If you need to start treatment sooner, talk to your doctor about timing—there are options.

2. "If I spike a fever while on complement therapy, what should I do?"

Fever deserves attention. Know your protocol: which clinic to call first, which ER has your medical records, what symptoms warrant immediate evaluation. Write it down and keep it handy.

3. "Are there pediatric autoimmune neurological trials available?"

Yes, there are several trials open to younger patients. Your child's neurologist can discuss which might be a good fit for their specific condition and needs.

4. "What's the difference between transverse myelitis and other autoimmune conditions?"

Transverse myelitis affects the spinal cord and can appear suddenly. It's distinct from other autoimmune neurological conditions. Proper testing helps guide the right treatment path.

5. "Is long-term medication management really sustainable?"

Absolutely. Many patients manage autoimmune neurological conditions successfully for years with the right treatment plan, support system, and regular monitoring with their care team.

6. "Where do I take my child for pediatric neurology care in Texas?"

Texas Children's Hospital in Houston and UT Southwestern in Dallas both have pediatric neurology programs. One call to their main line gets you to the right department

Complement Inhibitor Therapies: What Patients Need to Know

Recent 2025 data reinforces that complement-blocking medications maintain their effectiveness over time for certain autoimmune neurological conditions. The practical benefit? Dosing schedules that work with your life—fewer clinic visits, more predictability, better quality of life.

The commitment: These medications require ongoing partnerships with your healthcare team. Regular monitoring, vaccination protocols, and communication about any changes in how you're feeling keep everything on track.

Why this matters for Central Texas:

Emerging Therapies for Autoimmune Neurological Conditions

Several trials are currently enrolling patients across Texas. Clinical research helps expand treatment options and gives patients and doctors better tools. If you're not seeing the improvement you'd hoped for with current treatment, your neurologist can discuss whether a trial might be worth exploring.

Key trials include:

Trial ID: ARISE | For patients with CIDP seeking additional options beyond conventional therapy

Trial ID: NCT06180278 | Long-term monitoring study helping researchers understand medication durability and safety

Find more: ClinicalTrials.gov | Your neurologist | Condition-specific foundations

For Pediatric Neurology:

Texas Children's Hospital (Houston)
Phone: 832-824-1000 | Ask for pediatric neurology or your specific condition's clinic

For Adult Autoimmune Neurology:

UT Southwestern Medical Center (Dallas)
Phone: 214-645-8800

For Specialized Neuromuscular Care:

Houston Methodist Neuromuscular & MDA Clinic
Phone: 713-363-7310

For Transportation Support:

Texas NEMT: 877-633-8747 | Regional Ride Services: SafeRide, Modivcare (check your insurance coverage)

On your treatment plan:
"How will we know if this medication is working? What markers or symptoms should I be tracking between visits?"

On long-term management:
"What does my monitoring schedule look like? Are there routine labs or check-ins I should plan for?"

On staying informed:
"Are there any new treatment options or research developments in my condition that we should discuss?"

CIDP (Chronic Inflammatory Demyelinating Polyneuropathy): The most common chronic autoimmune neuropathy. Treatable with modern medications and supportive care. Many patients achieve stable improvement or remission.

Complement inhibitors: A class of medications that help calm overactive immune responses. Used for various autoimmune neurological conditions. Requires partnership with your care team.

Vaccination protocols: Certain vaccines are recommended when starting complement-blocking therapy. Your doctor will discuss timing and which ones matter for your specific treatment.