Cidpedia Newsletter

ISSUE #18 JULY 29 2025

Author

Richard Aikman
July 29, 2025

🌟 Central Texas Resource
ALWAYS FRESH - Start your week empowered - updates, resources, and encouragement await!

Trusted Information and Community for Patients, Caregivers, and Professionals
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1. Table of Contents

  1. Breaking New Ground: When Hope Meets Science

  2. Research Flash: Game-Changing Developments

  3. Feature: Inside the MOBILIZE & VITALIZE Trials

  4. Innovation: The CAPTIVATE Study

  5. Community: Real Results from 2025 Trials

  6. Advocacy Corner + Reality Check

  7. Resource Hub

  8. Looking Ahead

  9. Disclaimer

Editor’s Note:

We hope you find something useful in our publications. The amount of information increases daily about our unwanted companion. AI use has completely revolutionized research and the future looks better than ever, BUT.

Until they inject me with a cure, I wake everyday with these nasty little questions inside of me as do other people in our community. I say questions because that is the reality of our disease: what? where? why? when????

Keep fighting, keep seeking and don’t stop asking!

Remember the war is not over until our medical teams find the what? where? why? when?

I’m tired of the little nasties.

Ground Up

1. Breaking New Ground: When Hope Meets Science

Dear CIDPedia Community,

Something exciting is happening. After years of slow progress, we’re witnessing an unprecedented surge in CIDP research. It’s not just one big breakthrough—it’s a convergence of scientific advances building real momentum toward better treatments and we hope potential cures.

As someone “clean” from treatment for several months, I watch these changes with gratitude and hope. Our community is stronger than ever, and researchers are investing in our rare disease like never before. This isn’t false hope—it’s evidence-based optimism. Let’s see what’s really happening and what it means for each of us.

2. Research Flash: Three Game-Changing Developments

Riliprubart Trials Show Promise
Sanofi’s riliprubart is demonstrating significant benefits for CIDP patients in ongoing Phase 3 clinical trials (MOBILIZE and VITALIZE). These studies are unique because riliprubart is administered as a weekly subcutaneous injection, which patients can self-administer at home—offering a major convenience advance over traditional IV infusions. The investigational therapy targets the complement system, aiming to halt nerve inflammation more effectively than previous treatments.

CAPTIVATE’s Patient-Friendly Design
The CAPTIVATE trial sets a new ethical standard for CIDP studies. Every participant receives active treatment with DNTH103 from the beginning, and there is no placebo phase. If a patient does not benefit, they can return to their prior care—eliminating prolonged periods on ineffective therapy. This approach values patient safety and time, acknowledging how crucial rapid, effective treatment is in CIDP.

Validation from Real-World Data
Recent analyses confirm that CIDP patients receiving immunoglobulin therapy not only show lower rates of disability progression but also lower opioid use compared to those without treatment. These real-world results highlight that current therapies are having a substantial, positive impact on both disease management and quality of life for many living with CIDP.

3. Inside the MOBILIZE & VITALIZE Trials

MOBILIZE & VITALIZE Trials — Overview and Design

Riliprubart’s Mechanism (Complement Pathway Inhibition)

Dr. Luis Querol’s Remarks on Unmet Needs

Summary:
These sources confirm the purpose, design, and scientific rationale for the MOBILIZE and VITALIZE trials testing riliprubart in CIDP, its novel action on the complement pathway, and Dr. Querol's statements about the unmet need these trials aim to address6134The science behind riliprubart targets the complement pathway, stopping nerve damage at the source rather than only managing symptoms.
Dr. Luis Querol remarks, “Many people do not fully respond to current therapies, showing a significant unmet need.”

4. Innovation Spotlight: CAPTIVATE Study

  • No Placebo Phase: All get treatment from day one.

  • Safety Net: Return to regular care if new treatment isn’t effective.

  • Flexibility: Steroids can continue if helpful.

  • Science: DNTH103 blocks damaging proteins, preserves immune protection, and is an injection every 2 weeks after an IV start.

5. Clinical Trial Navigator

  • MOBILIZE & VITALIZE: Multiple sites, worldwide.

  • CAPTIVATE: Contact your local GBS|CIDP Foundation.

  • TAK-411 Phase 2: At University of Pennsylvania.

Checklist for evaluating a trial:

  • Commitment needed (timeline, visits, side effects)

  • Options to return to current treatment

  • Location/travel needs

  • Consult your neurologist

6. Advocacy Corner

  • $8 million in research funding secured by the GBS|CIDP Foundation.

  • Policy goals: Access to treatments, funding increases, disability rights.

Ways to help:

  • Share your story—it moves policy and research

  • Contact legislators

  • Join local chapters and participate in research

  • Watch for Walk & Roll 2025, Community Days, and Rare Disease Day 2026

    There is hope and then there is the reality of now. We live both.

I’m Here Somewhere

I Have to Find Myself Every Morning

Every morning, I wake up to a world that feels unfamiliar and disorienting. The numbness and tingling in my limbs, caused by CIDP, are a constant reminder of the battle I face every day. But it's not just the physical symptoms that weigh heavily on me; it's the struggle to find myself, to rediscover my identity in the face of a condition that seems to strip away pieces of who I am.

As I sit up in bed, my mind is a fog of confusion. Who am I today? Will I be able to navigate the world with any semblance of confidence, or will the neuropathy dictate my every move? The uncertainty is paralyzing, and I long for the days when I could wake up and know exactly who I was.

The journey to find myself each morning is a lonely one. I know that others with neuropathy face similar struggles, but that knowledge does little to ease the isolation I feel. The anger and frustration at my condition are constant companions, and I often find myself questioning whether I will ever find a sense of normalcy again.

As I move through my day, I realize that my identity isn't something I can find in a single moment. It's a journey, a constant process of rediscovering myself and adapting to the challenges I face. But there is no getting better at this, no triumphant moment where I finally find myself. There is only coping, learning to navigate a world that feels increasingly foreign.

The simple pleasures of life, like cooking a meal or taking a walk, have become daunting tasks that require a level of concentration and effort I never imagined. The loss of these joys has left a void in my life, and I struggle to fill it with a new sense of purpose. There is no happy ending to this story, no moment where I finally find myself. There is only the daily struggle, the constant battle to find meaning and identity in a world that feels increasingly uncertain.

A Lost CIDP Warrior in Texas

 

Dreadful

I Hate Walking

Every morning, I wake up to the daunting reality of facing another day on my feet. The numbness in my legs, feet, hands, and arms, a result of CIDP, turns each step into a battle. I don't just hate walking; I dread it. The lack of spatial coordination makes the world a dangerous place, where every step feels like an adventure I never signed up for.

As I navigate the sidewalk, the uneven pavement looms before me like a minefield. Each crack and bump is a potential trip, and the fear of falling is a constant companion. When someone almost barges into me, my heart races, and I feel the familiar sting of vulnerability. I cling to walls and railings, seeking any semblance of stability in a world that feels increasingly unsteady.

Stairs are a nightmare, a series of perilous steps that threaten to send me tumbling down. I avoid them when I can, but when I must face them, each ascent or descent is a test of my resolve. The beautiful cliff views and rocky paths that once filled me with awe now fill me with dread. The thought of navigating them is enough to make me turn back.

The frustration and anger at my condition are ever-present. I long for the days when I could move freely, without the constant fear of losing my balance. But those days are gone, and each step I take is a reminder of the life I've lost. There is no triumphant walk that erases the fear and frustration. No wake up one day and spring out of bed a new person. There is only the daily struggle, the constant battle against a body that feels like a stranger.

A CIDP Warrior in Houston

Wall to Wall

7. Resource Hub

  • ClinicalTrials.gov—find current studies

  • GBS|CIDP Foundation trial listings

  • Patient navigator support

  • Financial help from PAN Foundation and pharma aid

  • Join virtual meetings, Beacons 2025, regional conference

It’s Growing

8. Looking Ahead

With multiple major Phase 3 trials, patient-centered study designs, real-world validation, and strong advocacy, we’re closer than ever to better treatments and, possibly, a cure. The next two to three years are pivotal—and your involvement drives this effort.

9. Disclaimer.

Be kind to yourself, embrace the imperfections, laugh at the brain fog, and keep moving forward. Thank you for traveling this path together.

Richard Aikman
Editor, CIDPedia
www.cidpedia.net

Want to support CIDPedia? Share, send feedback, or contribute your story—every voice matters.

Let's get something important out in the open: WE ARE NOT DOCTORS and WE ARE NOT GIVING ADVICE!

Everything we share comes from my personal journey living with CIDP, from research and from MY healthcare TEAM. While I've walked this path for a number of years, please remember:

This content is based on personal experience and publicly available information. It is not intended to diagnose, treat, cure, or prevent any disease. Always consult qualified healthcare providers for medical advice, what works for others may not work for you.

Cidpedia is an independent, patient-led newsletter. All information provided is for educational and informational purposes only and is not intended as medical advice, diagnosis, or treatment. We are not medical professionals. Always consult your physician or qualified health provider with any questions regarding your health or medical conditions.

We respect your privacy and adhere to HIPAA guidelines when sharing stories or community contributions. All shared experiences are anonymized unless explicit permission is granted

Stay strong, stay curious, and keep shuffling forward. 🌱

THANK Y’ALL FOR READING!

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