Beyond the Agenda: The Heart of the GBS/CIDP Symposium 2025 Experience

A Gathering That Went Beyond Research

When Marcia and I arrived in Denver, Colorado for the GBS CIDP Symposium 2025, we thought we knew what to expect. After all, this wasn’t our first time, and we had an idea of the rhythm: the research updates, the networking, the occasional wave of overwhelm that comes from so much information packed into a few days. But this time felt different. Right from the opening session, it was clear the gathering wasn’t only about science. It was about connection, courage, and community.

From September 11–13, the hotel halls were alive with a unique kind of energy. Patients using wheelchairs rolled alongside neurologists in suits. Caregivers swapped stories over coffee while researchers scribbled notes nearby. Families who had never crossed paths before became friends in minutes. That mix of vulnerability and strength is hard to describe. It felt part reunion, part lifeline, and part rally cry for the future.

Seeing familiar faces from the last symposium made the hugs longer and the conversations more real. New attendees, the ones who nervously whispered, “This is my first time here” reminded me how much courage it takes to simply show up. Marcia and I still remember how that felt, and it was moving to watch them realize, as we once did, that they’re not alone in this journey.

Of course, science and research matter. This year brought updates on clinical trials listed on gbs-cidp.org, plus the introduction of the Interdisciplinary Health Committee (IHC), a powerful step toward bridging gaps between care and research. But if I’m honest, what stuck with me most wasn’t in the slides or the handouts. It was in the voices. A mother sharing how caregiving had both broken and strengthened her. A young man in remission reminding us that recovery, while slow, is possible. A caregiver sharing a table with Marcia and I saying, “I thought I was alone until today.” Those words hit deeper than any medical chart could.

If you couldn’t attend this year, my promise is to take you inside. I’ll share the highlights, the breakthroughs, and the deeply human moments that remind us why this work matters. Because the heart of the GBS/CIDP Symposium isn’t just what happens on stage, it’s the courage we carry home.

What Is the GBS CIDP Symposium 2025?

The GBS/CIDP Symposium isn’t just another medical conference, it’s a lifeline. Hosted by the GBS/CIDP Foundation International, the event brings together people from every corner of the rare neuromuscular world: patients, caregivers, neurologists, researchers, advocates, and even policy voices. It’s the one place where science meets human stories, and where the future of care feels like it’s being written in real time.

For those who don’t know, the Foundation has been leading the charge in advocacy and support for Guillain-Barré syndrome (GBS), chronic inflammatory demyelinating polyneuropathy (CIDP), and related conditions for decades. They connect patients to resources, fund research, and fight for global awareness. But the Symposium? That’s where everything comes alive. Instead of reading about progress in a newsletter, you sit in a room where breakthroughs are announced and where you can literally shake hands with the people shaping the future of treatment.

This year felt especially significant. Walking into the Denver hotel, you could feel the momentum. More countries were represented than we’d seen before, giving it a global spirit that reminded us we’re part of something much bigger than our own stories. Advocacy has never been louder, and the research pipeline has never looked stronger. Clinical trials were a huge focus, and resources like gbs-cidp.org gave attendees practical ways to get involved. For the first time, Marcia and I had conversations with researchers who were eager to hear from us and not just as case studies, but as real people whose experiences could shape the way studies are designed.

A highlight that stood out was the introduction of the Interdisciplinary Health Committee (IHC). It might sound like just another acronym, but talking with the members, I realized how groundbreaking it is. Instead of doctors, therapists, and specialists working in their own silos, the IHC is designed to bring everyone together to collaborate across disciplines, so patients get care that actually feels coordinated and actionable. As someone living this journey, I can tell you that’s huge.

And then, of course, there’s the crowd itself. It’s hard to explain what it’s like to look around a ballroom and see wheelchairs, canes, caregivers clutching notebooks, and doctors flipping through research notes all in the same space. People who might never cross paths in “real life” are suddenly sitting side by side, listening, learning, and connecting. That’s the magic of the Symposium. It’s not just about what you learn, but who you meet, and how those connections fuel both hope and action.

For Marcia and me, coming back for our second Symposium felt like rejoining a family; one that’s grown stronger, louder, and more determined since the last time we gathered. And as the sessions unfolded, it became clear: 2025 wasn’t just another year. It was a turning point.

Beyond the Science — The Power of Shared Stories

If science was the backbone of the Symposium, the stories were the heartbeat. Honestly, this is the part that still lingers with me long after flying out of Denver. You can read research updates online. You can catch a webinar about treatments. But sitting in a room where patients and caregivers stand up, voices trembling yet strong, to share their lived experiences? That’s something you can’t download.

Marcia and I both found ourselves holding back tears more than once. One GBS patient talked about the isolation and the endless appointments, the sleepless nights, the anger, the silent moments where she wondered if she was enough. When she finished, the entire room erupted in applause. Not the polite kind, but the long, loud, we see you kind. That kind of moment reminds you why community matters.

Then there were the stories of setbacks, of relapses, of terrifying hospital stays. But also stories of resilience. A CIDP patient shared how he had gone from being unable to walk, to slowly planning out his son’s future “when he was gone”, to step by step regaining his independence. He joked about how his cane had become more of a “conversation starter” than a limitation. The laughter in the room wasn’t just humor; it was relief, it was recognition.

What struck me most was how the storytelling bridged the gap between families and professionals. Doctors and researchers sat in the audience, listening, really listening, to what daily life looks like with GBS or CIDP. The fatigue that lingers, the way treatments interrupt routines, the toll it takes not just on the body but on marriages, parenting, and mental health. I could see neurologists scribbling notes as patients described challenges that don’t always show up in lab results.

For Marcia, the caregiver conversations were especially moving. At one point I could almost read her mind, “They’re saying the things I’ve felt but never said out loud.” That kind of validation is priceless. Sometimes science alone can’t capture the courage it takes just to get through a Tuesday. But these stories? They made the invisible visible.

By Sunday, I realized the Symposium wasn’t just about breakthroughs in medicine; it was about breakthroughs in understanding. And those came, not from charts or data, but from voices. Real voices. Voices that made us laugh, cry, and most importantly, feel less alone.

Breakthroughs That Matter to Patients and Families

Science can feel overwhelming at times, but at the Symposium, the research didn’t stay locked in complicated charts or medical jargon. Some of it was brought down to earth and made real for people like me, Marcia, and every family sitting in that Denver ballroom. And that’s exactly what made the breakthroughs so powerful: they weren’t just numbers. They were lifelines.

One of the biggest themes this year was clinical trials. Presenters pointed us toward resources like gbs-cidp.org, showing how patients and caregivers could actually get involved instead of just hearing about progress from the sidelines. I’ll admit, in the past I used to think clinical trials were something “other people” did. Too complicated, too risky, maybe even out of reach. But participating in a few myself and hearing directly from others who had participated changed that. They spoke about feeling like they were contributing to something bigger than themselves and honestly, that’s exactly how I feel too. Knowing that ordinary people in our community are helping to unlock the treatments of tomorrow gave me goosebumps.

Another breakthrough moment was the introduction of the Interdisciplinary Health Committee (IHC). The more I talked with the members the more I realized just how much of a game changer it is. Too often, care for GBS and CIDP feels fragmented. You see a neurologist one week, a physical therapist another, maybe a pain specialist down the line, and they don’t always talk to each other. The IHC is designed to change that. By bringing all those voices to the same table, patients get more coordinated and functional care, and honestly, less of the emotional whiplash that comes from feeling like you’re repeating your story over and over again.

What I loved was how speakers didn’t just present the science, but they explained what it meant for daily life. Instead of rattling off antibody names or data points, they connected the dots: fewer hospital stays, more independence, better quality of life. One researcher said something I scribbled in my notes: “If the science doesn’t reach the kitchen table, it’s not enough.” That line stuck with me. Because really, that’s what all of this is about: making sure families can cook dinner, get to school, walk the dog, or just have a normal Saturday again.

Walking out of those sessions, Marcia and I both felt something we don’t always feel when it comes to GBS and CIDP: hope. Not vague, distant hope, but grounded, tangible hope. Hope that treatments are evolving. Hope that patients and caregivers are finally being heard. Hope that the future doesn’t have to look like the past. And that hope is worth holding onto.

Connection, Courage, and Community in Action

If there was one theme that echoed through every hallway, it was this: we are stronger together. The science was inspiring, yes, but the way people connected outside of the sessions was just as important, maybe even more so.

Marcia and I sat at a table full of caregivers on the second day, and honestly, it was one of the most moving experiences of the whole Symposium. Caregivers spoke with raw honesty about exhaustion, about guilt, about the invisible weight they carry every day. One woman admitted she sometimes cries in the car before walking back into the house, just to let the stress out where no one can see. Another talked about missing the version of herself she used to be before caregiving took over. You could hear a pin drop at that table. And then, one by one, people nodded, leaned in, and whispered, “Me too.” That simple phrase was like oxygen.

For first-time attendees, the networking sessions were eye-opening. I remember seeing a GBS patient from my local chapter standing off to the side on the first evening, looking overwhelmed and unsure where to start. By the end of the weekend, she was laughing at lunch with a table full of new friends. That’s what happens when you find people who “get it.” You don’t have to explain every detail. They just understand.

The support groups had a similar power. In one circle, patients shared tips that only come from lived experience on how to manage fatigue at work, which mobility aids actually hold up, even hacks for dealing with airport travel. These weren’t things you’d find in a medical journal. They were the kind of hard-won lessons only someone who’s lived it can pass along. For Marcia and me, those conversations were like filling our toolbox not just with information, but with encouragement.

Something else that stood out a lot this year was the global spirit. Attendees came from all over Europe, Asia, South America and each voice added something unique. Hearing a caregiver from another country describe the exact same struggles we face here in the U.S. was both heartbreaking and unifying. It reminded me that while healthcare systems differ, the human experience of GBS and CIDP connects us across borders.

In every corner of the Symposium, there was courage in action. Courage in telling the hard stories. Courage in asking the scary questions. Courage in showing up at all, even when bodies and spirits were tired. And together, that courage built something bigger than any one of us: community.

What the Symposium Means for the Future of GBS and CIDP

One of the things I’ve learned after attending two symposiums is that these gatherings don’t just reflect where we are now, they point to where we’re headed. 2025 feels like a turning point. Not just in research, but in the way the community is taking ownership of its future.

For years, progress in GBS and CIDP has been measured mainly in clinical breakthroughs; new therapies, better diagnostics, refined treatment protocols. And those remain crucial. But this Symposium showed that the future is also about who gets a seat at the table. More and more, patients and caregivers aren’t just passive participants in research. We’re being asked to shape it. Researchers openly invited feedback on trial design, daily-life challenges, and outcomes that actually matter beyond the clinic. That shift from “studying patients” to “partnering with patients” is huge.

Caregivers too, are stepping into a stronger role. The caregiver networks that blossomed at this year’s event felt like the beginnings of something bigger. It wasn’t just support groups anymore; it was strategy. People were talking about organizing resources, pushing for better mental health services, and making sure caregiver voices are heard in advocacy efforts. Marcia told me afterward that for the first time, she felt like caregivers weren’t just “support staff” in this story; they were leaders. And I couldn’t agree more.

On a larger scale, the advocacy momentum is undeniable. Sessions focused on policy, insurance battles, and access to care weren’t just informational but rather calls to action. Patients and families shared how grassroots efforts had already moved the needle in their communities. And with international voices joining in, there’s a real sense that this isn’t just a U.S. movement. It’s global. That global reach means more visibility, more funding, and ultimately, faster change.

To me, the biggest takeaway about the future is this: conferences like the GBS/CIDP Symposium are no longer just updates on what’s been done. They’re launchpads for what comes next. They remind us that every story shared, every trial joined, every caregiver network built pushes the movement forward.

Flying out of Denver, I didn’t just feel informed. I felt empowered. The future of GBS and CIDP isn’t something happening “out there” in labs or policy offices. It’s happening here, in this community, with us. And that realization makes me believe the next few years could change everything.

Carrying the Heart of the Symposium Forward

When Marcia and I boarded the plane home from Denver, our suitcases were heavier with pamphlets, notes, and maybe even a few too many free pens. But what we carried in our hearts mattered more. The GBS/CIDP Symposium wasn’t just a three-day event; it was a reminder that none of us are walking this road alone.

For those who couldn’t attend, here’s what I want you to know: the breakthroughs were real, the stories were powerful, and the connections were life changing. Clinical trials and the new Interdisciplinary Health Committee (IHC) gave us hope that treatment and care will keep improving. Caregiver conversations reminded us that unseen struggles deserve a voice, and global collaboration showed that our community stretches far beyond borders. More than anything, though, the Symposium proved that courage and connection can move mountains.

But the real work starts now, in the quiet after the conference buzz fades. Staying connected with the GBS/CIDP Foundation International isn’t just a nice idea, it's how we keep the momentum alive. Whether it’s signing up for newsletters, joining a local chapter, or volunteering your time, each step strengthens this community. And if nothing else, simply sharing this story, or your own, helps raise awareness. Awareness brings understanding. Understanding brings change.

So here’s my ask: carry the heart of this Symposium forward. Talk about what you’ve learned. Share the stories that moved you. Encourage others to get involved. Because while research will always be critical, it’s our voices, our advocacy, and our courage that will shape the future of GBS, CIDP, and related conditions.

And maybe next time, when the community gathers in Boston, MA in 2027, you’ll be there too, adding your story to the chorus that keeps getting louder. Together, we’re not just surviving a rare disease. We’re building a movement.