This will be a slight departure from our usual Floppy Files rhythm.

​

No deep dive into a singular rabbit hole. No winding path from curiosity to clinical application. Just a moment, a pause really, to acknowledge something that many of us are already feeling but may not yet have put into words.

​

Here in Oklahoma, something has shifted.

​

The air carries a quiet mix of fear, uncertainty, and, at times, a kind of emotional stillness that borders on apathy. It is not dramatic. It is not loud. It is simply there, woven into conversations, lingering in exam rooms, and sitting with us in the spaces between questions and answers.

​

We feel it too.

​

The ecosystem of care for hypermobile patients is changing, not only here at home but across the country. What once felt like isolated pockets of knowledge is rapidly becoming something far more interconnected. That change can feel unsettling when it begins so close to home.

​

Yet, when we step back, the view becomes something else entirely.

 

​

At the center of this shift is Dr. Dacre Knight, a leading internist in hypermobility research who now serves as Medical Director of the University of Virginia’s EDS and Hypermobility Disorders Center.

​

UVA’s recent international debut introduced something remarkable to the broader medical community. If you have not seen it yet, it is available on YouTube, a full two days totaling nearly fifteen hours of free education. It is, in every sense, delightfully nerd-tastic.

​

What becomes immediately clear while watching is not just the depth of information being shared, but the way it is being shared.

​

This is no longer a collection of isolated experts working in parallel. What we are witnessing is the formation of a true network. Researchers and clinicians are actively building on each other’s work, aligning language, comparing findings, and refining frameworks in real time. The conversations feel less like presentations and more like a coordinated effort to map an entire landscape that has long been fragmented.

​

We are watching silos dissolve.

​

In their place, a network is emerging, one that includes growing partnerships with several recognized centers of excellence:

• Medical University of South Carolina

• Indiana University

• University of Toronto

• Mayo Clinic - Jacksonville 

 

If we return to that earlier image of a map, this is the moment where the roads finally start connecting the cities. Knowledge is no longer staying local. It is moving, circulating, and evolving through collaboration.

​

For a community that has spent years searching for answers in scattered places, this shift toward connection may be one of the most meaningful breakthroughs of all.

 

​

All of this collaboration is building toward something larger.

​

As we move closer to the reveal of The Road to 2026, The Ehlers-Danlos Society is preparing to update classification systems, diagnostic criteria, and treatment pathways for Ehlers-Danlos syndromes. 

​

This moment is not just about new criteria. It reflects a deeper alignment across institutions, where shared knowledge is being refined into something more cohesive, more teachable, and more actionable.

​

Which means something important for us.

​

Our voices, the ones shaped in exam rooms, in long conversations, in trial and error, are no longer staying local. They are being carried into larger systems where they can help shape the future of research, education, and clinical training.

​

The experiences of this community are becoming part of the blueprint.

​

 

Which brings us back to Oklahoma.

​

To us.

​

To someone who has helped shape this very ecosystem we are talking about.

​

Dr. Bernadette Miller has been one of the fiercest leaders in patient advocacy, hypermobility awareness, and the pursuit of better outcomes that we have had the privilege to know. Her work has never been confined to a single clinic or conversation. It has lived in the way she has pushed for clarity, demanded better answers, and stood firmly alongside patients navigating an often confusing system.

​

So yes, we feel the loss.

 

Losing her presence here, in our immediate community, is not insignificant.

​

Yet, what she is stepping into carries something bigger.

​

She is not leaving us behind.

​

She is bringing us with her.

​

​

As she steps into her role as Program Director of the EDS Clinic at Mayo Clinic- Jacksonville, alongside the resources of Mayo Clinic, she carries the collective knowledge of this Oklahoma community. She carries the patterns we have uncovered together, the questions we refused to stop asking, and the lived experiences that shaped every step forward.

She carries our voices.

​

And now, those voices will be heard on a much larger stage.

 

​

There is something we say often, and it feels especially important now.

​

We, as providers, learn from our patients.

​

We cannot be experts in everything. Medicine does not work that way, especially in a field as complex and evolving as hypermobility. What allows progress to happen is the honesty and trust patients bring into the room. It is the willingness to share patterns, frustrations, and experiences that do not always fit neatly into existing boxes.

​

That exchange is where real understanding begins.

​

It is also what expands outward now.

​

Because when Dr. Miller walks into those rooms, she does not walk in alone.

​

She walks in with us.

​

Our stories will help shape future research. Our experiences will inform how clinicians are trained. Our collective voice will influence how hypermobility is understood on a national stage.

​

The ripple effect is no longer small.

​

It is something much bigger, and it is already in motion.

​

 

So while this moment may feel uncertain, even heavy at times, it is not an ending.

​

It is a transition.

​

It is the start of a broader conversation where our voices, our stories, and our experiences are not only included, but amplified.

​

We are not being left behind.

​

We are being carried forward.

 

​

To Dr. Miller, we say thank you.

​

Thank you for your advocacy, your leadership, and your unwavering commitment to this community. Thank you for the trust you have built and the knowledge you have helped cultivate.

At times, this path may feel heavy. It may feel like you are carrying the weight of an entire community on your shoulders.

​

Please remember, you are not carrying it alone.

​

You have us.

​

You have our stories.

​

You have our support.

​

There may be moments of self-doubt. Moments where the responsibility feels overwhelming. In those moments, we hope you remember exactly where you came from and who stands behind you.

​

We do.

​

We know what you can do because we have seen it, firsthand.

​

The future of hypermobility is in incredibly capable hands.

​

And we, as Oklahomans, thank you for carrying us with you.

​

This is not goodbye.

​

This is the beginning of something larger, and we cannot wait to see what you do next.​