I AM HEARD Coalition

I AM HEARD Coalition Empowering those with syringomyelia and associated conditions through research, advocacy & direct holistic support.

You will be heard.
™️
https://linktr.ee/iamheardcoalition?utm_source=ig&utm_medium=social&utm_content=link_in_bio&fbclid=PAb21jcA

Your diagnosis isn’t your identity.It’s an invitation to become intentional with your health, your habits, and your life...
05/29/2026

Your diagnosis isn’t your identity.

It’s an invitation to become intentional with your health, your habits, and your life.

What feels like a setback today may be the reason you become stronger tomorrow.

You are capable of more than you realize.

Your diagnosis doesn’t define your potential. It challenges you to unlock it.

As always, we want to hear from you in the comments or DM with questions, for you to be able to say 🧡



This content is for informational and educational purposes only and is not intended as medical advice, diagnosis, or treatment. Always consult a qualified healthcare professional for any medical concerns. I AM HEARD Coalition assumes no liability for any actions taken based on this information.

05/28/2026

Co Founder, James, explaining his experience with the Pulse Device.

Full‑spine MRI is not routine. It’s rare. Out of ~100–200 million MRI scans worldwide each year, only a fraction are of ...
05/28/2026

Full‑spine MRI is not routine. It’s rare. Out of ~100–200 million MRI scans worldwide each year, only a fraction are of the spine — and only a small slice of those scan the entire spine.

For conditions like syringomyelia, that full‑spine view can be the difference between ‘nothing looks wrong’ and finally seeing the syrinx and its cause.

Access to that level of imaging shouldn’t depend on where you live or how loudly you can advocate for yourself. That’s why we’re here.

As always, we want to hear from you in the comments or DM with questions, for you to be able to say 🧡



This content is for informational and educational purposes only and is not intended as medical advice, diagnosis, or treatment. Always consult a qualified healthcare professional for any medical concerns. I AM HEARD Coalition assumes no liability for any actions taken based on this information.

As Syringomyelia Awareness Month draws to a close, we wanted to highlight one of the most overlooked conversations in th...
05/27/2026

As Syringomyelia Awareness Month draws to a close, we wanted to highlight one of the most overlooked conversations in the CSF disorder world: Chiari 0.

Not every patient fits neatly into a textbook measurement. Research continues to show that altered CSF flow, connective tissue disorders like EDS, posterior fossa crowding, and cranio-cervical instability may still contribute to symptoms and syrinx formation — even without “classic” Chiari findings.

Far too many patients are told their imaging is “normal” while continuing to struggle with very real neurological symptoms.

More awareness. More research. More nuanced conversations. Less dismissal.

As always, we want to hear from you in the comments or DM with questions, for you to be able to say 🧡



This content is for informational and educational purposes only and is not intended as medical advice, diagnosis, or treatment. Always consult a qualified healthcare professional for any medical concerns. I AM HEARD Coalition assumes no liability for any actions taken based on this information.

It’s not a coincidence that Syringomyelia and Ehlers-Danlos Syndrome share the same Awareness Month… If you’ve been labe...
05/26/2026

It’s not a coincidence that Syringomyelia and Ehlers-Danlos Syndrome share the same Awareness Month…

If you’ve been labeled with “idiopathic” syringomyelia, it may be time to look deeper into connective tissue disorders like hEDS.

Our board strongly advocates for genetic testing + connective tissue evaluation when no clear root cause has been identified.

Sometimes the syrinx is the manifestation — not the beginning of the story.

As always, we want to hear from you in the comments or DM with questions, for you to be able to say 🧡



This content is for informational and educational purposes only and is not intended as medical advice, diagnosis, or treatment. Always consult a qualified healthcare professional for any medical concerns. I AM HEARD Coalition assumes no liability for any actions taken based on this information.

During Syringomyelia Awareness Month, this is your reminder that healing doesn’t start at the top of the pyramid.You can...
05/25/2026

During Syringomyelia Awareness Month, this is your reminder that healing doesn’t start at the top of the pyramid.

You can’t “push through” a dysregulated nervous system. You can’t optimize performance when basic needs like safety, rest, pain control, nourishment, mobility, and support are barely being met.

For so many living with Syringomyelia, survival becomes the baseline before thriving is ever possible.

Awareness means understanding that quality of life matters too. Not just scans. Not just symptoms. The human behind them.

As always, we want to hear from you in the comments or DM with questions, for you to be able to say 🧡



This content is for informational and educational purposes only and is not intended as medical advice, diagnosis, or treatment. Always consult a qualified healthcare professional for any medical concerns. I AM HEARD Coalition assumes no liability for any actions taken based on this information.

05/24/2026

Steve Irwin didn’t just advocate.

He made people feel something.

He showed up with unmatched energy, fearless passion, and a heart fully committed to giving back.

That’s the kind of advocacy we believe in at I AM HEARD Coalition.

We don’t do quiet compassion.

We don't disengage with the community we serve.

We aren't passive, we are aggressive.

We show up loud for the unheard.

We turn awareness into action.

We give what we have back to the community.

We lead with passion because the people we serve deserve nothing less.

Steve taught us that when you care deeply enough, people listen.

And when people listen, movements begin.

That’s the mission.

That’s the energy.

That’s I AM HEARD.

As always, we want to hear from you in the comments or DM with questions, for you to be able to say 🧡



This content is for informational and educational purposes only and is not intended as medical advice, diagnosis, or treatment. Always consult a qualified healthcare professional for any medical concerns. I AM HEARD Coalition assumes no liability for any actions taken based on this information.

Seventeen-year old Aussie Caitlin Haigh — syringomyelia warrior, researcher, and I AM HEARD Coalition’s resident artist ...
05/23/2026

Seventeen-year old Aussie Caitlin Haigh — syringomyelia warrior, researcher, and I AM HEARD Coalition’s resident artist — authored this literature review exploring possible links between brachycephaly, CSF disruption, and syringomyelia.

One of the hardest realities of living with a rare disease is that patients have no other choice than to become researchers, advocates, and experts in their own right. When answers are limited and credible sources are scarce, many in the rare disease community end up studying the science themselves simply to survive, understand, and be heard.

That’s exactly why I AM HEARD exists and Syringomyelia Awareness Month matters.

Awareness creates conversation. Conversation drives research. Research provides new information… that knowledge is POWER.

And sometimes, the empowered people pushing the field forward are the very patients, like living it every single day.

As always, we want to hear from you in the comments or DM with questions, for you to be able to say 🧡



This content is for informational and educational purposes only and is not intended as medical advice, diagnosis, or treatment. Always consult a qualified healthcare professional for any medical concerns. I AM HEARD Coalition assumes no liability for any actions taken based on this information.

❤️🥹 We love the bonds we are able to create in this community! Such a special feeling.
05/22/2026

❤️🥹 We love the bonds we are able to create in this community! Such a special feeling.

05/22/2026

Another behind-the-scenes look at our visit with the MSU Motorsports Performance Team.

We have to ask again—how many founders of rare disease organizations are willing to put themselves through rigorous performance testing in pursuit of answers for their community? This is just one of many initiatives James is taking on to better understand what those living with syringomyelia experience every day.

What we uncovered is both eye-opening and validating. Some of these findings may challenge assumptions, while others reinforce what many in this community have long suspected.

We will be sharing a deeper analysis soon, along with a long-form YouTube video that walks through the entire experience. You will get an inside look at how our founders, alongside expert contributors, approach learning about this condition in a hands-on, data-driven way.

Here are a few key topics we will be diving into:

- Blood glucose and its role as a meaningful metric for understanding what is happening in the body

- Sympathetic nervous system hyperreactivity or parasympathetic nervous system blunting? Is one or the other common with Syringomyelia and how should it be addressed?

- Heat intolerance and hydration: Are patients more prone to dehydration, and what strategies can help manage it?

Stay tuned for the full breakdown and video release coming soon.

As always, we want to hear from you in the comments or DM with questions, for you to be able to say 🧡



This content is for informational and educational purposes only and is not intended as medical advice, diagnosis, or treatment. Always consult a qualified healthcare professional for any medical concerns. I AM HEARD Coalition assumes no liability for any actions taken based on this information.

It doesn’t have to be Syringomyelia Awareness Month to give us an excuse to get another pair of trainers 😆…Your shoes ar...
05/21/2026

It doesn’t have to be Syringomyelia Awareness Month to give us an excuse to get another pair of trainers 😆…

Your shoes are not “just shoes” when your nervous system is already doing the most. 👟🧠

Support, stability, and symptom-aware choices matter — because comfort is care, and function is the flex.

Save this for your next shoe hunt + send it to someone who needs better footwear recs.

As always, we want to hear from you in the comments or DM with questions, for you to be able to say 🧡



This content is for informational and educational purposes only and is not intended as medical advice, diagnosis, or treatment. Always consult a qualified healthcare professional for any medical concerns. I AM HEARD Coalition assumes no liability for any actions taken based on this information.

Address

Nashville, TN

Website

Alerts

Be the first to know and let us send you an email when I AM HEARD Coalition posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share

Category