I AM HEARD Coalition

I AM HEARD Coalition Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from I AM HEARD Coalition, Nonprofit Organization, Nashville, TN.

Bridging the gap between diagnosis & a cure through direct patient resources, research & education. ™️
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07/30/2026

MFR Series Part 2: Feet & Hip Flexors 🦶

We're back with part 2 of our Myofascial Release (MFR) series — tools and techniques to manage day-to-day discomfort and help your fascia handle load more efficiently before you move.

Many in our community live with Ehlers-Danlos, where traditional stretching can actually work against you. Static stretching relies on lengthening muscle, but in hypermobile bodies those "tight" muscles are often doing quiet, essential work bracing unstable joints — so stretching them can mean trading short-term relief for long-term instability. MFR works differently: instead of lengthening, it uses sustained pressure to release adhesions and restricted tissue, which can improve movement quality and comfort without asking your joints to move past a safe range.

In today's video, co-founder James walks through two simple MFR techniques you can try at home with minimal equipment:

🦶 Feet — a foundational (literally) part of your structure that rarely gets the attention it deserves

🦵 Hip flexors — a common hot spot for tightness and compensation patterns

Research backs up starting here: self-myofascial release of the feet has been shown to improve flexibility through the whole posterior chain for up to an hour afterward, and foam rolling/SMR more broadly is associated with meaningful gains in joint range of motion without sacrificing muscle performance

We'll cover foot-strengthening exercises in a future post, but for now: try adding these two techniques to your pre-workout routine, or reach for them anytime discomfort creeps in.

Next time you're about to stretch before a workout, try MFR first and see how your body responds.

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.

Newsletter Edition No.2 will drop some big news!We’re releasing our official first list of certified providers — the one...
07/29/2026

Newsletter Edition No.2 will drop some big news!

We’re releasing our official first list of certified providers — the ones who’ve met the standards we set to give you a real shot at finding success when you sit down with them.

This isn’t a random directory. Every provider on this list earned their spot. Not paid. Earned.

Here’s what else is inside Edition No.2:

🧡 New MFR tips
🧡 Nutrition aids
🧡 Therapeutic device highlights
🧡 A research summary
🧡 A brand-new blog post
🧡 And more

Haven’t signed up yet? Head to the link in our bio. Sign up before the 1st and you’ll also be sent edition No.1 🙌

This newsletter is built around your questions and your experience. If there’s a topic you want us to cover — in the newsletter or on social — tell us. This is your organization. We’re listening.

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.

Not every seizure-like episode is epilepsy—and not every syrinx increases seizure risk directly. The science is more nua...
07/28/2026

Not every seizure-like episode is epilepsy—and not every syrinx increases seizure risk directly. The science is more nuanced than a yes or no. Swipe through to learn what the evidence actually shows. 🧠⬅️

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.

Life with a chronic illness doesn't end at diagnosis. And it doesn't end if a cure comes, either.The damage already done...
07/27/2026

Life with a chronic illness doesn't end at diagnosis. And it doesn't end if a cure comes, either.

The damage already done — from surgeries, from years of neurological wear — doesn't disappear. That's the piece too many people miss.

We founded this coalition because we watched our community get left behind. Doctors with no answers. Organizations chasing research while patients went without the help they needed today.

So our mission evolved. Research matters — we fund it too. But we refuse to make our community wait for it to feel supported.

Our job is to equip you for the space between diagnosis and cure, and for everything that comes after — so you can reach your fullest possible quality of life, on your timeline, not someday's.

That means:

🧡 Care packages when you need them

🧡 Grant-to-patient programs that put resources in your hands

🧡 Direct engagement — real people, real answers

🧡 Questions answered, not deflected

We're not here to sell you false hope or hold you hostage to "just wait and see." We meet you exactly where you are, right now.

If you're ready for a community that sees the full picture of life with chronic illness — follow, DM us, or book a call. We're here for you. ❤️

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.

07/26/2026

🎙️ THE YOU ARE HEARD PODCAST — Episode 1 is LIVE!

We are beyond excited to kick off this new chapter of our mission: real conversations between real experts & real patients from around the world.

For our very first episode, we sat down with Holly — our Florida Chapter Leader & newly named Board Chair. Holly flew in from Florida to spend the weekend with us, and it was one for the books.

Holly is a true rockstar advocate for this community. Her story is a masterclass in resilience — and proof of how life-changing (and in her case, life-saving) access to a real "dream team" of providers can be.

In this episode, we talk about:

🔹 Holly's syringomyelia diagnosis, multiple surgeries, and the bacterial infection that nearly took her life
🔹 What recovery really looks like while balancing a full-time job and leading within our organization
🔹 Why everyone deserves access to a "dream team" of providers
🔹 How she met James & Megan and found her way to the Coalition
🔹 Her advice for patients navigating similar journeys
🔹 Why celebrating little wins matters more than chasing massive progress overnight..and so much more.

🎧 Watch the full episode now — link in bio.
Then like, comment & subscribe so we can help more people find this awareness and connection. 💛

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.

❤️❤️❤️
07/26/2026

❤️❤️❤️

Day Number 2 with Holly & a Quick update: Technical difficulties during today's podcast filming meant we only captured h...
07/25/2026

Day Number 2 with Holly & a Quick update:

Technical difficulties during today's podcast filming meant we only captured half the episode 😵‍💫 So — Episode 1 drops TOMORROW instead. Lesson learned, and now we know exactly how to handle any hiccups going forward. We're all figuring this out together — no "know-it-alls" allowed in this coalition, just people showing up and learning in real time with and for the community.

Got questions for Holly? You've got a little extra time to send them in before the episode airs 👀

Now for the good stuff — a few highlights from day #2:

Holly got to meet two of our incredible coalition board members, Dr. Brittany Tinker (TinkerFamilyChiropractic) and Dr. Benjamin Howe (Panda Performance & Physiotherapy) then even got some hands-on therapy from Dr. Ben, who is an absolute expert at his craft.

We are so grateful she's here with us, and there's so much more from her trip on the way — most of it will be shared on our Florida Chapter page, so make sure you're following along there too 👇

I AM HEARD Florida- Syringomyelia

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.

Full circle. 🥹Today, Holly — our Florida Chapter leader, the very first voice in our "I AM HEARD" testimony series, and ...
07/23/2026

Full circle. 🥹

Today, Holly — our Florida Chapter leader, the very first voice in our "I AM HEARD" testimony series, and now one of our closest friends — made the trip to Tennessee to be with us in person.

Holly was there before "I AM HEARD" was even a name. Her passion for community, her integrity, and her fierce never-quit attitude are what pulled us together in the first place — before Syrinx Awareness & Athlete Coalition ever became the "I AM HEARD" you know today. That bond has turned into something we never could've planned for.

So today, we're proud to officially announce Holly as our first non-medical Board Chair.

This role is built on trust — trust that Holly will give us honest, unbiased feedback that always puts our community first and pushes our mission forward. As we grow, she'll help lead the coalition, but just as importantly, she'll be a living example of the kind of people we want in this movement: passionate, determined, principled, open-minded. Our community deserves nothing less, and Holly embodies it.

🎙️ And there's more: Episode 1 of the YOU ARE HEARD Podcast drops tomorrow — with Holly as our very first guest.

We want YOU in the room for this one. Drop your questions for Holly below — about her syringomyelia journey, navigating providers, her hard-earned tips, or her vision for the coalition's future. We'll be asking a few of yours live on the show. 👇

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.

This World Brain Day, we recognize Chiari malformations and the strength of those living with them every day. Together, ...
07/22/2026

This World Brain Day, we recognize Chiari malformations and the strength of those living with them every day. Together, we can build a future with greater awareness, improved care, and more research to better understand this complex neurological condition. 🧠💙

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 just got the sweetest care package from our friends at Keto Brainz Nootropics — and we had to share.If you've hoppe...
07/22/2026

☕ We just got the sweetest care package from our friends at Keto Brainz Nootropics — and we had to share.

If you've hopped on a Zoom call with us or followed along for a while, you already know: this is a brand we loved long before this coalition even existed. And if you've gotten a care package from us, there's a good chance KetoBrainz was already in it. (Speaking of — join us for a Zoom call and we'll send you one too 🙂)

Especially in our community, coffee on its own isn't always a great idea. We always encourage pairing caffeine with food, electrolytes, or something like KetoBrainz to get the benefits without the crash.
And don't let the name fool you — you don't need to be on a keto diet to feel the difference. Each scoop brings:

🧠 MCTs — for sustained, steady energy
🎯 Alpha-GPC — for focus and mental clarity
🍄 Lion's Mane — to support brain health
😌 L-Theanine — boosts GABA for calm, steady energy (no coffee jitters)

Our co-founder James found this to be one of the only ways he can drink coffee without the negative side effects — and it's just as good stirred into a nighttime tea to help you wind down.

Beyond the product, the people behind KetoBrainz are genuinely wonderful — committed to third-party testing, science-backed formulas, and generosity toward our community in a way that means a lot to us.

Want to try a bag, or see what else they're making? Tap the linktree in our bio 🔗 and use code IAMHEARD for 20% off.

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.

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