1.1 Million

We want to be honest with you about something: when we started this, we didn't know if anyone would show up.

Building SAAC from the ground up while managing syringomyelia ourselves — the pain, the fog, the appointments that leave you more confused than when you walked in — is not a glamorous origin story. It's a stubborn one. James and Megan built this because they had no choice. Because the silence around this condition was louder than anything the medical system was saying. Because "we don't know enough yet" gets old fast when your spinal cord has a fluid-filled cavity in it and you're trying to figure out how to live.

That's still the engine. And right now, that engine is moving.

What 1.1 Million Actually Means

Since December, our viewership and reach has surpassed 1.1 million.

We want to sit with that for a second, because a number like that can slide right past you if you're not careful. This is a condition that most doctors still struggle to explain. A condition that many patients can't even pronounce when they first read it on their MRI report. A condition with no cure, limited treatment options, and a research base that has moved far too slowly for far too long.

And yet — over a million people have encountered this community. They've seen the word "syringomyelia" on their screen. Some of them have a syrinx and didn't know there was anyone out there talking about it. Some of them are caregivers who finally had language for what they were watching their person go through. Some of them are medical professionals who needed a reminder that their patient deserves more than a shrug.

That reach doesn't happen because we paid for it. It happens because this community is DONE being invisible.

Sitting Across From Someone Who Finally Feels Heard

One of the things we do that almost no nonprofit does is offer one-on-one Zoom calls with patients. No waiting list with 400 people on it. No automated intake form that loops you back to a pamphlet. A real conversation.

We can't tell you everything those calls hold — but we can tell you what the other side of the screen often looks like. Someone who has been told their pain is anxiety. Someone who took their MRI report to three different specialists and got three different answers, or worse, three variations of the same non-answer. Someone who has been managing this largely alone because the people around them don't understand what a syrinx is, and they've stopped trying to explain.

We sit with them. We listen. We share what we know and we're honest about what we don't. And sometimes the most important thing we do in that hour is simply not dismiss what they're telling us.

That's what #IAMHEARD means in practice. Not a hashtag. An actual hour. With an actual person. Who leaves that call knowing somebody took them seriously.

The Board We Built — and Why It Looks the Way It Does

We don't take the Medical Advisory Board lightly. Putting together a group like this — 10 advisors spanning neurology, physical therapy, dietetics, chiropractic care, and performance science — took time we didn't always feel like we had. But we were clear about what we needed: not just credentials, but people who understand complexity.

Dr. Barth A. Green, M.D. serves as our Senior Advisor. Dr. Ryan P. Lee, M.D. leads our research representation. Dr. Stephen Landy, M.D. and Dr. Benjamin Howe, DPT bring deep clinical experience. Isabella Morin, MS RDN LDN addresses the nutritional dimension that too often gets ignored in neurological care. Dr. Brittany Tinker, DC and David P. Ferguson, PhD FACSM round out a scope of expertise that reflects what living with SM actually demands — because this condition doesn't just affect one system.

But the person we want you to know about in particular is Dr. Angela Santoro, DPT. She has syringomyelia herself. She is not observing this condition from a clinical distance — she is navigating it. That perspective changes everything about how she shows up in this work, and it changes what this board represents. We are not a panel of outside experts looking in on a community they've read about. We are people who live this, surrounded by professionals who take that seriously.

This board positions SAAC to move from awareness into action with a foundation that can hold the weight of that work.

Turning Infrastructure Into Real Support

Everything we've built — the website, the reach, the board, the trust — has been leading somewhere specific.

The YOU ARE HEARD Patient Resource Grant Program is launching soon. Tiered grants of $1,000 to $3,000 for syringomyelia patients — case by case, need by need, wherever you are. Every dollar raised for this program goes back into the people it was built for — real resources, real support, for people navigating a condition that real systems were not designed for. In the meantime, it’s been an absolute pleasure sending out all the care packages to our community. But believe it when we say this is just the smallest fraction of support you’ll be getting from us.

Our website wasn't built to look impressive. It was built to be useful — with pages on related conditions, procedures, medications, a hierarchy of needs, appointment prep questions, veterans resources, youth programming through our Tyler's Dream partnership, a research page, and patient testimonials. Every section exists because someone needed it and couldn't find it anywhere else. The grant program is that same philosophy, made tangible. Made financial. Made real.

We also received the Silver Transparency 2026 rating from Candid. That matters to us because this community has earned the right to know exactly where their trust is being placed and exactly what is being done with it. Since it’s our first official year financially, this is the highest tier possible to be awarded. We can’t wait to reach platinum status next year!

We Mean It When We Say This Is Just Starting

A nonprofit's goal shouldn't be to exist forever — because if we're still here, it means people still need help. We don't want to still be needed. But right now, people need us. And we're not going anywhere.

Follow along on social media, share what we're doing with anyone who knows the word "syrinx" — or with anyone who doesn't yet but should. If you have syringomyelia and need support, watch for the application phase of our grant program. If you want this work to grow, donate. Every dollar goes back into the people this was built for.

We built this because we had to. We're keeping it going because you deserve it.