Founder’s Note: Returning to Our Community Roots

As we prepare for the 15th Anniversary of MSAD in 2026, many people have asked about our journey — where we’ve been, why we stepped away from the nonprofit model, and how that decision has shaped the work we’re doing today. This founder’s note is here to answer those questions clearly and openly, and to share the vision guiding us forward.

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When I started Many Faces of Moebius Syndrome (MFOMS) in 2009, I never imagined it would become a global community. There was no business plan, no funding, and no boardroom. It was simply people helping people — sharing stories, building friendships, and making sure no one felt alone. That volunteer-driven spirit has always been our strength.

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Years later, when we transitioned into a nonprofit, we did so because of the strong foundation volunteers had already built. Everything we accomplished as a nonprofit existed because of the years of community work that came before it. But as time passed, the structure that was meant to help us started taking something away. We gained official titles, but we lost some of the closeness, creativity, and freedom that made MFOMS unique.

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So, when we dissolved the nonprofit, it wasn’t a step backward. It was a step forward. It was a return to the model that actually works for us — the model that built MFOMS in the first place. Dissolving wasn’t a loss. It was clarity. It was strength. It was taking back what made this community special.

And the results speak for themselves.

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The year after we dissolved the nonprofit was one of the most active and productive years we’ve ever had. Together, we:

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• Rebuilt and documented the full history of Moebius Syndrome Awareness Day

• Published a complete 60-page book preserving that history

• Released new proclamation toolkits and expanded MSAD resources

• Launched Moebius Voices Kids and created an entire Moebius Voices series

• Built national directories for craniofacial hospitals and special-needs assistance

• Upgraded our website, SEO, and outreach

• Brought back community-centered traditions and holiday features

• And began preparing for MSAD 2026 — the 15th anniversary

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That’s not the work of an organization “going back.”
That’s the work of a community coming back to life.

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The advocacy world has changed — and not always in ways that honor the people actually living with Moebius syndrome. I understand the frustration many have felt. I’ve felt it myself. That’s why MFOMS is returning fully to what we know works: authenticity, lived experience, and community-first leadership. No gatekeeping. No bureaucracy. No voices being pushed aside.

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MFOMS is — once again — exactly what it was always meant to be:

A place where real people lead the way.
A place where stories matter again.
A place where families feel supported.
A place where lived experience isn’t filtered or ignored.

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And now, with MSAD 2026 ahead of us, we stand in one of the most exciting chapters in our history.

Because we are not done.
We are not slowing down.
And we are not stepping aside.

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We are building something stronger, braver, and more community-driven than ever — the same way we built everything from the beginning: together.

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Your voice matters here.
Your story matters here.
You matter here.

This is our return to our roots.
This is our new chapter.

And the best part?

We’re just getting started.

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— Tim Smith
Founder, Many Faces of Moebius Syndrome (MFOMS)