Tim Smith

Q. Sophie: Do you feel like this is going to be a good year for MSAD?

A. Tim: If I’m being completely honest, this year comes with challenges. Historically, even-numbered years haven’t always had the same momentum. We’re also dealing with significant weather across much of the country, which has already led to several events being canceled, and the NFL playoffs are pulling attention this weekend as well. Those things matter, and it wouldn’t be realistic to ignore them.

That said, success for Moebius Syndrome Awareness Day has never been about how loud the day is or how many impressions it generates. It’s always been a community-led effort, and what matters most to us is how the community experiences the day.

In that sense, this year has been incredibly meaningful. We’ve seen more community support than ever, more engagement, and more people visiting our website than we’ve had in recent years. We were also able to have two states officially recognize Moebius Syndrome Awareness Day this year, and Saint Regis Mohawk Tribe, which is something I’m very proud of — and there may be more recognitions that may come after the day itself.

What I hold my head high about is that everything we’ve accomplished has been done without donations or paid promotion. Larger organizations spend thousands of dollars trying to achieve the kind of awareness and engagement we’re seeing organically. For us, it’s always been about people showing up for each other.
At the end of the day, if the community feels seen, supported, and connected, then it’s been a good year for Moebius Syndrome Awareness Day — regardless of the external noise.

Q. Sophie: How are you affected by Moebius Syndrome?

A. Tim: I don’t think I’m affected by Moebius syndrome in the way people often expect. In many ways, I’ve been more affected by watching what others go through.

I was teased badly as a child, and at the time there wasn’t even a name for what I had. But I didn’t have much space to sit with that for long. By the time I was 15, I was, for all practical purposes, on my own after losing my parents. Those years were difficult, and I took some dangerous turns, but I survived them. What I went through during that period shaped me far more than the diagnosis itself.

When I was finally told what I had, about twenty years ago, I was already strong enough to face it. I don’t wish the path I took on anyone, but I learned how to overcome, and that perspective has stayed with me.

One of the most painful moments of my life was kneeling beside Hannah’s grave and realizing that, according to doctors, it should have been me. Throughout my childhood, my parents were repeatedly told that my time was limited. Hannah didn’t get the chance to live a full life, and my parents put my needs ahead of their own in ways that may have shortened theirs.

This journey has never really been about me. It’s about Hannah, who didn’t get the chance to take her journey. It’s about my parents, who gave everything they had. And it’s about honoring them by making sure others don’t feel alone.

Q, Sophie: What was known about Moebius when you were born or diagnosed?

A, Tim: When I was born, very little was known about Moebius syndrome, and in practical terms, it wasn’t recognized at all in my case. My parents took me to the National Institutes of Health and to Children’s Hospital in Washington, D.C., and despite extensive evaluations, no one could give them an answer.

Ironically, it was an eye doctor who first identified Moebius syndrome when I was about two years old. He documented it in my medical records, but the diagnosis was never followed up on, explained to my parents, or incorporated into my care. At the time, there were no clear pathways, no coordinated specialists, and very little shared knowledge about the condition.

As a result, I grew up without understanding why certain things were happening or having a name for them. It wasn’t until much later in life — roughly twenty years ago — that the diagnosis was revisited and finally acknowledged in a meaningful way.

That gap in understanding shaped a lot of my early experience, and it’s one of the reasons awareness and information matter so much today. Knowing sooner doesn’t change the condition, but it can change how families prepare, cope, and support one another.

Q. Sophie: When you were growing up, how was your Moebius treated by your peers at school?

A. Tim: Elementary school was very difficult for me. I was treated poorly by many of my peers, and when things became overwhelming, I often ran away and cried. At that age, I didn’t have the tools to explain myself or defend myself, and there was very little understanding from the people around me.

My parents always told me that I had to try to fit in. I understand now why they said that, but at the time I didn’t want to try. I didn’t like how people treated me, and trying to fit into something that felt hostile wasn’t something I knew how to do.

Middle school brought an unexpected change. I was befriended by one of the popular students at school, whose sister had Down syndrome. That connection mattered more than people realize. Social dynamics can shift quickly when empathy enters the picture, and my experience changed almost overnight. It taught me that understanding and exposure can make a real difference.

That period of relative stability didn’t last long, as other challenges followed later in my life. But it stayed with me. Over the years, something else has happened that I never expected: many of the people who treated me badly as a child have reached out to apologize. Some of them have become friends, and have been for many years.

It doesn’t erase what happened, but it does show that people can grow — and that awareness and understanding, even when they come late, still matter.

Q. Sophie: What would you say is the most challenging thing about having a facial difference?

A. Tim: By far, the most challenging part for me has been dating and relationships.
There are people out there who don’t care about facial differences, but finding them often means facing a lot of rejection first. You have to be willing to keep putting yourself out there, and that’s not easy. Many people reach a point where the rejection becomes too heavy, and they step away from the process altogether.

In my own life, my work with Many Faces of Moebius Syndrome has also had an impact. It isn’t usually the condition itself that’s an issue — it’s the time and emotional commitment that comes with running a community-led organization. People may be understanding about differences, but relationships still require presence, and advocacy work can take a lot of that away.

That said, I haven’t given up. I’ve learned that connection is possible, even if it takes longer and requires resilience. I've been in successful long term relationships before. After Moebius Syndrome Awareness Day each year, I remind myself that life continues beyond the work — and that putting myself back out there is part of that journey too.

Q. Sophie: What brings you joy in life?

A. Tim: I’ve always been someone who finds joy in the buildup rather than the moment itself. As a kid, I loved the anticipation of Christmas more than the day it arrived. In many ways, I’m still like that.

That’s how I experience Moebius Syndrome Awareness Day as well. I get the most joy from the time leading up to it — putting in the work, watching people come together, seeing stories shared, and noticing things slowly take shape. The process matters more to me than the single day on the calendar.

Along the way, there are moments when others receive credit for work you’ve poured yourself into. I’ve learned to see those as potholes in the road — frustrating, but not enough to stop the journey.

What truly brings me joy is the adventure itself: the effort, the growth, and the moments that unfold when people connect. It’s the journey, not the spotlight, that keeps me going.

Q. Sophie: Can you tell us about some of the changes in the MFOMS organization?

A. Tim: Life is about change. To move forward, you often have to make adjustments — but you also have to understand where you came from. Without that perspective, moving forward can turn into moving in circles.

Many Faces of Moebius Syndrome has gone through changes, and one of the most important has been returning to our roots. We’ve learned that we are most effective as an all-volunteer, community-led organization. That model is not a limitation for us — it’s our strength.

Over the past eight months, what we’ve been able to accomplish speaks for itself. We’ve seen increased engagement, stronger community support, and meaningful recognition, all without losing sight of why MFOMS exists in the first place.

At the end of the day, the community we helped create is the community we serve. We don’t answer to trends, pressure, or outside expectations. We answer to the people who show up, share their stories, and support one another — and that clarity has guided every change we’ve made.

Q. Sophie: What has been the impact of MFOMS since it began?

A. Tim: The impact of Many Faces of Moebius Syndrome is probably best understood by looking at how the community exists today compared to when we started.

When MFOMS began, there was very little shared space for people affected by Moebius syndrome to connect, tell their stories, or even realize they weren’t alone. Over time, those connections grew organically. People found one another, conversations started, and a sense of community took shape.

One of the most visible outcomes of that work was the creation of Moebius Syndrome Awareness Day, which gave families and individuals a shared moment each year to be seen and acknowledged. Beyond that, MFOMS helped normalize open conversation about Moebius syndrome and encouraged people to share their experiences publicly, often for the first time.

I don’t think of our impact in terms of credit or ownership. The community itself is the impact. Many of the relationships, initiatives, and conversations that exist today grew out of people simply having a place to start. If MFOMS helped provide that starting point and helped shift the landscape toward greater connection and understanding, then I believe the work has mattered — and hopefully continues to matter.

Q. Sophie: What are your hopes for people being diagnosed with Moebius Syndrome today?

A. Tim: My hope is that people being diagnosed today — and their families — never feel alone. No one should have to navigate something like this without connection, understanding, and support.

I also hope that continued medical progress brings greater ease and normalcy into their lives. Every step forward matters, whether it’s in care, understanding, or simply being seen for who they are beyond a diagnosis.

More than anything, I hope they have access to the things I didn’t have but wanted — community, clarity, and reassurance that their future is still wide open. I hope they’re encouraged to pursue full, meaningful lives on their own terms.

I don’t think I have advice to give. But I’ve always believed that fortune favors the bold — and that showing up, even when it’s hard, often opens doors you never expected to find.