Founders Focus

Why TARS Exists: My Journey to This Moment

Before TARS Awareness Texas had a name, it was a feeling—one I couldn’t ignore anymore.

It was the feeling that comes when you realize the world is not built for your child. The feeling of sitting in hospital rooms, reading medical language that feels heavy and cold, and wondering why families like mine are expected to navigate everything alone. It was the quiet moments late at night, after advocating all day, when I realized that what we were facing wasn’t just rare—it was unseen.

TARS was born not from theory, but from lived experience. From love, fear, resilience, and the unwavering belief that families like ours deserve more.

As I began connecting with other families affected by TAR Syndrome and other disabilities, a painful pattern emerged. Families were overwhelmed. Resources were scattered or nonexistent. Awareness was limited, even within systems meant to help.

Parents were forced to become medical experts overnight. Children were navigating a world that wasn’t designed with them in mind. Support often depended on luck, location, or who you knew—not on need.

What wasn’t working was clear: families were being asked to carry too much, for too long, with too little support. There was a moment when this could no longer stay personal.

It wasn’t just about my child anymore—it was about every family quietly struggling behind closed doors. That was the line in the sand. I realized that knowing these gaps existed and doing nothing about them was no longer an option.

The idea became a responsibility. If I had the voice, the drive, and the heart to act, then I had an obligation to do so. TARS Awareness Texas was created to be more than an organization—it was built to be a home. The name matters because it reflects exactly who we serve while leaving room to grow. TARS stands for visibility, advocacy, and strength in the face of rarity. It stands for families being seen, supported, and included.

From the beginning, TARS was grounded in clear values: compassion, inclusion, education, collaboration, and hope. Our message has always been simple but powerful—Rare but Strong. Starting TARS was not easy.

There were moments of doubt—times I wondered if I was doing enough or doing it right. I underestimated how emotionally heavy this work could be and how much patience it would require. What surprised me most, though, was the kindness. The families who reached out. The supporters who said “me too.” The realization that when you speak openly, others find the courage to speak as well.

TARS was never meant to be built alone. From the start, I knew this mission required strong leadership, shared vision, and deep trust. Building a committed board and leadership team ensured that decisions weren’t just emotional—they were thoughtful, sustainable, and aligned. This team believes in the mission as deeply as I do. That shared purpose is what allows TARS to grow with integrity.

Today, TARS Awareness Texas is growing into exactly what it was meant to be. We are building educational resources, supporting families, creating inclusive community events, partnering with researchers, and advocating for meaningful change. We’ve launched awareness campaigns, books that reflect our children, and programs designed to bring comfort, visibility, and connection.

The community response has been overwhelming in the best way—proof that this work matters. In the short term, we are focused on expanding outreach, strengthening programs, and deepening community connections. Long term, the vision is bigger: broader awareness, stronger advocacy, and a future where rare families are no longer navigating alone.

There is room for everyone here—families, volunteers, partners, advocates. TARS grows stronger when the community grows with it. I am endlessly grateful—to the families who trust us, the supporters who believe in us, and the team who stands beside me.

This blog is an invitation. To follow the journey. To learn alongside us. To be part of something built on hope and heart.

Because awareness changes lives—and together, we are Rare but Strong.